Meltdowns and a funny meltdown story

I've been reading and thinking a lot about meltdowns lately. T was being evaluated by the county the other day when he had a huge meltdown. The school psychologist wanted me to ignore him. That's not my way. Not that I have solved the Meltdown Problem, for anyone out there who is searching for a solution. But I don't believe in ignoring it.

I mean ... let's think about this for a minute. We have an autistic individual with a severe deficit in the domains of language and communication. He is communicating wants and desires and feelings ... so I should just ignore him?? This is one of the most absurd pieces of advice I have received since my son's diagnosis, in my opinion.

But this is apparently a widely shared view. I got the same piece of advice, I now recall, from some other county employee when he was 20 months old. I thought it was ridiculous then and I am really glad I didn't take it.

As it happens, T is doing GREAT despite his challenges. He makes terrific eye contact, hugs me and has even on occasion been known to tell me he loves me. Well, I can't take all the credit for that, but I personally think that if I had taken these people's ridiculous advice, he would probably want very little to do with me.

Anyhow, the point is that I HAVE been re-thinking this topic lately, and meditating on what causes these things which are so much more than temper tantrums. One thing I think is that T has the ego of an adult. According to this entry from the Eides, it may even be that autistic children wind up with difficulties acquiring language because the prefrontal cortex has matured too early. Apparently, an immature prefrontal cortex may (some people theorize) make it easier to learn some kinds of information. It seems that the prefrontal cortex is where a person develops their will and volition. See this, for example.

And this explains a lot. T's ego is very easily insulted. A lot of little kids get upset when you take their toys away, but for T it's more than the loss of the toy. I can tell that. It's the powerlessness of being at the whim and mercy of someone else that he finds galling and he just can't take it. If he wants something and it's not in the house, he wants to just go to the store and get it. Well, how can I blame him? I would too, but of course he's not old enough to drive. So there is the crux of it.

I'm still not sure what to do with this information, but these musings of the last couple of days made the following story much funnier.

T is very taken these days with a scene from Dora the Explorer in which Benny the Bull carries around an armfull of stuffed animals which he refers to as "my guys." At the dollar store, T grabs all these little Halloween characters and calls them "my guys" (which was very cute and funny), but then naturally he wanted to take them all home. My husband tells him he can only have one and buys him the bat. [insert meltdown here .. ok, the meltdown itself was not that funny.] But in the aftermath:

T (repeatedly): "I want the witch and the ghost and the pumpkin and the bear AND the bat, TOO."

Me: "You can't have everything you want."

T says : "I want to have EVERYTHING I want."

Truer words, never spoken.

Quick update re. prednisone

I just never seem to have time for blogging anymore, but I wanted to provide an update to my earlier posts about prednisone. T had another respiratory episode recently and had to do another 5-day course of prednisone. However, I did not see any obvious changes to his language abilities this time. I don't know if this is because my previous observations were a fluke, or perhaps because this time he received pills rather than liquid. That shouldn't matter, except that he chewed the pills instead of swallowing them, which means he didn't get quite as much of it. Perhaps my previous observations were coincidental, then, or had another cause. One other thing is that because of the timing of his first two doses of prednisone last time, there was a period of time in which he had much more prednisone in his system. Also, I still to this date have not had a single instance of the kind of joint attention he exhibited on that one occasion (where he pointed to an object and then alternated his gaze with me and the object, most remarkable).

About hormones and orchid children

One of my most recent (and yet also oldest) worries has been the hormones. So many autistic children have hormonal imbalances it seems, so we are not alone. But since he was an infant, T has had near constant erections. The pediatrician consistently discounted this as being of any significance, but I have a NT child also, so I know this is abnormal. Given the number of other kids with excess testosterone, I feel confident this is a problem although I have not bothered to have T tested.

I haven't had him tested, because it is expensive and will, I believe, lead nowhere unless I'm prepared to give him lupron, which some parents do. It is extremely controversial, of course, although I think it is very shocking the extent to which these parents are villified and mocked by others. There are several parents in my autism support group whose children hit puberty at the ripe old age of 8, and I think about this a lot as T gets older.

Am I possibly making a mistake by not addressing the excess testosterone? I don't know. It seems risky to me, there is just so much we don't understand. Although I understand that testosterone and other androgens can cause damage, it seems to me that for all we know, they might also be elevated for a reason. Maybe they have some other effect that is beneficial -- how do we know?

After hours of reading, I still don't really understand much, but I have come away with one fact that I found very interesting: According to Allan Mazur, although testosterone has been linked to problems like aggression, excessive risk-taking, delinquent behaviors, and the like, it turns out that these outcomes are all context-dependent. They are influenced by things like:

1) the quality of the child's relationship with his parents; and
2) the behaviors of his peers.

Dr. Mazur speculates that higher testosterone might confer social benefits under the right conditions, and I find that very interesting indeed.

(See this article, this article, and this book for more.)

Maybe this extra testosterone is just more proof that my son is an "orchid child," who just requires that extra care to bloom. In case you haven't read this article, an "orchid child" is not some weird new age thing, it means that some children have unique attributes that make them extra-sensitive to their environment -- they need a "SuperMom" -- without one they will not succeed, but with one, they may flourish even more than their peers (called "dandelion children" by the author).

Here's another interesting fact: although we tend to focus on testosterone as a cause of behavior, it appears that testosterone levels are also influenced by experience. Dr. Mazur calls it "reciprocal causation."

It's probably obvious why the "orchid child" premise is a favorite theory of mine.

At any rate, there certain seems to be a fairly wide consensus that autistic children are more vulnerable to environment than others, and a lot of researchers (like these) are busy trying to find that environmental trigger. I have read suggestions that there are links to stress in the mother, infections, vaccines of course (by some), autoimmune disorders, even cable television. But I wonder if they are focusing too much on looking for a physical trigger.

Dare I wonder aloud (so to speak) whether parenting matters? I know this is kind of taboo to bring up. If anyone is reading this, I'm sure you are saying, "but that refrigerator mother theory was discredited long ago." But I am not in any way suggesting that a lack of affection by mothers causes autism. But I DO wonder whether we don't have fewer REAL "supermoms" than we used to a few decades ago. Surely we do.

How many of our children are in daycare and preschools that are not top notch? How many mothers can afford to stay home or afford to put their children in really top notch centers with very low teacher to student ratios? We were advised by the "experts" to interact with T at least once EVERY 5 MINUTES. And even now that he is 3-1/2, not to leave him anywhere with a ratio of less than 3-to-1. Who can do that? Who can afford that?

30 years ago, were there more mothers living at home, with help? I'm not sure, but I wonder. Is it possible that more mothers had mothers, sisters, even older daughters? Is it possible that life was just radically different?

I have to wonder whether there aren't some children -- NOT all of them, they are clearly not all the same -- but SOME children, who require never-ceasing, endless, copious, exhausting superhuman amounts of attention. OK, I don't have to wonder, I KNOW it, because that is my son. He requires it or he will not develop. Were there times when I couldn't do it? You betcha. I'm not a refrigerator mom, but I am human, and I have limited resources.

When I get tired and I give myself a break it takes the blink of an eye for T to start "checking out." I don't know why. But the point is that he does. Less and less now, but he does.

Fortunately, I have been blessed enough with the ability to earn a true livable salary working only 15 hours per week, with an amazing husband who also works part-time and is a full-time, second primary caregiver the rest of the time. But where would we be without those things? I truly don't know, but in my heart I suspect very much that our T would be on the severe end of the spectrum.

Well, that's sort of an aside, and I'm sure that to some degree, I just want to believe that what I does matters. That it's in my power to just grab him and hoist him on up into high-functioning adulthood. I just do want to believe that, and I won't lie about that.

And I don't really know how severe T is or would be. I will say that Jayden, the star of "Bye" (which I really recommend if you haven't seen it, it is only 10 minutes long), whose mother says he was diagnosed as "severe," reminds me very much of T when he was that age. Not every minute of the day, maybe, but there is nothing about Jayden that is unfamiliar to me, although T was diagnosed with PDD-NOS instead of classic autism, and he was labeled "moderate" instead of "severe." A few months ago some county therapists expressed the idea that he seemed more "mild" to them than "moderate," so maybe I'd like to take some credit for that, but I don't know. I didn't have that much respect for the therapists in other respects, so I guess like everyone else I just believe what I want to believe.

So ... what does this have to do with testosterone? I don't remember anymore, except that I'm clinging to some way of looking at things that gives me the power to influence the outcome without giving my son drugs.

Maybe being a supermom could mean that his extra testosterone won't get him into trouble. Maybe if I could just do everything just right (OK, I know I can't be perfect) -- it will all turn out okay, or even better than okay.

On the other hand, I'll be singing a different tune if he starts sprouting body hair next month.

Maybe it WAS just chance ...

So after obsessing for a couple of weeks whether some fairly remarkable developments were due to fever or prednisone or chance, I must report that one of the 3 events has been at least partially duplicated without fever (I don't think) or prednisone. A couple of days ago, T began asking "What is that [sound]?" There's still something odd about the way he asks it, and it's really not clear that he is always really trying to find out the answer, but I'll take it. I'll take it.

As for the other 2 incidents, though, I have not seen either again. The one of course that stands out so clearly in my mind is him standing there, catching my eye and turning his head to direct my gaze to the object he was pointing out. Not once, but twice. In a row. It was simply breathtaking.

Although he points out objects a lot, I have never seen this before or since. Before Autism, it would never have even occurred to me that there was such a thing as joint attention, that it can be lacking. What a simple thing it seems to do, to meet eyes, to turn the head ... And even when it is missing, how subtle it is at first. You know something is not quite right, but you don't know what. And then you know, and it is so puzzling that someone can lack in this most basic of abilities. How can it be?

