beeskneesmommy

Our specialist told me that the "on/off" administration for abx can cause further problems. He feels that this can cause the immune system and the antibodies to "disconnect", furthering the autoimmune process. Consistent, steady levels of abx is necessary for treatment. When my son went on Azith for 5 days, I would see an improvement, then after he finished, he would go down hill again. Although it took about 2 weeks, Azith administered on an ongoing basis brought him back for months until another Strep infection managed to get thru. It is not always a permanent fix unless you start very early, and even then it may not be. However, it has helped immensely and our son is further along than he has ever been at this point. We are still going for IVig, however, because PANDAS started very early and went untreated for some time during his early years. If I have one strong piece of advice for you it is to get in ASAP with one of the known specialists in the country. There is a 2+ wait list, so make that appointment if you haven't already. A pediatrician, although he/she may have great intentions, is often not educated in the area to the extent that your kiddo needs.

Interesting that a PANDAS doc told me to make sure that I got extra Choline to help brain development during a time that I was trying to get pregnant again (knowing my son already had PANDAS). Just a thought. Decided against having another child after all, but a note of interest...

Please do not cold turkey it, but start titrating it down if you choose to take her off. I am not a fan of SSRIs in kids at all, if avoidable and PANDAS kids seem to have some trouble with exacerbation of symptoms...

Similar, I think. My son, almost 6 is a "milder" case. He was dx at age 2.5 and had a major, acute episode Sept. 2010. It took a long time to get him here, but he has responded well w/abx. However, when exposed to Strep and some other "bugs", it always comes back for another flare. In order to get him across the finish line, we are choosing to have IVig. We have several "big gun" specialists on our "team" and all 4 agree that IVig may very well end this roller coaster ride...and I do not use the word "end" loosely. We have been told that in our son's more "mild" case, given the fact that we have treated strongly w/abx throughout, 1-2 rounds of IVig may send it all packing. We are scheduling it for mid Sept. Good luck and best to you! -Kath

I would get blood work done if I were you. I was also a chronic Strep kid and it is believed that I had "mild" PANDAS as a child as well, although back then it was not a diagnosis. Anyway, had my tonsils out at age 17. I am now 48 and have had 2-3 + Strep cultures when My son, age 5 has been infected. We pass it back and fourth. Recently, I had titers drawn after another "cold" and they were abnormal. Dr. B put me on 30 days of Augmentin and my son showed great improvement during that period of time. I suggest that you get your son's PANDAS specialist to make you a patient as well, so that your situation can be approached from that angle...good luck and hang in there. Keep fighting the good fight!

PEX is not appropriate for my little boy at this time. He has an unusable exit vein. He would need a port which would lead to a higher risk of serious infection and the lengthy time that that it would have to be in would add to trauma. IVig is much less expensive for his case as well as much less intrusive and traumatic. Go figure.

Hi - this is not the 1st time I have read about this. I think we will give it a try, alsi because all of the abx are giving my son intermittent reflux. He is 1/2 that weight at 43lbs. I see Dr. Latimer on Wed. and I will ask her as well...thank you!

There is a level 1 appeal, reviewed by a Cigna group. Then there is a level 2, also reviewed by a Cigna group, but a different group of people. if both of these are denied, there is a level 3, which will be reviewed by an outside mediation company. If level 3 is denied, there is no recourse. However, if you can hang in there and get to level 3, your chances may be better. This is what I am counting on. In addition, IVig is not technically excluded as a PANDAS treatment for all Cigna plans, including ours, from what I understand through my husband's HR. They are just choosing to deny. They made us get a specialized blood test in order to submit the request for approval and my son "failed" it. However, the test is also an experimental research tool that has an unreliable outcome...go figure. They are just playing games.

JAG10, I like the way you say that appropriate tx 'sets kids up for success' at puberty. I am hoping that IVig will help my kiddo get over the fence because we are being denied by Cigna and we are likely to have difficulty managing to pau for more than 1 IVig at this point. My son is very young, almost 6. He has been treated with abx since he was 2.5 when we caught on that this was what he was getting...over and over. However, they were only 10 day runs. At age 4 he had a T&A which set off a major acute onset of PANDAS symptoms, at which time he started abx daily. Took us the better part of a year to get things under control. A year ago, he started Augmentin and Azith, daily, which has done wonders, but still, he has responses to other sick kids and exposure, some of them pretty bad. He always comes back, though. So, I guess my question is, do you think we have been treating enough to help his "set up" for success so far and do you consider him "young enough" so that 1-2 IVigs might cause a significant improvement?

Will PM you, thenmama.

Got to say that looking for co-infections is a must after reading your description. As for onset of puberty decreasing symptomology, I have had several specialists tell me that this is entirely possible, the concern for us being, however, the onset of PANDAS at such an early age (prior to age 2.5).

Oh #@&%$# !! Just got the word that Cigna denied IVig d/t it being "experimental treatment for PANDAS". This seems to be happening a lot with Cigna recently. I am so frustrated and worried! I already started getting ready for the 1st appeal, but I would really like to know if anyone out there has been approved by Cigna over the past couple of months since the new medical director started over there....please send up prayers for us!!

