bmam

eljomom, I hear your frustration! I, too, am beyond frustrated that the NIH-YALE study is limited to 12 yrs. old. We are dealing with now 19 yr. olds (PANS since middle school possibly prior) that have debilitating symptoms. They are profile perfect for the study, but for their age. Plus, they are identical twins, so we have a study within a study. We made it through high school, but college is posing a challenge. We are on the books for the first IVIG, for one. The other will start prophylactic abx. We are hoping and praying for success.

The post above is not Noah, but rather his mother........bmam....oops, I didn't realize I was using his log in..... I apologize I have been away from this forum for so long. After our consult with Dr. K and not getting definitive answers regarding the IVIG back in Feb 2010, we continued treatment with abx, a hope and a prayer. It got us through for a while, but then a mild episode hit in the spring. We successfully treated with abx. But enough was enough. Before leaping into the unknown with IVIG we thought we would go the toncilectomy route. So, last summer, we decided to finally have the twins tonsils/adenoids removed, we had enough evidence that it might help. It kind of has...they don't have as many episodes however, the episodes seem to last longer than before tonsillectomy. Just before the surgery one twin complained of the "tell tale" sign that he was entering into a PANDAS episode. We proceeded with the surgery and right after the Tonsillectomy/Adenoidectomy he had an immediate full blown onset of his PANDAS. Important to note that the Dr. said his tonsils were filled with puss when he removed them. We treated with the usual course of abx. It passed, but took a bit longer to pass. This all happened within days of their beginning their Senior year of high school. The son that had the episode started AP Calc and AP Physics with c's and d's ended the quarter with A's in both, and was healthy the rest of the semester. Fast forward to college apps and decisions being made and purchasing a new house and moving. I neglected this forum and wish I hadn't because I would have seen Lauren Johnson's mom's posts on the success of IVIG! So happy for your success and wish only for it to be everlasting! All was under "control" in our life until this past August when the other twin came down with sinusitis and a PANDAS episode. It has lasted quite a while. We needed to pack up and leave for college (Out of state), what to do? It always passes, always. This time, it started to get better, under control, however a week into school, he came down with the flu and respiratory Virus or infection, not sure which. We had stopped the course of abx too prematurely, not on them long enough, perhaps not the right abx, it was disaster. We really didn't have a treating Dr. that knew enough about all this to consult us to continue or switch the abx. We picked him up from school, he is now on Medical leave from Emory University, until we get this resolved. This is the longest lasting episode to date. I think we are on week 6 or 7! WE ARE READY FOR IVIG! I came back to the forum to see what has been posted and WOW! WE ARE READY. I called Dr. B's office we have an appt scheduled for late Oct. however, we need treatment now. Before I try to get in earlier we are trying to consult with a Dr. that will get him the IVIG local in WI. By the way, the school was great working with us as far as IEP was concerned. They had never heard of it, however, they were willing to make the accommodations based on our Pysch. recommendations. His twin is attending Wash. Univ in St. Louis and so far has been healthy. Wash U is also willing to accommodate our sons needs should an episode occur. We are praying that IVIG will help the one twin, so that if an episode with the other happens, we can get him the IVIG right away as well.

THANK YOU LAURENJOHNSONSMOM........you are terrific, thank you for sharing. When faced with the choice on the next step in treatment, it is so difficult. You want to help one thing and only pray it doesn't set another off. I hope people will keep this thread going and share their successes/setbacks and IVIG experiences. Once we decide to do it, I will share for sure.

I am so new to this forum and how to use it properly. Haven't learned how to copy quotes yet. I will say that I feel like I finally found a home. THANK YOU EVERYONE for your helpful posts! I have found so much hope and comfort through your posts. We are weighing the pros and cons of IVIG. I haven't heard enough stories for my boys age group that it has helped put kids in remission and reset their auto-immune system. DCMOM thank you for sharing. And, please keep coming back!!! You are an inspiration. Everyone on here is an inspiration, as we all know how difficult live can be living with this illness. Buster, we are trying to determine if it is indeed PANDAS/PITANDS it seems quite clear. We first noticed episodes pre-puberty at age 12. While my dts17 (dear twin sons) both are high functioning, they overnight become someone else for about 14 days. Along with their physical illness: sinus pressure and headaches, usually an infection; they have mental symptoms: anxiety, total lack of concentration, sleeplessness, OCD, and intrusive thoughts that present a day or two before physical onset of illness. No tics. We have experimented with several different types of abx, which usually clears up the sinus and behaviors at about 2 weeks from onset. When dts come out of their episode they have no idea they were not able to function. One of my dts's was asked by his psychiatrist to explain his difficulties during that time period, he said he didn't remember. It's truly like their body and minds are possessed. As far as abx we have done zithro, amox., and now with Dr. K's guidance, augmentin 875 mg. and longer dosing than we have ever done in the past. There have been several instances where dts would recover and then days later revert back to OCD behaviors. I suspect that we didn't give the abx long enough. We had our first phone consult with Dr. K. Thankfully we did, because the next week, dts had an episode. He was put on a 5 day course of steriod, overnight he became himself and even higher functioning. He was like a rock star solving math problems that were most difficult to solve. The day before he could barely add 2+2. Since he responded so favorably I think Dr. K feels that IVIG one time with one year abx would be a permanent solution. Can this be true?

We can't seem to get a definitive answer that IVIG works....most of the people that have reported success have only found success for a short period of time. The symptoms always seem to reappear. If that is the case, why the IVIG?? Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term? We are contemplating the positives with the negatives for IVIG. Also, would like to hear the negative side affects so that we can see both the good and bad. Would love some answers, as we are perplexed which route to take.

I am new to this website and didn't go into detail of our situation. I have tds (twin dear sons)17 yrs. They both suffer from what we now believe to be PANDAS. My husband had suspicions for years, but I didn't believe it. Our ped. didn't believe it. Our psychiatrist thought perhaps, but didn't know enough about it. We convinced our ped to put the boys on abx when they would start to exhibit signs of deterioration ususally the mental came before the physical. He was agreeable, but very skeptical. We finally had our first phone consult with Dr. K. He prescribed an 80 mg. burst of Prednisone for 5 days to test if auto-immune would respond. The difference was astounding. A miracle. By day 2, ds was solving the hardest Pre-Calc H problem that noone could solve. He was like superman. Now day 7, he finished the Prednisone two days ago, ds is back to no concentration, anxiety and other symptoms. Wondering if next time we can try the burst with tapering off instead of stopping cold turkey. My boys never have episodes together--thank goodness! It usually comes one right after the other, which I am not so sure that is great either, but easier to deal with one at a time. THey have the episodes about 2 to 3 times a year, which is so weird. These boys are straight A students, at least they were. They have taken alittle dip in their academics because of the mental debilitating nature of their episodes. They can't concentrate. Now we need to determine if these boys are candidates for IVIG. I wish we had this knowledge when they were 14, would have possibly spared them all the heartache through high school. Does anyone know if IVIG has been successful long term? And with this age group 17yrs.? I can't quite get the answer........

my son who is about 180-200 ls. was put on a 5 day 80mg burst of Prednisone by Dr. K. Hope this helps!!