April is Autism Awareness Month! Monday, Mar 30 2009

Okay, let me first say that I have never been a huge fan of dedicating “months” to something. My take has always been “If it is important, it is always important.” The first month dedication I remember is Black History Month, which is February for those folks who live under a rock. I remember thinking “This is kind of stupid. Shouldn’t we learn black history in history class, since it is, in fact, history?” What I didn’t realize then was that I was learning black history, but the month was designed to make me more aware of certain aspects that some teachers might not share.

Understand that I grew up in the south. Here in little old Spotsylvania they didn’t desegregate schools until a few years before I started kindergarten. Now I was in elementary school, so I didn’t really feel the tension, and by the time I was old enough to notice it had mostly gone away. I say mostly because there are always ignorant people who say stupid and hurtful things. The key is to help educate them about their ignorance.

So Black History Month was a big deal, because it helped get the facts to a generation in spite of the prejudices of previous generations. I didn’t really understand it at the time, but I realize now that many of my opinions and attitudes toward African American culture were changed by what I learned during those months. The great thing is that I wasn’t changed against my will. I chose to change because I was taught the truth.

So, in the spirit of truth and liberation, I welcome April as Autism Awareness month. I hope you can use this month to dispel some myths about autism, or figure out a way to understand it a little better. The most important thing that I can say about autism is this: My child has autism, but autism doesn’t have him. He is more than his disorder.

On a final note, April is also Fair Housing month. This resonates with me for a number of reasons, not least because there is a good chance my son may be discriminated against due to his disorder. Remember that there are laws to protect those who cannot protect themselves. Put them to use and educate those who think they can take advantage of the less fortunate.

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The Organic Acid Test, Yeast, and the end of the Feingold Diet. Tuesday, Mar 17 2009

Yeast!

Well, we got the results of our Organic Acid Test back a couple weeks ago, and have made some decisions based on the results. For those folks who don’t know, the Organic Acid Test is a urine test performed by a lab. We used Great Plains Labaratory, and they are great. The test gives you a “metabolic ‘snapshot’ based on those products the body discarded during urination” according to their website. This snapshot gave us our first inkling that Feingold was not the right diet for us.

A few words about Feingold. I have been resistant to the stricter diets because I thought there was no way we could handle the additional stress and preparation. I was totally wrong. Once we decided to do it, it became possible. I won’t say it was easy, but it is manageable. That being said, Feingold is a good diet and works for many kids. We did see improvement, and I attribute a great deal of that to getting the crap out of Raymond’s diet. Without artificial preservatives and dyes, Raymond’s metabolism started getting back on track. However, it did not solve as many issues as we had hoped, so we were still searching.

So, we sent Raymond’s urine to Great Plains, and they sent us back a comprehensive report. Oh, and our insurance company did pay a good portion of this, so it was not as expensive as some tests. At any rate, the report shows that Raymond has increased 3-oxoglutaric acid, which indicates a possible yeast overgrowth. We knew he had yeast, but didn’t realize it was quite so high. Also, a number of the other test results were consistent with leaky gut and issues with oxalates.

So what are oxalates? Naturally occurring substances in foods, similar to salicylates. Vegetables produce them naturally, and they are present in a large number of foods. Some of the indicators that clued us in were high levels of oxalic acid and low ascorbic acid. Low ascorbic acid means you should supplement with vitamin C, right?

Wrong. The way Raymond’s gut is functioning, vitamin C supplements would aggravate the problem. He can’t absorb them, and the oxalate issue will be aggravated by supplementing with C. Other factors in his metabolism show low levels of pantothenic acid, or B-6, and elevated kynurenic acid, which requires B-6 for metabolism. However, we had him tested for B vitamins several months ago and found out he cannot metabolize them properly, so supplementation is not going to fix the problem.

Quite the impasse. Kelly and I have spent the last couple weeks wrangling with it and doing more research. Our pediatrician has been unavailable due to some unfortunate family matters, which has left us to our own devices. We watched his behavior get more “yeasty” and decided to do a yeast detoxification ourselves. We typically treat for yeast with homeopathics, but they were working too well. By that I mean that yeast was pouring out of Raymond, so badly that his skin was cracking open. That is just not sanitary. We almost kept him home from school some days because the tops of his hands were red and cracked open. We put aside the homeopathics and went for a more direct method of yeast killing.

