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Christie, I am so happy for you and to hear that your son is doing well. Thanks again for talking to me and giving me some helpful info before heading up to Chicago. Now I'm just contemplating driving or flying, with the swine flu outbreak, I have to think about which one is less likely to affect my son. For now, I think we are still flying and having him wear a mask, not sure if this will help, but it cant hurt. Keep me posted on your son progress. Linda

Hi Bmom, Im so happy to hear that your son is doing better. We did do the steroid burst, tics didn't get worse, but he was hyper. We continue to wait for the end of May for IVIG with Dr. K, I only hope and pray that we get results like so many others on this board have gotten. Linda

Thanks for asking I only noticed that the pred made him hyper, but my neighbor was over and she said she could tell a difference in the way he spoke to her, was more communicative with her. I did notice his scense of humor was there as well. Tics, only vocal are still there but not as bad this morning on the way to school. I guess all we can do is wait till end of May for IVIG. Linda

I'm keeping my fingers crossed. We got the methylprednisolone 16mg tablets, and he is taking 3 a day for 5 days. These last few weeks have been really bad at school. I feel badly for him as well as the other kids and the teachers. They will not send him home, but if I want to keep him home that is ok with them. They have been unbelievable (kids and teachers). My son has just the vocal tics. They seem to get worse right before bedtime and right before he falls asleep. Right now I'm just counting down the days before school is out and we get IVIG done. Linda

greeneyes, Thanks for the reply. We are doing the steroid burst right now (day 4) and what I have seen is that it the steroids have made him very hyper, but still has the tics. Someone else told me that doing the steroid burst relieved other symptoms, but the tics were still there. We are scheduled to do IVIG with Dr. K at the end of May. I hope that gives him some help. Linda

Does anyone else out there with Panda kids have just tics or mainly tics as a symptom, and how or what has helped. We are going thru a horrible time right now with the tics and I'm not sure what triggered this. He had a horrible sinus infection a few weeks ago, then we had a foriegn exchange student move in with us (long story...) he was sick, and I think my son may be reacting to all of this. He was put on 500 mg x 2 daily for the sinus infection and was previously on zith, and still didn't help with the tics, the zith seems to help with the ocd issues. Also, while the foreign exchange student had (has) a cold, my son developed cold sores on the corners of his mouth, dr. gave him the zoviraz ointment for that, could this be triggering the tics? Linda

Irelandsmom, I was told by a doctor in Oklahoma that these kids need to see a infectious disease doctor or a rheumatologist. Also, Dr. Lekman at Yale, if you have your doctors call him, he will explain what is going on with these kids. Someone on this board actually got a neurologist who was open minded and willing to listen, I think they were in North Carolina. Dr. Tanya Murhpy is in Gainesville, Florida and Dr. Latimer in DC (Diana Pohlman mentioned this). Dr. Elia in Philadelphia and of course Dr. K in Chicago. Linda

T.Mom, Our dentist mentioned possible celiac with our son after he took x-rays of his teeth. He said a certain kind of indentations on teeth that he could see on x-rays were possible indications of celiac. We did have our son tested for celiac and the pediatrician said it was negative. However, I had also taken him previously to see a DAN (they run different tests) and he said he tested positive to celiac, so now I have made another appointment with another allergy/immunology doctor! Also, the white spots could be from using the floride drops that we were all told to use by dentist when the kids are young. Sometimes it can be too much for them, at least thats what I was told by our other dentist in Florida. Linda

Lisa, So happy to hear that your child is getting the help he needs and from a neurologist! He sounds like a doctor willing to listen and thoroughly investigate all symptoms. Do you happen to know the name of the lab in Florida that they were sending blood work to? Keep us posted on your childs progress with this doctor, it sounds very promising. Linda

Jena, So sorry to hear that your having a difficult time again, and was curious to know if Dr. K in Chicago had done the IVIG? If not was it done at a high dosage as Dr. K does or was it at a lower dose? Linda

Lacy, Sorry to hear that your child is having such a hard time now. I'm wondering why she is on the lamictal since this is for bi-polar? Was this given by a neurologist? I've been told that the best type of doctor to use for Pandas would be a infectious disease or rheumatology doctor by a microbiology/immunology doctor. IMO most of these Panda children do not do well on these psych-drugs, and perhaps this is causing a issue with your child. Linda

Kim I believe it is the same as IVIG that everyone here talks about. LS

Hi MyRose, I'm just wondering how you got the neurologist to prescribe your child topomax? Was the diagnoses for your daughter a tic disorder or tourettes or what? We think our son is Pandas, but his biggest symptom has always been the tics. I'm so glad to hear she is doing so well. All my best and continued success with the topomax. Linda

Pat, Sooooooooooo Happy to hear that Gaby is doing so well. We have scheduled IVIG for the end of May for our son. I just love hearing that IVIG has worked. Continued success with Gaby! Linda

Tracey, Can you tell me what supplements you had your son on that helped him with the tics? Linda

Amy, I was wondering what how old your dd is and what the weight is? My doctor gave us the methylprednisolone at 16mg/3 tablets daily for 5 days. We have not done it yet, but after reading your post, I'm wondering if this is high. My dd is 9 almost 10 and weighs about 89/90lbs. Thanks, Linda

Hi Pat, Glad to hear that Gabby is doing better. Also thanks for the input on the amount of IVIG. We are in the process of setting the date for our son to have it done at the end of May. I pray that Gabby has continued success. Linda

Indigo, What store did you get this at? I'm willing to try it. What mg's are you giving your dd. Ls

Gibster, Your child's symptoms sound very much like my sons. If you cut and past this link below it will take you to this very interesting journal publication. Btw, my sons tics start up if he is around anyone who has a viral infection, it doesn't have to be strep. Linda Challenges in the Identification and Treatment of PANDAS: A Case Series -- Mabrouk and Eapen, 10.1093/tropej/fmn039 -- Journa.

Katie, Can you tell me the effects this has had on your child and is this for Tourettes or Tics? Linda

http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218 This study was conducted using 250 mg of antibiotics 2 x a day.

Michele, You have to get very lucky to find a doctor who will follow Dr. K's advise. I found a peds doctor here in Texas who admitted not knowing anything about Pandas, but was open to learning about it. She ACTUALLY called Dr. K, and he told her what test to run, and about the antibiotics. I also got lucky to find a psych doctor who knew about Pandas and was willing to try other drugs beside anti-psych drugs first. Didn't work for us, but we tried clonidine and Tenex for the tics. Linda

EAMOM, How much more than 250 mg of zithromax do you think a child should be taking. My son is 9 years old and weight is 90, should it be more than 250 mg? Also, we have been giving him Motrin at night, seems to help him sleep. Any advice on how often is too often. We just can't stop the tics, and one of his teachers is sick, so we can't get away from that. He also had a tooth that was bothering him, I'm wondering if that could have added to the symptoms. We had a filling done today, maybe we can see some relief, don't know. Linda