Tonsils...Antibiotic Advice

[michele]

Kelly,

Time will tell. I do see his condition as very saw toothed. We could always pin point a trigger illness to the day his symptoms started. It was always predictable that the behaviors lasted up to two months after exposure. But when they came on end of July and wouldn't leave I got scared. Everytime they seem to get worse and last longer. Dr. Erenberg believes they went away before and will again. He also says the ADD will hinder him the most because of school. At this time he has had good school reports so we don't need help there yet. His teacher for this year is amazingly patient with boys. That seemed like one area he would be willing to medicate. If we can get the OT from school and private therapy he should be good at school. I think the diet can't help it is very healthy. I do question the antibiotic daily helping since he still had the episode but he has not had strep just the PANDAS symptoms. I should try without it but am too chicken! Th supps have to be helping too. I've seen mood improvements and less compulsive thoughts while on it. I think the nystatin helps with the bladder feeling too. He probably gets yeast in the bladder from the daily antibiotic. Dr. Erenberg did not believe in the gut brain connection said the antibiotic fights the strep and has nothing to do with the gut. Dr. Demio believes the yeast is a result of the antibiotic and his body not eliminating properly. Michele

Michelle,

Inyour honest opinion, do you feel all the supps. and diet Dr. DeMio has you on are working? Or do you feel antibiotic and time between illness that is helping?

Kelly

[emma1]

I feel very depressed to report I have been at this for months now, and I think I am a lousy investigator! I started with supplements only, and added one every few days. When I got close to the doses in Bonnie's, I tried those. At that time, we (finally) figured out the strep connection, with very high strep titres, and so started antibiotics too. During this time, I began trying to clean up the diet, but I have a teenager, so it is a little harder, as she doesn't always follow my instructions. We tried casein free for about 4 weeks -- I didn't notice any improvement. We also tried gluten free -- but honestly probably didn't make it as long as you need to (six months?).

 

For us, I eventually stopped everything but the antibiotic. I got better results after stopping the supplements, so I think something I added was doing more harm than good. I added back in the probiotics first, because of the antibiotics. We tried stopping the antibiotics, and experienced almost an immediate regression, so are on long-term Pen VK right now.

 

I then tried fish oil, but I THOUGHT I saw increased symptoms, so stopped. I'll probably try again later. I have a multi here, but haven't started it yet. I did add in one 500 mg of Inositol for the ocd symptoms. Can't say it is helping, but I don't think it is hurting.

 

Most days, symptoms are mild (that is -- I can notice a few; most would not notice anything). Every once in a while, for no reason I can figure, symptoms flair for part of a day, and then settle back down.

 

My feeling is -- if I could get a stronger antibiotic (augmentin or zithromax), she could be symptom-free, but I don't know if that would be best or not. I mean, if she is on the stronger antibiotic, and then symptoms get worse, THEN what do we do?

 

I tried talking with a DAN, but honestly found her advice very simplistic, and overall, not helpful. She was insisting on tons of tests, and I just thought my daughter would totally freak out.

[heveritt1]

Hi there, I thought I would give you my quick tonsil story. My entire story is long with many, many doctors and now a naturalpath. My son started with an eye tick at 4. He has never actually had strep throat, but his titers were high when this started. All his symptoms point to PANDAS, but there is not a doctor around here that will diagnos it as such. We went on antibotics, it went away. Quit the antibotics, it came back. This went on and on and his behaviour was pretty bad at the same time. Over the summer we went to the ENT (this was before our real research and our visits to Duke and a neurologist, etc). We decided to take the tonsils out, it was a long shot and the doctor never said he could see anything wrong.

After the surgary the doctor said that his tonsils were "rotten" and full of bacteria, this is gross, but they "burst" when he touched them. Needless to say, we were glad we had them out since we would have never known they were not healthy tonsils, however, Strep was not the bacteria in the tonsils. It did not really fix that problem and the tic was back in 30 days - along with some really difficult behaviour at school.

 

Anyway, we are still trucking along. We went through 2 months of antibotics to get rid of it this time so we are keeping our fingers crossed. Good luck with everything.

 

 

 

Thanks Michele. I know tonsil removal won't cure PANDAS, but, if it reduces strep infections, then....... Anyway, it wasn't an issue of choice for my older son. His tonsils were large and so were his adenoids, he also snored and mouth breathed. I took him in for evaluation from ENT and when he stuck the little microscope thingy up his nose and then down some, we found the left side of his airwary through his nose was 100% blocked by his adenoid!! We had removal based on that, it really wasn't an option, the poor kid couldn't breathe. Now, he sleeps like a baby, no snoring!! I just hope this helps with strep, too. I know it is a good thing, the last time he had strep, it took two rounds of antibiotics to get rid of it. Those huge tonsils most likely kept a hold of the strep bacteria. Anyway, this just happened early Nov., I'll keep you all posted!

Thanks!

Kelly

 

Also, considering taking my younger son in for evaluation from ENT. (more severe PANDAS case than my older son) I read that kids with tonsils are 3 times more likely to get recurrent strep. I don't know, I am not trying to cure PANDAS, just do what I can to keep strep at bay! (I do know you can still get strep without tonsils.. I just know it shouldn't be as often or as bad)

[emma1]

Just wanted to add -- I did ask our doctor about removing tonsils. He said that those without tonsils get strep less often. But then said -- with PANDAS, he recommends keeping the tonsils in, because without the "protective effect" of the tonsils, the strep might go elsewhere in the body to hide.

 

Didn't understand exactly, but bottom line is he felt that the tonsils should stay in, and seemed pretty definite on it.

 

Again, I must note that our doctor is not a PANDAS expert.