still undecided on PANDAS

[bmom]

Well, our story has been posted before and I wont go into to its entirety. The problem is that I still am trying to figure out which route to go. We went to Dr. Carol Mathews in Cal. last week. We told her of all of the events of the last year and she said it is not clear cut PANDAS. She wants to keep checking the titer levels. She believes that these should be elevated in order to fall into the category. My son was doing well on the Pen. V until last week and then he has been consistently ticcing while on it. He went to a swimming party last week and the next day the tics started back up full speed. He has not reacted to swimming before so I thought it would be ok. Anyway, I am sorry for the rambling, yet I am fumbling around with which direction to go. Dr. Mathews says she wants titers tested anytime there is an increase. I convinced her to also write in her report to try antibiotic even if the titers were not elevated or negative strep to see a pattern. Do you think this would help? I now have to convince my ped. The thing is, for the first 2 weeks while on Pen, he was virtually tic free. Then swimming party, now a week of non stop ticcing while on Pen. Now I am out of Pen. I am kind of waiting to see if he worsens while off. I have a prescription for azith I could possibly try. I made an app. with Dr. Demio (DAN doc) for Sep. I just feel frustrated, sad, and unknowing which he is falling into. Dr. Mathews said 98% of PANDAS do a finger piano playing thing. He does not although while in episode he always does a fist clench thing. He mainly has tics during an episode, yet I would say the first time he was somewhat different with behavior too. He is not clear cut PANDAS, yet if that is his problem, I dont want to let it go either. Thanks all for weighing in with opinions or info as I am back to my wits end and feeling so sad for him today.

[michele]

For us the pen v worked in the beginning but stopped working after a few months. The antibiotic we are using now is omnicef and it has done well for my son. Our first episode of strep was accompanied by the piano playing choriform movements. He was moving his fingers even in his sleep. Then the eye blinking tics. We also had a rough time last summer when we swam everyday. My son does not even put his head in all the way though. He had waxing symptoms all summerthough. I have read chlorine brings out tics. Have you tried to give an increased amount of pen v for a few days while his symptoms are waxing? Or try the azith and see what happens. I know how you feel. I have went from Dr. to Dr. trying to explain these crazy symptoms and episodes too. I think an immunologist can be sympathetic. It was our best result at getting an antibiotic prescription long term. Don't be surprised if your ped is out of their realm on this and hesitiates to write prescriptions. Ours turned to the experts in the field. Part of the problem is the medical community is undecided on a true PANDAS diagnosis and if it exists and how to treat it. Have them treat him as an immune issue /tic disorder and you may get better success. It is hard to always get a positive test for the strep or to get the elevated titiers done at the right time. Try to document his symptoms with a time line. That is helpful when you see the Dr's. Keep up the good work. You are definately headed in the right direction.

 

Michele

Well, our story has been posted before and I wont go into to its entirety. The problem is that I still am trying to figure out which route to go. We went to Dr. Carol Mathews in Cal. last week. We told her of all of the events of the last year and she said it is not clear cut PANDAS. She wants to keep checking the titer levels. She believes that these should be elevated in order to fall into the category. My son was doing well on the Pen. V until last week and then he has been consistently ticcing while on it. He went to a swimming party last week and the next day the tics started back up full speed. He has not reacted to swimming before so I thought it would be ok. Anyway, I am sorry for the rambling, yet I am fumbling around with which direction to go. Dr. Mathews says she wants titers tested anytime there is an increase. I convinced her to also write in her report to try antibiotic even if the titers were not elevated or negative strep to see a pattern. Do you think this would help? I now have to convince my ped. The thing is, for the first 2 weeks while on Pen, he was virtually tic free. Then swimming party, now a week of non stop ticcing while on Pen. Now I am out of Pen. I am kind of waiting to see if he worsens while off. I have a prescription for azith I could possibly try. I made an app. with Dr. Demio (DAN doc) for Sep. I just feel frustrated, sad, and unknowing which he is falling into. Dr. Mathews said 98% of PANDAS do a finger piano playing thing. He does not although while in episode he always does a fist clench thing. He mainly has tics during an episode, yet I would say the first time he was somewhat different with behavior too. He is not clear cut PANDAS, yet if that is his problem, I dont want to let it go either. Thanks all for weighing in with opinions or info as I am back to my wits end and feeling so sad for him today.

