PANDAS in non-verbal child

[Pandamom777]

My daughter has a global developmental disability, autism, and is non-verbal. She has also had some interesting neurological issues through the years. Mother's instinct has told me that the two were separate and I'm thinking that PANDAS explains the 'odd' neuro behaviors. Because of Beth Maloney's book, I constructed a timeline and found all of the neuro stuff began when she was diagnosed with strep. It was my aha moment!!

 

I know many of you have had difficulties getting docs on board to help and I think I have an extra challenge. Because of her disabiilty doctors tend to explain away any possible medical issues as behavioral. I've been told many times, "These kids just do these things." It is so frustrating!

 

My question is what are possible PANDAS symptoms in a non-verbal child. Most of my daughter's repetitive, compulsive actions have been attributed to autism and I thought gut issues explained the irritability and rages that come and go.

 

Thanks,

Sharon

[peglem]

Hi, kindred spirit!

 

I have a 15 yo nonverbal autistic daughter, w/ PANDAS. I don't think the 2 are separate issues. I think the PANDAS struck my daughter at a very young age and interfered w/ development.

I sure hear you on the

"Because of her disabiilty doctors tend to explain away any possible medical issues as behavioral. I've been told many times, "These kids just do these things." It is so frustrating!"

My take is that the autism is a set of symptoms (not a dx), and if you look at the children here who developed PANDAS after early childhood development, you'll see parallels to the behavior in your daughter. In autism they give the symptoms different names, which only confuses the issue more-repetitive behaviors, stimming, adherence to rituals- these are OCD behaviors. If apraxia is the reason for the lack of verbalization-this is a fine motor problem and can also be caused by PANDAS (not sure if its chorea or tics). I so much want doctors to stop looking at autism as though it is a diagnosis and start trying to find out why for each child, these symptoms are happening.

 

The challenge to get medical help for PANDAS in our cases is, I think, more difficult...our children are much harder to examine and assess, and the "exacerbations" can be a lot more difficult to see because the "baseline" behavior is already so dysfunctional.

 

How old is your daughter and where do you live?

[Pandamom777]

It's so nice to have a kindred spirit! Sometimes this journey can feel so lonely. We live in Minnesota (go Vikings

 

My daughter, Amanda, is 21. I guess I never thought that some of her early issues could be PANDAS, but she had thrush at one-month old and had impetigo at six-months old. It is interesting that her pediatrician said she looked great when she was born, but had serious concerns at about the six month mark..... This was followed with years and years of chronic infections and antibiotic use.

 

It was after reading Beth Maloney's book that I started looking at my daughter with fresh eyes. I began wondering if all the ritualistic behavior, the weird breathing patterns, dystonia movements, etc. could all be connected. After reading your post, I am now adding in her apraxia -- both motor and vocal to the mix. It also makes reminds me of a conversation I had with our chiro/accupuncture doc who told me he feels Amanda does not have a developmental disability. He said he's worked with many kids that do, but that those kids look much different. He said they often look tuned out -- Amanda appears to be more locked out. Basal ganglia issues???

 

Since the dystonic movement recurred, I scheduled an appointment with a neuro who specializes in movement disorders. Not sure if he is up on the new info on the movement disorder-post strep connection or if he supports this. Depending on how that goes, it looks like Dr. Kovacevic in Chicago would be the one to help us. Any other ideas?

 

How is your daughter doing?

 

Hi, kindred spirit!

 

I have a 15 yo nonverbal autistic daughter, w/ PANDAS. I don't think the 2 are separate issues. I think the PANDAS struck my daughter at a very young age and interfered w/ development.

I sure hear you on the

"Because of her disabiilty doctors tend to explain away any possible medical issues as behavioral. I've been told many times, "These kids just do these things." It is so frustrating!"

My take is that the autism is a set of symptoms (not a dx), and if you look at the children here who developed PANDAS after early childhood development, you'll see parallels to the behavior in your daughter. In autism they give the symptoms different names, which only confuses the issue more-repetitive behaviors, stimming, adherence to rituals- these are OCD behaviors. If apraxia is the reason for the lack of verbalization-this is a fine motor problem and can also be caused by PANDAS (not sure if its chorea or tics). I so much want doctors to stop looking at autism as though it is a diagnosis and start trying to find out why for each child, these symptoms are happening.

 

The challenge to get medical help for PANDAS in our cases is, I think, more difficult...our children are much harder to examine and assess, and the "exacerbations" can be a lot more difficult to see because the "baseline" behavior is already so dysfunctional.

 

How old is your daughter and where do you live?

[peglem]

My daughter is doing okay. She's coming out of an exacerbation that started in September. We just got back from seeing Dr. Latimer in Maryland (because we couldn't get any specialists here in Phoenix to make any decisions beyond acknowledging autism). Hopefully we'll be getting some IVIG arranged for her here soon.

 

Wow, 21 yo. That's got to be even harder medically- I mean autism is a pediatric set of symptoms (I refuse to call it anything else), so at least pediatricians know a little bit about it. I'm terrified of my daughter turning 18, as we'll no longer be able to see her pediatrician, who has been our angel for many years. How will I ever find a doctor who will listen and be able to help when she is an adult?

 

I hope you get some help from the neuro up there, but my guess is they'll act like you're in denial about your daughter's condition (oh, those pitying looks!) and you'll end up needing Dr. K.

 

I'll be sure to update here what happens with the IVIG...I'm so excited to have this ray of hope. Realistically, I know she'll still be autistic, but can't help but think she'll get a break from the PANDAS long enough for therapy to help, and maybe she'll even get back some of the things she lost several years ago...I keep thinking if I can get her back to where she was at about age 6, (when we were seeing so much progress in therapy) then she has a shot at developing more function.

[thereishope]

I lost you at "Go Vikings". My husband and kids are Packers fans:)

[melanie]

I lost you at "Go Vikings". My husband and kids are Packers fans:)

 

 

Hi Pandas mom

 

I have an AS 15 yr old son who has PANDAS we see Dr T in NJ and I know he sees through the autism and looks for causes.My so is definitly not non verbal (he doesnt stop talking) but has a whol;e other set of issues.Email himDrT and see if he can help?

 

Melanie