And it is so beautiful when you see it at last, after so long. And it is so painful to think that you might never see it again. It's kind of a cruel hope, maybe.

But clearly, there is no giving up now, because I have seen it. It is THERE, waiting to be unlocked. If only I could find the key.

PS about prednisone

T's regular pediatrician had something very interesting to say about my prednisone incident, which I don't think I've mentioned here yet. My husband is actually the one who spoke with her, but I think I've gotten all the major details correct.

According to my husband, when he brought up "the incident" with her (discussed previously in these posts), she was completely unsurprised. In fact, she told him that she had had another patient some time back who tried prednisone, and that it had worked marvels. However, there had been side effects, and she did not necessarily think it was worth it. She said that due to the side effects, they wouldn't use the prednisone at Emory, but she thought her patient had traveled somewhere else.

I'm a little unclear as to whether this patient was forced to discontinue due to the side effects, but the pediatrician says that the patient did retain some of the gains after stopping the prednisone.

I wish I knew more, but I'm not sure if our pediatrician really knows much more than that. If it's true, of course, I'm wondering why she never mentioned it before??

Also, what is it that might make it work, if it does? The folks at Johns Hopkins I thought were very certain that it wouldn't affect the inflammation that they saw in the tissue samples, although maybe I need to go back and read that more closely. I find it so striking, though, that elsewhere I read that prednisone is supposedly helpful for the kind of inflammation involved in asthma because it actually turns off the genes that trigger the release of the inflammatory chemicals.

My friend the infectious diseases doc also thought for that reason that it makes perfect sense that prednisone could have an immediate beneficial effect of this sort (not that she had any idea whether it did or not, you understand -- she is an HIV specialist, this is not her area) -- so it is hard for me to let go of this idea.

But still, assuming it's not that .... could prednisone have a hormonal effect rather than an anti-inflammatory effect (if those are even separate things)? Somehow, prednisone mimics cortisol in some sort of way. And I have read that autistic individuals appear to not experience the cortisol spike in the morning that others do.

I also read somewhere that cortisol has some sort of effect on calcium channels, which have also been implicated in autism, maybe that is relevant?

I think there's a lot of other stuff about cortisol and autism out there, and I just can't remember it all. But could there be some connection there?

I wish I understood all of these things so I could see how they all fit together ....

A follow up on febrile seizures

Anonymous pointed out in response to my last post that pediatricians by and large think febrile seizures are not a big deal, and that is certainly true. If you visit the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, you will find this fact sheet on febrile seizures.

It is clearly designed to reassure the worried parent. Here's what it says:

"Are febrile seizures harmful?

Although they can be frightening to parents, the vast majority of febrile seizures are harmless. During a seizure, there is a small chance that the child may be injured by falling or may choke from food or saliva in the mouth. Using proper first aid for seizures can help avoid these hazards (see section entitled "What should be done for a child having a febrile seizure?").

There is no evidence that febrile seizures cause brain damage. Large studies have found that children with febrile seizures have normal school achievement and perform as well on intellectual tests as their siblings who don't have seizures. Even in the rare instances of very prolonged seizures (more than 1 hour), most children recover completely.

Between 95 and 98 percent of children who have experienced febrile seizures do not go on to develop epilepsy. However, although the absolute risk remains very small, certain children who have febrile seizures face an increased risk of developing epilepsy. These children include those who have febrile seizures that are lengthy, that affect only part of the body, or that recur within 24 hours, and children with cerebral palsy, delayed development, or other neurological abnormalities. Among children who don't have any of these risk factors, only one in 100 develops epilepsy after a febrile seizure."

Does this sound reassuring to you? I can see why it might. After all it prominently says that "the vast majority of febrile seizures are harmless." That would explain of course why a pediatrician will always be dismissive if your child has one. That's because doctors play by statistics. If they have seen 80 patients with X, and they all turned out fine, you can bet that when your child shows up with it they will not think there is a problem.

I, however, am not reassured by this discussion. You know why? 2 reasons: 1) I review and edit corporate disclosures for a living, and for that reason, I am less influenced by "spin" than other people. 2) My son has autism, which means 2 things: a) I have already learned that when there is a 1% chance of something, that means it really can happen to my child. b) my child is in the group that is clearly described in the last paragraph as being at increased risk of epilepsy.

So, just for fun, I have re-written the last paragraph in a way that highlights rather than downplays the risk. I feel pretty confident that I have not altered the actual content. See what you think:

"Between 2 and 5 percent of children who have experienced febrile seizures go on to develop epilepsy. Some children who have febrile seizures face an increased risk of developing epilepsy, althouh the risk is small. Children who are more likely to develop epilepsy include those who have febrile seizures that are lengthy, that affect only part of the body, or that recur within 24 hours. In addition, children with cerebral palsy, delayed development, or other neurological abnormalities are also more likely to develop epilepsy. Other children, who don't have any of the risk factors listed above -- have a one in 100 chance of developing epilepsy after a febrile seizure."

Still think that they're not a big deal? Then you might ask yourself why they are still researching ways to treat and prevent them:

The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), sponsors research on all forms of febrile seizures in medical centers throughout the country. NINDS-supported scientists are exploring what environmental and genetic risk factors make children susceptible to febrile seizures. Some studies suggest that women who smoke or drink alcohol during their pregnancies are more likely to have children with febrile seizures, but more research needs to be done before this link can be clearly established. Scientists are also working to pinpoint factors that can help predict which children are likely to have recurrent or long-lasting febrile seizures.

Investigators continue to monitor the long-term impact that febrile seizures might have on intelligence, behavior, school achievement, and the development of epilepsy. For example, scientists conducting studies in animals are assessing the effects of seizures and anticonvulsant drugs on brain development.

Investigators also continue to explore which drugs can effectively treat or prevent febrile seizures and to check for side effects of these medicines."

Now, of course this correlation between febrile seizures and epilepsy does not mean that the seizures "caused" epilepsy. It could be, I suppose, that these children already "have" epilepsy.

But I don't personally find this very reassuring, because as far as I can tell, all seizures are caused by a disturbance to the balance between excitatory and inhibitory neurons. See this discussion, for example, which states:

The Neurobiology of Seizures
Seizures can be caused by multiple mechanisms, and often they appear so diverse that one would suspect that no common theme applies. However, one principle that is often discussed is that seizures arise when there is a disruption of mechanisms that normally create a balance between excitation and inhibition. Thus, normally there are controls that keep neurons from excessive action potential discharge, but there are also mechanisms that facilitate neuronal firing so the nervous system can function appropriately. Disrupting the mechanisms that inhibit firing or promoting the mechanisms that facilitate excitation can lead to seizures. Conversely, disrupting the mechanisms that bring neurons close to their firing threshold, or enhancing the ways neurons are inhibited, usually prevents seizure activity.

And I think I have pretty good reason to find this disturbing, since there is material all over the place about how autism is also caused by a disturbance in this same balance. For example, this review from the Simons Foundation describes a couple of recent studies from last year:

"Together, the papers add heft to the hypothesis that an imbalance between excitatory and inhibitory neurons underpins autism. The high prevalence of seizures in individuals with autism is seen an indicator that the balance between excitatory and inhibitory circuits has gone awry in people with the disorder.

"The possibility is emerging that subtle changes in the numbers and proportions of this category of interneurons may result in a range of neurodevelopmental disorders, including schizophrenia, bipolar disorder and autism," says Anthony-Samuel LaMantia, lead investigator on the PNAS study and a neuroscientist at the University of North Carolina at Chapel Hill.

The studies also emphasize the essential role inhibitory interneurons play in the development of proper circuitry in the cortex. Restoring circuit balance may therefore be a plausible way to reverse autism, suggests Hensch, a neurobiologist at Harvard."

Now, again, let me point out that what this suggests is that autistic individuals are more likely to have seizures. It doesn't mean that a febrile seizure made them autistic.

But it is a rather far leap from there to conclude that febrile seizures do not harm an autistic person, either.

And how many studies have been done to ascertain the impact of a febrile seizure on an autistic person? I haven't seen anyone mention any. How would you design such a thing, I wonder? Who is your control group? Autistic children who didn't have one? How would you even know for sure who had had a seizure, since so many of them are undetectable? And how would you match them, given that autistic children have so many different levels of functioning, comorbid conditions, etc.?

So for me, I am back to common sense. I already have some pretty good reason to think that there is something wrong in my son's brain. And it is clear that he is at increased risk for febrile seizures.

And I dig deeper, and I find this from the CDC (emphasis added):

The 5%-7% of children who have either a personal history of convulsions or a parent or sibling with history of convulsions may be at increased risk for febrile convulsions after MMR vaccination (184). The precise risk has not been measured, but appears to be minimal. On the other hand, febrile seizures occur commonly among children in whom measles disease develops, and the risk for acquiring measles is substantial. Therefore, the benefits of administering MMR vaccine to children with a personal or family history of convulsions substantially outweigh the risks and these children should be vaccinated following the recommendations for children who have no contraindications.

This doesn't sound unreasonable to me. But this is NOT the same thing as saying there are no risks to the vaccine, or that it is perfectly safe.

I just can't see leaving this decision up to some stranger in Washington DC, or group of strangers, no matter how many degrees they have. I just can't understand how anyone could take this stuff lightly, I really don't.

MMR causes seizures??

It is kind of weird how no matter what I am actually trying to research, it always seems to lead me to something new and disturbing about vaccinations. I have to date stayed completely agnostic about vaccines, but I have to say I have really read some disturbing things. While trying to research more about fever and metabolism issues, I wound up at this CDC FAQs about the MMRV.

What is really creepy is this:

Does the MMR vaccine cause febrile seizures?

