monarchcat

Certainly an immune reaction as the others said, but something also to try long-term is switching to a toothpaste that doesn't contain SLS (sodium lauryl sufate). SLS is definitely a no-no for those prone to canker sores and unfortunately is found in most toothpastes (it's the main foaming agent in toothpaste, soap, shampoo, etc). Tom's of Maine makes a nice mild mint without SLS called Clean and Gentle Care. I used to be very prone to canker sores, but now I avoid SLS (in everything) and I don't get them anymore.

Would you guys please let me know the names of the ENTS in that you have in the boston area? I am an hour north of boston and the T&A thing will probably be something we investigate at some point. thanks!

Along with what everyone else mentioned, I would question the dose of azith. My son started on azith 250mg/day when he was about 80lbs and it was not enough. He has been on 500mg/day of azith now since June and is doing better, but we still have started IVIG as well. And he still has tics. My daughter has been on 100mg/day of azith since last spring because she had a sudden onset of OCD after strep. Because we treated it quickly (with full strength azith) she has no residual effects and the 100mg dose is purely prophylactic. If she were symptomatic I would insist on a higher dose.

WooHoo!! I will be there!

It depends on many factors, such as whether he's been on abx previously, how long, which one, what strength, etc., and how he's done on the abx. I don't think Dr. B would go "out of the gate" with IVIG unless that was the next logical course of treatment, and it was warranted. In our case, when we first went to him, he switched our abx and then six months later recommended IVIG based on where we were at the time. At that point my son had been on abx for a full year. And don't forget, he will present you with his medical opinion and his recommendation... you don't have to do any treatment you are not comfortable with. Good luck tomorrow!

I'd probably start with one adult motrin (200mg). Depending on weight she may be able to take 2. My son is 10 years old and 115 lbs and takes 2 advil every 6 hours for a few days following IVIG, per Drs orders, but other times I give him one if he has a headache, or is especially symptomatic with PANDAS. Advil is hard on the stomach, though, so always give with food and it should usually only be used short term.

Thanks. I guess we'll wait til a couple months after the 3rd (and hopefully final) treatment in April. No sense muddying the waters.

DS just finished his second IVIG this week (1st one was 8 weeks ago). I need to take him for lab work and I thought maybe I'd bite the bullet and get blood drawn for the Igenex lyme test at the same time (I have the kit). I didn't do it before because he had two negative lyme tests prior (not Igenex, though) and his Dr. felt like it was unlikely that he has lyme. Still, though, something will nag at me, i think, until I do the Igenex test. I wonder, though, if the antibodies from the IVIG will render the lyme test invalid? Can I do this or do I need to wait until he's completely finished with IVIG treatments?

It sounds like it could be a night terror or confusional arousal. My son has had these off and on since he was a toddler (he's almost 10 now). They are very strange. I am actually going to post a question on night terrors today myself! When my son has one he will sometimes be aware enough to answer me or make *some* sense, but he'll also moan, thrash and talk/yell. Confusional arousals are similar to night terrors. My son will be very agitated for 5 minutes or so then it will suddenly end and he'll go right back to sleep. Needing to pee will often trigger an episode so I've learned that when he starts moaning, etc., I take him right to the bathroom to pee. He will cooperate and pee even while he's agitated and talking nonsense. It can help end it quickly. Sometimes a noise in the house, such as someone using the bathroom will trigger an episode as well. Here's a little blurb from google:

All my son's behaviors and tics disappear when he has a fever. After the fever we will usually see an ramp up in symptoms, but during the fever - nothing. It's amazed me every time.

I used a few different meditation/relaxation cds with my son when he was younger. I know we have Indigo Ocean Dreams, but I think we only tried it once or twice. It may be wonderful, but just not something my son connected with. I think, if I recall, it was a little young for him. He's always been very concerned with not seeming "babyish". The one he has consistently enjoyed is this one: http://www.amazon.co...96241952&sr=8-4 Her voice is VERY relaxing and I always enjoy listening to it, too.

