Saturday, August 13, 2005

Dr. Kendal Stewart

Several months into James's occupational therapy, around June of 2003, we went to see Dr. Kendal Stewart, an ENT/Neurotologist who provided a somewhat unconventional approach to autism and other sensory processing problems: a six-month regimen of Valtrex, twice a day.

The basic theory behind his treatments is that autism and other related sensory processing disorders are actually auto-immune conditions, or at least caused by them. According to his theory (several other doctors have similar theories related to or based on his), the culprit is one of the various strains of herpes present in the environment. The virus isn't detectable in the blood stream because it hides in the nervous system. Valtrex draws it out so that the immune system can kill it. Naturally, I asked if this was directly measurable, but unfortunately it did not sound that way to me without doing a biopsy of James's brain; on the other hand, Dr. Stewart had a suite of tests. Several of them involved measuring the ear's response to stimuli, the ear itself being something of a "giant nerve" (sorry, my layman's oversimplification of things).

I was skeptical, but kept an open mind. Dr. Stewart was very articulate. Although we spent well over an hour talking and answering my questions (most doctors don't do that), had data suggestion strong correlations, and had what seemed to be a unique system of analyzing this data, there were no formal studies based on things such as double-blind placebo trials. As Dr. Stewart pointed out, "these are children--no wants to be in the control group; their time is limited." I believe Dr. Stewart claimed around five years of success with various patients. As an alternative to classic clinical trials, Dr. Stewart employed a battery of diagnostics to generate what he called "evidence based" analysis. As a software engineer, such an approach seemed familar to me (albeit not as scientifically airtight). But more importantly to any parent, it was explained to me that the dosage and treatment was low-risk. Primum non nocere. ("Do no harm.")

We did six months of the Valtrex treatment, grinding then pulverizing those damn hard, bitter blue pills into his orange juice twice a day, every day, for six months. Nevermind the double-take from the pharmacist when she realized that the prescription was for a four-year old and not me. James's mother was around for the first few months, but when she moved away to California after the divorce, I continued the ritual alone. Near the end James began to resist his drinks, blowing bubbles, throwing and "accidentally" spilling them on the ground out of protest. I don't blame him. Tasted like shit. I added more sugar, thickened the juice, woke him up earlier in the mornings to wait on him to finish--did whatever I could to get him to complete the dreaded routine. I joking asked the nurse if we could just do it as shots or a patch. Then finally, Dr. Stewart said James was ready to end the treatment on October 31st.

Did James improve? Yes. Was it the Valtrex treament? I'm not sure.

During the Valtrex treament, James was attending speech and occupational therapy. He was with other children the first time. Lots of stimuli, lots of things coming at him all at once. Impossible to know what part each piece played. To complicate things, James only participated in one of Dr. Stewart's measurements: responding to whether or not he heard an audible signal. Other tests, including one that involved measuring the ear's physical response to signals, required ear-plug devices that we could not get him to wear.

Some of the things we tried along with the Valtex, such as an HGH patch and Omega-3 oils, seemed low risk. But I had reservations about some of the drugs used in conjunction with the Valtrex, albeit in low dosages. He recommended Straterra, which I dropped after a couple of weeks. (This was before the bad press about the drug. From the beginning our neurologist disagreed with Dr. Stewart's application of the drug, and I didn't notice any positive effects.) I also could not bring myself to using Provigil on a four-year old. Although I never felt like I was being pushed, after James's Valtrex treatment was completed I decided to move on and try a different path. At least for a while.

But I will say this: each time we visited, Dr. Stewart observed James's gait during a running exercise. He made cautious predictions not only about improvements in James's movement, but also mentioned possible changes in James's awareness of the environment. Those observation generally seemed to be coming true. For example, James began to pay more attention to objects on the road while riding in the car, as predicted. Although I could rationalize this out with the fact that James was also going through occupational therapy at the time, I'm not convinced that would be enough to dismiss all of his observations. I certainly don't doubt his intentions.

Was Dr. Stewart right? I don't know, and I may never know. I deeply hope he was, but hopein' ain't believin'. I do know that James is still autistic. There was no "magic bullet" or "moment of awakening" for us. No one ever promised us that. Treatment of autism is in its infancy, and everyone still seems to be trying to figure it out. We are in a gray area, just now making movements out of the dark ages. We have a long way to go, but James is better off than before. I don't regret putting him on Valtrex for six months, because not trying anything after hearing Dr. Stewart's convincing pitch would have been something I would have truly regretted.


Link:

Web site used to be http://www.neca.us/ but it doesn't appear to be maintained any longer. I did find a profile on him at http://www.autismaustin.org/doctors.html

Dr. Kendal Stewart
Neuro-Sensory Center of Austin
6836 BeeCaves Road, Suite 180
Austin, TX, 78746

27 Comments:

Anonymous Anonymous said...

Would you recommend Dr. Stewart as an ENT and for allergy treatments?srochow@austin.rr.com

7:45 AM  
Anonymous Anonymous said...

