Debbie1

Her tonsils have been ok since finishing steroids and starting on prophylaxis in December. From December to June she was entirely symptom free. We thought she was over this. Our problem since June has been that when she is exposed to strep, her titers rise and her tics severely flare. She has not tested positive to a throat culture since being on prophylaxis. This has really confused our doctors. They do not understand how should could be reacting to strep without testing positive on throat cultures recently (although she has had several episodes of positive cultures before prophyaxis). Does anyone else also see this with their child? My daughter has begun to show some improvement on the Duricef which she started Thursday night. Still tics, but less severe. We are switching to Duricef for prophylaxis after she finishes the full 10 day course. I'm a little afraid she might develop resistance to that one as well. That is what our doctor thinks happened with the amox. Just made an appointment with Dr. Latimer for the end of next week.

The doctor called yesterday with our lab results. I still need to pick up a copy of the results at the office so I do not have the exact numbers in front of me, but here are the results from our phone conversation: We ran CBC, pneumoccocal titers, IGG, IGG A, IGG M and IGG subclasses, Diptheria and tetanus titers, HIB and complement. Everything was normal with the exception of 4 out of 12 pneumoccocal titers which were low. (He said the 8 main ones were normal). However, she never received the pneumoccocal vaccine, so unless she contracted the virus, he said she would not have the antibodies. So he felt even the low numbers were normal in her case. I am not sure where this leaves us in terms of IVIG and insurance coverage. The doctor also repeated her strep titers due to her recent (and ongoing) exacerbation following exposure to strep. ASO has remained pretty flat at 371. AntiDNAse is back up to 960. It was 680 at the beginning of August and 340 at the end of June. The doctor started her on a 10 day course of Duricef. If it doesn't work, our current neurologist will put her on a course of prednisone. We made the decision to go see Dr. Latimer. I contacted her office last week and the wait is not too long. I have to call back on Monday to go ahead and schedule. I really hope she can help us. Everything we have done so far seems to temporarily fix things, but it keeps coming back... It has been very inspiring to read so many success stories here lately. It's what keeps me going. Thanks.

Thank you everyone for the quick response. I will contact her office. Has anyone here done phone consults before going to see her? Were they productive or is the office visit really necessary? Do you know which hospital she is affiliated with? Thanks, Debbie

Thank you so much.

Can someone tell me the phone number for Dr. Latimer? Does she do phone consults? Does she take insurance? We are in the midst of an exacerbation following a rough summer. I have been waiting...and waiting ...and waiting for our doctor to call me back this time around. So frustrating. I just want to cry. Thanks, Debbie

We use Florastor Kids. I get it at my local small drug store, but I have also seen it in CVS. We use 1 packet 2x per day (mixed in apple sauce).

Wendy, Our PANDAS dd had influenza A in May along with most of her classmates. Her PANDAS symptoms did not flare at all from it. I hope everyone is feeling better today. Debbie

Shaesmom, I'm not clear on this - Did 100 kids go though the immuno. bloodwork and 15 failed? Or out of 100 PANDAS kids that you are tracking, you know of 15 that have taken the test and failed? I took my dd for the testing last Friday. Still waiting for results. Debbie

Child 1: Tics only (although she twirls her hair a lot - is that OCD?) Child 2: OCD and tics

I took my PANDAS dd to our ped at the end of last week for a throat culture. She has had a neck tic/movement since being exposed to strep at a sleepover. She cultured negative, as she has consistently since being on prophylactic amox. She still has the neck tic a week later. I have a script to take her for titers which I will get done, but the neuro warns that a rise at this point might be hard to interpret. She had a rough summer with a sinus infection that seemed to clear and then resurface and her tics would rise and fall with it as well. She was just tested on 8/3 and results came back with antiDNASE of 680. She was 340 at the end of June. Neuro thinks she may be developing resistance to the amox. since she broke through now 3 times this summer. She recommends taking a break from antibiotics for a little while to see how she does. Of course I am scared to do that. If I am against the idea, she is ok with switching the antibiotic. She has been on so much medicine recently to treat the sinus infection, that I am also fearful of over medicating. Anyway, along with the script for ASO and antiDNASE B titers, the ped prescribed the immunological blood work that was recommended (thanks, Shaesmom)! I asked him why he decided to order it for me after telling me a few days before that he didn't want to run it. He said he changed his mind based on what I said on the phone. He also knew I would always wonder if this were a piece of the puzzle if we didn't do it. When I spoke to the neurologist late last week, she was in favor of doing the immunological labs as well. She thought it would be interesting to see the results and was going to think about what tests should be ordered. I told her - I have a list! I emailed it to her and she is reviewing it. I am waiting to hear back from her to see if there are any other labs she would order at the same time. I'll keep you posted on results... Debbie

Is a family more likely to have a child with autism if siblings have PANDAS? I saw a few sites this morning that classify PANDAS as an autism spectrum disorder. I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder. Can anyone clarify? Thanks.