[peglem]

Well, my daughter never had elevated titers either, but a very clear pattern of "behaviors" (mostly OCD- she is nonverbal so is hard to tell if movements are tics or frustration) linked to +strep tests. Her pediatrician has actually been the most supportive. PANDAS is not an official dx. (there isn't an insurance dx code for it). He sent us first to an immunologist because as soon as she was off antibiotics the strep came right back. So we wanted to see why her immune system isn't clearing the strep. The immunologist did some testing and declared her a strep "carrier". Her only symptoms are behavioral...BUT, those are symptoms! I could always tell just from her behavior when the strep was back and when the behaviors were absent- negative swabs. Her pediatrician was the one who listened and trusted me. So then we went to see a pediatric rheumatologist, who was dying to dx PANDAS (he said because its so rare), but also pronounced her a "carrier", because there were no high titers. I was so frustrated and confused. Maybe the strep was a red herring and there was something else going on? Finally, her pediatrician just decided that no matter what it is...it responds to antibiotics, zith especially, so we'll just deal with it. I'm not sure what he did about a dx code to justify the treatment to insurance.

 

Personally I think my daughter had the strep problem for so long, her immune system just was not responding anymore...also, I've read somewhere (but don't remember exactly where-sorry) that kids who've had PANDAS for a long time or a lot of episodes, usually don't have the high titers anymore.

 

My other theory is that her strep is part of a biofilm complex that hides it from the immune system and we were only treating/detecting cast-offs from the biofilm. This actually makes a lot of sense to me given her response to "zithromagic". It is the only antibiotic that has been found to break up biofilms.

[bmom]

The other problem is that his tics all involve his ears being plugged. opening mouth, holding nose and blowing to unplug ears, etc. except also the hand clench all of which started while I had strep. Soooo, the doctor just thinks he is reacting to an ear problem with tics. This would also go with the swimming. Yet it all started with my strep. Then got better on the antibiotics. So, I though ah, ha Pandas until the swimming incident. Then, back to constant ticcing so maybe it was an ear problem after all. Or PANDAS---ugh!!!!

[faith]

bmom,

could you go for some time off the antibiotic and see what happens? I mean, maybe these present tics will subside just the same way they did when you started the penv. What kind of tics is it right now? But is this a reaction to the swimming you think? or is he getting sick? If he doesn't have high titers (I guess this doctor matthews did a retest?) then what makes the tics go up?

 

Just reading the above about his type of tics, does he ever say his ears bother him or has pain in there?

Faith

[bmom]

Well, they started almost the same day as I had strep. They started with the hand clench then moved to the ears-opening mouth to pop, holding nose and blowing, blowing air out of nose (which he says helps to unplug), but also an eye blink with the whole thing sometimes. And yes he says his ears are plugged and hurt. And yes I have had 3 doctors look at them and no ear infection, but maybe water in them-cant see. Pediatrician prescribed ear drop antibiotics. no help so far. They are definately tics as they are exaggerated and occuring sooo frequently. Do you think that it is just a coincedence that they began when I had strep, but are due to ear problems? Or is it PANDAS and they are tics involving an ear problem, but due to the strep? It is the chicken vs. the egg situation. He is day one off of antibiotics after 3 weeks on. I think I will see how it goes and maybe do azith. in a little while to see if that makes them subside. I am now journaling everything to see a pattern and hoping one emerges. I am just tired of floundering along and not finding a cause or trigger. Thanks all who can interject.

[faith]

okay, only thing I would say don't do the azith too soon, because you should see if the tics subside alone...if they do while you try the azith then you will think its from that. So then if the tics go on too long being exacerbated without them, then you will really be able to gauge if the azith is of help when you put him back on. Maybe concentrate on some other aspect like his diet and supplements for now.

 

Faith

[bmom]

Thanks I know you are right. Unfortunately I am having no patience at the moment, but will try. I am back to diet restrictions. He is on Bonnies. Today I added the Apple Cidar Vin. supplement. Will see if that helps.