Our choices were limited, especially since Raymond cannot tolerate any prescription antifungals, so we decided to use oil of oregano. Oil of oregano is a powerful antifungal and high in antioxidants. We have used it before with major success but also negative side effects, which I have determined to be my fault. The last time we used oregano oil, we started off with 1 drop per day. However, as it started killing off yeast, I kept increasing the dose. It got up to 2 drops twice a day. We did kill off a ton of yeast, and Raymond even passed what we believe to be a nest of parasites. It was a large clump of what looked like eggs, and it totally freaked his grandmother out. However, the down side is that Raymond began vomiting uncontrollably, and his vomit smelled like sour beer. It was the nastiest, yeastiest smell I have ever encountered. So, we stopped the oil and his behavior and attention improved dramatically. We know it works, but we have to take it slow.

First off, we made sure he was getting his probiotic regularly. That is key when killing yeast. If you don’t replace the yeast with good gut bacteria it will come right back. We gave the increased probiotic a few days to start working, and then we started his Vege Greens. Once you kill yeast, the body has to bind it with something to pass it. We used activated charcoal in the past, but upon further research we discovered we could use concentrated green veggies to bind and remove the die off. Naturally we went back to our old pal Vege Greens, as it has a ton of other benefits. In fact, I’ve posted the label below so you can see what’s in there.

Vege Greens Label

Finally, after a few days of reintroducing Vege Greens and checking for changes, we added the oregano oil. Just one drop every other day. It is pretty strong stuff, so I put it on half a bagel and then cover it with smart balance spread, and Raymond eats it no problem. Then, 45-60 minutes later I give him his Vege Greens. We have been on it for 5 days now, and die off started one day after the first dose. However, it is much gentler this time. We are not getting the crazy runny stools or vomiting, so I think we are handling it well. We may up it to one drop once a day after a couple weeks if he tolerates this, but only if we have no other die off issues.

Also, we are looking into the low oxalate diet, but I’ll have to write about that some other time. We think that might address a wide spectrum of issues, so we are definitely going to try it. We want to be prepared, however, like we were with Feingold, so we are still reading and researching. Hopefully by the weekend we will be ready to roll with it.

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Diagnosis: Our first visit to Georgetown Tuesday, Mar 10 2009

Our first visit to The Georgetown University Hospital‘s Autism and Communication Disorders Clinic did not happen overnight, so I’ll start at the point when we began looking for a place to take Raymond for a diagnosis. Shortly after Raymond’s third birthday, my wife and I were 99% certain that Raymond had autism. We were so certain that we sat down with our pediatrician and asked her where we should take Raymond. She suggested several places, like Kluge at Charlottesville, MCV in Richmond and Georgetown. My wife put it best when she asked our pediatrician “If you had a child, where would you take him?” Our pediatrician answered without hesitation “Georgetown. I’ll write you a referral.”

However, like all good things, we had to wait. We found out they wouldn’t have any openings until the spring, so decided to try a different route. In February we went to see Dr. Mary Megson in Richmond, a DAN! doctor and wonderful woman, who I will be writing about in greater detail in a later blog post. She gave us a diagnosis of infantile autism. We were relieved! Now we could get our insurance company to pay for needed services, like speech and OT. Unfortunately that was not the case.

So, we called Georgetown again. They were booking appointments then, so we got 2 appointments in late May and one in early June. Let me explain why it takes 3 appointments so folks don’t think they are trying to get extra copayments out of their patients. The fact is that the Autism and Communication Disorders Clinic uses a multidisciplinary approach, so Raymond would go through 4 seperate evaluations. The team consists of:

Dr. Stephen Mott, developmental cognitive neurologist and chief of the division of child neurology
Dr. Diane Jacobstein, clinical psychologist with decades of experience
Rita Solórzano, speech language pathologist
M. Janet Thomas, occupational therapist.