Children who receive the MMR vaccine are more likely to have febrile seizures 8-14 days after vaccination than children who are not vaccinated at all. 1 During the 8-10 days after vaccination, about one additional febrile seizure occurs among every 3,000-4,000 children who receive MMR vaccine, compared with children who do not receive any vaccines.

....

How serious is a febrile seizure?

Although febrile seizures can be frightening for the child's caregivers, most are harmless. The majority of children who have febrile seizures recover quickly and have no lasting effects. Up to half of children who have one febrile seizure will have at least one other febrile seizure. But children with simple febrile seizures--the most common form--have no greater chance of getting epilepsy or brain damage than children who do not have febrile seizures. A study 1 showed that children who have febrile seizures after receiving an MMR vaccine are no more likely to have more seizures, epilepsy, or learning or developmental problems than children who have febrile seizures that are not associated with a vaccine.

Good Lord! I do not recall hearing anyone say this before, although I do have a brain like swiss cheese, so maybe I have already been here before. I don't know.

But ... seizures?? Really? And somebody is actually doing studies to try to prove that having seizures is not harmful? You have got to be kidding me.

Wow, how impressive has modern science become! Now they can prove that really, seizures are no big deal.

Only a real ignoramus would dare to worry that her child had seizures.

2005 neuroinflammation article

As Laura pointed out, my link to the neuroinflammation article is only to an abstract. The full publication is protected by copyright, and I don't think it is (legally) available for free anywhere on the internet. However, thanks to the Eide's blog, I found a copy of a second publication by the same authors that discuss the same findings. You can get your copy here.

Laura wondered whether the patients in the study included Hannah Poling. I can't really tell that, but the paper does tell us the following:

1) the brain tissues came from several different Brain Banks: Harvard, the University of Miami and University of Maryland.

2) There were tissue samples from 15 autistic individuals and 12 controls. 6 of the autistic individuals also had epilepsy. 3 of them had experienced regression, and it was unknown whether an additional 4 had or not; this states that 8 of them had not experienced regression. Their ages are really spread out. there's one 5 year old and one 44 year old. there are 7 tissue samples from children aged 7 to 10, one 14 year old, and 5 samples from individuals in their 20s.

3) An overwhelming majority of the autistic individuals had some mental retardation. Only one of them is listed as not having it, plus 2 that they weren't sure about. So that is certainly an important factor.

4) There were differences in the preservation of the different samples, and this affected which samples they performed some of the tests on.

5) It says "All autistic cases fit the diagnostic
criteria established in the Diagnostic and Statistical Manual–
IV and confirmed by the Autism Diagnostic Interview–
Revised (ADI-R).23,24 The ADI-R was administered previously
by researchers at the Autism Tissue Program (ATP) as
a criterion for inclusion in the repository. Additional clinical
and neurological information also was obtained from the
ATP."

So although I'm not sure about this, it seems that they perhaps all had classic autism. Most of them were mentally retarded, which tells us something, perhaps, but since they didn't all have regression, I don't think they were all Hannah Poling cases, since I thought that regression was a key piece of her case.

Most of this is very difficult for me to read, but one section was a little easier to slog through, so I'll provide my summary here for any who are interested. In this section they are looking for pro-inflammatory cytokines. They only had 7 frozen samples from autistic individuals, so this portion of the study only involved those 7 and were compared to 7 controls. 3 of the 7 autistic individuals had regression, 3 hadn't, and one it was unknown. all of them had retardation, except for one, as to whom it was unknown. 4 had epilepsy and the other 3 did not.

They do not really come out and say that the cytokines were really elevated in all 7 of the individuals, although in several places it sounds like they are saying that. For example, they say: "A statistical analysis of the relative expression of cytokines in autistic and control tissues showed a consistent and significantly higher level of subsets of cytokines in the brains of autistic patients." But this could just mean that the average level in the autistic group was higher than the average level in the control group. There is one other statement that makes it sound as though they found higher levels of inflammation in all of the autistic samples. It says: "We found that in the three regions studied, the antiinflammatory
cytokine TGF- 1 was consistently and significantly higher in the autistic group than in the controls."

At any rate, unless I am misreading something, I think they do make it clearer in the Johns Hopkins FAQs that they found inflammation in all of the samples: "However, the presence of microscopic and immunological findings showing neuroimmune reactions in all of our autistic patients and the cytokine findings in the cerebrospinal fluid (CSF) support a potential role for neuroglia and neuroinflammation in the CNS effects in a number of individuals with autism."

The FAQs point out that some of the samples had epilepsy and mental retardation, and that therefore neuroinflammation is not necessarily ALWAYS present in the brain of an autistic individual. However, I was really surprised to see that they failed to point out that by far MOST of their samples had mental retardation, rather than just "some." In fact, only one of the samples was definitely not mentally retarded.

The Eides blogged about this at the time and included pictures from the study that showed the cell destruction. You can see them here.

The study also reports that they found evidence of Purkinje cell loss in every sample but one 8-year-old. Previous studies had seen reduced Purkinje cell numbers, but this study is suggesting that the cell loss is due to the inflammation. I was able to figure out that the 8 year old without signs of Purkinje cell loss did not have epilepsy or regression, but he did have retardation. But it would appear that all of the other individuals without regression also had Purkinje cell degeneration, including the one individual who is listed as definitely not having retardation.

I have seen a lot of things suggesting that the reduction in Purkinje cells is congenital, but I think what this study is to strongly suggest that the damage is ongoing. I don't doubt that it started prenatally, but I think it's still going on. The study also found evidence of anti-inflammatory chemicals that are used to restore and repair, in the same area where the degeneration was going on, suggesting to me this sort of eternal battle going on, of cell destruction and rebuilding. This would explain a lot in terms of my personal experience. So often it seems like we have two steps forward, one step back. I have never thought of T as "regressive" exactly, but he does exhibit abilities one day that are just gone the next day. And it takes SO LONG for him to learn something, so many repetitions. Could this be because this horrible destruction and rebuilding is going on in there?

I don't want to believe it, but my instinct tells me it is. I really think it is.

then again, maybe it was the fever?

So my continuing efforts to figure out what caused T's startling "good communication days" last week has led me back to somewhere I've been before ... fever. I had temporarily forgotten that T had a fever, although when I first speculated that maybe the steroid was responsible, my husband suggested maybe it was the fever. I can't remember if I have blogged about this before or not, but there are some startling studies out there which seem fairly conclusive that a subset of autistic children, mostly high functioning, improve (sometimes substantially) when they have a fever. The Simons Foundation has a summary of a recent workshop (this year) in which various experts from across the country convened to discuss this phenomenon and brainstorm about what it could mean.

This report says that Dr. Zimmerman et al. at Kennedy Krieger (the same folks who found the neuroinflammation) found, in a study of 30 children with autism, that symptoms like irritability, stereotypy, hyperactivity and inappropriate speech improved during fever.

One of the most fascinating (out of many) things in this report is some discussion about pupil responses. Previously it has been found that the pupils of autistic individuals don't respond as much or as rapidly as those of other people. According to this report, it appears that the children who show improvements with fever are not only generally more high functioning, but they have less impairment in their pupil response. Although the developmental pediatrician described T as moderately functioning the county people seems to think he is high functioning. I don't know. But I wonder about his pupil response. Of course the pediatrician is supposed to check this during well baby visits, isn't she? but of course every regular pediatrician I saw was always very quick to assure me how "fine" T is/was.

Interestingly, I was so sure when he was an infant that he was cross-eyed, but the doctor kept insisting he was fine. And yeah, I did take him to an ophthamologist. Another waste of time and money. This fellow also assured me how "fine" T was. Well, he was a nice guy. Really all the doctors have been pretty nice. Just not exactly helpful.

But there are a lot of things in this article, too many for me to figure out and blog about right now. But among them was a discussion about the relationship between fever and prostaglandins and neural function in general. this caught my eye because, interestingly, prednisone suppresses prostaglandins.

this one report could take me days to try to parse through!

oh, to go back in time and study some biology and chemistry.

more on prednisone, inflammation

I actually just discovered some FAQs on the website of the Johns Hopkins Neuroimmunopathology website about inflammation in autistic individuals and it was VERY informative! I wish I had found it first! Here's my Cliff Notes version:

1) There is inflammation in the brains of autistic individuals, and it is chronic. Maybe not all of them, but many of them.

2) Inflammation can be both good and bad, because it is a way to repair. It could be that the inflammation is in response to something else that is bad.

3) Most of the inflammation is in the cerebellum, predominantly in the Purkinje cell layer and the granular cell layer.

4) They characterize their findings as "consistent with an active and ongoing postnatal process of neurodegeneration and neuroinflammation" -- i.e., they don't know for sure that is what is going on, but that is what they suspect.

5) Prednisone and other steroids would not have any impact on the particular kind of inflammation that they found. Their study did not find evidence of the kind of inflammation that prednisone and other steroids addresses.

So this would seem to suggest that if the Prednisone was responsible for the astonishing things I saw in T last week, it is not due to an anti-inflammatory effect.

However, I am nonetheless extremely troubled by these findings. It is extremely upsetting. These FAQs are making comparisons to horrible conditions like HIV dementia, multiple sclerosis, ALS and stroke. The idea that this could be going on in my child's brain is, I will admit, making me feel rather panicky.

It is so hard for me to believe that this is coincidental when my son has also been having breathing problems that are also apparently caused by excessive inflammation.

And now I am wondering about something else: migraines. He has for as long as he's been able to communicate at all indicated pain in his nose/facial mask area. I have repeatedly raised it with the pediatrician but she either blew it off or blamed it on a head cold. When I took him to the ENT for what was supposed to be a swallow study (a story for another day), the ENT also dismissed it, and said his nose looked fine. He keeps telling me "it's hurting," but when I ask him where, he puts his hands over his face. What does that mean?