[CSP]

peglem,

 

If a child is a "carrier" does that mean when you all kiss her you would get strep? Just wondering how this effects the other members of your family.

 

From my son's titers it appears that he has never had strep. My girls have never had strep, I have never had strep. Husband is not sure but does not think so.

 

I just don't understand how some families can get strep a lot and others never get it.

 

((((bmom,))))

 

Just wanted to let you know I understand that felling of not wanting to wait.

 

C.P.

[Dedee]

BMOM,

 

I am curious as to when you ran out of the Pen V? Was it before or after the swimming party? My sons tics alway return within 48 hrs of stopping an antibiotic. Also, I have heard of many here who say that the chlorine and other chemicals will worsen their childrens tics. Even though he hasn't done it before, he may just now become sensitive to it. I don't believe that means it is not PANDAS. Many PANDAS children have other triggers other than illness. Regarding the "finger playing thing", Dr. Murphy told us the same thing when I told her how my son had a "tic" that involved his fingers at one time. However, that did pass after he began antibiotics. It doesn't have to be a permanent symptom, only that it has happened at some time during the illness. Usually following a strep episode or a flare up. It could easily be overlooked if there were other tics that were more bothersome. I am so sorry you are struggling. I know how frustrating that is. I hope you are able to find a diagnosis and the help you need. Hugs and prayers.....

 

Dedee

[bmom]

The tics have been back for a week and we are only 24 hours out of the Pen. If the pool triggered them again, how long does it take to get out of the system? My son has never done the finger playing, just a hand crunch. Perhaps it could be the same urge? I just want to find a direction, whether it be Pandas or not. I think my doctor was ruling it out somewhat because my husband has minor tics. Yet he had many sore throats as a child and my son has had a problem with strep his whole life. I will wait and see his reaction without antibiotics in the next 48 hours. Thanks.

[kim]

CP,

 

I just don't understand how some families can get strep a lot and others never get it.

 

I'm going to post something on the basalganglia thread that might help to explain this. Again it might leave you with more questions than answers, but I think it's worth thinking about.

[peglem]

peglem,

 

If a child is a "carrier" does that mean when you all kiss her you would get strep? Just wondering how this effects the other members of your family.

 

From my son's titers it appears that he has never had strep. My girls have never had strep, I have never had strep. Husband is not sure but does not think so.

 

I just don't understand how some families can get strep a lot and others never get it.

 

((((bmom,))))

 

Just wanted to let you know I understand that felling of not wanting to wait.

 

C.P.

 

Carrier means they harbor the bacteria but do not get sick from it. They can infect others. I don't think my daughter is a carrier, though, because 1) She does gets symptoms, they are just atypical, all behavioral, and 2) There have been many negative swabs-which should not happen for a carrier.

 

My daughter's titers vary from extremely below normal range to slightly above normal range. I think this has more to do with a poorly functioning immune system than anything else, since "typical" symptoms are the signs that the immune system is fighting the disease. My daughter NEVER gets a fever. She used to, years ago...but not for a very long time.

[bmom]

Peglem, Could you tell me how her doctor diagnosed her with PANDAS? Was it titer levels or purely on reaction to antibiotics?

[michele]

How is his handwriting during these episodes? The repeat hand movements may be similar to the finger chorea. My son often gets the finger cracking compulsion too during episodes. However he originally had finger chorea movements. This is a hard disorder to get an official diagnosis. We went to the same neurologist for five years and he watched, waited and observed my son's symptoms. Until this year when he was in school and having difficulty he never offered any treatment with medications. Now he is treating him as he would a tourettes patient. Trying to calm him and reduce the tics and compulsiveness. Maybe down the road they will find tourettes and PANDAS are part of the same syndromes. My son has immune issues but also tic symptoms and emotional and OCD plus attention. I do have to say our neurology Dr. doesn't believe the antibiotics would help him but I have been convinced they do so I use an immunologist to prescribe them. It may take you more then one Dr. Don't get too caught up in a diagnosis. It is not as important as getting the treatments he needs. All the best!

 

Michele

 

Peglem, Could you tell me how her doctor diagnosed her with PANDAS? Was it titer levels or purely on reaction to antibiotics?