It helps me to know that there are parents have gone through this journey and come out whole on the other side. I feel like I am still stuck in the middle of it. My son has had PANDAS since age 5, though we didn't know what it was back then. I diagnosed it myself when he was 7, and found treatment starting when he was 8. He's now almost 10 and we just did our first HD IVIG 5 weeks ago and things are still in the "worse before they get better" stage (at least I hope they are going to get better). 2nd IVIG is scheduled in February. I argue with myself daily over what I need to do for myself. I am thinking at this point I should probably be on an antidepressant but can't bring myself to go to the Dr. I am not "depressed", but I certainly have stress and anger issues. My son's PANDAS presents mostly with EXTREME irritability and he's often angry, cranky, paranoid and generally pissed off at everyone and everything. I try so hard to be the calm force, but I snap and now I am also "chronically cranky". I can only hear how stupid and idiotic and how much he hates me over and over again so many times until I crack.. and then I cry and yell, even though I know it's not his fault. I'm crying as I type this because everything is so constantly close to the surface for me. I don't like attention on me. I just want to be strong and get things done with minimal fuss and attention. I feel like I shouldn't "complain" because as difficult as my son is, sooo many of you have kids in tougher situations. My daughter was diagnosed last spring at age 3, so I know we've got a long road ahead with her as well. At the same time, i am generally a very positive, upbeat person. I don't like to whine and complain, and typing out the above felt a bit strange for me, but cathartic at the same time. I wish NO ONE had to deal with PANDAS, but I'm grateful to the other parents here for being so helpful to myself and others.

I figured out how to order a digital copy of the issue, so I scanned the article and put it here if anyone wants to read the whole thing: http://www.box.net/shared/3x6z0neg6z

We did an initial visit for both kids and Dr. B. spend over an hour with us. He is very generous with his time, so don't be impatient if you find yourself waiting awhile in the waiting room (we waited a little over an hour but it was well worth it). We hadn't had the labs done beforehand, so he sent us home with lab slips. I opted to do a follow up visit via a phone conference to go over the labs and discuss the next steps. The only downside to that is that Insurance won't cover phone consults so it was $200 out of pocket (but it would have cost more to drive down again, etc as we are about 3 1/2 hours away). We just returned to Dr. B's last week for my son's first IVIG. Dr. B is wonderful and his staff are very caring and helpful. You'll be in good hands.

DS (9) had IVIG at Dr. B's this past Monday and Tuesday. Tuesday morning he had a headache, but it was better after advil and benedryl. He felt good on Wednesday and Thursday, but I kept him home from school. I sent him today and he came home at 3 saying he was nauseous and he threw up shortly after. He threw up again a little while ago. He head "doesn't feel great" he says, but he doesn't have a bad headache. No fever. Is this likely a side effect of the IVIG, or could it be that his tummy is just over done from all the prednisone, advil, etc. He finished the prednisone on Wednesday, but I did give him a dose of advil before school today. Is there anything that those who have gone through this have tried for nausea?

I'm sorry you are going through this. It must be so disheartening to see it come back after thinking you were in the clear.... Here's what I would suggest, in a nutshell. I see you are in Boston. I am near Boston as well. Both my kids have PANDAS and we see Dr. Bouboulis in Connecticut. It's about a 3 1/2 hour drive, but well worth it. Make an appointment and go see him. He can order the correct tests, prescribe antibiotics, and order IVIG if necessary. Boston is such a great hub of medical expertise... but not for PANDAS. At least not yet. If you haven't been reading this board for year or so, you may not know about Dr. B yet, but he and a few others have emerged as the top PANDAS docs in the country. It's worth the travel to be in the hands of someone who knows this disease well. Has your son been on prophylactic antibiotics the whole time since his episode in 2008? If not, is he on abx now for this episode? Which one and what dose? Good luck, and again, I'm so sorry you are dealing with PANDAS again....

I know there have been lots of posts about IVIG, but I hope you'll bear with me for one more... We just got back from IVIG treatment w/ Dr. B (1.5g per kg over two days). DS (9) handled it all very well, considering, but he's tired and cranky. I'm interested in hearing the experiences of those who have been through IVIG, what you encountered in the first days/weeks/month after IVIG, particularly at this dose. I know every kid is sooo different. I'm not holding my breath for huge improvements (we are already scheduled for IVIG #2 in a couple months). I'd just like to hear what others saw/experienced after IVIG... did things get worse before they got better? Did they not get better at all? Or was it a quick improvement. I know all these responses are possible. I just would love to hear how it went for others. DS is 9, on abx for the past year, and has probably had PANDAS since age 5.