Well, while trying to research asthma(!) I came across an article in Web MD suggesting that asthma may be linked to migraines. What I was really surprised by was a statement that migraines are also caused by inflammation. I haven't really dug into this, but the article says:

Asthma and migraine share many inflammatory chemicals that are released during an attack, Cady says. “There’s a host of common neurotransmitters that are shared here,” he says, including calcitonin gene-related peptide, histamines and cytokines. “Those are names for inflammatory chemicals that get activated both during asthma and during migraine,” he says.

I don't know anything about Cady except this says he's an MD with some sort of practice specializing in headeaches, but this is really interesting. I had assumed that T's pain was coming from sinuses/allergies, but this article says that this is an assumption many people mistakenly make, and that asthma can in fact be responsible for these kinds of headaches.

Could T be having an asthma headache?? How would I know? He has decreased sensitivity to pain ... might this make him even less communicative than he is already inclined to be about such a problem? Again, how can I know?

I have had such demoralizing experiences with the pediatrician, the ENT, the developmental pediatrician, the ER doctor. Oh,yeah, and the orthopedic surgeon. They either are not interested in the whole picture, too impatient to listen to the whole story, not entirely up to date on everything, or in too big a hurry to impart what I consider to be full information. In short, I have to date found consulting MDs is a good thing to do when your kid is threatened with immediate physical danger, but not terribly helpful toward trying to actually achieve something more. Now that I am paying it all out of pocket, I am having a hard time bring myself to make the appointement with the pulmonologist and/or the allergist.

Prednisone and inflammation and ... vaccines???

Well, my efforts to research whether prednisone really caused some remarkable improvement in my son and if so why have led me down a very strange and twisty path. I can't even remember how I got here, exactly. But I somehow found myself reading a very short article rather forcefully urging that vaccines do not cause autism by authors Jeffrey Gerber and Paul Offit. I guess everyone knows who Dr. Offit is by now, but if you don't, Wikipedia has a bio for him. The short version is he's a prominent pediatrician and vaccine expert at the Children's Hospital of Philadelphia, he's done work for the CDC, and he's quoted OFTEN about the whole vaccine issue. He definitely does NOT think there's any link between vaccines and autism.

Anyhow, this article, Vaccines and Autism: A Tale of Shifting Hypotheses, was fairly unremarkable to me, until I got to this:

Autism is not an immune-mediated disease. Unlike autoimmune
diseases such as multiple sclerosis, there is no
evidence of immune activation or inflammatory lesions
in the CNS of people with autism [38]. In fact, current
data suggest that genetic variation in neuronal circuitry
that affects synaptic development might in part account
for autistic behavior [39]. Thus, speculation that an exaggerated
or inappropriate immune response to vaccination
precipitates autism is at variance with current scientific
data that address the pathogenesis of autism.

This is the part where I started tearing my hair out, because I just got done learning all about how autism is an immune mediated disease with an autoimmune component. Or at least I thought I had.

Frustrated by electronic searching, I had finally checked out what seemed like some "real" medical texts from the Emory University Health Sciences Library. One of them is called Autism: Current Theories and Evidence, and it was published in 2008. It's edited by Dr. Andrew Zimmerman, who as far as I can tell is an extremely well-published, -credentialed, and -respected neurologist at Johns Hopkins and the Kennedy Krieger Institute. This text is part of a series called "Current Clinical Neurology," edited by another impressive sounding individual at the Harvard Medical School. Not exactly sketchy people.

Part IV is called Immunology, Maternal-Fetal Interaction, and Neuroinflammation. There are four different pieces in here on the immune system in autism and neuroinflammation! And on page 329, Dr. Pardo-Villamizar, a colleague of Dr. Zimmerman at Johns Hopkins, writes:

"Several studies showing peripheral immune abnormalities support immune hypotheses; however, until recently there has been no demonstration of immune abnormalities within the [central nervous system]. Recently, our laboratory demonstrated the presence of neuroglial and innate neuroimmune system activation in brain tissue and cerebrospinal fluid of patients with autism ...."

Wow, could there be a more direct conflict here? So I check the dates. The vaccine article by Drs. Gerber and Offit was received by the journal on August 25, 2008. But the research of Dr. Pardo (and Dr. Zimmerman) was published well before then. I found it in a 2005 article called "immunity, neuroglia and neuroinflammation in autism."

So I continue trying to puzzle this out: who's right, who's wrong, can these 2 things be reconciled? I pull footnote 38 from Dr. Offitt's article, the one that supports his statement that "there is no evidence of immune activation or inflammatory lesions in the CNS of people with autism." And discover that Dr. Offitt's support is a 2004 report from the Instute of Health called "Immunization safety review: vaccines and autism." The first thing that went through my mind: really? The most recent citation you can find on this topic is from 2004? And not even a "but see" or "compare"? There's absolutely no suggestion here that maybe somebody else thinks there IS evidence of immune activation in the CNS of people with autism. It's just shocking to me, since I'm staring at it.

I pull the 2004 report. One of the first things that I notice about it and am a little disturbed by is that apparently, this was written by a committee, and it met only once to discuss this topic. At least, it appears that way. When I turned to page v to see who was on the committee I see this: "The following individuals are members of the Immunization Safety Review Committee but were unable to attend the meeting on the topic of this report." That certainly makes it sound like there was only one meeting, doesn't it?

I also notice that they had a large number of additional people review and comment on the report before publication, and interestingly one of those people is Dr. Zimmerman. However, the report expressly states that they didn't necessarily take all the comments from everyone, so it's possible Dr. Zimmerman didn't agree with the report. I can't tell.

But the real important part is what I found when looked at the report itself. There is an entire section on immune dysregulation, beginning on page 128. I found this shocking, because this section is full of citations to study after study after study showing weird things about the immune systems of autistic children. The committee doesn't seem to actually dispute these findings. And here, I will readily admit this material was over my head. But as far as I can tell, what the committee has actually done is this:

1) they critique the various theories and hypotheses that researchers have tried to come up with to explain the obvious immune anomalies that have been observed (without suggesting any of their own); and
2) state that it is irrelevant that autistic children have these immune anomalies, partly because they can't figure out how it could be relevant, and partly because (supposedly) autistic children don't seem to be more prone to allergies.

They start with the sentence: "A large number of studies have suggested that immune dysregulation occurs in autism." The first few weird findings they cite in this report:

* Decreased lymphocyte responsiveness in the lymphocyte blastogenesis assay to PHA, ConA, and Pokeweed mitogen
* significantly reduced natural killer (NK) cell activity (Warren et al., 1987);
* decreased proportion of IFN-gamma- and IL-2 (Th1 cytokine)-staining CD4+ T cells in the serum;
* significant increase in IL-4-(Th2 cytokine)-staining CD4+ T cells

I don't claim to know what all this stuff is, except that it all relates to the immune system. Interestingly, the IFN-gamma jumped out at me, because the medical textbook I picked up on asthma says that asthmatic children had reduced IFN-gamma, but that's not relevant here.

Anyway, there's more, some of which does seem to contradict the above:

*increased levels of plasma IFN-gamma and IL-2 (Th1 cytokines)
* Increased production of serum IL-12, IL-6, tumor necrosis factor-alpha and IFN-gamma, and increased urinary neopterin
* PBMCs (peripheral blood mononuclear cells) from patients with autism, both at baseline and after stimulation with LPS (lipopolysaccharide) and PHA (phytohemagluttinin), secreted significantly more pro-inflammatory cytokines (TNF-alpha, IL-1beta, and IL-6) than those from healthy controls and normal siblings

Basically, they go on to review this bewildering array of findings after which I get the distinct impression that:

1) something is really weird about the immune system in autistic people; and
2) no one really knows why or what it means.

In other words, there is a problem and we are deeply ignorant about it. Their conclusion about these things is: "In summary, although several studies have reported abnormalities of components of the immune systems, they have often had contradictory results, making it difficult to achieve a consensus on any specific immune abnormality that might characterize autism. More fundamentally, it is not clear how these abnormalities might explain the CNS defects in autism or whether they could be secondary to GI or other complications of developmental disability."

But wait, there's more, because then I read:

"A large number of serum autoantibodies have been detected at a higher frequency in children with autism compared to controls. The antigens against which these autoantibodies are directed include a number of CNS antigens, such as myelin basic protein and neuron-axon filament protein, but they also include a whole host of other proteins, such as nerve growth factor, serotonin receptor, alpha-2-adrenergic receptor, tubulin, heat shock protein 90, and chondroitin sulfate."

Now, I've read some of this stuff before, but not in a government report. I am pretty astonished. I never really imagined there was anything like this in here. Especially since Dr. Offitt's report makes it sound as though there is no evidence of anything wrong with autistic individuals' immune systems, although perhaps I misread what he said. But wait,there is just so much more in here, I can't stop quoting it.

The report says: "This suggests that rather than there being a specific antibody response to [central nervous system] antigens, generalized hypergammaglobulinemia resulting from polyclonal B cell activation occurs in autism." I really don't know what they are talking about here, but doesn't it sound a lot like they are suggesting that somebody this "generalized hypergammaglobulinemia" is something to be unconcerned about? Doesn't it seem like it might be relevant to vaccinations? Ok, I'll grant you that maybe it's not. But they are just a little too dismissive for my tastes. They are dismissive of EVERYTHING, and that doesn't sound ... balanced and neutral.

