Advice needed- I hate these $$%%## tics !

[acdrobert]

I am trying to decide if I want to put Thomas through an immunological workup. I think we can make through the long blood draw with many labs, but I don't know about the allergy skin testing. Can anyone tell me what this really involves. My local peds who has been a little meek with me lately, finally admitted to me that he went to a conference at Stanford and they totally poo-pooed the whole PANDAS concept. So he thinks that Thomas doesn't have any immune issues. Thomas has suffered through quite a few sinus infections until we started on the Augmentin post IVIG. He then had 3 cases of Impetigo (strep or staph skin infection) until we switched to Azith this summer. He is currently on 250 mg q day. Those are his only symptoms of Primary immunodeficiency disease. is that enough. I guess I have always thought he wasn't quite "sick enough" for PID IVIG helped our other PANDAS symptoms. His ADD symptoms have gone away His handwriting has gotten better, His separations anxiety has gone away. We never did have any OCD. We still have these blasted tics !! His recent CamKinase was 170

 

Even if it is determined that he has some low IG classes or fails some pneumoccocal titers, will monthly IVIG stop the ##$$@@ tics ? I did think that he had a mild virus almost immediately after starting school. He was running a low grade temp with some sniffling. The daily Advil I give him was controlling the tics but now its not. All other symptoms of that mild virus have gone away but the tics have gotten louder and more frequent.

 

I feel like I am not going anywhere that we are just stuck.. We take all these supplements and meds and nothing seems to work. My dh thinks that he will always have these tics but I am not ready to throw in the towel just yet.

 

Thanks for letting me vent

[acdrobert]

in Dr. Cunningham's study his Anti-Lysoganglioside score was elevated at 640 with a normal range of 80-320. Does anyone know what this means ?

 

 

 

 

 

 

 

 

I am trying to decide if I want to put Thomas through an immunological workup. I think we can make through the long blood draw with many labs, but I don't know about the allergy skin testing. Can anyone tell me what this really involves. My local peds who has been a little meek with me lately, finally admitted to me that he went to a conference at Stanford and they totally poo-pooed the whole PANDAS concept. So he thinks that Thomas doesn't have any immune issues. Thomas has suffered through quite a few sinus infections until we started on the Augmentin post IVIG. He then had 3 cases of Impetigo (strep or staph skin infection) until we switched to Azith this summer. He is currently on 250 mg q day. Those are his only symptoms of Primary immunodeficiency disease. is that enough. I guess I have always thought he wasn't quite "sick enough" for PID IVIG helped our other PANDAS symptoms. His ADD symptoms have gone away His handwriting has gotten better, His separations anxiety has gone away. We never did have any OCD. We still have these blasted tics !! His recent CamKinase was 170

 

Even if it is determined that he has some low IG classes or fails some pneumoccocal titers, will monthly IVIG stop the ##$$@@ tics ? I did think that he had a mild virus almost immediately after starting school. He was running a low grade temp with some sniffling. The daily Advil I give him was controlling the tics but now its not. All other symptoms of that mild virus have gone away but the tics have gotten louder and more frequent.

 

I feel like I am not going anywhere that we are just stuck.. We take all these supplements and meds and nothing seems to work. My dh thinks that he will always have these tics but I am not ready to throw in the towel just yet.

 

Thanks for letting me vent

[EAMom]

in Dr. Cunningham's study his Anti-Lysoganglioside score was elevated at 640 with a normal range of 80-320. Does anyone know what this means ?

Hopefully Dr. Cunningham will eventually come out with what these all mean. My dd is more OCD/emotional lability (has mild tics when things get bad) and her anti-lysoganglioside was 1280.

 

I thought this was an interesting comment by pixiesmommy:

According to Dr K (when we asked why IVIG instead of PEX,) IVIG has better results for presentations with psychiatric/behavioral components and PEX has better results for presentations where tics are the main component.

 

I wonder who was talking at the Stanford conference that swayed your doctor against PANDAS. A Stanford rheumatolgist told Diana that PANDAS is like rheumatic fever of the brain (and confirmed for our ped that our dd should stay on prophylactic abs). We also had IVIG at Stanford b/c Dr. Cunningham's blood results were enought evidence for our immunologist. For the most part, Stanford docs don't know much about PANDAS, but the couple we have dealt with have eventually caved into reason.

[KeithandElizabeth]

Hello:

 

You will have to read my recent post about our immunological results. Our son was never very sickly until this bout of horrific PANDAS. Based on our results, we will be doing IVIG every 3 weeks for 6 months. I think that the information can only help your family. I do wonder how IVIG can affect the results since you have already had the IVIG?

 

Elizabeth