autism and Dr. L

[Hrosenkrantz]

Hi -- I have a friend whose son has been diagnosed with autism for years.. She recently saw Dr L, who diagnosed him with a form of strep, and wrote an rx for some medication.

I know I have corresponded with parents on this forum whose kids have been diagnosed with autism, and then they treated for PANS and saw some progress. Alas, my inbox is now empty -- my friend would like to talk to other autism parents who have gone down this route and seen progress (with Dr. L or others).

Thanks

[3bmom]

We see an Autism Dr in LA for PANDAS. I don't know of any PANDAS Drs in the area. He says PANDAS, Autism and Alzheimer is all the same thing Neuro Immune Dysfunction from diet/food and infections. I believe this either causes or is in conjunction with detoxifying issues. I see it as a Venn Diagram with overlaps because we have been able to get close to baseline, 95% in between flares.

 

I think maybe the difference is WHERE the brain is most inflamed and all should be treated the same and not get hung up on the labels. If you read the original parameters for Autism this generation of kids would not fit the label but the label does unfortunately stop the majority of parents (not here on the forum) from looking for answers since they have been told it is "Genetic". In fact it is scientifically impossible to have dramatic increases in the population of a genetic disorder.

[Hrosenkrantz]

Thanks 3bmom. In my friend's case its the opposite -- she has been told for years its autism and nothing to be done medically, and now she is trying a PANDAS doc who takes a less pervasive view of autism. I think she is looking to hear from others in her situation who have seen positive results from PANDAS treatments.

[airial95]

We were never given an autism diagnosis, but only because we had an amazing pediatrician who recognized the PANDAS right way, and at a very young age. PANDAS in a toddler (my son was 19 months) can look startlingly like autism. Parents who don't have attentive pediatricians, or go to large practices and see whatever doctor is in that day could easily be dx with autism based on that single visit that day. Fortunately, we are in a small, single doctor practice, and he has been seeing my children since the day they were born, so he was able to more clearly see the regression, the severity of it, and the suddenness of it's onset (hallmark PANDAS trait). Because of that - he suspected PANDAS first, but acknowledged that autism, particularly aspbergers as my son got older, was still a distinct possibility.

 

I am happy to say that my son is now 6 years old, and a bright, gifted kindergartener, who shows no traits of autism whatsoever. Treating his PANDAS removed ALL autistic symptoms he was experiencing. When in a flare, some do come back (particularly noise sensitivities and behavioral rigidity - inability to transition between activities/tasks) - but they are always temporary and resolve with treatment for the infection/flare.

 

I firmly believe that there are LOTS of kids that are misdiagnosed autistic when the problem was really PANDAS. My son's was triggered by an impetigo infection - so we knew where it started, but after dx, we realized that he is completely asymptomatic to strep throat - meaning he gets no fever, sore throat, nothing. The only clue he may have strep is an increase in his PANDAS symptoms, so it is very easy for doctors to "write off" these issues as autism and not suspect PANDAS, especially if the child is like my son and has no physical symptoms of strep present to make them suspicious.