My son, Antonio, went to Dr. Stewart for almost a year. This included 3 seperat visits. While he was on the Valtrex in varing dosages, he also was in ABA therapy, Speech and OT. We saw a great deal of improvement in Antonio's communication and peer interaction. Dr. Stewart's test (and we took almost the whole battery of them) did show improvement each time. I think it was worth while to spend some time under his care, but Autism is not something that can be answered with just one system. My wife and I are constantly tring other approaches.

12:54 PM  
Anonymous Anonymous said...

Dr. Stewart's Office number:

512.338.9840

His office is also known as Neuro-Sensory Center of Austin or NEC in the phonebook.

7:43 AM  
Anonymous Anonymous said...

Hi my name is Brooke and I have a daughter that is 6, Hope. She has been seeing Dr. Stewart for almost three years now. We have taken some of the same procedures as you all and the results are truly amazing. Before Dr. Stewart we went to many specialists that just wanted to label my child as "Borderline Autistic". THey had no idea what was wrong with her and queit frankly they did not care. We have talk to several patients of Dr. Stewarts and the results for them are also a miricle. He is a very caring and patient man, along with his staff. On the Valtrex, if you are having problems with your child taking it, you can have your local pharmacy compound it for you and add some flavor to it. I highly recommend anyone that knows or has Autism to see Dr. Stewart. He has changed our daughter in more ways than one!

10:11 AM  
Anonymous Anonymous said...

My son has been going to dr stewart for almost a year. We think- no,we know- that the treatment is working. I would tell any parent of a child with any degree of autism to see dr stewart. He and his staff are always very helpful, answering all of our questions. Dr Stewart is an answer to our prayers!!

4:28 PM  
Anonymous Anonymous said...

Hello,
I am not autistic. I am hearing impaired and I have been going to Dr. Stewart for the past 8 or 9 years. He is a great doctor and I would recommend him to anybody who has hearing loss,autism and balance problems.

As part as my hearing impairment, I have really bad balance and during the many visits to Dr.Stewart, he has used a computer system that determines how bad your balance is, and it really helps you.

8:41 AM  
Anonymous Anonymous said...

hello,

I also have a son who is 13 years old's who sees Dr. Stewart, I was skeptical at first to his treatments but after trying them I did see a difference. It is not a cure for our children but it does help them it did my son at least.

4:10 PM  
Anonymous Anonymous said...

To Paul Short: We now live in San Antone, moved here from AUS in 05. Do you intend to ever put your son back on Valtrex? Ours has been on V over 6 mos now but only half a tab at night now plus a few other anti-inflamms from Doc S and is a little improved...like you say hard to measure, definitely NOT worse. Ours talks a lot, is in reg class, etc. I would like to know more about what all else you have done/do for your son, his age, school status, etc. Fellow Austinites Nance and Chance Brach at nbrach@satx.rr.com

9:03 AM  
Anonymous Anonymous said...

Hi,
My name is Karen. I live in Rome GA. I was actually looking for a Dr Kendal Stewart that i grew up with to let him know of my Mother passing away. The strange thing is, i am on short term disability because of vertigo and balance. I also have hearing loss and bad migraines and would like to hear from anyone else being treated for this. I am on valtrex and HGH, i have a slight improvement but am still not able to drive or work. Also if anyone knows if the doctor ever lived or went to school in Georgia, i would love to find out.
thanks
Karen in GA

3:09 PM  
Blogger Unknown said...

Our son, who is six has been seeing Dr. Stewart for 2 1/2 years and he is now taking a combination of acyclovir and amantadine. We have seen big improvements! Our son also(besides PDD) has an undiagnosed muscle myopatathy that only shows an elevated CK. Generally this indidcates some form of muscular dystrophy and yet after several DNA tests, he doesn't have MD. This has baffled several MD specialists and our last one finally agreed that it could be a viral problem. Dr. Stewart has been the only Dr. to have positive ideas about how to treat our son and they seem to be working. I would strongly recommend Dr. Stewart to anyone. We moved from Austin 1 1/2 yrs ago to Seattle and fly home once a hear to see Dr. Stewart.
Ali S.

3:37 PM  
Anonymous Anonymous said...

My son is now 14 and has been a patient of Dr. Stewart for 8 years.
I took him to see Dr. Stewart for vertigo, blurred and double vision, inability to stand up and walk, & vomitting. Dr. Stewart diagnosed him with endolymphatic hydrops (viral infection of the cochlea). My son took 7 days of cortef, and was on Famvir for 18 months. He also went through vestibular rehabilitation. His recovery was slow but he did recover. What was very surprising was that my son had lost the ability to make eye contact at the age of 2, at the same time he lost much of his coordination. After 4 months of Famvir, his eye contact came back dramatically. When I asked him what changed, he said "you're not moving anymore." His world had been spinning for years !

My son is not autistic and has never been diagnosed with autism, however, he did suffer sensory integration problems and a lack of pain sensititivy. He is healthy now and we are very grateful to Dr. Stewart and his staff.

