Pandas induced Autism?

[vern_dave]

Greetings fellow parents, I'm new and have a situation I would like you to help me with. Our DD is going on 18 months since dx for PANDAS. She has been on abx for most of that time and also had 1 HD IVIG about 6 months ago. While she has been much worse (symptom wise) in the past the biggest concerne for me right now is the baby-talk. Her onset was classic PANDAS including baby-talk and the strep rash but she never lost all her ability to speak words. But, in the last 4 months or so she gradually spoke words less and less to where now it is very rare we hear a real word spoken. There are other signs of autistic type behaviour and hence the title of my post. Has anyone ever heard of this happening? Also, is it true that PANDAS does NOT result in permanent brain damage? Thanks in advance.

[MomWithOCDSon]

Yes, there have been instances of regressive behaviors, including linguistically. Even cases of select mutism.

 

Several children here on the forum, including my son, had behaviors that looked very much like ASD and have even been diagnosed as being "on the spectrum" during PANDAS exacerbation. As he has healed medically and psychologically, however, that behavior set has faded as well, and no one applies that diagnosis any more.

 

As for PANDAS/PANS and "permanent" brain damage, you can run a search here on the forum and you'll find past discussions along those lines. Bottom line is, nobody knows for sure, but there's lots of anecdotal evidence to suggest that it doesn't. That being said, some behaviors that our kids develop for dealing with the higher level of anxiety frequently inspired by PANDAS episodes (OCD, tics, mutisim, etc.) can become "habitual" over time if the exacerbation(s) drag on and therapies aren't employed for helping them find other ways to cope as they heal. Rather than "brain damage," I think of that as those brain pathways being developed, just as they would with any kid, but some of the pathways our kids build during exacerbation are atypical. So as they heal, you have to encourage them and give them tools to build new pathways that are more "typical," rather than relying upon and reverting back to those paths. Does that make sense?

 

You didn't mention how old your DD is, any other health history or what other ASD-type behaviors (besides the regressed language) you're seeing. Perhaps you'll get some more feedback from others here with similar issues or ideas.

[SSS]

Hi- my dd seems to have congenital issues, so no glaring regression/ overnight,

but wanted to mention she did have selective mutism,

and the first 'health' thing we did was go

100% gluten and dairy free just as she turned 4,

and to our amazement,

it opened her up and she started speaking to children in preschool

and stopped just whispering in teachers ears within weeks.

Looking back, it was probably reducing inflammation.

Treating yeast overgrowth also helped this issue,

and if your child has been on antibiotics for 18 months,

gut health is something you may want to look at...

Her first time on Azithromycin at age 5 also gave us an 'opening up socially' and reduction in anxiety...

Merry Christmas, welcome, this board is a wealth of help.

[JoyBop]

How old is your child? And at what age did she start declining in speech abilities? It is purely the spoken word? Or is there also avoidance of eye contact and loss of body language as well?

 

Interestingly, at the pandas conference one of the docs compared pandas to autism saying that it's the same type of assault by the immune system on the brain. They also said that many of the diets that work for autistic kids are also being found to be helpful for pandas so you are definitely asking a great question

 

My dd was 2.5 when pandas struck and the first thing she was worked up for wAs autism. She didn't quite for the bill as she still seemed to be in touch with conversation even if she responded inappropriately. There are also other disorders that can cause a loss of verbal communication skills. There could also be obsessions that cause a child not to speak. Its so hard to say.

Edited December 28, 2013 by joybop

[rowingmom]

DD lost speech gradually after her 15 month MMR. Her speech wasn't highly developed, but she lost everything - for years - until we began speech therapy at age 3. Along with the loss of speech we also saw loss of fine motor control, spatial ability, and the development of toe-walking. Our SLP dx'ed oral apraxia, which is caused by a loss of motor control over facial muscles, so losing fine muscle control of the face seemed to go along with the loss of her ability to manipulate objects with her hands.

 

DD was dx with Aspergers in Dec 2010 because of social/behavioural delays, sensory disorder and ADHD. Baby-talk was a dead giveaway for flares for her as well. Lying on her back on the ground, kicking arms and legs, and baby-talking to the dogs used to drive me nuts.

 

On the up side, with treatment for her infections she has regained motor ability and lost her ADHD/motor delay/tic disorder/Aspergers diagnoses. She is still a little quirky about not interpreting sarcasm properly sometimes, but other than that is functioning normally.

Edited December 29, 2013 by rowingmom

[vern_dave]

Sorry for the tardy reply. I truly appreciate your responses but, lost my password and with the holidays and so forth....

My DD just turned 10 in August and there is one other curveball in her situation. She does have Down Syndrome with no other health related issues that go with that dx. Prior to PANDAS onset she was very verbal to the point of (we thought) cracking jokes. She has improved in many areas such as severity of anxiety, sleep issues, appetite (though still some food aversions) and regularity (which was alway an issue for her). But, the cognitive side of things including speech has not come back. Even though baby-talk started at onset she still spoke and and sang at the same time though the interactive/conversational side was lacking until about 4 months ago ( as stated in original post ). I feel she is still in there somewhere and many times I notice she recognizes her new limitations and rather than work through them she avoids situations that remind her of the things she once was capable of. As an example..... I bought her a desktop computer (just for her) to visit her favorite web sites. She was fully capable of logging onto and finding whatever she wanted on her selected web sites. Well, yesterday I'm sitting at her computer updating stuff and she gets in the chair but once I encourage her to engage with the computer and the site she once enjoyed she got up quickly and walked away. Anyway, we are looking at taking her to California and would like someone else to take a look at her. I have a couple of providers i'm looking into but would really like to ask parents in California about them. Can I mention thier names on here? Thank you so much and may all of you have a blessed and prosperous New Year with much healing for your children.....

[peglem]

You can ask about the doctors by name, but it usually works best if people PM you if they have negative feedback/experiences to share.

[rowingmom]

We noticed this with DD as well. Things she had been able to do she no longer even attempted.

 

The most obvious one to me was when she weaned herself at 16 months of age. Before her MMR at 15 months she was an avid nurser and had good use of many single words. At approx. 16 months she climbed in my lap to nurse, tried but was unsuccessful at latching on (I assume because of her loss of motor control), shook her head NO, and never attempted to nurse again. After this she also lost the single words she had been using consistently.

 

I never understood this sudden weaning until I realized it was probably associated with her global loss of fine motor control.

 

I feel she is still in there somewhere and many times I notice she recognizes her new limitations and rather than work through them she avoids situations that remind her of the things she once was capable of.

[Hrosenkrantz]

vern_dave -- I understand how difficult it is to see your child. who did have struggles before pandas, get hit with a new issue that causes so many setbacks. My son had some developmental issues before PANS, but with some supports he was doing well -- then PANS hit, and it was so, so hard to see him lose skills he had -- not just talking, but writing name, drawing pictures, and other basic skills.

[sf_mom]

I am in Northern CA and have twins with spectrum issues/PANS. One lost most of her language ability at 2 1/2. You are welcome to PM (upper right hand corner) to see if I recognize any of the Dr.'s you are interested in seeing.

 

Our children's pediatrician is at Whole Child Wellness, our DD sees a neurologist at My Brain Health and they all see an LLMD.