Debbie1

Which PANDAS docs will be speaking at the conference?

I also did not need pre-approval/pre-certification from UHC, but we also used an in network doctor.

I am so glad to hear your girls are doing well...hoping to hear of their continued success!!

Yes, I am refering to the strep pneumo titers, although I think our lab reported only 14 serotypes. We are working with Dr. B. and are so grateful for all he has done for us. My dd is 13 and has had PANDAS for about 6 years, although not diagnosed as probable PANDAS until 1 1/2 years ago. Her symptoms were primarily tics which have come and gone in severity over the years. Pre-IVIG she was eye rolling, nose scrunching, mouth streching, and had shoulder, neck and torso tics. The tics were almost constant. The only OCD symptom was compulsive hair playing, which several doctors wrote off as just being a girl (although it was definitely excessive). 6 weeks post IVIG, the tics are at least 60% better. Today was a great day for her, so maybe I would say even a little better. She is still nose scrunching, and every now and then we see a mouth strech or an eye roll, but the frequency is down tremendously. Everything else seems to be gone or so infrequent we barely notice. She still twirls her hair, but not to the same degree. My son (8), who had IVIG 10 weeks ago, made tremendous improvement in week 7, so we are hopeful that she will too. They seem to be following similar patterns in terms of healing. My daughter is currently on Omnicef (300mg capsules), 2 capsules per day. She weighs about 100 pounds. My son (50 pounds) is on Augmentin, 1200 mg per day (I think, but don't have the bottle in front of me). Dr. B. is not in the office Fridays, but try again on Monday. Good luck and keep us posted!

We never did PEX, so I cannot comment on that, but my dd had IVIG 6 weeks ago (1.5g/kg). Her main presentation was tics. She is doing great - at this point about 60% improved. She looks and feels much better and we expect to see continued improvement over the next several weeks, if she follows the same pattern as my son. ds had a combination of tics and OCD, had IVIG 9 weeks ago, and is now about 75% improved. We are repeating IVIG next week for him (10 week mark). My daughter is scheduled to repeat IVIG at the three month mark because she will be away at camp until then. We were fortunate to get insurance approval, but not based on the PANDAS diagnosis. They both have very low pneumoccocal titers. Has your son had a full immune work up? Maybe something else will show up that will qualify you. Hang in there...you will find the help you need for your child.

Angela, Glad to hear the procedure went smoothly. Dr. B. and his staff are wonderful - we are so grateful for them as well. I am glad to hear they are starting to add prednisone in the list of pre-meds. My kids both had viscious headaches and vomitting the day after IVIG despite being pumped with fluids for days before. Prednisone relieved the symptoms, but he did recommend premedicating them with the prednisone the next time around so it doesn't happen again. My ds and dd are 9 weeks and 6 weeks post IVIG, respectively, and doing great (I will post an update on them separately). Wishing you the same success! Debbie

Brandy, I would just caution you that our Labcorp confuses this test with another test. I just took two of my kids in again last week for bloodwork and this test was requested again. Then they showed me where the result was on previous bloodwork, but it was not the test the doctor wanted. We just called our insurance company who said we can go to Quest within 14 days before or after an appointment with the doctor and it will be covered. I know Quest runs this test properly. I hope you don't have a problem with your results. Debbie

My son's symptoms pre-IVIG were symmetrical touching, constant finger playing and toe wiggling, fears at bedtime, turning full circle in the middle of walking straight, stepping over cracks between rooms, excessive hugging, throwing back kisses, repeating words and phrases, episodes of rapid eye blinking, lifting his shoulders to touch his ears, stomach aches and jaw pain. He was significantly worse before he started antibiotics one and a half years ago (that list of symptoms goes on and on). My daughter's pre-IVIG symptoms were eye blinking and rolling, nose scrunching, mouth opening, torso tics and compulsive hair playing/twirling. Her tics were relatively mild compared to how she was years ago. I have not specifically discussed whether IVIG is a cure with Dr. B. I don't think anyone can give me an accurate answer on that right now...only time will tell. For now, we just needed to work on getting the symptoms to go away. I was fortunate that my insurance covered IVIG for an in-network physician without prior authorization, so no diagnosis code was needed. However, my son would have qualified because he failed the pneumoccocal titers blood test.

We did IVIG with Dr. B. and are so grateful for finding him. My kids have had PANDAS for several years, but were only properly diagnosed about a year and a half ago. My kids improved tremendously on antibiotics (and steroids at one point), although not 100%, but continuously relapsed when around others with strep. Since the diagnosis we have seen several doctors, most of whom told us that my kids were too mild for IVIG or that my insurance will never cover it. Dr. B. was the first doctor to tell us that the duration of time that my kids have suffered with this should be considered, not just the severity of symptoms. He is the only doctor that looked into our insurance coverage, and fortunately, we were covered. Post-IVIG my kids are better than they have been in a long time and best of all, THEY SAY they feel much better. They are not 100% yet and I don't know if they will relapse or what to expect in the future, but for now, we feel blessed to have a doctor that is willing to treat them and see them through this.

It's been a long time since I posted an update, but I saw this post and thought it would be an appropriate time. ds8 had IVIG almost 7 weeks ago and is doing great. He had 1.5mg/kg over 2 days. As of now I would say his symptoms are probably 75% better. We are hopeful that we will see continued improvement, but we do have plans to repeat IVIG at the end of June if he is not 100% or close to 100%. Our only regeret is not doing IVIG sooner. dd13 had IVIG just about 4 weeks ago. She has had PANDAS longer (we first saw eye blinking six years ago, about six months later she had a full blown exacerbation). She has definitely improved since before IVIG, probably about 50% at the moment. We are hopeful that she will continue to improve over the next several weeks just as her brother has. We have plans to repeat IVIG in August if she is not close to 100% by then.

