Revisiting PANDAS

[sandree]

Hi,

 

My daughter has severe OCD and we had some strep testing done. I believe it was a throat culture and DNASE. Both were negative but I am just not sure that we have explored this option enough to put it to rest. She has not had any obvious cases of strep for years though she used to get it. She has a lot of rage and I believe her immune system is not working well. She has also been diagnosed with aspergers and sensory processing disorder. All this happened at about 12 years old and she is now 15. We have been doing a biomedical program for 2 years and she has been GFCF. The OCD developed about a year ago and before Christmas it really intensified to the point that it is now her dominant problem and she is on a medical leave of absence from cyber school as she cannot even do schoolwork any more.

 

I am at a loss how to find someone (especially someone who takes our insurance) who can really investigate this. I am tempted to go to our family doctor (who is probably not even familiar with the term PANDAS) - take some literature along and ask for a round of Zithromax. Would that be a reasonable approach or do I need to find a pediatric neurologist or someone who specializes in PANDAS?

 

Thanks so much for your help. I am really struggling to help this girl - she is so miserable.

 

Sandy

[Caryn]

Sandy,

I am wondering why you are doing GFCF. Is this the result of test results, if so, what kind? If not, how did you come to try this route? Also, what kind of diet is she on specifically right now? (food types, name brands). Is she cheating at all on the diet when she is with her friends? Have you ever done any gastro testing?

Does she have seasonal allergies? How are her sleep habits?

Caryn

[sandree]

Hi Caryn,

 

We started this journey focusing on her Asperger's syndrome. At the beginning of our journey she had gastro problems, the pediatrician suggested trying gluten free and it helped her stomach immediately. Then I started reading autism forums, and added the CF part. She is very rigid about sticking to the diet as she is afraid of the stomach pain and is kind of rigid anyway because of aspergers. I am also GFCF as I had Enterolabs testing done and was positive for gluten and casein intolerance as well as having the genes for gluten intolerance and celiac. But my daughter is adopted so that is not a clue to whether she is truly celiac. She was gluten free before the gastro suggested testing for celiac and she was unable to challenge with eating gluten because she felt so bad when we added it back in that we have just stuck with the diet and don't have definitive testing on celiac for her.

 

The OCD developed later when we were doing tons of supplements (the Amy Yasko protocol) to detox her from heavy metals, virus and bacteria. We are taking a supplement break because of the OCD and the cost of the supps she was on (I have just run out of money for that protocol which is very expensive). The OCD has really become the most debilitating part of what goes on with her.

 

She is very complicated and has very bad sleep problems at this point. She sleeps most of the day and is up most of the night. I just tried confronting her about it again yesterday and the rage starts immediately. I know that she tried last night to go to bed earlier but I believe it still took hours for her to actually get into bed. Her OCD is now tied up with sleep somehow. She does not have seasonal allergies though at the beginning of this journey she had chronic hives for a time.

 

Basically, she is very gifted, has asperger traits, severe OCD, sensory problems, adopted internationally premature with a two month stay in a hospital at birth - so there are many factors happening. We are seeing a functional neurologist whose outlook is that the left and right brain are not functioning correctly - in her case the left brain and left cerebellum are very weak which does impact digestion and immune function. She is supposed to be doing exercises to strengthen the left brain and cerebellum (similar to the book "Disconnected Kids") but she can't do the exercises because of the OCD. Just thinking that if antibiotics could relieve the OCD a bit, she might be able to work on the exercises to get at the real crux of the problem which I think is impaired neurological functioning due to genentics and her early infant experiences.

 

Whew - so there we are - still not finding many wows for her.

 

Thanks, Sandy

 

 

 

Sandy,

I am wondering why you are doing GFCF. Is this the result of test results, if so, what kind? If not, how did you come to try this route? Also, what kind of diet is she on specifically right now? (food types, name brands). Is she cheating at all on the diet when she is with her friends? Have you ever done any gastro testing?

Does she have seasonal allergies? How are her sleep habits?

Caryn

[dcmom]

Sandy,

 

Please let us know where you are located, so someone can maybe recommend a knowledgeable doc for pandas, they are hard to find...

[sandree]

I am in Reading, PA - about an hour from Philadelphia.

 

Thanks, Sandy

 

Sandy,

 

Please let us know where you are located, so someone can maybe recommend a knowledgeable doc for pandas, they are hard to find...