I am so glad to hear things are going well for you!

Colleen - I had asked my pediatrician to run the immunological blood work. I agree with everyone here that the doctor was wrong on this one. And that the younger doctor was unprofessional when we saw her. I do not know where she got her statistics. I am just reporting what she told me. In all fairness to my pediatrician (the senior one that I usually see), he has really been great and overall very open minded through our whole PANDAS ordeal. He has helped us tremendously. This time I think he made a mistake. I can push him more on it and I may get him to test, but I would prefer to try to get our neurologist to agree first and try to avoid the confrontation.

Thank you everyone for the information. Shaesmom - My kids have been sick over the years with sinus infections, upper respiratory infections, and lots of strep, but no more than all of the other kids around here. My one child that had recurrent ear infections does not have PANDAS. I brought up testing with my ped today. He was against it saying if I am not prepared to do IVIG right now for PANDAS, then why test? He told me that in medical school he was taught to only test for things if you know what you are going to do with the info. I disagree - I believe that in cases like PANDAS, where so little is known, the more info you get about what is going on inside your child the better. He told me I should run it by the neurologist to see if she thinks testing is worthwhile. Colleen - we were started on amox (as opposed to azith) because we were told it is effective against strep (although we know from here that it is not always), it is the primary treatment used for Rheumatic fever, and the least potent leaving plenty of options if resistance results or if there is an infection that needs a stronger antibiotic. During my daughter's most recent exacerbation, the doctor I saw in my ped's office was trying to determine the best antibiotic to treat her with. I suggested azith because I know so many people use it here and Duricef (their ususual recommendation after amox) doesn't always work for us. The doctor said she will get yelled at by the more senior doctors if she prescribes azith for strep - it has a 30% failure rate and she has been yelled at for prescribing it in the past.

Hi everyone, I has been a long time since I posted so I will start with a brief update. I have two children that were diagnosed with probable PANDAS in October and December 2008. My son was put on prophylactic amoxicillin and results have been dramatic. His antiDNAse B has slowly come down from 2700 in September 2008 to 680 now (still high) and we continue to follow him closely. He has been symptom free for many months now and is doing great. My daughter was put on 7 days of prednisone and started the prophylactic amoxicillin a few weeks later. About 1 week after predisnose her symptoms (primarliy eye tics) were mostly gone. Within a few weeks she was completely symptom free. Titers have come down as well from a high of 960 in November to 340 in June 2009. She remained symptom free for several months until late June 2008 when one of her siblings had a strep infection. Within three days her eye was bothering her again. She cultured negative, but our ped put her on a 10 day course of Duricef (neuro was on vacation) and we sent her off to camp. When we saw her on visiting day, she was significantly improved (about 75%). She came home from camp and one day later symptoms started up again. Culture was negative, but antiDNAse was up to 680. ASO did not change significantly, which neuro thought was odd. Ped put her on 10 days of Omnicef. She is now about 90% better. This past weekend she was exposed to strep again when she had a sleepover. The mom called us yesterday to tell us her daughter just cultured positive. I am watching her like a hawk. She has been complaining that her neck has been bothering her since Sunday night, but I haven't seen any neck tics yet. I think she may have outgrown her amox dose and it needs to be increased. I have to call her doctors today. I am so grateful to everyone here who has helped us - as school is about to start, I can't help but remember how difficult things were for us one year ago and how far we've come. Ok - that wasn't so brief, but here's my question: I have seen lately on the board that many people have been going to see immunologists, rhuematoloists and infectious disease specialists. Has anyone gone to these specialists when their children were doing well? If yes, what are you trying to find out? Who do I go to first? What do I want to find out and what would I tell them is the reason for the apppointment? Thank you so much for all of your help. Debbie

I feel I must chime in here on the antibiotics discussion. While I understand the amoxicillin does not work for everyone, my children are doing extremely well on it. Their titers have come down significantly and they have had no recurrance of symptoms even though they have been repetitively exposed to strep. I know we have not been on prophylactics as long as others here, but someone else that I know has been on prophylactic amoxicillin for two years with no recurrance of symptoms. I don't think it should be automatically ruled out for stronger antibiotics without exploring it as an option or giving it a try.

