Help with PANDAS for 10 year old girl

[MomOfOne]

Hi,

I am new to this so please bear with me. I posted under this title because there seems to be alot of discussion about

PANDAs here.

My 10 year old has been sick for 1 year. It started with two back to back strep infections (that were treated right away with antibiotics.) We still have no answers. Her symptoms are a constant head ache and stomach ache. We have tried everything from elimination diets to testing for mold/radon. She has been on numerous antibiotics and nothing seems to work. Her ASO Titer has always been elevated (above 400) even though she has not tested positive for strep for 1 year.

We need ideas. I am researching PANDAs but really don't know much about it. She doesn't seem to have OCD at all.

She does have major seperation anxiety from me but really, she has been like that since day 1!

If anyone has any ideas or even more information about PANDAs, it would be helpful.

 

Thanks,

MomofOne

[michele]

Welcome. You've come to the right place. Many parents on this board have kids who have PANDAS. Use the search option and put in PANDAS and you will find a wealth of knowledge. While no two PANDAS cases are the same they do have common characteristics. One way my son shows compulsion is urination frequency, and having to do things a certain way every time. Also he gets seperation anxiety from me too. Last year it was worse in preschool though. He gets very fixated on ideas and themes. What about emotional liability? Does your daughter get moody and cry easily? He can go from amazingly happy to terribly blue in a matter of seconds. He also has attention issues and has a hard time sticking to things that aren't his choice of topic. It is great you were able to get the titers and the follow through for the last year. What kind of Dr. has been following him? Did they diagnose him with PANDAS? Be glad if they did because many of us have dealt with this for years and had a hard time getting a diagnosis. We do a gluten free diet because gluten tends to give my son mood swings and hyperness. Are you currently using medication or supplements? We use nystatin for the stomach yeast problems. Is your child having any neurological trouble? My son has had tics like eye blinks, finger cracks and toe cracks and knee bends. Also this may be a form of OCD because it is repetitive. He has trouble with staying calm like he has too much dopamine in his brain. My son takes antibiotics daily Omnisef plus other supplements to help calm him down like Taurine and Gaba calm and 5 HTPT. Plus we give him acidophilus for his stomach. I hope you find some answers here. It sounds like you are on the right track.

 

Michele

 

Hi,

I am new to this so please bear with me. I posted under this title because there seems to be alot of discussion about

PANDAs here.

My 10 year old has been sick for 1 year. It started with two back to back strep infections (that were treated right away with antibiotics.) We still have no answers. Her symptoms are a constant head ache and stomach ache. We have tried everything from elimination diets to testing for mold/radon. She has been on numerous antibiotics and nothing seems to work. Her ASO Titer has always been elevated (above 400) even though she has not tested positive for strep for 1 year.

We need ideas. I am researching PANDAs but really don't know much about it. She doesn't seem to have OCD at all.

She does have major seperation anxiety from me but really, she has been like that since day 1!

If anyone has any ideas or even more information about PANDAs, it would be helpful.

 

Thanks,

MomofOne

[MomOfOne]

Hi,

I don't think she has TICS at all. I need to look it up though because they may be symptoms I am not aware of...you mentioned knee bends...never had even heard of that.

She does have mood swings though and does cry alot. She can be really happy one moment and really sad the next. She

always complains of a headache and stomach ache. She has lack of enthusiam all the time. It is hard to watch because before she got sick she was the most athletic kid imagineable. She won every strength and endurance race at school and won a major karate tournament. She was always competing against kids alot bigger and older than her. Now, I can't even get her to leave the house. I am homeschooling her at this point.

She has not been diagnosed with PANDAs. She has seen every medical doctor imaginable...Pediatrition, ENT, Hematologist, Oncologist, Gastrointoligist (sp?), Allergist, Immunologist. We get bounced from place to place. At one point her lymph nodes in her stomach were enlarged but now they are back to normal (hence all the doctors she saw). She has never seen pyschiatrist or psychologist but I am starting to think that maybe she should. I don't know how much of her issues are truly physical versus pyschological or if it is a combination of both. (And how on earth can you tell?)

We tried a Gluten Free diet for about 1 month but it didn't see to make a difference. We also tried a sugar free diet. Kudos to you folks on a Gluten Free diet! That was difficult. Sugar-free is 100 times easier!

Does anyone know about finding a doctor that can diagnosis PANDAs?

 

Thanks,

MomOfOne

[P_Mom]

Hi Mom of One,

Did you get the message I sent you? Look up on the upper right hand corner of the screen and it will tell you if you have any new personal messages, if so, just click on that.

[michele]

http://intramural.nimh.nih.gov/pdn/web.htm

Here is an article from NIMH on PANDAS. Read through the criteria. Tic disorders are very common with PANDAS as is OCD. It resembles tourettes syndrome alot. The knee bends were a compulsion like touching the ground everytime he got out of the car. Things become very repetitive during exacerbations. He wants to do things the same like turn on every light in the bathroom. He has never become obsessive about handwashing although he can take some long showers. The PANDAS symptoms last for about two months after exposure to strep. I get what you mean abou difficult moods. Maybe she is nervous and it is causing stomach and head aches from worry. We have been through the Dr.'s too. That is another thing that freaks him out blood draws. How is her coordination now? My son also has motor delays and has worse trouble with handwriting during flare up of symptoms. I currently take him to an OT. It may take you more then a year to get a diagnosis. We are going on five years and just got one this year. The neurologist still won't believe it though. Dr. Murphy is the specialist in the PANDAS field and she is a psychiatrist. She is one of the only Dr's with experience with PANDAS cases. Also I've read juv rheumatoligist can be a good Dr. for PANDAS. I am sorry your daughter is having such problems that she can not go to school. That seems common too from what I've read. It is a psychiatric disease so they do mental issues. It is very sad what these kids go through. I totally understand your concern and pain. It is the worse thing as a parent to see your child slipping awat from who they were. Please keep us posted.

Michele

 

quote name='MomOfOne' date='Jan 28 2008, 09:26 PM' post='20118']

Hi,

I don't think she has TICS at all. I need to look it up though because they may be symptoms I am not aware of...you mentioned knee bends...never had even heard of that.

She does have mood swings though and does cry alot. She can be really happy one moment and really sad the next. She

always complains of a headache and stomach ache. She has lack of enthusiam all the time. It is hard to watch because before she got sick she was the most athletic kid imagineable. She won every strength and endurance race at school and won a major karate tournament. She was always competing against kids alot bigger and older than her. Now, I can't even get her to leave the house. I am homeschooling her at this point.

She has not been diagnosed with PANDAs. She has seen every medical doctor imaginable...Pediatrition, ENT, Hematologist, Oncologist, Gastrointoligist (sp?), Allergist, Immunologist. We get bounced from place to place. At one point her lymph nodes in her stomach were enlarged but now they are back to normal (hence all the doctors she saw). She has never seen pyschiatrist or psychologist but I am starting to think that maybe she should. I don't know how much of her issues are truly physical versus pyschological or if it is a combination of both. (And how on earth can you tell?)

We tried a Gluten Free diet for about 1 month but it didn't see to make a difference. We also tried a sugar free diet. Kudos to you folks on a Gluten Free diet! That was difficult. Sugar-free is 100 times easier!

Does anyone know about finding a doctor that can diagnosis PANDAs?

 

Thanks,

MomOfOne