Amox worked for my son's Strep the 1st time and then became worthless. Cephalexin worked for a couple more bouts of Strep, then worthless. Strep kept coming back and with it, more prominent PANDAS symptoms. After he had his tonsils out, he had a major episode and my beautiful boy looked severely Autistic for several days until the Augmentin I insisted upon kicked in. That was 9/2010. It has been a long road, but ALL of the symptoms that you are describing are what my son looked like on and off, to a larger or lesser degree, throughout the process of slowly healing over the past 2 years. I would get your kiddo to a specialist ASAP. We see several, but primarily Dr. Bouboulis who has taken our son very far over the last year. Best to you!

Thank you. Definitely do NOT want to say PANDAS to insurance! Our doc's office is trying to get it thru. We will see what happens and I will keep you posted. Any diff. in quality or outcome that anyone knows of betw. Gammaguard and Gammunex??

Filed under immune deficiency or autoimmune disorder unspec. Whatever you do, don't use the term PANDAS when trying to get approval from insurance.

Looks like we may have some trouble getting insurance to cover IVIG. Can anyone tell me what Dr. K's CURRENT out of pocket prices are for each 2 day round of IVIG? Got to get ready in case we need to dig deep...

I cannot say of you are over reacting. What I have done since the start, knowing that Dr. B is terribly busy, is schedule phone consults ever 4 weeks. I keep in touch pretty consistently that way and yes, it gets expensive and we are thrashed financially d/t PANDAS, but it is worth it. It gives me comfort knowing that we are penciled in regularly. Are you anywhere near them? I would also consider call ing daily to see if there are any cancellations and going in person. That way your kiddo can be examined as well. Do you have a ped involved in the infection part of it all? If there is cycling infection, perhaps you can get some answers there?

Yes. Call and tell them that you have to speak with someone right away - they do have options to speak with a nurse, I believe NP. You will have to pay the 125.00 for 15 minutes but that person can teleconference with you faster than trying to schedule Dr. B. Also, try emailing the nurse line and telling them that your kids are sick and and that it cannot wait until your appt. w/Dr. B.

There are more than 5 specialists, but these are some of the well known ones. There are docs that can and will help. Tell me what part of the country you are in. Our son had an acute episode just before his 4th birthday with many of the same symptoms. He had already been dx w/PANDAS, so we knew what was happening and got him to Children's Hosp. of Phila. immediately for treatment. You kiddo needs longer term antibiotics. Hang in there and know that you are not alone. You are welcome to PM me. Kath

Thank you - this is great to read. We are currently precerting for IVIG after several years of abx. Our 5 year old is doing much better than he was 2 years ago, but we want to push him over he finish line if we can.

That's the million dollar question. However, I can say that my son has had some pretty severe "brain fog" among other typical PANDAS symptoms, repeatedly over the last several years. When he comes out of flare his thinking and functioning is just fine, even a little advanced for his age. It is clear that he is still able to learn an develop in part, even when he is doing poorly. It is important to catch it ASAP when you see them start to show signs of a flare. We use Ibuprofen and when the flare is longer lasting, we have used steroids which generally give us great success. If this pattern has continued for a long period of time as my son's has, and you have exhausted other treatments (DS5 has been on Augmentin and Azith daily for a year and other abx for a year prior), it may be time to take a look at the IVig as an option. In addition, it is important to note that the abx combo has taken my son very far. He is much better. However, all symptoms have not subsided which is why we are working toward precert for IVig at this time.

I agree w/Kiera. We have a team of 3 PANDAS specialists across the country. Dr. B is the furthest to travel but at this time is the primary. We chose him for several reasons: 1. his aggressive strategy toward treatment, when appropriate and necessary; 2. his thorough testing choices; 3. his staff's willingness to work hard with insurance companies; 4. he has a transfusion center on premesis. Dr. B has taken us very far in ther threatment of our son. he has, in essence, been instrumental in saving our son's life. With regard to availability for appointments and communication, every excellent PANDAS specialist has a long wait for an initial consult at this point, for obvious reasons. We have had good communication with Dr. B because we initiate it and take responsibility for making it happen. We make appointments for phone consults every 4 weeks and we find a way to pay for them. This way, familiararity is promoted, we never go more than a month without speaking with him and he is able to keep very good documentation regarding our son's progress. We do not discount other specialists, in fact, we see 2 of them regularly. However, we chose Dr. B as the primary because it is a good fit for us. We aggressively attack the problem and we are having execllent results, although we have a ways to go to cross the finish line

I did not take my son off abx. IgeneX testing was thru Dr. Bouboulis' office. I was not told to do so. Lyme and Bart both were borderline +. I have always questioned IgeneX's results. My son is classix Strep:PANDAS morphed to PITAND. 10 months later we used another facility that also used the long culture method and both Lyme and Bart were neg.