T_Anna

Thanks. He had a yeast issue and is taking Diflucan (he smells sooo much better, despit showering issues). I think the head hitting is a frustration reaction (it has been in the past), because it seems to happen only when he is trying to concentrate/figure something out on sketchup or trying to fall asleep...I'm assuming that he has racing thoughts and that delays sleep. He was never one to talk about his OCD at all, maybe a hint here or there, but nothing to revealing...that said he is very chatty on anything else. I will wait until next week, but am tempted, after my appointment, to see if it's the Luvox and that now that many of his infection #s seem to be dfeclining that the possible SSRI activation is more obvious. Overall he seems to be better. He is moving around off the couch more. Micomanaging his younger siblings' lives more...telling them what to pack for school trips, how much money to bring, what to write in research papers, etc. Of course he still cannot take off his decaying socks, leave the house, etc. He still only has a BM on Wednesday nights and Saturday evenings too. Waiting for Cunnuigham panel, wondering if that will give us better ideas : P Waiting and waiting and waiting is the worst part of this disease! T.Anna

Lol! You guys are great! Anyone want to weigh in on why he is hitting himself in the head at night? He used to do this in November/December when he was still fighting the rituals and would get frustrated. He started doing it again Saturday night or Sunday night...which is post NAC removal and pre folinic acid tampering. On the plus side, he was sleeping heavily by 5am this morning, so we've gained an hour! T.Anna

11/14/12 1/2/13 5/16/13 MYCOPLASMA <0.9 IgG 116 103 194 PARVO B-19 <0.9 IGG 0.7 1.5 <0.9 IGM 0.2 0.1 Are these numbers high? I have an appt next week, but am trying to figure this out. All the other major issues have gone down, including Strep and. Coxsackie. T.Anna

Just got DS's blood results, Strep is going down nicely as well as Coxsackie, but MYco went up as did Parvo. 11/14/12 1/2/13 5/16/13 MYCOPLASMA <0.9 IgG 116 103 194 <0.9 IgM <770 <770 <770 PARVO B-19 <0.9 IGG 0.7 1.5 <0.9 IGM 0.2 0.1 DS15 is currently on Augmentin XR 4000/day, Valtrex 2000/day and Doxcycline 200mg His mood is better, but he is still stuck in severe OCD. I have an appt with dr to discuss test results next week, but figured I'd see if anyone had any pointers. His vitamin D has dropped too, and I'd love to get rid of Doxy so at least he can sit in the sun without my worrying. We also did the Cunnigham panel and I need to call them, but it's a rotten day to call Oklahoma City : ( Thanks as always, T.Anna

Nicklemama, what insurance do you have? My insurance agent told me to find out what companies cover IVIG as Oxford has denied both even after appeals and tons of letters etc. T.Anna

We have used Clindomycin and Refampin to clear up strep. Right now DS is on Augmentin (penicillin) and Doxcycyline. T.Anna

My DS15 probably had PANDAS for many years before we discovered what it was, one of his triggers is Coxsackie which he had at age one....we only had him tested this past November. We are also in a severe exacerbation and homebound. Depending where you live both Quest and LabCorp have home blood draws. T.Anna

Thanks guys!! I ended up changing the folinic acid. He was on folinic acid + Deplin (l-methyfolat) and Dr. T didn't like the Deplin all along (prescribed by Dr.Hollander)...so I took that out a few weeks ago (LLM, when you mentioned a folate trap and I asked Dr T he said to go off it). Now we'll see what happens : ) Thanks as always, T.Anna

Thanks, spitting we can do by ourselves : ) I will go online and order. Thanks! T.Anna

Thanks LLM. You were right about NAC, so I will try lowering the Folinic. I have the Luvox in 25 mg dosage, so if it comes to that I can lower that too (I've been wondering about this). I would love to do genetic testing, I will do it with the next round of blood tests. Btw, when I mention the NAC being the culprit to the doctor he said we'll have to keep that in mind when we do genetic testing. Do you think it the B12 can be contributing at all? Thanks as always, T.Anna

I would have to agree with LLM. We did two HD IVIGs with DS 15 (in February and March) and although we saw some improvement it was not the reset button we are still searching for : ( T.Anna DS15

DS15, as I posted yesterday, has been up until 5:30am every night over the past week +. Last night I noticed that he was a little manic with his moods, going from very happy to crabby to very happy in short bursts. For example, I left the house and he was totally cool and told me to have a good time. His father comes in a few minutes later and he's in a bad mood. His father says he can borrow his laptop, he's in a good mood. But it really went back and forth. Thankfully, the bad moods are more of a sulky teen type attitude, but it has me wondering if it's because of a pill, especially the hyper happiness (nice to see a smile, but he was almost too happy). Currently we are on: Augmentin XR 4000 Valtrex 2000 Doxcycline 200mg Folinic Acid 5mg Ubiquibol 100mg B12 methylcobalamin - 1 pill cannot remember the dosage Luvox CR 100mg (SSRI) Yesterday I tried QueenMother's advice and woke him up earlier, but at 5:30 he was in my room telling me he cannot fall asleep (he fell asleep on the couch before 6am though). I was wondering if the increased hyper/moodyiness are connected to the insomnia. Anyone have experience with this? Sound like anything? He was much better after we stopped the NAC, so what other puzzle pieces are there? I find that the collective wisdom on this forum, is worth more than the advice of 100 PANDAS "experts" - if I had stuck with the lists feedback in Jaunary, maybe DS wouldn't have gotten so stuck : P Thanks as always, T.Anna DS15

