Does my 20 month old have PANDAS?

[peglem]

Chiari Malformation can also cause developmental delays...

Stephanie, you sure are having a rather extraordinary experience with motherhood! Prayers for you!

[Stephanie2]

Peglem, can you tell me where you read/heard that? I often wonder if his speech delay is due to the chiari. He was delayed with gross motor milestones, but has caught up with PT. He really has no words at the age of 20 months...does not even say mama. He says dada and he repeats words once in a while, but no vocabulary...I am working with the DAN and also setting up ST.

 

Yes, motherhood has been one thing after another, this is just the tip of the iceburg! I believe that things will get better one day! I have to believe it to survive!

 

Stephanie

 

Chiari Malformation can also cause developmental delays...

Stephanie, you sure are having a rather extraordinary experience with motherhood! Prayers for you!

[peglem]

I've been posting for many years on an autism forum and there is another poster there whose daughter is an adult now. But her daughter was younger she was dx'd autistic before they found the chiari. They did decompression surgery (not sure of her age) and after that she lost many of her autistic characteristics. This mom has been very vocal about the connection between chiari and developmental delay, especially since many, many doctors do not believe there is a connection. If you'd like, I can get in contact with her and see if she is open to discussions with you. I think she has a website or blog or something- I can find out, if you want. We've known each other for years through that autism forum. I'm pretty sure she'd be willing to help if she can.

[dut]

Hello

 

I've been having the same doubts/questions with our 26 month old son. His CamK came back at 151% and he had elevated antilysogangliosides, normal below 320 his was 640. Tonight he took his first dose of a 5 day steroid burst... I'll keep you posted as to what, if any, changes we see.