Thanks!

We have UHC which requires us to go to Labcorp for bloodwork. Our doctor has ordered some repeat bloodwork including C3D. The doctor has requested the C3D test before, we have gone to labcorp for it and they do not send results in to the office. My latest understanding is that labcorp does not run this test. Does anyone know where to go to have it done without paying huge out of pocket expenses? Thanks, Debbie

Hi Wendy, So glad to hear your children are doing well. My son and daughter are six weeks and three weeks post IVIG#1, respectively. (I'll have to post an update on them seperately). I was wondering about the timing/spacing of your IVIGs (ie did you repeat at 2 months, three months or some other interval)? Can I ask what you were seeing that convinced you to do IVIG#2 and #3 - was your son better and then relapsed or was he partially better and you repeated to try to get to 100%? Thanks, Debbie

Does that mean that cord blood might prove benficial in treating PANDAS?

Both of my PANDAS kids had a throat clearing tic years ago. My daughter then began a coughing tic which seemed to replace the throat clearing. She was misdiagnosed as having asthma, put on asthma meds, but the cough never went away (the throat clearing was gone by this time). When we went for a second opinion, the doctor thought it was a tic rather than asthma. From there we went to the neurologist. All of that being said, it is my non-PANDAS son who has been cleaing his throat the last few days. He does not do it often, but I definitely noticed it. He tends to do it when he has allergies and a post nasal drip. I have heard it before, only when he is suffering from allergies, and it seems to go away when the allergies get better. If it continues more than a few days, I will get him a throat culture and have his sinuses checked to make sure there is evidence of a drip. Knowing what I know now, I feel I can never be too careful.

Dr. Bouboulis is an immunologist in CT who has several PANDAS patients. We have found him to be extremely compassionate. Here is his contact info: Dr. Denis Bouboulis Stamford Office: 203-323-7744 (Monday, Wednesday) Darien Office: 203-655-9904 (Tuesday, Thursday)

You may want to consider Dr. B. as an option. He is in Connecticut. Let me know if you need contact info.

Wow, thanks for all of the replies. So much to think about... We did have his titers tested to determine if he is already immune - He was immune to diptheria, low normal for tetanus, not immune to pertussis. If he would have tested immune to all three, I would not even be considering the booster. Thanks again to everyone for all of the information.

My non-PANDAS son is due for the DTP booster. Has anyone experienced neurological side effects from this vaccine? Thanks, Debbie

Does anyone know whether the conference is taped and if so will the tape be available afterwards for those who were not able to attend?

When my doctor tells me the bloodwork looks viral, he means that there is no rise in the white blood cell count. Apparently, when it is a bacterial infection, the white blood cell count should rise.

According to our doctors, it depends on the dose and duration. Higher doses and longer durations require tapers. Smaller doses for 5 days or less do not.

My ds, also 50lbs, was on a 40mg steroid burst. We did see improvement while on the 40mg steroid, but as soon as we started tapering to a lower dose, symptoms returned. Perhaps you should discuss with the prescibing doctor whether the dose is high enough to see improvement?

My non-PANDAS son gets severe diarrhea with strep. The doctors originally missed the strep because they assumed it was a stomach virus and didn't culture him. It wasn't until I brought him back to the doctor because he was not getting better that they cultured him and he tested positive. Now, whenever he has this symptom, I bring him to the ped and insist on a throat culture. He is positive everytime.

I am sorry to hear you are still struggling with some issues post PEX and hope you get some relief soon. One of my two PANDAS kids has OCD, the other is primarily tics. We have not yet taken my son to a therapist to work on his OCD, we have only addressed it only from a medical standpoint to date (mostly due to time constraints). Although if behaviors continue post IVIG (he is on day 2 of IVIG as I write this), we will explore it. So while my opinion is not based on having tackled this through therapy, we have had to deal with it as well. I strongly feel that your sanity, and the sanity of other family members is crucial. When the OCD behaviors have gotten to you or another family member enough, it is time to take action. We have had sleep issues, but have never let my son sleep in our room. I will rest with him for several minutes in his own room and then check on him in increments - first I tell him that I will check on him in two minutes, next three minutes, then 5 minutes, etc. until he falls asleep. He knows exactly when to expect my return. And athough it is true I am leaving him in his room alone while he is a bit fearful, I do feel he needs to learn that even when we are not right next to him, we are taking care of him and making sure he is safe. When we had issues with urinary frequency and it became particularly difficult to manage in school, we arranged for the teacher to give him a certain number of passes per day (many more than a normal kids would need, but not unlimited.) Each time he left the room to go to the bathroom, he turned in a card. When he finished up the cards, he could not leave the class to go to the bathroom anymore that day. He needed to decide when he really needed to use them and when he could wait. Once we started doing this, he spent much more time in the classroom. I can't say it was easy for him, but he did need parameters. He frequently feels the need to touch/tap things (and often that thing is me or another family member). Obviously, this can get irritating to the person being tapped and so we have tried to redirect him. We know he is able to control this urge around classmates, and so at home we ask him to tap the table, wall, etc. instead, or to take a step back from the person who he is tapping so he can talk to them without being in touching distance. It is not easy and we try our hardest to implement these things in a loving, caring way. We all know too well that it is not just the child that is affected by PANDAS - it is the whole family - and so everyone's feelings need to be taken into account. Its a long road to recovery - and I have found that I am a better mom when I have my space and some time to myself. Wishing you some relief soon. Debbie