Perhaps my favorite sentence is this one: "Of note in the abovementioned studies, these antibodies were all also found in the serum of healthy controls, albeit at lower levels—i.e., they were not specific to autism, making their pathogenic significance questionable." Well, I don't know about "pathogenic significance," but being just another stupid layperson, I am wondering why they seem to think that it doesn't matter that my son has antibodies at higher levels than everybody else. How can this be irrelevant?

it continued to cite all sorts of evidence of weird things involving the immune system in autistic kids, but they always managed to dismiss them in some way or another. There is an intersting reference to Wakefield, too, btw, but I am trying not to get too off-topic here, so I won't detail that, but you may want to read it for yourself.

I realize that they were focused on addressing one specific question, but in general, it felt a little rude and frankly insensitive to have them lay out all of these horrible sounding findings and then just sort of brush them aside as though they just didn't matter.

Some of their logic is hard for me to follow. Like: "As mentioned, autoantibodies to cerebral antigens, including MBP, have been found at higher titers in children with autism compared to controls. It is important to note, however, that these studies all evaluated serum and not CSF or brain tissue." Okay, so I'm not a doctor, and maybe this would make sense to me if I were, but why would there be autoantibodies to CEREBRAL antigens in your body but yet not in your brain? Am I the only one who thinks this sounds as though they are saying: "Well, sure, they have antibodies in their blood that are designed to attack brain tissue, but hey, no one has ever proven that any of these antibodies actually made it to the brain, so relax. they probably didn't."

And then I hit this: "Some investigators have tried immunotherapies, such as corticosteroids ...." THAT'S prednisone!! They go on to cite anecdotal evidence of both success and failure with this treatment. It is ironic that is what I am REALLY trying to research, but now I don't have time to read the references cited yet. It will have to wait to tomorrow.

I must say I am deeply troubled by this report. Whatever the Truth is about vaccines, there is clearly something up with the immune systems of autistic children, and it has been known for some time. I sort of knew this already, but it was only in a dim and hazy way. Not like this.

This report does not deny that something is up with the immune systems of autistic children. It concludes this section with the anticlimactic:

"By analogy to Rett’s syndrome, similar epigenetic mechanisms may be operating in autism that simultaneously lead to abnormal development in the immune and central nervous systems (Zimmerman, 2000). However, the deviations from expected levels in various in vitro laboratory assays in both these conditions may represent only a secondary effect of the developmental or behavioral abnormalities."

[Note the reference to Zimmerman? I assume that's the same Dr. Zimmerman who edited the book I've checked out, the one full of articles about neuroinflammation and immune dysfunction (among other things).]

So I am left with 2 questions:

1) Why does Dr. Offitt say "Autism is not an immune-mediated disease. Unlike autoimmune diseases such as multiple sclerosis, there is no evidence of immune activation ... in the CNS of people with autism," and why does he think that this report substantiates such a bold assertion? I grant you that the immune problems may go hand in hand with autism without "mediating" autism, but I do not get the impression that anyone understands enough to know for sure whether this is true or not.

2) Why didn't one of my son's doctors tell me ANY of this stuff??

OK, obviously I have more than 2 questions, and those are actually the least important ones. what I really want to know is:

1) what is wrong with my son's immune system?

2) how do I fix it?

Prednisone and language?

I haven't posted in a while, but I had to post about this, in case anyone is reading this. I had to take T to the ER last weekend for respiratory distress and they put him on prednisone. Within a day or 2, I had 3 remarkable experiences:

1) he asked me a question: "What is that?"
2) he commented to me: "That tickles!"
3) he exhibited true total joint attention: he pointed and said: "there's a mouse!" then looked at me, caught my eye and looked back to the mouse. then back to my eyes again, then back to the mouse.

At first I thought, wow he really is making progress. And to be clear, he HAS been making a lot of progress.

But then I thought, this is really dramatic, all at once. Could it be the prednisone (a sort of artificial cortisol)? I looked it up, and do you know that there ARE a lot of people out there who claim miraculous improvement in language when they put their autistic kid on prednisone? I don't really know whether this is real or not, but I am planning to find out.

I have been doing some reading about both autism and asthma lately, and there are some pretty striking links. It appears (to me) that it really is very clear that autism involves chronic inflammation, and so does asthma. So it kind of makes sense that prednisone, which is anti-inflammatory, might be beneficial also for someone with autism.

fyi, the prednisone was only for 4 or 5 days, so we're not on it anymore. but I am planning to find out more.

mirror neuron theory -- all fogged up

OK, that's a terrible pun, but it is so frustrating trying to understand all the research. Am I the only one who has been utterly convinced by the many that every child with autism has something wrong with his mirror neurons?? And yet, proving again how we do not know that which we think we know, today I read this summary of another recent study ... suggesting that after all, there is nothing wrong with the mrror neurons.

Neanderthal genes?!?

Many months ago I read what I considered to be kind of a weird essay I found on the web in which the author argued that many traits we consider to be autistic are, in actuality, remnants of Neanderthal genes. He (or she?) argued that Neanderthals had interbred with humans, and that this accounted for certain differences in some individuals. I dismissed it as pretty far-fetched.

Until this morning, that is -- when I read this Washington Post article that in fact researchers have apparently proven that Non-African humans did in fact interbreed with Neanderthals, and that except for those of us with African ancestry, between 1 and 4% of our genes can be traced to the Neanderthals.

And -- at least one of those genes -- CADPS2 -- has been linked to autism. Here's what my less than exhaustive search turned up about CADPS2 (from this article):

CADPS2 (also called CAPS2) encodes a protein that regulates the trafficking and release, or exocytosis, of vesicles containing cargo such as neurotrophic factors, which influence brain cell maturation and survival. To determine whether the absence of CADPS2 influences autism development, the researchers generated mice carrying a disrupted version of CADPS2.

The mutant mice exhibited normal visual, auditory, olfactory and motor function, all of which are normal in autistic patients. [EDITOR'S NOTE: I am astonished to read this. In my experience, most autistic children are impaired in at least some of these functions. I don't see how this is consistent with the sensory processing component of autism. Surely most of us have experience these issues in our children?] However, like autistic humans, CADPS2-deficient mice engaged in fewer social interactions with other mice, displayed heightened anxiety and reduced exploration in unfamiliar environments, and were hyperactive even in familiar surroundings.

Absence of CADPS2 resulted in cellular defects mirroring those frequently observed in the brains of autistic patients, such as reduced development and impaired survival of certain varieties of brain cells including some GABAergic interneurons and cerebellar Purkinje cells. Provision of brain-derived neurotrophic factor (BDNF), a protein found in CADPS2-associated vesicles in normal mice, rectified these cellular abnormalities.

I don't know what that means, but I guess it's time for me to learn to be a little more open-minded.

What the FDA Says About Vaccines

I found this quite astonishing presentation on the FDA website that talks about "adjuvants" in vaccines. This presentation was created by a special panel full of MDs and PhDs. I reprint here slide 7 so you can just read it for yourself, in all its glory.

Adjuvants: Potential Concerns/Risks
– Potentially antigen specific or non-specific potent immune and inflammatory stimulation
– Increased reactogenicity, local +/-systemic inflammation
– Unclear which, if any, correlate with risk of rare SAEs – Potential role in autoimmunity, short or long term?
– Antigen specific (e.g. neural or cardiac antigens) – Auto-immune/inflamm disease, e.g. SLE, “idiopathic”
– Are there plausible risks to developing immune systems?
– Reassuring observations to date:
• Even strong TLR/PRR signaling likely similar to natural infection (caveat w/ recent UK CD28 agonist trial)
• No strong evidence to date of major problems with compounds being most actively considered – but limited numbers w/ controls, long term active follow-up, or in children

Compare this from the CDC:

Which childhood vaccines contain adjuvants?

The adjuvant aluminum is present in U.S. childhood vaccines that prevent hepatitis A, hepatitis B, diphtheria-tetanus-pertussis (DTaP, Tdap) Haemophilus influenzae type b (Hib), human papillomavirus (HPV) and pneumococcus infection. This adjuvant has been used safely in vaccines for decades.

I think the CDC is just not telling us the whole story.

The Neck, the neck, the neck -- and a missed diagnosis

When T was a baby I used to say somtimes he looked like a little turtle. His head spent a lot of time tucked down into his chest. The more I look into this issue with nodding and shaking his head, the more astonished I am at how connected all of this stuff is. I just got done reading an astonishing chronicle of the functions of the neck muscles, and I can't believe how they touch on every single area of deficit T has: not just turning the head, but operating the jaw and the tongue (as in for speech!), raising the arms (as in for pointing!), BREATHING (yes, T has respiratory issues) ... according to this website, one of these neck muscles is supposed to turn the head in unison with eye muscles (could this be related to VISUAL PROCESSING ISSUES?) ... these muscles are critical to posture and coordination ...

Of course I knew that postural stability was an issue, and hypotonia was an issue, and that getting T's head up off his chest was an issue ... but I never saw how all of these things work together.

I am astonished. And yet I'm not. when T was a baby I used to worry that he had torticollis (wry neck), because I read about it in a baby book, and sometimes, he reminded me of that. Especially when he was upset he DID seem to twist off to one side or something.

But then there's this: According to this article ("Infantile Reflexes Gone Astray in Autism"), researchers suggest that at least some infants with autism still have "asymmetrical tonic neck reflex" and other reflexes that are supposed to go away. You know what? I already figured that out about T. In fact, I actually told his pediatrician that he seemed not to have outgrown certain reflexes -- including the rooting reflex -- even when he was still 2 years old. i.e., I could stroke his cheek and he would turn toward my hand and open his mouth.

When T was learning to walk, which required A LOT of help, he walked like he was fencing. We thought it was cute. Guess what these researchers describe:

"In another autistic child we studied we found that at 11 months of age the child was beginning to stand and walk. In this child also, the asymmetrical tonic neck reflex was still present so that the child overbalanced and fell in the direction of the outstretched arm."

Yep. That was T. Oh holy cow, that was T.