It took a while, but I found out that Labcorp does provide home blood draws through Apex in the greater NY area. Apex: 631-753-3900 is the main Suffolk number. The NJ # is 856-672-0273 Yonkers: 914-963-3279 I found a human to talk to at LabCorp by looking them up on this great site: www.gethuman.com They have the numbers and directions on how to connect with a "human" representative in many hard to reach corporations. Just thought this could be helpful for those like me who have a kid who cant/wont leave the house....yet?! T.Anna DS15

We paid Walgreens infusion $10,738.00 for HD over two days and that included the nurse (we did it at home). Also wasn't covered, Walgreens is still fighting it on our behalf though (doubtful we'll get anywhere). We have Oxford/United Healthcare. T.Anna

A pediatric neurologist at Columbia Presbyterian in NY told his wife (a close friend) that he has only seen PANDAS in the zoo : ( T.Anna

Found it: A thread about plasmapheresis <<melanie 29 Dec 2012 Dr najjar di the pex. He was 17>>

Thanks so much QueenMother. He has had zero caffeine for months, but he does take methylcobalamin B12 at 3pm usually (when he wakes). I was thinking of lowering the Luvox (SSRI), since we don't think it's doing anything. I will pick up some GABA. I have been trying to wake him earlier, but in truth this 5:30am bedtime has restarted lately and ive been too busy at work to leave and wake him, i will try again this week. He wont leave the house, but he is OK out on our porch...it'll have to start tomorrow since it's raining today. We do suspect that he is COMT++ especially after the NAC trial, but haven't done genetic testing yet. Thanks again, T.Anna DS15

Ds15, seems to be doing better. He is no longer taking the NAC and he seems to be more predictable mood-wise. Unfortunately, he also won't/can't go to sleep before 5:30am even if he's dead tired. This happens both when he has his ipad and when there are no electronics at all. He doesn't like melatonin and even then was only taking them at 3, so they didn't help too much with what time he finally went to sleep. Is there anything you've used successfully that comes in a capsule? Because of his wacky schedule (morning starts at 2-3pm), he takes his probiotics at around 7-9pm. I can always add something then. Thoughts??? T.Anna DS15

Someone here has used Souhel Najjar at NYU, I believe. I think he did their child's Plasmapheresis. T.Anna

Thanks guys!! I'm making an appointment next week since I haven't been in an embarrassingly long time!! Probably should be eating better. Anyone else get the "you should get some rest" comment from well meaning friends/relatives?? So annoying. T.anna

I just called my GP, to see if I can get in to see him. This morning, I feel like my neck base is swollen on the right side (above my collar bone), it might all be in my head, but I'd like to know. My GP is now officially a GI, I should have said my stomach hurts, ugghhh. Waiting for them to call me back. T.Anna

I stopped the NAC last night. DS was on 2 pills a day and then I went to a spiffy Manhattan Psych and he doubled the NAC to 4 pills a day. Recently we raised the Augmentin. After the initial herxing on Monday night and Tuesday we began to see some glimmers of our son on Friday. But Friday night he cried himself to sleep and didn't want me to leave his side. Last night he startec freaking out for the littlest things and crying and yelling and then apologizing for all the stress he's caused us. Last night I decided to stop the NAC. It has only been 24/hrs but he seems so much better. He is hungry, talkative, still ticcing and stuck, but small glimmers. If the NAC was causing our increasing rages, could stopping it just last night already make a difference? Thanks, T.Anna DS15 dx 11/12 and stuck at home since 1/24/13.

Lately I've noticed that my hair is falling out, not in clumps, but shedding (like a cat). Any ideas for what supplements might help? I realize this may have to do with stress or lack of sleep. I don't think it's a thyroid issue, despite being fatigued and weight gain (haven't exercised since the fall). Any ideas? Bad enough I worry about DS 24/7 now I'm finding stray strands everywhere. Thanks in advance, T.Anna DS15 - dx 11/12 and has been stuck at home since 1/24/13.

I spoke with the Cunnigham lab. The sample does not need to be spun, but does need to be shipped the same day in the box with freezer pack. It cannot be drawn on a Friday. Here is hoping we can get it all done next week!! T.Anna

Thanks Rowingmom. Dr.T said he would order the tests. T.Anna