Debbie1

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Bronxmom, Did your son have the pneumoccocal vaccine? My dd did not (she's 12). She failed several of the pneumoccocal titers but she passed the 8 main ones. I was told her results were normal becase she never had the vaccine. The only way to have the antibodies without the vaccine is to actually have contracted that strain of the virus. Dr. L. looked at our results and also said they were normal. Debbie

Thanks SF Mom. I am going to give this to my doctor.

Hi Bat-Sheva, Welcome to the forum. I am sorry you are going through such a hard time. There are so many helpful people here I am sure they will chime in with more information for you. My children are younger so I am not able to help you with data on late teen and adult cases, but perhaps you could do a phone consult with one of the experienced doctors in the U.S. Do not give up hope! Your child needs you! Debbie

Hi bronxmom, I don't think I can offer a good explanation of IVIG and PEX as we are not at the point yet. But I do want to wish you and your family much success with the upcoming IVIG. Hoping all goes smoothly and your child has a speedy recovery. I will be thinking of you! Please keep us posted on your progress. Debbie

Thanks SF Mom and EA Mom. (EA Mom - I was not able to launch the articles you attached, but I will keep trying)

We were at the peds office today for a check up. My son is not on Zithromax (he is on prophylactic amox), but we once again had the Zithromax discussion. My ped just doesn't understand why it works. He says its an extracellular drug. Does anyone know of any research that may provide some explanation for him? Thanks, Debbie

Hi Faith, We did see Dr. L. in person at which time she prescribed the steroid. Prior to seeing her, my dd had been on prophylactic amox for 9 months and had a prior steroid burst in December 2008 prescribed by a local neurologist. The December 2008 steroid burst was very successful - she was completely symptom free for six months. This time around, we are having a harder time with the steroid. By day 7 we had seen noticeable improvement. On day 8 we reduced the dose as directed. Days 8 and 9 were the same as day 7. By day 10 she was having a setback. Just yesterday (day 14), she seemed to be showing improvement again, but today we had to reduce the dose again. I hope we don't have another setback with the dose reduction, but I am bracing for one. I have a call in to Dr. L., but have not heard back yet. We got our ped to prescribe the initial antibiotics. We started with a treatment dose and saw results by the end of the 10 day course. Debbie

When we first tested, they seemed to rise and fall together. Lately, we have been getting a rise in antiDNase without a rise in ASO.

Wendy, We have not yet seen Dr. K., but I know he is an option if we feel we need it. Right now we are on a 1 month course of steroid from Dr. L. and waiting to see how it works. I called her office last Friday after we had a setback last week. Have not yet heard from her. I also have not yet discussed the Cam Kinase results with her to see how she wants to proceed. Thanks for the words of encouragement! Debbie

SF Mom, I agree on treating this aggressively, especialy since we have suffered with this for several years now. I just have to get the doctor to agree! Debbie

The last time she was on steroids was December 2008. She was in (and still is in) an exacerbation when the test was done. Her exacerbations consist of neck and eye tics (and non stop playing with her hair, but we are not sure if this is normal for a 12 year old girl). She does not get OCD with this or behavioral changes.

We just got results from the lab. Our dd's Cam Kinase was 137 - the lower quadrant of the PANDAS positive group. Can anyone explain what this means? Thanks, Debbie

Eileen & Bronxmom: Wow, that is great news from both of you! I hope the procedures go smoothly and successfully. Please keep us posted. I left a message for Dr. Latimer this morning and am waiting for a call back. Thank you to everyone who has expressed concern for my daughter. I am so grateful for this forum. Debbie

Hi SF Mom, I am so glad to hear your son is doing so well! When you say "his PANDAS score was 124" do you mean on the Cunningham test? We are still waiting for results on that (we did it before starting steroids). You probably posted this information previously, so please forgive me, but did you use Dr. K or another doctor? Were you able to get IVIG covered by insurance for a mild case? My daughter is somewhat better today. Definitely not as bad as last night so I am hoping we are back on the rebound. Debbie

Thank you for all of your quick replies. It is comforting to know that my daughter is not the only one who has had a setback in week 2. There is still hope that this will work for her. I'll keep you posted on Dr. Latimer's response. Eileen - My pediatrician told me that several PANDAS parents have reported that their kids react when around strep without ever contracting the infection. He does not understand how this happens. In my daughter's case at least, she has rising antiDNAse titers with these episodes, so something is definitely going on with her immune system. I am hoping the ENT can shed some light on how to control these strep reactions. At the moment, we are considered to mild for IVIG/PEX.