So ... I'm feeling kind of angry right now. Shouldn't SOMEBODY have figured this out? Shouldn't the DEVELOPMENTAL PEDIATRICIAN who charged us ONE THOUSAND DOLLARS to evaluate T have mentioned this? Shouldn't this man who sits on multiple medical school faculties, who practised at Harvard Medical School, who has decades of experieince, shouldn't he have FRIGGIN' MENTIONED this? Does he even KNOW?

I am pretty ticked off. Oh, the regular pediatrician just kind of acted like ... oh I wouldn't worry about it, he'll probably grow out of it kind of a thing.

These researchers have figured out how to diagnose this problem in very young infants -- we're talking 6 months old. And it would have caught T too. It really would have.

Still Can't Nod (But Tries!)

The twins turned 3 over a month ago and T still can't nod his head. He is ... YAY! ... finally getting the hang of Yes and No, but although he tries, he really CAN'T nod his head. I have been trying to help him do it and it's hard even with me helping him. I'm actually wondering if I should take him to an orthopedic specialist. He somehow picked up how to grimace not long ago, and you should see the poor little guy trying to nod. He just stands there with this grimace on his face and his head moves about a millimeter. Now that he's picked up this grimace, and I actually tell when he's trying to do it, and I'm amazed that he occasionally has tried to nod at me the last couple of days even when I didn't ask him to! (wow!) But the poor guy just can't do it (yet).

He had difficulty learning how to shake his head too. I spent a lot of time physically moving his head back and forth, but once he got it he really loved it and he sometimes even uses this now to express no. (yay!) I guess this is part of the hypotonia.

T had the typical unusually large head for the first 2 years, and I wonder if this just made it too hard for him to move it? Leading to those muscles just not getting used. I wonder too to what extent that the delay in these basic gestures (the head shaking/nodding) contributed to the delay in language?

I don't really know what all nodding might be good for now that he's learned how to say Yes. Maybe I should focus on something else instead. But my instinct tells me that he should be able to nod. I think it somehow be more important that it seems.

Paleo Diet v Specific Carbohydrate Diet

How astonishing! I finally got around to finding out more about the Specific Carbohydrate Diet, which so many people believe have helped their children with autism symptoms. Imagine my surprise when I discovered that it sounds almost exactly like the Paleolithic Diet! I am still trying to understand the differences among different carbohydrates, but according to the official website of Breaking the Vicious Cycle, which popularized the SCD:

The Specific Carbohydrate Diet™ is biologically correct because it is species appropriate. The allowed foods are mainly those that early man ate before agriculture began. The diet we evolved to eat over millions of years was predominantly one of meat, fish, eggs, vegetables, nuts, low-sugar fruits. Our modern diet including starches, grains, pasta, legumes, and breads has only been consumed for a mere 10,000 years....

How very fascinating.

Our foray into the Paleo Diet got interrrupted by a very fun birthday party, with not-very-paleo birthday cake, so I am putting off final analysis of the results.

Ari Neeman

It was recently brought to my attention that a young man with Aspergers has been appointed to the National Council on Disability. But apparently, many parents are upset because Mr. Neeman apparently has expressed concerns about people trying to "cure" autism instead of embracing autistic people for what they are. Apparently, a lot of people think Mr. Neeman is not really autistic enough and that he will somehow use this position to block genetic research. Mr. Neeman, however, it appears is worried that people are traveling down a eugenics path to prevent the birth of people who are autistic.

This seems to be such an unfortunate reason to fight Mr. Neeman's nomination. How wonderful that someone has been so successful despite the difficulties that come with autism. How I would love the idea that some day my son could form a nonprofit group that would fight for federal legislation to limit abuse of restraints in public schools, that some day my son could possibly be so proud of himself and who he is. That some day my son could form friendships with others like himself.

The National Council on Disability has nothing to do with searching for a cure, and everything to do with opening up society, with fighting to stop ostracism of the disabled, with championing the rights of the disabled.

Mr. Neeman is only 22! A child! Of course some of his opinions are over the top, of course he is too sure of himself.

And of course he's wrong if he thinks that most people with autism won't benefit from medical intervention. Most people with autism have a lot of struggles and difficulties in life that are 100% biologically based. Because -- although we like to forget this -- we ARE 100% biologically based. Everything we think, feel, do, is a direct result of something happening in our body, which includes our brain. So ... of course people who can't do the most basic functions that really are important to surviving and thriving in this world without needless anxiety and pain ... they deserve all the help we can afford to give them. Once they are adults they are free to refuse it, of course. And we must be careful not to pathologize temperament, which is of course also biologically based. It is a fine line.

But at the end of the day, does it really matter if Mr. Neeman is wrong about something? He has no power to keep anyone from searching for a cure. But he can do a lot of good. For starters, he can give a lot of people like me hope. And I really need that.

I say, let him be wrong. Let him be gloriously, wonderfully, totally wrong. Let him be on the council, and be wrong.

Imitating Facial Expressions

lately I've become re-concerned with this area. One of the hardest parts for me personally to deal with emotionally has been that toby does not react with distress when I am angry or scared or exhibit other negative emotions. Often, he laughs. As in, he laughs when I cry.

I've been thinking more about that lately, and I know that part of the empathy has to do with difficulty recognizing and imitating facial expressions.

When Simon was a year old we played a game where all I did was blink exagerratedly at him and he excitedly did it back. I tried it with Toby and all I got was a blank share, then he would drift off and look the other way altogether.

Until about 3 months ago that is. At over 2 and a half, he finally caught on to the blinking game. It was hard but I just kept working on it, up close to his face, and he got it. And now he loves it.

Could I do the same thing with other emotions? Can I teach him empathy?

Mitochondrial Disease -- a continuing question mark for us

Someone in a support group forwarded me a link to this recent interview about mitochondrial disease and autism. The first time I heard of "mito disease" (I think) was in relation to the Hannah Poling case. At the time, it seemed like some ultra-rare thing that surely didn't apply to us.

But the more I have heard about it the more I have wondered. For example, it seems to have something to do with, among other things, energy production, and T certainly has had a lot of low energy moments (punctuated by periods of hyperactivity). We thought of him as a "laid back" baby, actually. And the interview talks about these fevers ...

T DID have several viruses during the first couple of years and has had very high fevers before ... up to 105. For some reason, the pediatricians and children's hospital don't seem to take fevers very seriously anymore, which I find confusing.

I remember calling a friend once, freaked out and sitting in the bathtub with T ...

Well, anyway ... so I wonder again ... could this really apply to us?

I found this summary from the Cleveland Clinic in Ohio (whoever that is), and they state that "[d]epending on which cells of the body are affected, symptoms might include:

•Poor growth
•Loss of muscle coordination, muscle weakness
•Visual and/or hearing problems
•Developmental delays, learning disabilities
•Mental retardation
•Heart, liver, or kidney disease
•Gastrointestinal disorders, severe constipation
•Respiratory disorders
•Diabetes
•Increased risk of infection
•Neurological problems, seizures
•Thyroid dysfunction
•Dementia (mental disorder characterized by confusion, disorientation, and memory loss)"

Apparently, it doesn't show up the same way in every child. The interview claims that some kids with mitochondrial disease don't have regressions, like Hannah Poling had. (I've never been able to decide if T has really had "regressions.")

Certainly several of these things are familiar to us, like poor muscle coordination (hard to say what is 'loss' in a developing infant), visual and hearing problems ... does this include processing disorders?, developmental delays, gastrointestinal disorders, constipation, respiratory disorders, neurological problems, maybe even increased risk of infection ...

I don't know! The Cleveland Clinic claims the odds are about 1 in 4000, in the general population, which sounds pretty low. But the doctor in the interview claims that about 4% of children with ASD might have it. That's pretty high!

I think it's very expensive to try to get this diagnosed. There are some new blood tests, but they won't catch every possible type. Otherwise, from what I've heard, it's horrible. Muscle biopsies, spinal taps.

There's some sort of supplementation that folks in my support group call a "mito cocktail," but I don't know (a) how much science is behind it; (b) if it really works; (c) how expensive it is; (d) if it's potentially harmful ....

So many, many, many mysteries and they all seem so important. It's really overwhelming.

Got the memo -- Part II

It's been a bad week on the autism front. Can I confess if I haven't already that every couple of days we have a stretch that is so great I still entertain thoughts that maybe T doesn't really have autism? But it's like he turned 3 and it just flipped a switch.

We have been on a NEARLY (not quite) total media blackout with our kids, but as they got older I have let them watch videos just a couple of times. More on that later. But after seeing Bob the Builder maybe 3, 4 times? -- 2 days ago T started reciting, over and over again something like: "hey kids! you can join our fan club by calling 1-888 [repeats entire phone number missing like 2 or 3 digits] or go to www dot bob the builder dot com.

While lining blocks up in the window sill.

On THAT day, I was able to more or less keep my humorous outlook.

But at the beginning of this week the major meltdowns started. I THOUGHT we already had meltdowns, but this is a whole new level. Screaming like someone is torturing him while a stream of unintelligible and garbled words emanate between racking sobs.

And yesterday, the self injury commenced. First he was trying to hit me, and I said, no hitting, and then he just starting hitting himself. It was like ... a really really bad dream.

I gotta tell you that was pretty close to the worst moment I've had since this whole frakking nightmare started.

But I hate to leave this so dark, so I'll tell you that the day ended a little nicer.

Last night, as on so many nights, T just could not fall asleep. He was so tired he was even SAYING "you want to sleep," "you want to lie down," but then when I lay down with him he would nurse and nurse and nurse and then stop and gyrate around and then sit up and spout some of his favorite scripts or something he thought was funny ... until I had to call my husband in to get him. (I can't carry him in to my husband or he has a meltdown when I leave. But often he can leave me okay.) I had to give up because he's keeping S awake.

