Saturday, June 25, 2011

Some M.D.s on the yeast/candida issue

Early on after we got the autism diagnosis, I decided not to pursue the yeast angle. There are a lot of people who think that yeast overgrowth is either a cause of autism or else that autistic children are uniquely susceptible to these kinds of issues and/or their symptoms are exacerbated. My non-autistic son has been having a lot of issues for the last couple of years (pretty much chronic diarrhea/IBS), and I have tried nearly everything except the anti-candida diet.

So I did some digging, and I found this document from the Institute for Functional Medicine. "Functional Medicine" appears to be a movement within conventional medicine that attempts to provide new ways to help individuals with chronic disease. This institute is accredited to provide continuing medical education credits to physicians who study with them, so this made me especially curious to see what they have to say.

Anyway, one thing that I like about this document is that includes some meal suggestions, which is nice.

I have a couple of problems with trying to decide how to implement this. The first one is that if your child has mitochondrial issues, then you have to make sure they get adequate energy, and eliminating starches could be a serious problem. I would not eliminate starches from the diet of a child with suspected "mito" without talking to an actual mitochondrial specialist. Since we think T may have an issue here (testing still pending), I am unsure how I could implement this anti-candida diet (primarily for S's benefit) while still making sure that T gets ample carbohydrates.

The other problem is that if you have bacterial overgrowth rather than yeast overgrowth in your intestines, it appears that the FODMAPs approach may be better for you. Here is a helpful handout on that. I do not believe you can truly combine both approaches unless you actually move to something very close to a zero carbohydrate diet, because most of the vegetables that are allowed on the anti-candida diet (because they don't have simple sugars or starches that yeast like to eat) are disallowed on a low-FODMAP diet (because they contain certain complex sugars -- "oligosaccharides" -- that bacteria like to eat).

Friday, May 13, 2011

Mitochondrial Dysfunction ...

Well, I finally initiated mitochondrial testing on T a few months ago, and the initial results are back, and they were abnormal. In case someone else may find this helpful, I'm going to reprint the results I got at the end of this post, with names removed.

If you have a child on the autism spectrum, and you have not yet seen or heard anything about the pilot study done at UC Davis that tested 10 kids on the autism spectrum and found dysfunction in 8 of them, then you should read this article from Neurology Today describing the study. (Google will also turn up a whole lot of other news articles on the study, it made a pretty big spash.) Here is a quote from the article, which also quotes the study itself:

The children with autism had evidence of mitochondrial abnormalities across several tests compared to the controls. The mitochondria of the autistic children had reduced nicotinamide adenine dinucleotide oxidase activity, an average of 4.4 versus 12 for the normal controls (p=.001). Six of the 10 autistic children also had lower complex I activity and eight of the 10 had higher plasma pyruvate levels than the controls. By contrast, only two of 10 had higher lactate than the control children. The mitochondria from the autistic sample also had higher rates of hydrogen peroxide production compared to controls.But with all of these findings there is still no indication, at least from this study, whether these mitochondrial abnormalities are “a cause or a consequence of another process that accompanies autism,” said Dr. Giulivi. Altered energy metabolism, she explained, “may influence the social and cognitive deficits in autism.

“Mitochondrial dysfunction could greatly amplify and propagate brain dysfunction, such as that found in autism, given that the highest levels of mitochondrial DNA abnormalities are observed in post-mitotic tissue with high energy demands (such as the brain),” said Dr. Giulivi.

The plasma pyruvate and lactate-to-pyruvate ratios suggest pyruvate dehydrogenase (PDHC) deficiency and indeed when they looked at PDHC complex activity they found half the levels in autistic children than in the controls. Defects in PDHC lead to problems in energy metabolism because pyruvate is one of the main fuels for mitochondria.

These mitochondrial problems can create less capacity for the cells to produce ATP, the energy currency of the cell that pays for all cellular work. In the brain, as well as heart, ATP only comes from mitochondria. (Outside of the brain, lymphocytes can take their energy from mitochondria and other independent pathways.)

Although I had been thinking about mitochondrial issues for some time, it was really that study that prompted me to finally take T and have him tested.

