Sue: New Jersey Mom

Anyone out there that has heard or read about the time/duration of Pandas??? This is a "pediatric" condition isn' it? How long is this know to last on the average. Until what age is this seen to recur or happen. Has anyone seen Pandas slow down or end by a certain age???

I am believing that the pollen and start of the allergy season is not helping as well.

My sons tics have changed and the last two days he has been making swallowing sounds constantly. Does this sound like a tic. He is not sure if his throat hurts or not and he is on Zithromax for pandas treatment. He was so hyper that I haven't seen him like this in years. He was waxing and waning for the past two weeks. He is on a strict strep protocol with his dan physician, but his neurologist offered tenex to help with the tics, so i gave it tonight before i could check with the dan physician. Has anyone heard about tenex interactions or these kinds of tics. I may take him into the regular pediatrician for a culture. but he just had one on Friday that was negative and he is on zithromax, so could these just be tics. I hope someone will read and respond. I want my son back!

I think you are a great friend and just stick by her, no matter what. Just sitting together and reading together will help her. I wish I had a friend like this. I happen to be the one that people expect to be strong and they lean on me. I have no one to lean on, but if I had a friend like you, I would be in heaven. You will help her get through this, by reading and researching and finding a good doctor. The child needs help and the antibiotic treatments are the beginning. Ask about support supplements and always ask what potential side effects or interactions can occur. Don't let anyone tell her, that her kid is going through some silly phase. She is the mom and moms know best and know their kids better than anyone else. Do not let her get discouraged by doctors that just want to dismiss it as all neurological. Every thing I have read shows that with the correct treatment, the children get better. Some take longer. Just read, read, read and be there for her. God bless you. I have to say that I am 49 and was born here, to Muslim parents and I am an American Muslim. Our faith does tell us that there is a cure for everything god gives, except death, and it is up to us to find it. So we all must believe that God gives us only what we can handle. You are all special parents out there in this forum and we can support each other by staying in touch through this forum. We will all get through this and share the day when we can say our children have recovered. Together! Sue

I want to say that I am here looking for information that can give me help. My son became a PANDAS sufferere summer of 2007. He had been doing so well overall, that for 1 1/2 years he was out of special ed classes and in regular kindergarten and even off the gfcf diet plus some supplements. He was eating and doing everything the rest of the family was doing. Then in April he had a severe case of Strep that was diagnosed with the quick strep culture tests. These usually are not too helpful, but his was bad. Then he started to change quite a bit and I happened to read Dr. Boch's book and found a description of a child just like him in there. I called up my DAN doctor and described the symptoms and had a strep blood test taken. He was gradually improving and was overall more healthier than he had ever been. He gained weight and the mild tics he had went away, until he had a fever and sore throat in January. Then we started treating him again with antibiotic. Now I see the tics still there and worse some days. We went from Cephalexein to Zithromax but I must be giving some of the supplements at the wrong time or something. He just can't sit still (always worse when he is on the computer and not as bad when writing or reading or doing other things) he licks his lips always and now they are sore. He echos alot and some clicking of the tongue. I have to say that I feel so lost and hopeless some days and that there is no one that understands. Certainly the dad who is always in denial and stays away from home as much as he can. Does anyone else feel like this or have problems with spouses in denial. I don't want to waste my energy convincing him of the seriousness of the problems. I also have problems with the regular pediatrician (only a few in our group practice are like this thanfully) who would rather spend time finding fault in the DAN doctors treatment and criticizes more than helping my son. Is there anyone in New Jersey. I really wish I had someone to talk to that has gone through this. I have asked about the IV treatment and our DAN doctor has said that it is not always effective. Any of you out there that had success please tell me more.

Well I buy mixes sometimes. But the best thing I do sometimes is simply go to the web and stock up with online purchases. If your child is on a GFCF diet, its almost Passover time and alot of Kosher food at Passover is available at Kosher stores this time of year that are good for my son's diet.

I have a 7 year old son that has been battling Pandas since summer 2008. He was improving and was getting better and healthier overall. Although his titers were high, they were coming down and the long term low dose antibiotic was stopped and we just kept up with the other support supplements. However after a month he started to show some old signs again and the next month he got a fever andsore throat. His symptons got worse each week. I am hoping he does better on a new antibotic this time.