So we take out the melatonin again. Because it's been 2 hours since he has been obviously read to go to sleep but unable to.

After S falls asleep, part of me just wanted to leave T out there with Daddy, which I sometimes do. I'm just so tired. But that causes problems in the middle of the night. (another story)

So I go to get him. He looks like he's already asleep (as is Daddy) and I stare at him for awhile. I automatically note for the thousandth time his skinny little upper body and everything I've learned about hypotonia and lack of postural stability, and all my questions about how that has anything to do with the rest of it race through my brain again. And I wonder again what I need to be doing to build up his upper body strength and get him to lift his head up off his chest and look up and look around and it all just kind of whirls around in there until I push it aside.

I pick him up to carry him to bed and he cracks open his little eyes and smiles the most beautiful smile as he says, "It's Mommy."

And I guess it's going to be okay.

The Paleolithic diet -- worth knowing about

Well, I am still learning about this, but I am very intrigued by the so-called Paleolithic Diet. It seems that our ancestors during the pre-agricultural age didn't eat beans or any grains like wheat, rice, etc. Which kind of makes sense when you think about it, because these things are all grass, which is not exactly intuitively appealing. They also didn't do dairy. Can you imagine chasing and catching some giant wild animal ... and then MILKING it?? LOL. Although people have been drinking goat milk for a really long time, but not apparently during the paleolithic or before.

I think it's interesting because:

* well, the paleolithic diet happens to be, among other things, casein free and gluten free

* it is naturally low glycemic index, so it probably makes you less likely to get diabetes

* it is naturally high in fruits and vegetables, which we already know are good for us.

They DID eat a lot of meat though! The catch here, though, is that their prey animals were all wild game, so they were very lean. (similarly, the fruit was all wild, so it wasn't nearly as sugary as what you get in the grocery store)

Apparently this means also ... a diet naturally low in saturated fat.

So ... it's interesting to study. Here's a really nice, thoughtful article:
.

The major downside to this diet? no sandwiches! no crackers! no cereal! how does one feed a toddler/preschooler?? what do I pack on the way to the playground? so far my best ideas are: (don't laugh ...) beef jerky (if I can find some not full of horrible chemicals), dried fruit (if I can find some without too much sugar), and maybe some of those vegetable chips (you can get beet chips and sweet potato chips now with no trans fats, only canola oil). For crunchy snacks I guess you get nuts and maybe carrot sticks? crudite?

My problem is that we also suspect food sensitivities, so I think we need to do an "elimination diet" where you only eat certain limited things and then add foods back one at a time to see what happens.

Throw in the chronic constipation in one kid with frequent diarrhea in the other, and planning a diet/nutrition plan gets really complicated.

So I'm not sure yet exactly what I'm going to do, but in the meantime, I think the paleo diet is definitely worth knowing about.

Just Wanna Dance

I thought it would be fun to share some funny things my kids have done and said lately:

* My husband was trying to get T to eat while T was listening to his favorite music. Husband: "Do you want some sandwich? Mango? Kiwi?" T: "You want to dance!" T then proceeds to "boogie down." Hilarious.

* S hands me something small, green and suspicious. he says: "You [meaning S] don't know what THAT little crispy is." Me: "Where did you get it?" S: "It came out of your nose!"

* T, upon awakening last night at 1 am: "Having a picnic! The blue car is having a picnic!"

After hearing the Kinks sing "Lola" on the radio the first time, T had a total meltdown when it was over because I wouldn't play it again. "YOU! WANT! THE MAN! TO SING! LOLA!"

So I had to look it up on You Tube when I got home, and it is now his and S's favorite song. I did some soul searching, because, well, you know it IS about a transvestite which I can't really explain to them. But I decided that teaching and rewarding T's communication is really a lot more important. And anyway, Lola is an awesome song. Check it out: http://www.youtube.com/watch?v=Ixqbc7X2NQY&feature=related.

Still it is a little weird when this little 3 year old in the back seat starts belting out: "l-o-l-a, LOLA!" And now S has started carrying around his little guitar and strumming on it while singing it. It's ... astonishing and hysterical.

Got the memo

So it appears that T finally got the autism memo, LOL. He sure looked "atypical" a year ago, but now he is lining up blocks and spinning around in circles like a pro. So I guess now that he's 3 perhaps we're going to get some more stereotypical ... well, stereotypical behaviors. Ah well, I was pretty much out of denial anyway. Interesting thing about the blocks though: when I asked him what he was doing (and I had to ask him about 7 times before he answered), he told me he was making a train. Hmm.

A new drug ...

There is a new drug being tested for autism, according to this. It is supposed to supply some sort of enzyme to help digest proteins. The first article I read said the inventor/found claims that studies have shown that some autistic children can't digest protein. This was news to me.

Well, apparently, they are talking about the whole gluten-free, casein-free (i.e., gfcf, to those in the know)(and for some, soy-free) diet thing. But I was unaware of any studies that showed that any autistic children really were not capable of digesting these or any other proteins.

We're not GFCF, by the way. I tried it for a few months at first. It did turn out that T's twin brother really was having serious issues with dairy, because boy did he react when I did the challenge part of the elimination test (i.e., gave them dairy for the first time after weeks of no dairy), but T -- results were less clear. I had T tested for gluten allergy, and although I know those tests are not determinative, they were negative. I hated being gluten free. Turns out, I really really love gluten. who knew?

We went back on gluten. I couldn't tell any difference, honestly.

But I have continued to wonder. There sure are a lot of true believers in this diet. Can they all be wrong? Maybe I've made a mistake? I don't know.

Also, I have been struck lately by an amazing fact: our paleolithic ancestors did not eat any grains or dairy (or beans, either, by the way), at least accordong to the experts I've been reading.

In case you didn't know, supposedly we are still genetically identical to those ancestors, who turned eventually to the ways of agriculture when their meat supplies ran low. Before that, we didn't grow food or raise cattle.

And boy did they eat a lot of meat. It was about 50% of the diet, apparently.

And when we started eating all those grains etc., you know what? we got shorter as a species. we got some other diseases, too.

Pretty interesting.

So ... more to think about.

Not saying 'not'

since thinking about T's struggles with the word 'or,' I've also been wondering (not for the first time) about how he expresses negation. If Simon approached him and he wanted Simon to leave him alone, for example, instead of expressing that he did NOT want Simon to touch him, etc., he would say "want Simon to run." It's true he often says "don't want any" if I offer him something, but I think it's scripted, just a memorized phrase. I coached it by saying "you don't want any?" every time he rejected something (this took probably months, by the way). After many months of effort, he is starting to be able to use the word 'no,' but I suspect this may be scripted too. I made up games and songs and stories involving things I knew he already knew the answer to. I pointed to something blue, for example, and said, "is it orange?" "Noooo." "is it purple?" "Noooo." "Is it blue? Yes! Yes, it is blue!" I did with other things he loves and knows, like letters and numbers. Also names of people. Animals. Really, anything he knew the label for. But even when started to get that right, he didn't immediately get how it applied when I asked him, for example, if he wanted something. He's getting it now, but it has been hard.

And so I guess, in case there ever were any question about it, that T really does have autism. I found an abstract to a 1978 article called Linguistic negation in autistic and normal children:

"Young, severely maladaptive autistic children with some speech competence were compared to normally developing 3-year-old children of lower and middle class and 5-year-olds of lower class on negation tasks. All subjects were shown 12 sets of cards depicting negative contrasts designed to elicit semantic categories of nonexistence, denial, and rejection and were tested for production, imitation, and comprehension. Syntactic and semantic analysis revealed that autistic children were superior imitators and poor producers but showed skills in comprehension comparable to a 4-year-old's level of functioning. While retarded in some functions, the experimental group produced syntactic structures that were more rigid, suggesting the significantly greater use of imitation as a major strategy in linguistic coding."

I could have gone all day long without seeing the word "retarded." Do you know what I mean? Ah, the good-old 70s. While the grown ups were talking about love and peace, some of us lived in mortal fear of being accused of riding to school on the "special bus." Ah, third grade.

But I digress. (Who me? never!)

So, I try to find out more. I seem to have bitten off more than I can chew, yet again. I got this tantalizing power point in which every other word is some sort of specialized jargon. Oh, if only I could just download some sort of glossary into my brain so I could read this stuff. But I learn there is something called "intraverbal" behavior that these people seem to claim is somehow teachable. I think? and it's related to having problems with negation. Maybe some day I can figure it out.

Disjunction Junction

So one of the things that T is unable to get is the word "or." I say, do you want grape juice or prune juice? He says, "yes." I say, no, no, you need to PICK one. He says, "please." I pull them out and hold them both out in front of me and say: "Point to the one you want." "which one? which one?" he points at the grape juice and says "do you want grape juice?" then slowly swings to the other and says "or prune juice?" I coach him: "Say, 'I want THAT ONE!'" he does it, but ... okay, I'll spare you the agonies of this process. Suffice it to say, I think we're getting somewhere but it is DEFINITELY a process. It's been weeks. Anyhow, I think he will get it soon, largely thanks to my "story therapy."

Basically I write stories and tell them in which characters have dialogue over and over in situations that hopefully demonstrate what is going on. Our latest in the series features Veronica, whose cruel mother makes her choose between two items over and over again before she can do anything. first, she gets dressed, and has to choose shirts and pants and sweaters and socks and shoes and maybe a hat. there are always only 2 choices, and her mother always gives her the one she picks. He seems to love the Veronica stories so I'm hopeful it's because he's starting to get the "or" business.

