bmom

I found someone in town who does this. My nephew has been doing the BAX 3000 (doesnt have tics) and has really good results with his allergies. I was able to find a chiropractor in town, but I dont know anything about him. Do you know the order that works? I would hate to have my son go unless it is effective.

Does Dr. B do the exact IVIG that Dr. K does?

Strep has gone through our house several times in the last few years. My son got IVIG a year and a half ago. 3 months in, while on Augmentin 500 mg. he still got strep again. I want to make sure we have broken the strep cycle by checking for family members. Heres what we HAVE done: Pandas son and non pandas daughter had tonsils and adnoids removed. (Daughter due to bacteria harboring in tonsils :staph), Pandas son has titers run frequently. Just had daughters and husbands ran. Working on getting mine done too. Here are the test results: Pandas son negative for streptozyme. Low ASO and Anti DNASe. Daughter who is five: Streptozyme: negative ASO 14 Antidnase 1:170. This is the very high end of normal range. She is not showing any PANDAS behavior so Dr. T says we dont treat. Husband: Streptozyme:POSITIVE 1:200. ASO 167.7 and DNASe: 1:120. Normal for kids, but not an adult. Husband did 10 day course of Biaxin. Now what? Should I have him retested? What do you think of daughters numbers? Besides get myself tested, what else should I cover? We have no pets, just fish and guinnea pig.What is the streptozyme test about? It is Dr. T's test.

Could I ask what the total of the IVIG was? Perhaps it is worth going to Dr. B if it is a less amount. Does he do phone consults? Will he do an appointment and then IVIG in one visit if we are coming across country?

It is hard to figure it out. We are probably heading for IVIG #2 this summer. We have saved over the year and half in case we needed to. My son weighs over 100 lbs. The first time we withdrew from our retirement fund. Our insurance denied reimbursement. We dont expect them to help out this time either. Ughhh!!!!

Is shirt chewing a tic? My daughter chews on sleeves and necks but not all the time. I am hoping she is not PANDAS. I do remember my son used to come home with his neck completely drenched from chewing. My daughter has not shown any other signs. My son by the age of 5 had some transient tics and other things that I look back on now. I have had her titers ran. She was 14 ASO and 170 Dnase. My son has not had high titers. His are always low. Daughters immune system is much stronger!

Sorry, erased some!

He started the Biaxin because in the last couple of weeks he had a major upswing in symptoms, mainly tics. He had IVIG a year and a half ago. Things had been good for the last 6 months prior to this. Not symptom free, but ok. The year after IVIG we had seen improvements, but it was still a bumpy road. He had gotten strep 3 months after IVIG. Phone consult this week with Dr. K to get a game plan.

My son used to have this reaction when we were first trying to get him on antibiotics. He would have one day of really bad ticcing after starting a round of antibiotics and then great day 2 on. This is day 7 though! I really do not know what is going on. He lost 2 teeth the last 2 weeks, and I guess that is part of it. Although he has lost teeth like that before and nothing close to this bad. He hasn't been this bad since the initial onset prior to knowing of PANDAS and he was without antibiotics. We tried to get him tested for strep, but had to leave the urgent care after waiting 3 hours. I would think he would test negative now even if it was strep. I do not really think it was strep, but was trying to rule it out. I think allergies may play a role, but we have had allergies before and no ticcing. So ????. This is pretty bad! Trying to set up a conversation with Dr. T. Have a phone consult with Dr. K for next week. Ugghh... Thanks for the imput.

Has anyone seen old behaviors return with Biaxin? My son started Biaxin 6 days ago and his tics are changing daily, sometimes hourly. We are seeing a lot of old ones return suddenly and then leave. I dont know if he is having a bad reaction or if this is turning of the pages. He has up to 5 going on right now when usually there is only one at a time.

for those that Biaxin was a big improvement, how long on it did you see a positive result? We are on day 5 and nothing good yet!

Thanks Kelly! I can always count on you for a reply! I have been very busy voting everyday and crossing my fingers! I am working with both doctors somewhat, but mainly doc T. Last time I talked to Dr. K he said steroid burst and then possibly another IVIG if needed. I am not ruling either out, but like the other options Dr. T has: different antibiotics etc. We shall see! Would love to say SOMETHING is a cure, but IVIG has not been that for us. I know my son had this for years prior to treatment and so that plays into the overall picture. For some, I would say IVIG is a cure. Perhaps another IVIG would be it for us!

My sons tics have kicked up the last couple of weeks. He now is doing a leg lift and blinking. The leg lift is one I have never seen before. Sort of like you were to kick yourself in the behind. I think the new problems are from him losing a tooth. Do you guys see this with teeth loss? He lost one last week and says the other one is loose. Dr. T wants him on 10 days Biaxin as the Azith does not seem to be helping. How do your kids do on Biaxin? He has not done this one before. He did do well on high dose Augmentin. Azith has never seemed to really help him. His symptoms are mainly tics. I was just hoping to make it through this school year, but kids have been asking him about the blinks!

We did IVIG over a year and a half ago with Dr. K. He said that he likes to get rid of all the symptoms if possible and if things get bad enough, we will do another IVIG. It was out of pocket $10,000 for us last year and will be more as he has gained some weight if we do it again. Things are not bad and so we are the wait and see mode. I am also consulting with Dr. T and have a phone consult with him tomorrow to go over blood tests.

Thank you! I have tried Benedryl and Clariton, both with negative reactions. Please let me know how the Allegra goes. We currently have eye blinking. This one seems to be one of the usual ones that comes and goes. His eyes do look a little red. Not really any other symptoms to speak of like sneezing or stuffy nose like he usually gets. We are on Azith and have done IVIG and t and a. Hoping one day to be over it!

Those of you who have tics as a symptom with PANDAS, do the tics change or are they the same tics all the time? My sons tics have recently picked up again (I think allergies are the culprit) and they are changing every few weeks or sooner. They are moving all around! Just when I think I have settled one down, in another comes into our lives.....

Could you tell me what symptoms you see in your children when they are having trouble with yeast? Thanks!

For my son, the constant pee feeling is a huge clue of strep. The last few times he had strep he has done it!! The last time, he had no other symptoms of illness, and I thought that for sure he did not have strep. Dr. K said take him in to be sure and have him tested. Sure enough, positive on the rapid.

oops, sorry. I just read a recent topic-same discussion. I guess I am not the only one with this situation. I will try some things suggested in other post. Any other ideas still appreciated.

Have any of you been in contact with Dr. T lately? I have been emailing and calling to get blood test results and no answer. If so, how did you get in contact with him? Thanks!

Sounds like you have some good ideas. We are not symptom free, but better and I feel like I should be helping do something. Let me know if I can help. You can pm me and I will give email and phone if I can help.

My son had IVIG over a year ago. 4 months post IVIG, he started getting a return of PANDA symptoms. He was not sick that I could tell. I had him tested on the rapid for strep just to rule it out. He was postitive. I had the whole family checked and we were all positive with no symptoms. He did zithromax for 5 days and his Augmentin. Symptoms subsided. We upped his preventative dose and things were fine. Reinforced that strep is my enemy that can strike with no symptoms. Hope that helps.

We were told that my son is allergic to Keflex. He got the rash reaction around 2 to it. That was 8 years ago and we have not tried it since.

This is something I worry about as my son will clearly need some dental work. I have procrastenated it. I wonder if the invisaline brases would make things worse.

Call Dr. T. I just had a phone consult with him and his is very thorough!!!!