Autoimmune/immune connection to autism

[peglem]

http://www.stopcallingitautism.com/index.php

 

One child's story of recovery when it was discovered that his neurological problems were caused by an autoimmune condition. It has research links to some studies re: the immune system in autism. My own daughter's very severe autism has been caused by autoimmune problems, but we didn't find out until she was a teenager because doctors dismissed her problems as autism manifestations, instead of seeing the autism as a manifestation of an underlying problem.

Edited April 24, 2010 by peglem

[cmate]

This is interesting, first I have heard of this. What do you do if some of the tests come back positive - are the auto immune conditions treated with pills, diet, or ??

 

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Autism Gateway

[peglem]

This is interesting, first I have heard of this. What do you do if some of the tests come back positive - are the auto immune conditions treated with pills, diet, or ??

 

--

Autism Gateway

 

I would think it would depend on what the autoimmunity is. My daughter's condition is PANDAS (I mostly hang out on the PANDAS forum of this board) and is triggered by strep, so we use antibiotics to prevent infections and ibuprofen or prednisone to decrease inflammation. Have been doing some IVIG (immune cell replacement), but need to seek a higher dose on that.

The "Stop calling it Autism" site does a nice job with details on testing and treatments.

[tpotter]

I was drawn into the Autism section this morning (I also mostly hang out on the PANDAS site, because both my children have it.) My 17 year old son is also diagnosed with Autism, but many of his symptoms are PANDAS (tested positive.) He also frequently appears bipolar, but again, his tests always come out high, and tx works. We just found out last year, and only because my younger son has classic symptoms of PANDAS (but still took 4 years for dx, and 5 years for tx.) We have used antibiotics (which stopped his very severe symptoms 3 times last year...overnight), and plasmapharesis (which removes the toxins from the blood), and plan to either do that again or IVIG (plus he continues on the antibiotics.) He still has the social skills problems of an "Aspie", and has difficulty with writing certain types of essays, but I do believe that the vast majority, if not all, were probably started with PANDAS and/or Pitands (he had an allergic reaction to the MMR, and had strep repeatedly when he was younger.)

 

I have started talking to many of my friends, and clients who's children have Autism, about having their immune systems checked, as well as testing for PANDAS. Again, it's one more thing that can be ruled out, before just assuming that there's no way to tx it. And, just like Sensory Integration, it works way better if the children are started on tx immediately (my children will probably have problems the rest of their lives, because dx and tx started so late, and they are both post-puberty.

[peglem]

I was drawn into the Autism section this morning (I also mostly hang out on the PANDAS site, because both my children have it.) My 17 year old son is also diagnosed with Autism, but many of his symptoms are PANDAS (tested positive.) He also frequently appears bipolar, but again, his tests always come out high, and tx works. We just found out last year, and only because my younger son has classic symptoms of PANDAS (but still took 4 years for dx, and 5 years for tx.) We have used antibiotics (which stopped his very severe symptoms 3 times last year...overnight), and plasmapharesis (which removes the toxins from the blood), and plan to either do that again or IVIG (plus he continues on the antibiotics.) He still has the social skills problems of an "Aspie", and has difficulty with writing certain types of essays, but I do believe that the vast majority, if not all, were probably started with PANDAS and/or Pitands (he had an allergic reaction to the MMR, and had strep repeatedly when he was younger.)

 

I have started talking to many of my friends, and clients who's children have Autism, about having their immune systems checked, as well as testing for PANDAS. Again, it's one more thing that can be ruled out, before just assuming that there's no way to tx it. And, just like Sensory Integration, it works way better if the children are started on tx immediately (my children will probably have problems the rest of their lives, because dx and tx started so late, and they are both post-puberty.

Yes, I know my daughter will continue to deal with a lot of problems after PANDAS treatment, even if/when the PANDAS issue is resolved. It just messed with her development too much and treatment didn't come until puberty. But, resolving PANDAS will give her a chance of gaining some development, and maybe getting back what she lost as well. Who knows?

But this is why I was excited to see this website- I want to alert parents of younger kids to investigate this possibility, and hopefully have a better prognosis than my daughter.

[4Jack]

This is my first post. My son is dx Tourettes but I am convinced he also has Aspergers. I have read and researched extensively and the idea that makes the most sense to me is that compromised immune systems are the underlying to key to many of these neurological disorders. I want to have him tested but am not sure how to go about it. Did you take your son to a DAN doctor? What tests did you do? Could I have them done directly from a lab or do you think there is value in having a specialist interpret the results? I think he probably also has a problem with Candida.

[tpotter]

Check this website:

 

http://www.stopcallingitautism.com/

 

It has a list of immune tests to ask your doctor to order. It was posted on the PANDAS/Pitands side. Also, the fact that he has tics (although dx as tourettes) may be indicative of PANDAS. Check out that forum, and see what you think. Was he sick a lot (Strep, Ear Infections, Sinus Infections, etc?) Did the symptoms come on suddenly (not always a requirement...one of my kids did, and the other has probably had the symptoms for years...both are diagnosed?) Check out the website: www.pandasnetwork.org (set up by a parent, with contributions from parents for parents.)

 

In addition to having my own child dx with Asperger's syndrome, I work with a lot of children with Autism. Recently, I have started recommending that they see a Pediatric Immunologist, as I am so convinced it is related. And, for the record, almost every parent I have asked in the past month, who has a child dx with Autism has a family hx of Autoimmune illness (others are being ruled out as having a genetic disorder, such as Fragile X.) Many of the families contributing on the PANDAS/Pitands section who have children dx with PANDAS also have a family hx of Autoimmune Disorders (personally, I suspect that there are more, but the other family members may not, yet have been diagnosed...my husband, for instance, was just dx with RA!)

 

Good luck.