But I've been wondering what this is all about. What does it mean that he doesn't seem to get this? Is it normal? Is it part of a communication disorder? S certainly didn't have this problem. I can't even remember how old he was when he got that he needed to point at what he wants when I offered a choice. It's been a long time. According to Laura Mize at teachmetotalk.com, typical children master this ability to choose between 2 options by 30 months. (see this helpful page with tips for how to speed things along.)

So he's about 6 months behind and counting in this, and I get the feeling that without my intervention ... well, there's no telling how long it would take him. Maybe he would just eventually get it? I dunno.

I wish I knew why it was so difficult for him. I did find an abstract of this paper: "Is this a dax which I see before me? Use of the logical argument disjunctive syllogism supports word-learning in children and adults." What the author seems to be saying is that both adults and preschoolers use process of elimination in order to map word meanings. In other words, if you use the word "dax" to refer to something in the room, and there are only 2 things in the room, one of which you've never heard named before, and one of which is a hairbrush, you will naturally say to yourself, "oh, she must mean either the brush or that thing. Since I know the word for brush is 'brush,' 'dax' must refer to that thing.

This is a pretty basic component of logical reasoning. Is it possible that there is something wrong with T's ability to engage in this kind of "disjunctive syllogism?" Is this why he didn't start learning language until I began this systematic effort to laboriously teach him language piece by piece? Is it related to his difficulty understanding 'or'? Could it be that his brain just doesn't do disjunctive?

Why I torture myself with these questions? I guess because it's looking like I can expect to get zero help from the county for T unless I go to the mat. And I really don't want to.

And part of me is getting really pooped out. Did I mention that the Emory Autism Center interacts with the autistic kids every ONE to THREE minutes over eight hours per day? Do you know how hard it is to interact with a kid every THREE MINUTES (never mind ONE!!)? When you have ANOTHER KID?? I do, thanks to my fancy new electronic timer. It ain't easy. OK, it's impossible. It really is. I just can't do it.

Am I really screwing up because I'm (largely) not succeeding at doing it? -OR- Am I killing myself by trying for no real reason, because maybe it doesn't make any difference? {are you impressed with the way I almost made my little digression relevant to the supposed subject of this entry?}

Of course the beauty of it all is that I will never, ever, ever know. Either way, I will never know whether anything I am doing made any difference or how much or if I am doing more than I need to or not enough. I will never know.

But here is one other not completely related thought: thinking about this apparently inherent tendency to think in the disjunctive reminds me of a lot of things I've read (but didn't understand) about non-duality or non-dualism. I would explain what that is, but like I said, I don't really know. You might check out the Wikipedia explanation. But the way I've chosen to interpret it for now is ... sometimes people tend to think in dichotomies, and they're not real, either because there is no true division between the two alternatives, or ... whatever. I don't really understand it. If you think you understand it, please let me know what you think it means.

But ... where I'm going here is ... could it be that some special individuals are just born without this tendency to interpret the world in dichotomies? The rest of us are certainly famous for our false dichotomies. And some of us are famous apparently for denying the existence of dichotomies the rest of us are pretty settled on. And even our computers think that way, don't they? with their zeros and ones. on or off. we love to see the world in pairs. stop and go. yes and no. mind and body. man vs. nature. young and old. we've even paired up colors, although we call those complements.

Could it be that this lack of the disjunctive is part of what has made so many autistic geniuses through history? Could it be that some people -- BECAUSE they are unburdened with (false) dichotomies -- are able to think "outside the box?"

Could it be that this tendency to think in the disjunctive puts the rest of us in the box?

Too Much Stimulation and Too Many Toys

I wonder, in the voluminous theories out there, if anyone has ever questioned whether autism rates could be up because we are just overstimulating our babies? I'm sure I didn't have a third of the toys as a child that my twins have had since birth. I'm not saying that having an object around that was deliberately designed to be fascinating could cause autism. But I can't help but wonder about kids on the edge. Kids that maybe could go either way. Was there a moment when T could have become NT but something tipped him the other direction? Was it that first day I put him in a bouncy seat so I could nurse his twin brother? What if I hadn't had a C-section and been horribly anemic? What if I could have carried both babies at once? What if I had carried him more, worked harder to get him to gaze back with me, worked harder to get him regulated, used less distraction to try to manage the difficulties in taking care of two newborns? What if he had been an only child? What if we lived outside in a tent, with no toys, no electric lights, no laptops, no trains, no traffic .... I know you're not supposed to ask yourself these questions, but it's so hard not to. Especially if you really want to know what it is. And I do. I really do. Well ... I know none of those things CAUSED autism, but they couldn't have helped, you know. What if the difference between today and yesteryears is that kids who were at risk had a better second chance?


what if there's nothing new causing autism, but there's less of the things that in previous years would have masked it or healed it?

Vitamin D follow-up

I skimmed the article that my pediatrician referred me to at the Vitamin D Council. I have to admit the author said a couple of things that bothered me. Granted, I did not read it deeply, so I may have glossed over some things.

But he suggested that there is some need to explain why identical twins are more likely to both have autism than fraternal twins. Really? Isn't the reason for that somewhat obvious? I will go back and read it again, maybe I misunderstood his point. But what is remarkable about this? Wouldn't you expect identical twins to be more similar than fraternal twins?

I was also bothered by his suggestion that african-americans "may be" more likely to have autism. I saw no actual data on this in his article, but I am pretty sure I read the precise opposite not long ago somewhere else, although maybe I'm mistaken about that. But he seems to be just guessing that African-Americans may have higher rates, and I did not like that. I found it particularly off-putting, actually, that his reasoning was partly based on an assertion that rates of mental retardation are higher among african-americans. I have no idea if that is true, but today, the majority of children diagnosed with an autism spectrum disorder are not retarded, nor do I think that the majority of retarded children have autism. So ... this left me less inclined to buy into his theory in general that Vitamin D deficiency might lead to autism or somthing that is autism-like.

But he pointed out that there seem to be more autistic children born in March, and that caught my attention, because my twins were born at the end of February. I haven't looked up the actual studies on this point yet, so I'm not sure if it's true. But did discover that there DO seem to have been a couple of small studies correlating autism rates with areas that are more cloudy or overcast.

It IS true that I was on modified bedrest and stayed in the house in the same lazboy chair for most of my last trimester. And it's also true that although I consumed gargantuan quanities of milk, I was carrying twins and wasn't taking Vitamin D supplements.

I started reading up some more, and I came across this article on Medscape: "Vitamin D Deficiency: Implications Across the Lifespan." I was struck by this statement:

"It has been shown that above 35° north latitude (Atlanta), little or no vitamin D3 can be produced from November to February."

I'm in Atlanta. So ... I looked it up. It turns out my house is actually at 33° 47' 50.1216," so ... what does that mean? fyi, the pediatrician told me some time back actually, that she thought we could not make enough vitamin d here in the wintertime, even if we stayed outside all day long. I'm just guessing that maybe she has a different opinion about how much of it we actually need?

Well, I can't really sort that out. And with regard to my pregnancy it's academic, because I rarely left the house. But it does make me wonder about whether we could get enough Vitamin D right now, if we went outside ... all day ...

A few other thoughts:

1. I was taking prenatal vitamins. However, it appears that some forms of Vitamin A really do interfere with absorption of Vitamin D, at least according to this report from the surgeon general. Apparently beta carotene is not a problem, though. I wonder what form was in the vitamins I took? I certainly have no idea.

2. I found out at my last doctor visit that I am calcium deficient. He actually said he figured I was probably Vitamin D deficient, because you can't absorb calcium efficiently if you don't have enough Vitamin D in your body. (again, see the helpful medscape article.)

3. The obstetrician sure did take a lot of blood while I was pregnant! Doesn't it seem like someone would have figured out if I was low on Vitamin D? Maybe not. I'll never know.

So ... I don't know. I'd like to do some more reading on it sometime.

But in the meantime ... my real question now is:

1. are we getting enough vitamin d?
2. is there any harm in giving T 5,000 IU a day, as my pediatrician recommended?

Well, I won't detail it here, but I think I am convinced that the answer to #1 is probably no. Even my physician thinks I'm probably low.

I think question #2 is maybe the most important then. How much can we safely take?

It really is possible to overdose on Vitamin D, and this can cause serious problems. According to the National Institute of Health Office of Dietary Supplements (who knew there was one??):

"Long-term intakes above the UL increase the risk of adverse health effects [4] (Table 4). Substantially larger doses administered for a short time or periodically (e.g., 50,000 IU/week for 8 weeks) do not cause toxicity. Rather, the excess is stored and used as needed to maintain normal serum 25(OH)D concentrations when vitamin D intakes or sun exposure are limited [11,90]."

-- Dietary Supplement Fact Sheet: Vitamin D.

But that number (50,000 IU per week for 8 weeks -- which is over 7,000 IU per day) refers to an adult. My son is only 2 (well, almost 3), so ...

To recap, my pediatrician suggeted 5000 per day. Is that really OK? I'm not sure. The NIH actually suggests that the upper limit for regular intake is 2,000 IU per day for everyone except infants under a year old. This is a lot lower than the pediatrician recommended, although again, she was talking short term use.

The NIH goes on to acknowledge that lots of researchers have challenged NIH's numbers as being too low. Apparently, clinical studies have demonstrated that as much as 10,000 IU per day seems safe in adults. However, NIH thinks that those studies were not adequate to assess harm, and that there are no studies assessing harm in children of increased levels. Still, they tell us they are considering whether to change the levels. I looked at their footnote -- apparently they have been considering this since 1997!

My pediatrician tells me they give children with rickets about 10,000 per day for months, and that I shouldn't worry.

I don't know. I am definitely going to up both boys to 2,000 IUs per day, though, since NIH thinks it's okay. They really have not been getting anything near that.

But as for the rest ... I plan to find out how much a blood test costs, how reliable it is, and look for more up to date information on toxicity levels in children. Stay tuned!