In 2000, my husband also got sick. He became unable to sleep, developed tremor, lost 50 pounds and had profound .... PROFOUND .....cognitive dysfunction. He was sick for 4-5 years and had to retire. Dr. Stewart put him on Valtrex from the begining, and though it didn't help his cognitive dysfunction, it did help his mycosis fungoides, which he had had for 12 years ! He had severe parapscoriasis which is now gone.

After 3 years of his illness, Dr. Stewart put my husband on Cortef for mouth and throat pain. He began to improve. Ultimately, Dr. Stewart placed him on Amantadine and Lyrica and indefinite Cortef.
Dr. Stewart diagnosed him with Chronic Inflamatory Demylinating Polyneuritis (CIDP). My husband has recovered, and is living a normal life again, which is a miracle...and Dr. Stewart is the true hero for our family.

We, too, had "traditional" doctors tell us that there was no basis for Dr. Stewart's therapies. I have seen with my own eyes that they were wrong. Dr. Stewart knows what he is talking about and knows what he is doing. He may not be able to help everyone, but he will
be able to help many patients that "traditional" doctors will not know how to help. My husband's "traditional" neurologist, who is a respected and very kind physician, maintained the diagnosis was incorrect and that my husband had "dementia". However, one does not recover from dementia.

For those of you who are suffering from autism in your family, my heart goes out to you. All I can say is that Dr. Stewart's therapies can take a very, very long time to work. But thank God he is here on the planet to think outside the box !

All the best,
A mom in Austin

8:31 PM  
Anonymous Anonymous said...

My husband was diagnosed with progressive multiple sclerosis and prescribed an injectible interferon drug. His decline only accelerated with that treatment. Then his neurologist offered only unpromising and even riskier treatment choices to perhaps delay disease progression.

After extensive investigation, I learned that people with MS not only have elevated heavy metals, they are beset by chronic infections and often have food allergies. Thankfully, an internet acquaintance recommended Dr. Stewart.

My husband has been treated by Dr. Stewart for 2 years now. We drive from the Dallas area to see him. The progression of my husband's illness has been arrested, and some of his symptoms are improved.

Dr. Stewart's treatments unavoidably take time, and some may leave for lack of patience. I strongly encourage all his patients to stick with him.

9:43 AM  
Anonymous Anonymous said...

I have a friend whose child is a patient of Dr. Stewart's. They have seen remarkable improvements in their child's quality of life and while I can't say it's all Dr. Stewart's doing, I will say that I strongly believe that the combination of Dr. Stewart's treatments and various therapies is working wonders.

He does have a website again as well. You can try www.neca.us and it will forward to www.drkendalstewart.com

1:26 PM  
Anonymous Anonymous said...

I also use the valtrex regimen in my autistic son and slowly its reaction become more normal. I usually buy the treatment at Valtrex Online they have regular price to this expensive medicine.

12:09 PM  
Blogger suzeegee said...

This is not to say the Dr. Stewart is not a good doctor in some instances, but my experience was not so positive and I didn't know it until I moved to Massachusetts.

I started having severe bouts of vertigo in 1995 that would come and go sporadically and in sometimes short and other times very long bouts.

Dr. Stewart did many tests, on my ears in his own facility at that time. He had me on medications, taking allergy tests, taking antigens, doing physical therapy and said that my inner ear tests were showing improvement. This went on over the course of several years. Dr. Stewart also told me that I fit the profile for a condition he was theorizing about and that he was designing treatment that no other doctor was doing at that time. That's why people were coming from all over the country to what was at that time his clinic. There were no other doctors at his clinic and all of his treatments (hearing, allergy testing & treatment, physical therapy, etc.) were all in house.

I moved to MA and had only minor dizziness, but then had a 2 month bout with severe dizziness. During that time I saw an ENT and, requested my files from Dr. Steward. I was shocked when the ENT informed me that the tests Dr. Stewart ran actually showed no improvement at all. In fact he had been treating me for Meunier's disease when that undoubtedly was not the problem. After seeing several specialists and running may of the same tests it was found that my problem was not related to my inner ear and I was sent to a neurologist where, it was discovered after an EEG that I am have migraine vertigo - meaning vertigo as a form of migraine whether my head hurts or not. This opened the door for many answers.

I suppose my chagrin with Dr. Stewart is that he never asked me about migraines or headaches, and I did have only about 2 in my life at that time, but they were really bad, (my father had a history of them as well) and never suggested that I see a neurologist. I still don't get why he didn't, but am thankful for the ENT who told me what was actually in my file of tests.

I have sense learned how to manage my chronic migraine problems and the vertigo with it.

Sorry, but Dr. Stewart proved not to be what I thought and though I don't understand it have difficulty recommending him to anyone.

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Anonymous Anonymous said...

I am considering many options for a autism treatment. Dr. Stewart is one of them. I got into this blog after a website search of his name. My main question is: Does anyone of you know or has had experience with him treating autism without antidepressants?

8:41 PM  
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Anonymous matthew said...

It looks like the austismaustin.com site mentioned above isn't up anymore. This is a more current biography of Dr. Kendal Stewart.

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