momaine

Is there a reason he isn't on any regular probiotics? those help. we have had good luck with culturelle as far as not having an upset stomach after taking antibiotics. (probiotics taken two hours after antibiotics) My dd still had vaginal/perianal strep though and she went on Diflucan which has taken care of the yeast.

What dosage did your child have? Is he/she on antibiotics? How long has it been since the IVIG?

I would really appreciate it if when people talk about the IVIG's that their kids have had, if they would also put the dosage. It makes a difference on what advice you might recieve since higher dose (1.5g/mg) is thought to be better for PANDAS because at that dose it reduces inflammation rather than increases it. I have heard it can take up to 8 weeks to see benefit, though that wasn't the care with my dd. (within a week or so we saw benefits) Have you ruled out Lyme with an Igenex test? (it tests bands that were removed from other western blots due to a vaccine that was in the works so everyone tested for Lyme wouldn't come out positive if they had the vaccine) Also, has your son been ill at all during this time? cold, bacterial infection? My dd improved a lot after the first ivig. Unfortunately, after the second she got another sinus infection. We're only 4 weeks out from that one and still hoping for more progress, but I'm certain that the sinus infection set her back a little. Hang in there.

not in our case. Lowered in intensity between exacerbations but never went away. It was over 3 years from initial exacerbation to diagnosis and it's been another ten months of treatment with antibiotics and eventually IVIG this summer.

My dd had gone undiagnosed for over 3 years when we finally figured out it was PANDAS. It's been ten months since we figured it out and she is doing amazingly well, though she is not yet at 100%. Augmentin worked at first. Then she got sick and worsened. Added in Azithromycin and she began improving again. A few short steroid bursts gave her additional relief. Then switched to Biaxin thinking maybe it was from Myco and she worsened considerably. Went back to Azith and Augmentin with some long steroid tapers (and treating allergies) and she began to improve again. Got IVIG 7 months after beginning antibiotics. Improved tremendously and at that point was able to get her off Augmentin and steroids. Had second IVIG and then within a week she got a cold followed by a sinus infection (first week of school)and symptoms began ramping up again. Put her back on Augmentin and symptoms evened out within 24 hours and she is now, a week later, improving again. But what I really wanted to say is that, despite being untreated for over 3 years, when my dd's symptoms abate (first with antibiotics and steroids then with IVIG) they just go away and she doesn't have left over OCD/anxiety to deal with. She is either overcome by the symptoms and unable to deal with them, or they just go away. So, I KNOW that when she is 100% that she won't need additional therapy to get over any left over issues despite the fact that she struggled for so long. For some that might not be true, but for her it seems that way. (and she hates therapy so that is not helpful, but she is strong and she pushes herself out of her comfort zone frequently which is really what therapy teaches)

I believe my dd got a sinus infection while on 500mg Azith. She said she had thick phlegm running down the back of her throat and her PANDAS symptoms were ramping up. Started her back on Augmentin (along with the Azith) and in 24 hours she felt MUCH better and her PANDAS symptoms stopped spiraling downward and have now (a week later) finally begin to improve again. Scared me there for a bit. Am thankful we figured out what was wrong so quickly and got her back on Augmentin.

For the first draw, when dd was terrified of a blood draw for OCD reasons combined with bad experiences, we got a mild sedative and talked her into it. We also went to a lab (not the nurse at the dr. office) and asked for the most competent phlebotomist (sp) when working with children. And we got EMLA cream to numb the sight. Between those three things we got it done. After that she didn't need the sedative and now after MANY blood draws, she can even have it done without the EMLA cream. (well, she did the IV without the cream, but not a blood draw yet) Best of luck

Praying for you too!

there was one thread that she mistyped it on but then she corrected herself later in the thread, but she's recieveing hdivig every 8 weeks, last I knew which was a month ago, or so.

Hang in there, things should turn around soon!

The improvement my dd got from a short course of prednisone did not show up until between days 7-12 depending on which time we are talking about. Hang in there. Hopefully it'll help. The worsening could be from more die off if there is still an active infection and you've upped the antibiotic. Just some thoughts.

If they gave him relief, why not try it again and see where it gets you? Is your long term plan for IVIG? Has he had it already?

