Debbie1

Hi Jack, My kids have high strep titers as well and I was told they will take a LONG time to come down...I was told to expect months, not weeks. And although my kids titers have come down significantly in the past, we never got them into the normal range before they bounced back up again from another strep exposure. We recently started seeing an immunologist to address this issue, among other things. A neurologist told us we probably won't be able to get the titers all the way down until we do t&a surgery (scheduled for later this month). Antibiotics will help treat an existing infection and prevent future infection, but they will not make the titers come down faster once those antibodies are there. Did you child's titers come down into the normal range after IVIG? My understanding is that steroids help the titers come down faster - have you tried a burst yet?

Benadryl always makes my PANDAS son hyper - he is bouncing off the walls, impulsive and whatever PANDAS symptoms he has at the time seem to intensify shortly after taking a dose.

I met with Dr. B. last week - he does not think keratosis pilaris is an immune system issue. He said the heart racing could be related to PANDAS, although I am the first parent to report it to him.

My daughter had a 1 week (plus a few days of taper) high dose steroid burst in December 2008 that put her PANDAS symptoms into remission for six months. She was on a prophylactic dose of amox during and after the steroid burst. She was going great (100%) until multiple strep exposures over the summer. Doctors are not sure whether the immunospressive effect of the steroid wore off at the six month mark, or whether the amox stopped doing its job at that point.

Hi CP - Glad you are through with the t&a. It must be a relief to have it over with. Do you have any words of advice for us (we are going through it with all 3 kids later this month)? Just a thought - is it possible that something in the pain medication he was taking controlled the tics as well? Debbie

Thanks for the warning about the ER. Luckily we have a friend who is a pediatric cardiologist who said the next time it happens we should just call him and he will check her out right away. We did have the Cunningham tests done. CamK was 137.

PANDAS Denmark - that was a fascinating article! Thanks for posting.

Wow peglem! It must feel great to finally have a team of doctors on your side!

Hi bronxmom, That's great news! Please continue to keep us posted! Debbie

Hi Eileen, I'm sorry to hear Julia has had a bumpy road since PEX. I'm glad to hear though that she is responding to steroids. There is one part of this that I don't understand (and I am admittedly not a science person, let alone neurology, immunology, hematology etc.): If PEX removes all of the bad antibodies that are causing PANDAS, and she just had PEX, then what is causing the PANDAS symptoms? In other words, even if the BBB is compromised from the flu, shouldn't there be no bad antibodies left to cross the BBB and cause symptoms? I hope to see another post from you soon that she is back to 100%. All the best- Debbie

Did they ever figure out the cause of the heart racing? Was she still having the heart racing when she started steroids?

Thanks for the replies. It is so interesting to see all of the common threads between our kids. Over the years, we have had so many different specialists look at so many different symptoms and they were all missing the bigger picture. When I meet with Dr. B. later this week, I am going to ask him whether keratosis pilaris is an immune system issue.

Eileen, She is not currently on steroids. She finished the 1 month of steroids at the end of October and has not been on any since. Yes, my daughter's bumps are skin colored and not noticeable from a small distance away, but are noticeable up close. I have not paid close enough attention to determine whether they correlate with her PANDAS symptoms...but I will now. Debbie

We have had many odd symptoms over the years that were eventually explained as part of PANDAS so I thought I would post our most recent one to see if there is any connection. On Saturday night my daughter was trying to fall asleep when her heart started racing. She was uncomfortable and could not fall asleep so we paged the doctor before deciding whether or not to take her to the emergency room. Her pulse was faster than normal, but not dangerously high so the doctor said we did not have to the hospital yet - just keep an eye on her to make sure it returns to normal. The next day her pulse was fast the entire day. We went to the doctor and her blood pressure was normal. By yesterday evening, her pulse was back to normal. Has anyone experienced this? One more unusual question - is keritosis pilaris an autoimmune condition? I googled it, but can't seem to find the answer. dd has the bumps on her cheeks that someone recently mentioned. The dermatologist we took her to a few months ago said it was keritosis pilaris and gave her skin creams to use. Everyone has told us it is an inherited skin condition, but no one else in the family has it. If it is a symptom of autoimmune issues, then I could understand why she has it.

Ho coco, My daughter had her first symptoms at age 7 and was diagnosed with a tic disorder at age 8. No one ever mentioned PANDAS. She is now 12 and was diagnosed as "probable PANDAS" just one year ago. She had a steroid burst at the time which put her symptoms into complete remission for 6 months. She did have a relapse over the summer following multiple strep exposures and is still recovering. When she is having a rough few days (which are always difficult for me to watch), I try to remember all of those symptom free months and am hopeful that we will get her back to that point. I am also more confident than ever that we have found the right people to help her. We now see Dr. L. and everytime I leave her office I feel hopeful. I have an appointment with Dr. B later this week and hope he will shed some light on correcting the faulty immune response and stregthening her immune system. We have not yet done IVIG or PEX (I would like to, but have been told to date that she is too mild). Try to draw strength from the fact that you are being as aggressive as you can and are doing everything possible. Brain healing takes time. Someone on this forum (was it Vickie?) recently said that when their child was going through a hard time they would tell themselves each evening that tomorrow is a new day - maybe it will be better. I have told myself this on many evenings in the last several weeks and it does help me get through (thanks to the one who posted that!). Hang in there, keep up the hope that this will get better and keep posting how she (and you!) are doing. Debbie

Hi Isabel, Dr. L. told us not to expect improvement until sometime in week 2. Some kids have a delayed response to the steroid though, and improvement might take longer. That being said, on our most recent round of steroids (round 2), we started seeing improvement around day 6 (so hang in there!) We did experience a backslide each time two days after we dropped the dose. The backslide would last 2-3 days then she would stabilize and improve again. It was frustrating to see this happen each week, but by the time we finished the month of steroids, she was significantly improved. Most importantly, do whatever you need to do to clear the strep from your house, even if it means keeping the kids on antibiotics for an extended period of time until you know its clear. Dr. L. put all three of my kids on augmentin because she believed we were circulating a strep infection and wanted the whole house treated at the same time. Hang in there....I know the waiting is rough... Debbie

I don't know if you have gotten in touch with Dr. L. yet, but if you haven't, you can also try sending her a very short email with your prescription request in the subject line. If you don't hear back, follow up with another phone call to Andrea.

We have also not yet done PEX yet but wanted to wish you the best for tomorrow. Please let us know how it goes.

Thanks Buster.

Cam kinase was 137 (I received that result several weeks ago)

I just received titer results from Dr. Cunningham's lab. Can anyone help me understand what they mean? Thanks, Debbie Results: Anti-Lysoganglioside 2 hours patient 320 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 1000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 4000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 8000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000

I believe there are a few cases on this forum of kids whose PANDAS symptoms developed in response to non-group A strep. Someone please correct me if I am wrong, but I think that studies were only looking at GABHS (just as they were only looking at a certain age group). That does not mean you cannot have a PANDAS reaction to non-group A strep - just that it hasn't been studied.

Too bad we live on opposite sides of the country. We could have had a strep-free Thanksgiving together!

You have been through so much. I'm glad to hear you at least have a pediatrician on your side and that you have decided to go see Dr. Latimer.

peglem, Thanks for the reply. How did your find out that your dd still has carrier problems? Is she still culturing positive? Debbie