Debbie1

They have no idea what's at stake for my daughter - we have not discussed anything with them - so unfortunately, I look like the bad guy right now. I think we are going to have to explain what's been going on. I am thankful the one cousin was positive today, but I think her brother is still coming as well as other cousins so I am not sure we are in the clear. Thanks for the support!

Ok - my worries have been confirmed. Same cousin who started his whole exacerbation has strep again. She was supposed to come to our house tomorrow. I told her not to come. I want her brother cultured before he comes, but apparantly that is asking too much. He has already had his tonsils out (he was a strep carrier) and I am told he never gets strep now. Too bad I'm still skeptical.

Judy, That is such a terrible experience! I really feel for you right now. You will get your child better - you have to believe that you will - and when you do, you should write to that doctor and prove him wrong. You never know how many kids it will help in the future. Hang in there...it can be rough. Debbie

Elizabeth, I was wondering what the hematologist is able to do for you? The night before last, I was flipping channels and on NJN, there was a program on blood disorders. The hematology team at Cornell/Weill (NYC) was featured and they were discussing how they love their field because they solve medical mysteries and help people recover. They mentioned autoimmune disorders including Lupus and showed someone getting PEX treatment for it. My reaction was - maybe I should contact them about my PANDAS children, but wasn't even sure what to ask. Any guidance? Thanks, Debbie

Hi all, Just wanted to keep everyone posted on our progress. It's been a little over a month since dd12 finished a steroid burst and was put on augmentin. It was a rough month. She has had her share of bad days and days that seemed to be a bit better. dh and I both had strep, and dh had the flu. When things were getting better, her close friend had strep - and dd had three terrible days. I am hopeful that we we may have turned the corner now. Since Sunday, she has been so much better. Her tics are still there, but greatly reduced. She has not looked this good since July. I do not know how she will be tomorrow, but I am really enjoying today. If someone offered me IVIG tomorrow and told me my insurance would cover it, I would do it in a heartbeat even though she is doing much better. I am terrified that it is going to come back (I just might be posting again tomorrow!) and concerned about the strength of her immune system. To date, I have been told she is too mild for IVIG/PEX, but it just keeps coming back. I have an appointment with Dr. B. next week (a consult without the kids) and all three kids are scheduled for t&a surgery at the end of December. I am so worried about tomorrow when her cousins are coming for Thanksgiving. It was exposure to one of these cousins at a sleepover that started this latest exacerbation. They asked if dd could come home with them tomorrow to sleepover. I politely told them no (but was thinking NO WAY!!!). I just can't go thru that worry again right now. She seems to always get sick at sleepovers. I am banning them at least until after surgery (if not forever!) These cousins have had a ton of strep - I told my dh I want throat cultures at the door before anyone walks in our house (just joking but sort of not!) I better get a new can of Lysol before tomorrow... Happy Thankgiving! Debbie

Our CamK results took about three weeks. We have not yet received the titer results and we did the test at the end of Sept.

Hi Faith, Did Dr. T. tell you what dose he would recommend for a 5 day course? My dd has had two rounds of steroids: 1) December 2008 - prescribed by a local neurologist - 7 day course - 60mg per day for 5-7 days (I can't remember now), then a quick taper. 2) October 2009 - prescribed by Dr. L. - 28 day course - 30mg week 1, 20mg wk 2, 10 mg week 3, 10 every other day wk 4. In reality, the two were not very different. You end up with approximately the same amount of steroids in your system. Dr. L. said kids usually don't tolerate the higher dose well so she prescribes a lower dose over a longer period. Debbie

Hi Isabel, I have two kids with PANDAS. ds8 was my more severe child and has been treated with antibiotics only. He had crazy high titers (antiDNASE was 2700) when diagnosed 1 year ago and responded well to amoxicillin. It took some time for the symptoms to disappear (I don't remember how long), but we saw steady improvement. He was symptom free for 8 months until exposed to strep in August 2009. At that point we saw an increase in OCD, although no where near previous exacerbations. He is mild even with this exacerbation - we see the OCD, but most others wouldn't notice. He is happy and doing well in school (after two very difficult years), social, plays basketball, baseball. Dr. L. switched him to augmentin about 1 month ago. We have not yet seen significant change in the OCD. dd12 has tics only. She also had high titers (but not as high as ds). She has had a much harder time fighting this, I think because she is older and went undiagnosed for so much longer. She has had two steroid bursts. The first was in December 2008 and the second was October 2009. She is now on a treatment dose of augmentin. I have been told by some doctors that the steroid is just a patch, a temporary solution and will not solve the problem long term. Think of it similar to an allergy - the steroid will halt the current immune response, but if you are exposed to the allergen again, your body will react again. I have also been told that the titers will come down - steroid or not - they just take time. The steroid speeds up the time frame by helping the titers come down faster. I did ask an endocrinologist about the affect of the steroid on growth. He said dd would probably grow a little slower while on them, but once off, growth rate should return to normal. In the grand scheme of things, he did not think that 1 month on steroids would make much of a difference. I would encourage you to discuss your son's case with an endocrinologist if you are concerned about any affect on growth. If you are not sure you are ready to try the steroid, then wait. It will still be an option if you decide to use it at a later date. Debbie

Thanks for all the responses. I guess our next stop is the rheumatologist (now if I can just find a good one that takes insurance...)

So glad to hear of all the positive experiences with him. We have an appointment in two weeks.

