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[Erica M]

My 2 year old little possibly has Pandas. I will know more when we get the blood work back. He may have had it for almost a year untreated. I was wondering if any of your children were diagnosed as being possibly Autistic before you got to the root of the problem? Also, Id like to introduce us to everyone. Im Erica and my little boy is Grayson. We live in South Alabama. Hello to everyone and we wish the best for all of your families. Thanks!- erica

[peglem]

Yes, my daughter has severe autism (now 15 years old). We discovered PANDAS @ age 12, and her doctor (and I) believe the autism was caused by PANDAS symptoms interfering with development. The study of PANDAS was just beginning when my girl was 2 yo. Catching it early is a real blessing!

[NancyD]

My daughter -- now 14 -- was diagnosed with mild to moderate ASD at the age of 24 months. Looking back at her baby footage, I can see the signs very clearly at 3 months. Without question she met the diagnostic criteria and it was confirmed by a few top ASD experts, but who knows...maybe PANDAS was at the root of her issues. There is still so much we do not know about autism. Her first overnight onset of PANDAS symptoms was at age 2.9, however, she had GI issues beginning at 4 weeks (right after putting her on formula). I mentioned to Dr. L that I remember bright red rashes on her face from her soy formula and she indicated that it could have been strep. Definitely food for thought. DD no longer meets the diagnostic criteria for ASD but her PANDAS is pretty severe and very difficult to treat. Still trying to figure out if she has a co-infection such as Lyme or Bartonella. After 12 years of trying so many different DAN treatments and purposely avoiding antibiotics...if only I knew then what I know now! As Peglem says, "catching it early is a real blessing!"

 

Nancy

[Erica M]

My daughter -- now 14 -- was diagnosed with mild to moderate ASD at the age of 24 months. Looking back at her baby footage, I can see the signs very clearly at 3 months. Without question she met the diagnostic criteria and it was confirmed by a few top ASD experts, but who knows...maybe PANDAS was at the root of her issues. There is still so much we do not know about autism. Her first overnight onset of PANDAS symptoms was at age 2.9, however, she had GI issues beginning at 4 weeks (right after putting her on formula). I mentioned to Dr. L that I remember bright red rashes on her face from her soy formula and she indicated that it could have been strep. Definitely food for thought. DD no longer meets the diagnostic criteria for ASD but her PANDAS is pretty severe and very difficult to treat. Still trying to figure out if she has a co-infection such as Lyme or Bartonella. After 12 years of trying so many different DAN treatments and purposely avoiding antibiotics...if only I knew then what I know now! As Peglem says, "catching it early is a real blessing!"

 

Nancy

 

 

Nancy- Some of the things you said took me back a couple years....Although not uncommon, Gray has had GI issues from birth, including very severe colic, he is lactose intolerant, (all dairy), chronic constipation, for which hes been hospitalized several times. Strangely enough he had a red rash on his face and still does from time to time, which I assumed was from his strict soy diet. Gray also picked up Colostridium Difficile (sp?) from me at 3 months. My home is very clean but somehow he got it. I had a severe kidney infection after my c. cesection in April and was treated with a broad spectrum ab- ta-dah ! C-DIFF! Luckily Gray beat his quickly. Mine went on for 6 months. I eventually was drinking IV Vancomycin (I dont recommend it). Gray also has a Very bad case of Keratosis Pilaris (Bumpy build-up of Keratin plugs in hair follicles) that responded to the antibiotics as well. The redness anyway. Hes always had something going on but I never connected any of his illnesses with his neurological symptoms. I was always told he "just has a virus". I actually had one Ped tell me that its normal for some kids to be sick or have a virus most of their life till theyre like 5??!! However, for all his issues, Grayson is 3 1/2 feet tall and weighs 36lbs at 2! Hes over the 100th percentile for both weight and height. (I think hes eating the carpet lol) He pretty much lives off Puffs, nuggets and french fries

Edited September 8, 2010 by Erica M

[peglem]

I just want to say, because it took me so long to figure out and has caused so much frustration medically, that autism is not a diagnosis in the normal sense of the word. It is just a collection of neurological symptoms. When my daughter got the autism label at age 3, doctors accepted that as the end all, like it was some kind of solution that explained everything. Nobody would investigate why she was having these neurological symptoms. Its the biggest regret I have- that because they treated it like it was the disorder, instead of symptoms that there was something wrong, we lost a lot of years, very important years before getting treatment. My advice is, if you rule out PANDAS, keep looking for that underlying cause that is producing those symptoms that are labeled as autism.

[NancyD]

I agree with Peglem 3000%. And I would take it one step further. I support the theory that autism may be a purely biological disorder caused by the interaction of genetic factors, exposure to toxins, and failures in the functioning of the immunological, gastrointestinal, and metabolic systems, which in turn impact the neurological system.

 

Sadly, back when our children were 2 and 3 very few doctors understood the biological aspects of ASD. Everything was attributed to ASD. Thankfully, we had on our team very early on two nationally renowned experts (one a nutritionist and the other a pediatric GI) who specialize in ASD and who understand how ASD affects the immune, GI, metabolic, and neurologic systems. They introduced us to DAN 12 years ago and we have had great success with it. Although GFCF diet helped a lot, monthly glutathione IVs cleared up my DD's severe colitis and made it much easier for her to be able to respond to the other treatments (e.g., OT, speech, Floortime, etc.). Whether or not your child has PANDAS it is imperative that you look at the underlying biological causes of the ASD. You must treat the symptoms, not the disorder.

 

I just want to say, because it took me so long to figure out and has caused so much frustration medically, that autism is not a diagnosis in the normal sense of the word. It is just a collection of neurological symptoms. When my daughter got the autism label at age 3, doctors accepted that as the end all, like it was some kind of solution that explained everything. Nobody would investigate why she was having these neurological symptoms. Its the biggest regret I have- that because they treated it like it was the disorder, instead of symptoms that there was something wrong, we lost a lot of years, very important years before getting treatment. My advice is, if you rule out PANDAS, keep looking for that underlying cause that is producing those symptoms that are labeled as autism.

[philamom]

Hi Erica-

I read your other post before seeing this one. Welcome, you will find great information here and a lot of outstanding advice from wonderful parents! Thanks again for posting your history with c-diff.

Melinda