acdrobert

Hello everyone. It has been a while since I have posted. My ds9 Thomas has fairy settled into a post IVIG life of mild humming sounds and vocal tics that are his main Pandas symptoms. But now my friend and her son have some interesting issues. This boy (9) had a bad case of pneumonia in November. This child eventually recovered from the respiratory illness. Despite multiple tests, no one could say what the offending organism was. He has not had a strep blood test but throat swab was negative. A short time afterwards he son developed a constant gagging movement which means that he can't keep anything in his stomach at all. He has lost a lot of weight and now has a tube from his nose to his small intestine that a constant feeding goes through.He has the diagnosis of Gastroparesis from a Gastroenterologist. Still this constant gagging/barking sound continues I remember thinking "wow I wonder if this is some sort of tic" Now I am thinking it might be ! He has some other jerks, throat clearing sounds, and rapid eye movements that are definitely tics. He now has had some manic episodes along with a decrease in fine motor control that controls his handwriting. Has anyone had this sort of intial presentation ? Gastroparesis has some neuro components to it. Do you think I should advise this family to be thinking PANDAS and try to see and expert or at least get a smaple drawn for Dr. Cunningham's study. Anyone had these type of symptoms ? Please let me know ! Many Thanks ! Anne

Advil has made our lives much better. After some bad PANDAS symptoms on September 17-18 following exposure to a strong GI virus that sent 5 of Thomas' classmates home from school on the same day, Thomas has been relatively tic free. He has been below his baseline of faint vocal tics with occasional head bobbing. Advil helps keep his tics under control when he is at school. I read somewhere that 200 mg a day was a safe dose for a 60 lb kid. - some previous post. I try not to give it to him everyday just when the tics are ramping up.

We had an "interesting" experience, on Friday night. Thomas came home from school with acute big time PANDAS symptoms, the worst I have seen since IVIG last March. Ticcing ,separation anxiety and ADD symptoms...as bad as he gets. I panicked and called Dr. K who told me I could start another 5 doses of prednisone. (Prednisone has worked great for us in the past) Bingo ! by the second dose Thomas was back to his baseline of mild vocal tics and no ADD or separation anxiety. Yesterday I found out that on Friday 5 kids from his class were sent home with high fever and nausea and vomitting. SO.....he obviously got exposed to a strong yet short acting GI virus. Instead of having the usual viral symptoms (in this case fever, N and V), his body responded with PANDAS symptoms. Interesting........I am now convinced that he has some immune issues and I have made an appoiontment with Dr. O'Connor at Carolina Asthma and Allergy. Its a drive for me but at least when I tell her that Thomas has a high Cam Kinase score she will know what I am talking about. We get to go on October the 8th. Wish us luck ! Anne

My ds8 had IVIG with Dr. K last march and we were shocked when BCBS of NC sent us a reimbursement check. They ended up coving all but about $1000

How expensive is a visit ? How much does she charge for a consult ? Is she in network for BC/BS ?

I have been thinking that ! I wonder if there is something in the enviroment here. I am from the eastern part of the state, down near the beach.

We had a great response to the Prednisone. The first time we took it (5 day course) we didn't tic for 5 weeks. Then slowly it came back. We have sense then gotten prednisone twice for tic relief, once after a bout with Impetigo. It stops our tics but the effects don't last as long. The last time he started ticcing again 3 days after the last dose. I have wondered what it would happen with a month of prednisone that I have heard other people try.

Hey I have finally decided that I do want to pursue the possibility of Thomas having some immunlogic complications along with his PANDAS. I have pursued some other providers closer to me, but I have gotten some "we don't believe in PANDAS" comments. Now I would like a doctor willing to work with us, doesn't matter how far I have to drive. If anything just to rule out other immune deficiencies. Whats the latest scoop on Dr. O'Connor (or is it O'Connell ? ) Are parents still pleased ? What is the wait time for an appointment ? Is there a connection with Dr. Latimer ? Thanks for keeping me in the loop Anne

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

Thomas suffers all kinds of tics but the seem to change on an everyday or every other day basis. Good days are when he has faint vocal tics with some eye blinks. Bad days are when we have both arm and legs flapping tics. (He is 8 too by the way with very similar Cam Kinase scores.) I am hoping your sons tics will at least change so his legs will get some relief. Homwork anxiety definitely makes our tics worse !

It doesn't say on the bottle. I can try to find out ! How is your daughter doing ? I hope better !

Hello - I went to the natural foods store today to get a new probiotic. The very nice and knowledgeable owner there told me about Kal Daycare Defense. It is for small children but you can give it up to 3 x a day for older ones (Thomas is 8) What caught my eye was that it had 5 million viable organisms but also 20 IgG immunoglobulins from colostrum. Thomas is adopted from an orphanage in Russia so I seriously doubt he was breast fed and got colostrum. Has anybody tried it. oh...and no strep in the probiotic mix ! quote name='dee45' date='Sep 4 2009, 06:42 AM' post='37278'] Hi, what is the right amount of probiotics for a child on antibiotics? what brands does everyone use?? Deanna

This sounds a lot like Thomas. I have to admit that the blood draws make me upset too so I am not the most rock solid of parents. I just hate it when he gets so afraid. I didn't think about Ativan having the opposite effect.

unfortuneately we have tried the cream. I think it must make a difference but his F or Fl reaction is stil the same. His screaming outlasts the actual blood draw by at least several minutes.