I don't know about the possibility of PANDAS at birth. Perhaps it's possible, or perhaps there are factors in place at birth that lead to the susceptibility to PANDAS. I will say this. My son was "challenging" since the moment he was born. I couldn't put him down, he nursed 24/7 and he NEVER slept by himself until he was 4/12. He was high maintenance as a baby/toddler and had some anxiety. BUT, I say the PANDAS started when he was 5 and had a sudden personality shift and behavioral changes. Still, though... there was "something" before that.

My 4 year old dd currently has molluscum. She has about 15 bumps under her arm (mostly in her armpit) and a few on the back of her neck. I took her to the doctor when she still only had a couple and the dr tried freezing the biggest bump. It did eventually fall off, but by then there were many other small ones. I tried tea tree oil for a few weeks and my feeling was that it helped keep the bumps from getting out of control, but it was a losing battle. DD hated the tea tree mostly because it tickled when i applied it with a q-tip to her armpit. Other than that it didn't cause a rash or any other side effects. We have stopped using it though. One of her friends had it (might be where she caught it) and the dermatologist eventually used cantharone (blistering agent) on it and that cleared them up. I think we will probably have to see the derm pretty soon as well.

We are facing a similar situation (we have Cigna, though). We are going for our first IVIG in a couple weeks and since our plan is 80/20 we will have to pay the 20% as well as any remaining balance toward meeting the $400 deductible (which I believe we have already met for my son). Then in 2011 we will have to pay 20% of the first treatment, but for the second treatment we will cap out the $3500 individual out-of-pocket maximum and everything will be covered 100% after that. I think we will be doing at least 2 treatments in 2011 (and one in 2010). It's expensive any way you slice it, though. I'm soooo glad insurance has approved, but we're looking at probably at least 6k out of pocket when all is said and done.

My son is 9 and has been taking pills for awhile as well. He does complain when they are large (he HATED taking the augmentin XR) but will do it if he has to. I have him take a saccharomyces boulardii (the same "good yeast" that is in Florastor, but less expensive) and a 30 billion cfu probiotic blend from Healthy Origins. I give the Sach B in the morning with his abx, and then a sach b and the probiotic at night. I've tried many different types/brands, etc and have whittled it down to these because I think they work well and they are a lot less expensive than some other options. For awhile I had him taking about 250 billion cfu/day from Custom Probiotics, but frankly, it's hard to maintain as it's costly. If he ever shows gut trouble, I would probably switch back to that. Here are the links if you are interested: Jarrow Saccaromyces Boulardii Healthy Origins 30 billion CFU

I would start by ditching the pen-vk and trying full strength azith or augmentin. The only thing that has consistently worked for my son (mostly anxiety and severe irritability) has been 500mg/day of azithromycin. We were on augmentin XR 2000mg/day for quite a while but he kept getting strep on it and behaviors kept returning. We had one dr. prescribe prophylactic pen-vk and I thought we were going to end up in the hospital until we got him moved back to azith. In my opinion pen-vk works for some, but most PANDAS kids need something much stronger. I know, too, that many have had some luck with cognitive behavioral therapy for OCD so I would look into that as well, but FIRST I would insist on getting him switched to a much more kick-###### abx. Good luck.... :-)

I haven't wanted to add anything to my son's regimen of meds/supplements for awhile because he's been resistant to the number of pills, but I've always wanted to try a b complex supplement (either with a good amount of inositol in it, or with a separate inositol supplement). Do any of you give b complex and if so could you be specific about dosage for both the b's and inositol if given separately? I did read a couple of threads where people mentioned that they felt their child's tics worsened after starting B vitamins, but I'm willing to give it a try.

Does anybody know if there are adjuvants such as squalene in this years vaccine in the US? It seems as though the vaccine issue is still a guessing game, even for the big docs. Last year Dr. L told us absolutely no flu shot, and then after that seemed to change her mind when speaking to other people. I think there really is no definitive answer at this point and still too many unknowns. Kids have been harmed by the flu and harmed by the vaccine. There's no good choice...

I'm sure my son would love to! I'll ask him and send you a PM.