New - Neuro suspects PANDAS

[Suzan]

Hello, thank you for allowing me to join this forum to ask questions and gain some knowledge about PANDAS which I have never heard of until yesterday. My daughter has recently had recurring vaginal strep (one was in February and one in March). She's had strep before, earlier in life, maybe a few years ago. She was just cultured for it in April but it was negative and it turned out to be the flu.

 

My daughter (6) has the following history:

sensory processing disorder, diagnosed at age 3

epilepsy, staring, non-convulsive seizures

gluten intolerant, gets very sick when she eats any gluten. Celiac dignosis is unknown this time

malabsorbtion issues, probably from the gluten

very small for her age, probably from the gluten

Impulsive behavior (puts her feet in your face, pokes at you, always picking at you), may not be able to stop talking, etc.

Can't wind down to go to sleep

Tosses and turns in her sleep

ADHD behavior at times

Has some age regression issues at times

Has trouble knowing what to eat like she doesn't have a taste for anything and is very picky about food

 

She has no tics or obvious OCD behavior that I could tell (knowing not much about either). Except in retrospect I have observed:

Everything has it's proper place or order. If someone is doing something in the wrong order that really bothers her

Sees patterns easily (very good at puzzles)

Has been known to have her hand fly out and hit me in the face seemingly involuntarily (only remember this a few times)

Has been known to have inappropriate gestures (grabbing someone's breasts for example) saying she didn't know she was going to do that.

 

I don't know exactly what my questions are but I am wondering, does this sound like PANDAS? I have not noticed obvious behavior changes related to strep, but I have not been looking for that. I would have looked at what she ate for example instead. Must obvious tics be present? I'm kind of scared. I always would rather know so something can be done to help but from what little I've read, it seems there is not much that can be done to help her.

 

Any questions that come to your mind that I should ask her doctor? Anything else I should look for or think about whether I've seen it happen in the past?

 

Thanks!

 

Susan

[bronxmom2]

Hi Susan,

This certainly sounds like it could be PANDAS.

 

I have one question: have you ever noticed a behavioral improvement when she took antibiotics?

[bronxmom2]

Oh, and a few more things:

 

-- my son (who has most of the things you describe about your daughter) does not have obvious tics either.

 

-- I think you were lucky to have a nuerologist suggest PANDAS!

 

You could try giving her ibuprofin every day(on the theory that PANDAS kids have brain inflamation) to see if that has a positive effect.

[mom md]

Sounds like it definitely could be PANDAS to me. My son has PANDAS and some very similar issues. Auditory processing, sleep issues, involuntary movements, etc. I would ask to have a strep titer done. There is a researcher in Florida by the name of Michele Cunningham who is developing a blood test for PANDAS. I would ask your neurologist if he could look into getting her blood sent down there if he can. Looking back most if not all of Carter's issues can be explained by PANDAS. The basal ganglia functions to filter thoughts etc that come into the brain. When it is not functioning well all things are equally competeing in the childs brain which can lead to all of the symptoms you spoke of. Hope this helps.

Claire

Hello, thank you for allowing me to join this forum to ask questions and gain some knowledge about PANDAS which I have never heard of until yesterday. My daughter has recently had recurring vaginal strep (one was in February and one in March). She's had strep before, earlier in life, maybe a few years ago. She was just cultured for it in April but it was negative and it turned out to be the flu.

 

My daughter (6) has the following history:

sensory processing disorder, diagnosed at age 3

epilepsy, staring, non-convulsive seizures

gluten intolerant, gets very sick when she eats any gluten. Celiac dignosis is unknown this time

malabsorbtion issues, probably from the gluten

very small for her age, probably from the gluten

Impulsive behavior (puts her feet in your face, pokes at you, always picking at you), may not be able to stop talking, etc.

Can't wind down to go to sleep

Tosses and turns in her sleep

ADHD behavior at times

Has some age regression issues at times

Has trouble knowing what to eat like she doesn't have a taste for anything and is very picky about food

 

She has no tics or obvious OCD behavior that I could tell (knowing not much about either). Except in retrospect I have observed:

Everything has it's proper place or order. If someone is doing something in the wrong order that really bothers her

Sees patterns easily (very good at puzzles)

Has been known to have her hand fly out and hit me in the face seemingly involuntarily (only remember this a few times)

Has been known to have inappropriate gestures (grabbing someone's breasts for example) saying she didn't know she was going to do that.

 

I don't know exactly what my questions are but I am wondering, does this sound like PANDAS? I have not noticed obvious behavior changes related to strep, but I have not been looking for that. I would have looked at what she ate for example instead. Must obvious tics be present? I'm kind of scared. I always would rather know so something can be done to help but from what little I've read, it seems there is not much that can be done to help her.

 

Any questions that come to your mind that I should ask her doctor? Anything else I should look for or think about whether I've seen it happen in the past?

 

Thanks!

 

Susan

[Suzan]

This certainly sounds like it could be PANDAS.

 

I have one question: have you ever noticed a behavioral improvement when she took antibiotics?

 

Thank you for your reply! I can't say that I have seen an improvement but only because I was not thinking in these terms before. I swear I've been wracking my brain trying to remember but I just can't!

 

-- my son (who has most of the things you describe about your daughter) does not have obvious tics either.

 

-- I think you were lucky to have a nuerologist suggest PANDAS!

 

You could try giving her ibuprofin every day(on the theory that PANDAS kids have brain inflamation) to see if that has a positive effect.

 

I totally agree with you on the neurologist luck. This guy is really good. Even if it does not turn out to be PANDAS, I love having a doc who knows about this type of thing. I will try the ibuprofin and see if it helps. I appreciate hearing about your son and his symptoms. It really helps.

 

 

Sounds like it definitely could be PANDAS to me. My son has PANDAS and some very similar issues. Auditory processing, sleep issues, involuntary movements, etc. I would ask to have a strep titer done. There is a researcher in Florida by the name of Michele Cunningham who is developing a blood test for PANDAS. I would ask your neurologist if he could look into getting her blood sent down there if he can. Looking back most if not all of Carter's issues can be explained by PANDAS. The basal ganglia functions to filter thoughts etc that come into the brain. When it is not functioning well all things are equally competeing in the childs brain which can lead to all of the symptoms you spoke of. Hope this helps.

Claire

 

Thank you Claire. Although I don't want her to have PANDAS, I am glad to have the feedback about your son and the issues he has. It does sound similar to my daughter. Thank you for the information on Michele Cunningham. I will bring that to my neuro. He is the type to be open to that.

 

I know I'll be back with more questions. I don't know how long until I hear from the neuro about the test results.

 

Susan

[EAMom]

Do you mean Madeleine Cunningham? http://www.ouhsc.edu/mi/faculty/cunningham.html

 

By the way Susan...I think your neurologist sounds great to be open to PANDAS. I agree with the others...I do think your dd could be PANDAS. Where do you live? Folks on this board are always looking for good docs so it would be great if you could post where he practices and his name.

[Suzan]

By the way Susan...I think your neurologist sounds great to be open to PANDAS. I agree with the others...I do think your dd could be PANDAS. Where do you live? Folks on this board are always looking for good docs so it would be great if you could post where he practices and his name.

 

Hi!

 

I live in Charlotte, NC. He is located in Concord, NC right next door. His name is Dr. Corbier and he is a pediatric neurologist. He was recommended to me by my pediatrician who is a Dan! doctor and was the #1 recommended by their office to work with kids like my dd.

 

I plan on taking my other dd too since she has ADHD behavior and he said he has some tests he'd like to run on her too, including PANDAS I'd bet since she has had the same strep issue.