Initially ASO and Anti-dnase would be the first to check as well as a throat culture and an inspection of the nasal cavity by someone experienced in identifying sinus infections. My dd's ASO and anti-dnase were in the normal range, though. What she did fail was a pneumococcal antibody panel and her C3d (circulating immune complex) was highly elevated which indicates and autoimmune process going on. She was also tested for a million other things that I can't come up with off the top of my head but one was mycoplasma pneumonia. Good luck.

last year it was a covered drug in our plan but they took it off the list this year. I tried to get an exception but failed to get approved from United healthcare. I didn't have a doctor's note to back it up though. I've read on this forum that Dr. K prefers regular augmentin.

Well, I'm biased becasue we see Dr. Bouboulis and I just love him and I feel he's well worth the 6 hour drive we make from Maine. He has begun doing the IGENEX lyme test on his pandas patients plus he does this massive amount of testing to find the route cause of the infection. He is very thorough. Initially, we went back for a follow up visit 4 weeks after our first visit to go over lab results and then he ordered ivig for my dd who failed her pneumococcal titer panel and had a high C3d as well as classic pandas symptoms. Then after her first ivig we went back a month later for a follow up. then she had a second ivig 8 weeks later and he thinks we are on the right track and we don't need to see him again till her next scheduled ivig. (8 weeks from the last one) I do know a family who saw him who is having ivig done locally due to insurance purposes but since my insurance covers Dr. B I prefer to continue seeing him, despite the drive, because I've finally found someone I trust and that means more than you can know. It just feels better than you can know to have someone on our side that feels confident that they can help you. And so far what he is doing is working.

Well, I'd risk trying it while I waited for an apt. if I were desperate but I wouldn't go this alone becasue its far too difficult. But you need a prescription to get antibiotics unless you get them out of country. Not sure how you'd do that. I'd probably start by begging my pediatrician or general practitioner for a month of augmentin or azithromycin, telling them how much the amox. helped and bring them info from this site and asking them what can it hurt?? Best of luck. It'd be worth a two day drive if you can get someone on your team.

my dd is 110 lbs and on 500mg azith per day.

If your child were mine, I would start with a month long high dose antibiotic (either Zithromax or Augmentin) followed by a steroid burst or taper. I'd give probiotics 2 hours after antibiotics and I'd get a prescription for Diflucan to keep yeast at bay. If the antibiotic seemed to work, I'd stay on it until further notice. That is where I would start. Dr. K is a good doctor and if thea antibiotics stopped working and the prednisone seemed to help, I'd head down the IVIG road. I'm sorry it took so long for me to get it for my dd. It has helped immensely.

The way I understand it, PEX cleans the autoantibodies out of the blood which brings about a quicker response, however, if the child still has an autoimmune disorder, they will make more autoantibodies and the fix will only be temporary. IVIG stops the autoimmune process (or at least that is the theory) so that no more autoantibodies are made. (once the good antibodies from donors are in the blood long enough the autoimmune process will stop) Glad you got a diagnosis and are heading in the right direction. Curious to know who your doctor is, if you want to share.

Maybe we were just lucky, but the combination of drugs that Dr. B has prescribed for my dd works wonderfully and she had no side effects from the IVIG either time she had it. they give her benedryl 50mg and 400mg Motrin(dd weighs 110lbs) before IVIG, 6 hours later, and then six hour later. (repeat the second day) They also give her 40mg of Prednisone once per day during the procedure and more to use as needed the few days afterwards. They also give her a bag of iv fluids while she is infused. It has been the perfect combination for her and others. He said it hasn't worked for everyone but for many it has. Best of luck. (also, she drinks a lot the days leading up to ivig and the days of)

Holy heck, what a week! Glad to know that dd rebounded. Hope she continues to make gains.

THey've said that its controversial and the feeling I got is that they don't treat anything controversial.

Sounds like it could be PANDAS to me. There is a PANDAS doctor list on this forum under helpful threads that you might want to read. http://www.latitudes.org/forums/index.php?showtopic=5023 For my dd, Dr. Bouboulis in CT is our life saver.

http://www.latitudes.org/forums/index.php?showtopic=5023 if this doesn't work, it's under helpful threads for pandas at the top

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B. I know a family who had PEX with Dr E. about a dozen times before finally going to Dr. B and getting IVIG. Though I can't speak for them, I'm pretty certain that they would advise you to see Dr. B. for IVIG following the PEX. He's only an hour from Dr. T who did not or could not order IVIG for my dd. He is very knowledgable and caring but in the end my dd needed IVIG and I could not get that from him. Also, Dr. B found the selective immune deficiency in my dd that qualified her for IVIG through our insurance. That was huge for us. Good luck.