Hi Eileen - I have to run, but quickly: My ped said it was safe to do a steroid burst every 6 months (and that was for a high dose burst). I would assume it is probably dependent on the dose and duration of the steroid. I hope she feels better soon. Debbie

My non-PANDAS ds has recently been experiencing joint pain. The pain moves - it is not necesaarily the same joint each time, but it is always on a joint. My ped is concerned that this may be PANDAS related - ds does have high strep titers and he said this is sometimes seen in rheumatic fever. Has anyone had this with their PANDAS kids?

Hi peglem, It's terrible that getting treatment has to be this rough. Dr. Latimer is worth the trip (although we have not done PEX yet). Maybe she would be willing to work out a payment plan with you if you needed (given that you will also have travel expenses). I know of docs in the NYC area who do not take insurance that are willing to work out payment plans. It might be worth it for you to inquire. We are thinking of you. Debbie

Hi CSP, We will be having the t&a surgery done on all three of our children in a few weeks. Two have a PANDAS dx. All three have had extremely high titers that we have not been able to get in the normal range. I spoke to two neurologists, the ENT and my pediatrician about the surgery. They all felt the risks of the surgery were so minor in comparison to the potential benefits. They all recommend doing it. My kids are currently on abx and will continue until the surgery (scheduled for the end of December). They will be getting IV antibiotics right before surgery and then will be on 10 days of abx following. Good luck and keep us posted! Debbie

Hi Shaesmom, So glad to hear your dd is doing so well!! Looking forward to hearing of her continued success! On a separate note - I have a friend whose child has been diagnosed with EGID (I think). She has had doctors recommend the formula diet for her son - he is allergic to so many foods. She has to take her son every three months for endocopies for eosinophil counts. She has been to many doctors including the experts at CHOP, gastroenterologists in NYC, and some local docs. If you have any helpful information that I can pass along to her, I'm sure it would be appreciated. Thanks, Debbie

Judy, So sad for you that things have to be so hard right now. Please let us know how the appointment goes. Good luck with Dr. K tomorrow. Debbie

That is very discouraging for us as we are about to schedule t&a surgery and were hopeful that would help in getting rid of the infection.

Hi nojo, So sorry you are going through all of this. If you cultured positive while on prophylaxis, it does seem that the prophylaxis wasn't effective. Whether you need to up the dose or change, I am not sure, although I'm sure others here can probably give you advice on that. Do your children still have their tonsils? If yes, has anyone suggested you consider t&a surgery? We are having trouble getting rid of the strep in our house and two doctors have now told us to get the surgery done. I know you can get strep in other places, and you can have exacerbations following surgery, but we were recently told that the antibiotics they are on (full strength augmentin) just won't be effective enough if they have strep hiding out in their tonsils. If they are prone to positive throat cultures and your antibiotics don't seem to be working, you might want to consider it. Debbie

Thanks for all the support and advice. I had a good cry, read all the supportive posts and am doing better this afternoon. I did decide to email Dr. Latimer. I am ok if she tells me to stick it out a bit, I just want to know that we have a plan if we don't see improvement.

Faith, Thanks for making me laugh when I am having a bad day. Debbie

My dd12 finished a 1 month course of steroids two weeks ago prescribed by Dr. Latimer. 2 days after finishing the steroid, she was switched to full strength augmentin. As of last week, she had improved significantly since we started the steroid, although she was not as good as we would like her to be. I almost posted at the end of last week to say how much better she was doing, but decided I better hold off and see if the improvement sticks. This Monday, she started going downhill. The tics are more frequent, more severe and have started to bother her again (when they are more mild, she does not really notice them). I want to call or email Dr. Latimer, but my dh thinks I should give it more time. We just emailed her a few days ago with questions regarding t&a surgery. She responded quickly, but we are hesitant to email again too soon. I am emotionally exhausted from dealing with this. I want to just crawl under my covers and cry. I just need some words of encouragement right now. Thanks, Debbie

Hi LovingMJ, Welcome to the forum. I'm sorry you find yourself here. I would definitely take him back to the pediatrician and get a throat culture (rapid and 72 hour). If he is positive, he can get antibiotics and it sounds like he has had a good response when on them before. If the culture is negative, get a blood test (ask for ASO and AntiDNAse B titers to be run). If elevated, they would indicate a recent strep infection. Keep in mind though that not everyone here has elevated titers. If they are normal, it does not necessaily rule out PANDAS. My son had the urinary frequency with a few episodes. It is a symptom that many PANDAS children have at some point in time. We also went to urologists, eye doctors etc. with no one ever putting together a complete picture of my child who in hindsight was a clear cut PANDAS case. In our case, it was extremely elevated strep titers that got the attention of our doctors who then began to consider the possibility that he may have PANDAS. I think any parent with a child with tics and/or OCD should explore a PANDAS diagnosis, if nothing other than to rule it out before considering other diagnoses and treatments. This is a great forum and you will learn a lot by reading the posts here. It is solely because of this forum that we got a correct diagnosis and treatment. (Thanks everyone! ) Debbie

Claire, Its so great to hear your son continues to do well despite his brief set back. We are so happy for you! Please continue to keep us posted on how he is doing and how your post-PEX plan evolves. Debbie

Yeah!!! We are cheering for you over here! Looking forward to hearing about her continued success! Please continue to post updates and let us know what you decide for her post-PEX treatment plan.

My husband was positive for non group A strep on a culture. I was positive today on a swab but don't know yet which type of strep. The doctor is culturing to find out. At least now we are all being treated at the same time!