I should say that the kind of testing that the doctor usually does initially costs thousands of dollars, but as T seemed "stable," and we were uninsured, we have been piecemealing the testing. We started with buccal swab testing, because it was available for free, thanks to the fact that the doctor we went to see is working with a researcher who is doing a study. The "gold standard" for a long time for a mitochondrial diagnosis has been muscle biopsy, which is extremely invasive (and expensive!). A very small sort of pilot study however recently suggested that the buccal swabs are almost as accurate, maybe as accurate. Read more about that here:

If you have a kid with a mitochondrial dysfunction, it has a lot of implications for how you care for them. First, there are supplements (often called the mito cocktail) that can help some kids. But secondly, there are things you have to be extra careful about:

1) avoid fevers. Fevers consume a lot of energy, and that means they can cause a lot of damage. This is the mechanism by which vaccines can become a problem, if they cause a high fever.

2) avoid the heat, because temperature regulation consumes a lot of energy. I have read about cooling vests and cooling hats that might be helpful.

3) be careful about anesthesia. I don't know the details, but it can be dangerous also.

4) keep them very well hydrated, and they may need nutritional intervention.

That's about all I have time to share today.

Here is what the doctor sent me:

Hi --------,

Well, it looks like [T]'s swab studies were abnormal. See below. Although __________ would like to repeat them just to confirm the abnormalities, they are suggestive of mito dysfunction.

Having said that, I think we should repeat them, and look to get the other first Tier of tests on him (lactate, pyruvate, coQ10 and carnitine). Once they are collected we can start him on the cocktail. I’ve seen a number of the recent ASD kids who have abnormalities on their enzyme studies do much better on the cocktail.

Let me know if you have questions.


________________, MD


[email from researcher who did buccal swab testing, to doctor, who kindly forwarded it to me:

Dear [Doctor].

My findings with [T]'s buccal swabs revealed a significant deficiency in his buccal complex IV activity (at roughly 26% of normal control levels) and normal levels of his complex I activity. His overall buccal mitochondrial content (as gauged by the activity levels of mitochondrial enzyme citrate synthase) was also above the control range suggestive of an adaptive response to a mitochondrial bioenergetic abnormality.

Given the possibility of shipping and handling effects, the extreme lability of these enzyme activities as well as the extreme heterogeneity of this kind of mitochondrial defect, I would recommend retesting a new set of buccal swabs from [T] within the next few months to see if the deficiency in his buccal complex IV activity reported here is indeed a repeatable finding.

Thanks as always for the opportunity to analyze your patients.

Yours truly,

[researcher doing the testing]

Wednesday, April 20, 2011

more funny things that T said

This morning, T came running into the kitchen to show me his Mr. potatohead: "Mommy, that's a CHOCOLATE potatohead." I said: "That sounds yummy. Are you going to eat it?" "No. It's just a potatohead. It's not chocolate, or a potato."

Monday, April 18, 2011

everything's gonna be OK (verbal at 4)

I hardly ever post any more, and I think I need to explain that it's because now I know that T is going to be okay, and I have been able ... SOMEWHAT ... to move into something like a more normal existence. I'm not sure how many people stumble into this site looking for answers, but I want to share for the record just how great T is doing now that he is 4 (birthday Feb. 24), because when he turned 2 I was really really scared.

His eye contact is not great, and he says some odd things, but he is quite verbal. When he gets mad, he says, "Mommy, go away! You'd better get out of here." When he's tired he says, "Mommy, pick me up and I will close my eyes!" He can answer "where" and "who" questions, and he's ALMOST mastered "why" and "because" and "how."

Does he still happily play in the sandbox for a really long time? Yes. But earlier today, he ran into the house crying, and said: "I need a napkin!" I said, why? he said: "S dumped water in my sand. I need a napkin to dry it off. Dry it off, mommy!"

The other day he said: "Mommy, I wanted some berries and you said no, and I was really SAD! But then you gave me some and now I am happy!"

Quirky? Definitely. But he's going to be okay.

Tuesday, January 4, 2011

observers and eye contact

I haven't posted in a while ... I wound up with so many posts saved up in my head that I couldn't get them all down. But this I had to post, in case anyone ever reads it. In this study involving bonobos (a kind of primate considered by many to be the most similar to humans), the authors state that a bonobo was far more likely to make eye contact if there was no third individual observing. That is, if a third bonobo was looking at them, the first bonobo was likely to turn away from a second bonobo, and not make eye contact. I find a lot of interesting things to think about in that.

Saturday, October 16, 2010

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.

Friday, September 24, 2010

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).