What actually is the difference between PANDAS and ASD?

TwinsMommy

Thu, Feb 27 2020, 11:20 pm

THE PANDAS specialist in our area (Cleveland) wouldn't even do blood testing (pediatrician stopped at dnase)--- Cunningham panel or even the basics once my ASD pre teen had no changes with long term antibiotics OR with steroids (yes he threw steroids at my ASD kid without proper bloodwork). So for now I'm done chasing PANDAS even though all my friends have determined my son MUST have it--- both my kids have ASD but my son seems very PANDAS-ish. His first signs of autism were at 14 months old and he did lose skills at that point (stopped walking from 14 to 21 months) but I didn't even know about PANDAS then. So yes, maybe there was a sudden onset but being a new mom --- I didn't realize that all ASD cases weren't sudden onset. This doc felt he needed "sudden onset" that wasn't clearly (to him) JUST ASD in order to run bloodwork. Any advice for a doctor in Cleveland who will do anything but just throw anti psychotics at my kid? I'm playing meddy go round with a psychiatrist who is very caring, but my kid is in a behavior school and can't even make it in public school. There is a small chance my kid might go to college and/or have a job and/or live on his own someday because he's "high functioning" enough to speak and toilet and learn, but I have no idea how to get him the most out of his life at this point. My daughter also has ASD and though she had a much clearer "sudden onset" much later in life (no signs of autism at all until 3 and a half) she's not seeming PANDAS-ish like he is.

amother

Aubergine

Thu, Feb 27 2020, 11:33 pm

My son was diagnosed with autism....and add(and I have add too).

My earlier questions was, if something later on in life (example: vaccines) can cause autism then how is it that many many autistic kids are very smart in many areas.

How would getting autism affect that?
(Might be a stupid question but I'm trying to make sense out all this)

amother

Sapphire

Thu, Feb 27 2020, 11:38 pm

amother [ Forestgreen ] wrote:

Does your child currently have any diagnosis?

Ideally you would work with a good practitioner. A functional or MAPS pediatrician trained in the biomedical treatment of autism.

You can also read books and articles. I linked a bunch on the first page of this thread.

Can you recommend a good practitioner in the nyc area.

amother

Forestgreen

Fri, Feb 28 2020, 8:48 am

amother [ Aubergine ] wrote:

I'm not sure I understand the question. Are you asking if they're brain injured, how come their intelligence still works, and sometimes even better than average?

amother

Aubergine

Fri, Feb 28 2020, 9:48 am

amother [ Forestgreen ] wrote:

I'm not sure I understand the question. Are you asking if they're brain injured, how come their intelligence still works, and sometimes even better than average?

I personally wouldn't call it brain injured but yes that's my question- not the still works part though....more above average intelligence

amother

Forestgreen

Fri, Feb 28 2020, 11:26 am

amother [ Aubergine ] wrote:

I personally wouldn't call it brain injured but yes that's my question- not the still works part though....more above average intelligence

It's a really good question, and there are a few theories about this.

First, the parts that are most affected in asd (and pandas) are parts of the brain that affect movement, coordination, emotional regulation. So memory and reasoning can remain unaffected.

About higher than average levels of intelligence, there are neurotransmitter theories that may explain both the deficiencies and the strengths, like excess dopamine or glutamate. I've also seen theories about excellent memory being related to ocd via enlarged caudate nucleus.

Third, many many children with asd are actually below average intelligence Sad

the ones that are savantes, or the higher functioning ones that used to be called aspergers get a lot of publicity, but many parents feel those children aren't the true face of autism, because most children are lower functioning and struggle profoundly in all areas of development, including cognitive, and have no special "talents" at all :'(

amother

Forestgreen

Fri, Feb 28 2020, 11:34 am

amother [ Pearl ] wrote:

Can anyone recommend a good practitioner for Pandas, no other diagnosis. My son primarily has tics. He also has some undiagnosed learning issues. Whoever tested him could not find the issue. We went to a neuropsychologist, speech therapist etc...
We live in the tri-state area.

I'm not sure if just tics and learning issues will qualify for a pandas diagnosis. Have you ever found anything that helped with the tics?

amother

Pearl

Sat, Feb 29 2020, 8:35 pm

amother [ Forestgreen ] wrote:

I'm not sure if just tics and learning issues will qualify for a pandas diagnosis. Have you ever found anything that helped with the tics?

He was put onto antibiotics for a month. It helped tremendously with the tics. My son just stopped the antibiotics and slowly I see an increase in the tics. It’s definitely not as bad as it was but I am nervous.

amother

Forestgreen

Sat, Feb 29 2020, 8:47 pm

amother [ Sapphire ] wrote:

I did a search in pandas on imamother and see that many people here recommended Dr Wendy Vargas. How are these practitioners different than her?

I'm already confused between all the amothers here so I don't remember exactly what you were looking for. The 3 drs I listed are autism biomed drs. They are functional medical drs who will run lots of specialized, cutting edge testing to puzzle out the medical causes of your child's symptoms and will create a individualized healing program for them based on their findings using diet, herbs, supplements and medications. Dr. Wendy Vargas is a mainstream neurologist who is somewhat pans/pandas literate, which means she believes that it's possible for an infections to sometimes cause behavioral symptoms that look like ocd/tourettes/adhd etc. But she's very by the book, will only give you a diagnosis if you have a very classic textbook case (sudden onset, classic ocd, etc), or strong biomarkers for autoimmune encephalitis, and will only use allopathic methods to treat, such as long term antibiotics, ivig, steroids and other immunosuppressants and psychotropic medication. Nothing wrong with either approach but they serve different purposes

amother

Forestgreen

Sat, Feb 29 2020, 8:52 pm

amother [ Pearl ] wrote:

Oh. That is pretty telling then :-/ Is the dr that gave you a month of antibiotics any help?

amother

Pearl

Sat, Feb 29 2020, 8:56 pm

amother [ Forestgreen ] wrote:

Oh. That is pretty telling then :-/ Is the dr that gave you a month of antibiotics any help?

The pediatrician wanted to wean him off slowly but my son just decided to stop cold turkey (he’s 11). It’s approximately three weeks later and I’m not sure what to do.
I think that the pediatrician is a bit skeptical of Pandas but he was willing to try the antibiotics route. I requested the bloodwork and pushed the concern. I should discuss it with him again but I’m worried that this will just be a cycle of antibiotics weaning and starting again.
I don’t feel confident that we have a real plan or understanding.

amother

Forestgreen

Sat, Feb 29 2020, 9:01 pm

amother [ Pearl ] wrote:

You can try dr shulman. You need a good 3-6 months before you can try weaning again. But in my (limited) experience, antibiotics are never the complete answer.

amother

Sapphire

Sat, Feb 29 2020, 9:11 pm

amother [ Forestgreen ] wrote:

Thank you for taking the time to explain in depth. In a nutshell... Im really struggling with a child who is presenting us with insanely challenging behaviors, impulsivity, sensory seeking, is not doing well socially, amongst other things. We’ve been to neurologists, psychologists, therapists, who are all saying this child is a anomaly. The behaviors are not really consistent with any diagnoses besides ASD and dc does not respond to therapy the way dc is “supposed” to. Happened to have taken bloodwork and my pediatrician mentioned as a btw that dc’s strep markers are all high. What now?! Who can help me get to the root of what it really is???