Hi Melanie, I am sorry I missed this post. I was wondering how your appointment went with Dr. Chiriboga. So sorry it did not go as well as you hoped. The people I know of that have gone to her have a strep component to their tics. That is not to say that she is not fully qualified in other aspects of tic disorders, but I can only speak for my experience. By the time we went to her, we already knew that my son had extremely high titers and had responded positively to antibiotic treatment. You might want to try eliminating artificial ingredients and preservatives if you have not already done so. Many people find it helpful. If one doctor is not giving you the help you need, keep looking. You know your child better than anyone. Keep reading here. The people here are so supportive. We have had our share of ups and downs with this and I have found this website a tremendous source of comfort and help. Debbie

There are two numbers listed for her: 212-305-8549 / 212-305-6833. I googled her name to get these numbers - I thought it would be faster than finding my file right now. If neither are correct, let me know and I will pull my file. She is interim director of pediatric nerology at Columbia. She does not take my insurance. We pay out of pocket, but she may take other insurance, I am not quite sure. If it is an issue, you may want to see if you can see another doctor on the team. Good luck. Keep us posted. Thanks, Debbie

Michele, I think I answered your questions in my reply to Melanie. I hope you are seeing some improvement in your son. If you have further questions for me, please let me know. Thanks, Debbie

Melanie, She put my son on prophylactic amoxicillin after hearing his history of recurrent strep infections and his blood work came back with extremely elevated titers (AntiDnase B of 2700, ASO of 620). At the time he was having terrible tics and some OCD behaviors. We had seen another nuerologist for two years prior to switching to Dr. Chiriboga. He had put my son on Klonopin and Zoloft, but never checked for any link to strep. She would like to wean him off of Klonopin and Zoloft this summer if he continues to do well. We can then tell if there is any underlying disorder or whether strep is the sole trigger for him. We took him off of wheat, milk, garlic and artificial ingredients for a period of time. He is now back on wheat, milk and garlic, although I will not yet try adding back the artificial stuff. They will do steroid bursts and IVIG in extreme cases at Columbia when all other treatments have failed. She did a steriod burst succsessfully with another one of my children who was experiencing tics after exposure to strep. A round of antibiotics that had worked in the past did not work this time to alleviate her symptoms. She is now on prophylactic amoxicillin as well and is doing very well. My kids were deemed to mild at this point to consider IVIG. As for neurologists being hard to reach, I have had that problem in the past. I have to give credit to Dr. Chiriboga who not only has returned my phone calls, but called on her own to check up on my daughter during her steriod treatment. If I can be of further help, please let me know. Debbie

We live in NJ and having been using Dr. Claudia Chiroboga (pediatric neurology) at Columbia University in NYC. We have been using her since October 2008 and so far we've seen wonderful results. My pediatrician is impressed with her as well and since our initial visit to her, has sent other patients to her. If you would like further information, please let me know.

For those of you looking for a doctor in the NY/New Jersey area, we are having a very good experience with a doctor at Columbia (Morgan Stanley Children's Hospital/NY Presbeterian). If anyone would like more specific info on the doctor, please PM me.

We have now been to two doctors for PANDAS with two different approaches. What they do agree on is that (1) my child's symptoms are too mild for IVIG at this point and (2) since he showed some response to amoxicillin, we should stick with that antibiotic for now. One says put him on prophylactic amoxicillin and hopefully prevent infection. Then watch and see how he does without infections. Test for titer levels about once a month to see where they are. If he has symptom exacerbation go immediately for a throat culture and blood work. She would like to wait until the summertime to take him off the other medications because she would like him to have a stable, calm period through the school year. The other doctor says wait one month to see if his remaining (very mild) symptoms resolve on their own. If they do not or if he gets worse before that, do another full course of amoxicillin. Only then would he consider prophylaxis depending on the outcome and symptoms at the time. He seems to prefer treatment with these single rounds of antibiotics as long as they seem to be effective. Once he is stable for a few months, we can start to slowly bring down his other meds. He does not find titer levels helpful. Honestly, I just do not know which approach to go with. I just want to know that I am doing the best I can for him, with both the present and future in mind. And just to confuse things, I have the name of a doctor number three in case I decide to go for a third opinion. Any advice? Thanks, Debbie

Hello Laster99, So sorry to hear you are going through such a hard time. My son had a very similar pattern. He was diagnosed with a tic disorder a little less than two years ago and has had ups and downs. In February 2008, we made dietary changes and saw significant improvement. He was doing great. But in August 2008, his symptoms all reappeared at once and suddenly it looked like we had made no progress at all. A few people here suggested we go for a throat culture and bloodwork. Although his culture was negative, his titers were off the charts and the doctors thought it would be a good idea to try one round of antibiotics. By day 10, he was a changed child. No tics or OCD, very calm, happy and normal. Looking back at his chart, his improvement in symptoms always appeared after a dose of antibiotics. (Although the connection never seemed obvious at the time.) They are now considering him a possible PANDAS case and have recommended a completely different protocol for treatment than before. No one bothered to check for PANDAS or try a round of antibiotics before. I am certainly not suggesting your child has PANDAS, but that it might be worth your while to rule it out if you have not already checked for signs. When I called my doctor to suggest a throat culture, I told him I just want to rule this out. He thought that was reasonable. Turns out, we ruled it in. Hoping your child gets over this episode quickly.