My daughter was on phrophylactic amox (700 mg per day) when she had the sleepover with her cousin back in August. My daughter came home on a Sunday night. That night, her cousin started feeling sick and two days later the cousin tested positive for strep. The Sunday night that my daughter came home, she started complaining that her neck was bothering her, but had no visible neck tics. Two days after we found out that the cousin had strep, the neck tic started. I took my daughter for a throat culture and bloodwork at the time. Throat culture came back negative (but she was on prophylaxis), but titers were elevated. Here's where the story gets tricky. She had two other exacerbations earlier in the summer. The first was at the end of June when her brother had strep. The second time was one day after she came home from camp in July (we don't know where the exposure was at that time, but her antiDNAse titers were on the rise; ASO didn't change). Both times she was put on 10 day courses of antibiotics. In June we used Duricef, In July we used Omnicef. Both times, we saw significant improvement from the antibiotics (75%-90% better), although symptoms were not totally gone before she had another exacerbation. Because her antiDNAse titers were already on the rise, our local neurologist said it was too soon for repeat titers to be relevant. After the August episode, we had titers drawn again, despite what the doctor said, because she needed other bloodwork done anyway. AntiDNASe was up even more, but our doctor at the time said they are irrelevant because they were repeated too soon, and since she is not culturing positive (even though she was on prophlaxis), she doesn't have an active infection. She went on another 10 day round of antibiotics (Duricef again), but this time we saw no improvement. Her prophylaxis was changed to Duricef. She was bad the whole month of September and we went to see Dr. Latimer two weeks ago. Dr. Latimer prescribed a month of steroid and reduced her prophylactic to 500 mg of amoxicillin per day. She did not want her on something stronger. That is what she has been on for the last two weeks. We have an appointment scheduled in November with an ENT practice that has seen many PANDAS patients. I will call Dr. Latimer tomorrow. I just don't understand what is going on.

We are now 10 days into a steroid burst which Dr. Latimer prescribed for my daughter. My daughter has had neck and eye tics since late August, when she had a sleepover with a cousin. The cousin ended up having strep. By day 7 of the steroid, we saw dramatic improvement. She still had tics, but the severity and frequency were greatly reduced. On day 8, we went down from 3 pills to 2, according to the directions. days 8 and 9 were stable - no improvement from day 7, but no worse either. Then, this afternoon, the tics are worse again. My husband noticed right away when he came home from work. Why would this be happening? She had a clear improvement in that first week. Do I call Dr. Latimer? Do I wait it out? She had a steroid burst once before in December 2008 given by our local neurologist. She was given a high dose for 7 days, then a quick taper. The dose was double what Dr. Latimer prescribes, but for a shorter time frame. After the December burst, she was tic free for six months. Dr. Latimer said it should not matter which way the steroid is administered, we should get the same result. Can anyone give me some advice? Thanks, Debbie

I can not tell you how happy I am to hear this. My kids have been on prophylaxis for almost a year. They have not cultured positive for strep once while on prophylaxis despite a recent increase in PANDAS symptoms and rising titers. The doctors continue to tell me that there is no active infection if the culture is not positive. Very frustrating.

My two PANDAS children have had extremely high titers with their exacerbations. Their titers have come down when symptoms improve, but are still higher than the normal range.

Stephanie, I am so sorry you are going through such a hard time right now. I think we all know how you are feeling. I have two children with PANDAS that went misdiagnosed for a few years. One year ago, solely do to the wonderful people on this forum, we went for throat cultures and bloodwork and found out that they really have PANDAS. In the past year they have had an unbelievable transformation. We had six symptom free months with one child, close to eight with the other. We recently had a relapse after known exposure to strep, but it is no where near as bad as it was and we will never let it get that bad again. Rest assured, you are in the right place. You have the best support group you could have right here. You know what is wrong with your child, and now that you know, you can begin the road to recovery. This illness can be draining. I have been told many times to make sure to take care of myself as I care for my sick children. It is hard to find time for yourself when caring for an ill child, but it is so important. If another family member can help and give you a break for a little while, take advantage of it. Listen to some inspirational music (I am partial to the music from Les Miserables - I always loved that show!), find inspirational books. They will give you the strength to keep fighting for your child. Debbie

Sam, My son complained of blurry vision in Kindergarten during his first PANDAS episode. I brought him to the eye doctor who told me his vision was perfect. We didn't know it was PANDAS at the time and were totally baffled. I forgot about this symptom until recently when I was going through his history. Debbie

Hi Lena, Welcome to the forum. I have two children who have been on prophylactic amoxicillin for PANDAS for the last 10-11 months. For one child it seems to be working well. For the other, it seemed to be working until late June, when she started having symptoms again as well as rising titers. I thought she might be outgrowing the dose (she had a growth spurt), but her neuro. thinks she may have developed resistance to the amox. We will be switching her antibiotic to Duricef, unless Dr. Latimer recommends otherwise when we see her. My ped. is resistant to putting her on Azithromycin because it is broad spectrum, but so many people say it works. I appreciate his concern - I do not want her to develop a resistance to a broad spectrum antibiotic, but we also need to get her better. We have to see what Dr. Latimer will recommend. Debbie

Dear marknla, I was crying when I read your story. After a few years of ups and downs and then a rough summer, I totally broke down last night. All I could think about was how long will my daughter have to go through this, will it ever get better, will it be difficult to get a job, will she ever get married. I know that I shouldn't think like this, but time has certainly taken its toll. I woke up this morning and read your email and it was the inspiration I needed. THANK YOU SO MUCH FOR POSTING! I am so glad to hear that you daughter is doing well and I hope you will keep us posted on her continued success. I know it gives me so much hope and I'm sure it does wonders for others as well. I am pretty sure my pediatrician mentioned to me that one of his patients was part of the NIH study and received IVIG there. I am going to drop off a copy of your post at my ped's office and ask him to give it to the patient's family. I hope they contact you. Best wishes for continued success!! Debbie

dcmom, Your daughter still reacts with PANDAS symptoms when around strep even after you did PEX? Did she ever culture positive or have elevated titers during these exacerbations?