During the first two appointments, the team evaluated Raymond. First up was Doctor Mott, who did a wonderful job asking questions and discovering more about the physical side of Raymond’s disorder. Next up was Rita, who managed to elicit some response although by that time of the day Raymond was not in the mood to sit still. Our second appointment started with Dr. Jacobstein, who did a wonderful job engaging Raymond. We finished with Janet, who did the best she could evaluating Raymond in spite of the fact that he was not cooperative.

Let me backtrack for a minute. When we first met the team, we laid it out pretty clearly that we thought our son had autism. My wife said “Don’t send us home with a diagnosis of PDD-NOS, because that doesn’t help us.” We knew this from fighting with our insurance company. PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified, had the potential to be denied by our insurance company. Our insurer, Guardian, who will be prominently featured in a later post, specifically excluded any sort of therapy for a developmental delay or disorder.

So, the third visit to Georgetown was for our diagnosis and recommendations. We were all seated in a conference room, and we were given our report. It was pretty large and indepth, clocking in at 23 pages. Although we knew in our hearts that Raymond had autism, that didn’t make it much easier hearing it said and seeing it in print. However, the team was very tactful and sensitive in the delivery of the news, which did help a great deal. All told, Raymond was diagnosed with 5 challenges. Autism, Dyspraxia, Hypotonia, Hyperlexia and Transient Alterations of Awareness.

The Autism diagnosis is familiar to most folks, but I do want to mention one thing. Raymond was diagnosed with autism despite the fact that he did not have many of the behaviors commonly associated with autism. However, Dr. Mott was very clear and specific when delivering the diagnosis. Per the DSM-IV, atypical autism is still diagnosed as autism, not PDD-NOS. PDD-NOS is specifically reserved for children who did not meet the criteria for autism, not kids who were atypical but still met the criteria. Dyspraxia, sometimes labeled Apraxia, is a motor planning and sequencing disorder. That was really the silver bullet we needed for our insurance company to start paying for OT. Hypotonia is low muscle tone, and is common in special needs world. Hyperlexia could be either a boon or a curse, as it means that Raymond could read before age 3. If he could decode the words and understand them, it was a boon. If not, it could be indicative of other issues. Finally, transient alterations of awareness related to Raymond’s tendency to stare off into space. There was a real concern that Raymond might be having “absentee seizures.” I’m pretty sure they aren’t called that any more, but I can’t quite remember what they are called. At any rate, that meant we had to do a 24 hour EGG with Raymond to see if he was seizing. I’ll go into details about that later.

The best was yet to come. The 23 page report contained a thorough evaluation of Raymond, but it also contained 6 and a half pages of recommendations! We were really blown away by the thoroughness of the teams’ suggestions. I’ve excerpted some of them below.

7. Raymond should continue with speech and language and expressive skills and pragmatic language skills and his oral communication intervention to maximize motor issues need further exploration and appropriate intelligibility his speech intelligibility.

8. Raymond will benefit from having a strong home component as part of his therapeutic approach. The links between the classroom, therapy sessions and his parents at home is critical for carryover of skills from one environment to another.

9. Model two and three word phrases for Raymond to help him understand how to combine words into novel combinations. At present,he is using single words and rote sentences or phrases but does not appear to be using phrasesthat he has constructed himself. Use combinationssuch as: object-action (monkeywalk), action-object(Fly plane), object preposition(ball in), object-function word (cookie,yes), action-pragmatic marker(open please), etc. Also, listen to two word combination that he produces and add an element such as descriptive concept (fly big plane) or noun (ball in bag).

That is just 3 of 20 recommendations we received, and all of them were of that caliber. We credit major parts of our action plan with Raymond to the help we received from Georgetown. Not just that, the report gave us the justification to begin speech therapy, physical therapy and occupational therapy, all of which have helped Raymond grow and thrive. In fact, he met his PT goals after just 14 weeks, and has since been released.

I guess what really struck me about the team at Georgetown is their willingness to help our son. We have seen many therapists and doctors, but the ones who exemplify their profession best are those who go the extra mile for their patients. I’m happy to say that the staff at the GUH Autism and Communication Disorders clinic are among the best professionals I’ve met in my life. If you have a kid on the autism spectrum, these are the people that will help you help your child.

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