T_Anna

Ok. He was on just 1 pill for over a week so I figured it was ok, but I'll wait, we have appt on Monday. Thanks, T.Anna

DS 14 had been in a non functional flare since mid-December. He hasn't been in school since mid January and we are currently on Doxycycline, Azithromycin and steroid taper. I thought things were looking better last week as he would answer the phone and seemed to have a better attitude. Thursday night I skipped them1 (25g) Luvox SSRI. Friday morning he was fine, but Friday night he was restless, and manic. Today he was really (uncharacteristically) very rude to his father and I. Is that what getting activated in Luvox is like? Restless, manic, rude? Is that maybe the steroids? I'm not sure if I should give him another Luvox tonight or not. Opinions? T.Anna

DS 14 had been in a non functional flare since mid-December. He hasn't been in school since mid January and we are currently on Doxycycline, Azithromycin and steroid taper. I thought things were looking better last week as he would answer the phone and seemed to have a better attitude. Thursday night I skipped them1 (25g) Luvox SSRI. Friday morning he was fine, but Friday night he was restless, and manic. Today he was really (uncharacteristically) very rude to his father and I. Is that what getting activated in Luvox is like? Restless, manic, rude? Is that maybe the steroids? I'm not sure if I should give him another Luvox tonight or not. Opinions? T.Anna

(steroids and ibuprofen cannot be taken together BTW). Just saw this, what are side effects. I have been giving DS ibuprofen and steroid taper?! Yikes! T.Anna

Oh, and we're also still taking 25 mg of Luvox. I will call dr about dropping that pill, don't think it did an ounce of good, T.Anna

Wow! Thanks for this warning! DS14 LOVES Earl Grey tea, he drinks at least 2-3 cups a day (caffeine free). I had no idea that there was a danger and I found an article that describes heart racing, headaches, and stomach cramps-all things DS has been complaining about lately, Yikes! Any additional information is welcome! T.Anna

I am so sorry that you and DS need to go through this. What is TBI? Keeping you in my thoughts. T.Anna

I would recommend buying rapid strep test on Amazon. This way you can test you DD on day 4 at home. We have gotten strep twice while on 3 diff abx. T.Anna

Thanks. Yes, I've wanted to tests him for gene mutations. He does also test positive for mycoplasma and coxsackie (sp?). He tesred negative for Lyme on the various "dtandard tests. His second blood test had shown that mycoplasma went down with all the meds, but strep had actually gone up. I'm also curious since he has contracted a fungus from wrestling, I would test him for candida too (in case it was from the meds). But I think that it will be a long time before he re-enters society and can go get another blood test at the lab, I am, probably unwisely, putting a lot if hope in the IVIG to help kick start his body and then the other pieces (meds, CBT) will have more if an effect???!

THANKS for all the responses! He finally got out if the bathroom at 3:30am and was clingy & needy. It's crazy how this "thing" grabs hold of them and then once it's done it's like it never happened : / This morning my younger son wasn't looking great. He's on his 10th day of amox for strep, but his breath smelled like strep (I know that sounds crazy) and sure enough it was positive, so he was put on a zpack and I realized that is the only abx we haven't tried. The frantic emails I sent last night were the right amount of pestering. The IVIG papers were done today!! DS14 also has tested positive for strep today, we added zpack to the doxycycline (he finished rifampin and Clindomycin yesterday). He just started the steroid taper on Saturday and it seems to helping the mood and general attitude (although he's still avoiding most if them). Thanks for the sedative suggestion. He wouldn't take anything last night during the crisis, we have Ativan and I even tried Advil pm (has bayone given that to a kid ever?) or Benadryl, but he was against anything "not prescribed" for PANDAS. What DS14 is taking: Doxcyclomin Zpack Advil Culturelle Florastor Prednisone 40mg Luvox 25 mg - which I would love to eliminate, but scared to pull it out without a medial blessing (no idea why). He's not on any vitamins right now since I was convinced they were messing with him. Now I have a million vitamin bottles and no idea what to add (if anything). Things were going ok until last night and I was even happy to see him go and try to go to the bathroom/shower, but it all went down the drain rather quickly last night. My philosophy is that he caught strep from his brother and that it took hold of him last night. Hoping that having the zpack will help with that and maybe tomorrow will improve more. We should probably do another blood test, but he still hasn't left the house in 3 weeks so that may be tough to do. Thanks for the hospital pointers. I have a friend who heads the ped ER downs town NYC so I guess I should ask her and my pediatrician about how I can contact them if we need to go that route. Thanks again. T.Anna

DS 14 is stuck in the bathroom crying hysterically. He's stuck trying to avoid the OCD. He has been there for 8 hours. The last hour he has been crying like crazy. He was in total avoidance of EVERYTHING the past month (hardly going to the bathroom, no showering, teeth brushing). The past week he has been in a much better mood, we believe due to steroids (we went from a burst to a taper). And today he thought of showering after the bathroom and then this crying started. We signed off on doing IVIG 2.5 weeks ago and we still don't have the papers signed and ready to go. What do you do with a child stuck in the bathroom or the house? Thank goodness our other two kids haven't woken up and our neighbors (we live in an apartment) haven't called the police, but this not a way to live. Would there be any reason to go to a hospital? I know you hear crazy stories like in Boston, but at least we could run more bloods, etc. Sorry, feeling like we lost out way. T.Anna DS 14

We first tried a steroid burst in late November. We did it while on Augmentin,biaxin and valtrex. It did nothing. We just tried it again last Saturday and it seemed to help (we are on Doxycycline now). Day 7 (2 days after last dose), things started slipping again. Now DS (14.5) is on a 4 week taper, today is day 3 and so far things seem to be improving a teeny tiny bit each day. T.Anna

Wow!! I am so happy for you. Ok and yes and a bit jealous too. But you've given me hope too. Hugs! T.Anna DS 14.5

Spoke to the doctor and he said yes, but before 5pm. Did make DS a but hyper and giddy, but that is way better than crying. T.Anna

In following the advice on this list, and Dr.T's recommendation, DS will can start a steroid taper today or tomorrow. We had done a steroid burst last week withDoxycycline and it seemed that DS was in much better spirits (still not functioning or leaving the house, but it looked hopeful). My problem, mornings are really tough for DS. Last week we would wake him, get him to eat some bread and take the steroid. Now it's 1 pm and he is stuck in the bathroom crying and I'm realizing the steroid was prob helping more than the Doxycycline and I would like to add the taper today. Is it bad to give him steroids at 1 or 2pm if it says give in the morning? I wrote the question to the doctor, but maybe someone here has experience with steroids and why mornings are recommended. Thanks in advance, T.Anna DS 14.5

LLM, you guys have a very valid point, that maybe there was a abx in the mix that was helping and needed more time. I came home from work and DS was very animated. He had taken his probiotics on time and was in a great mood. It's unclear if it's as a result of the steroid burst (today was Day 5) or the Doxycycline. The Doxycycline seemed to be helping a bit last week when DS took a shower (first in 12 days at that point) and went out the next day to visit a friend and even debated staying overnight (crazy since he hadn't slept in his own bed in 2 weeks). Unfortunately, Friday he had caught strep from his siblings (grandmother too) and we were back to a regression. Spoke to Dr.T and we will continue the Doxycycline another 10 days. I also have a steroid taper that I can add if I see it wasn't the Doxycycline. In the meantime we will also work on the paperwork for IVIG and decide over weekend whether we push it off or pursue. We have hopes that the Doxycycline may help. Dr.T also suggested another blood test and I would ask to add the thyroid and other tests mentioned. We had tried Biaxin and Valtrex and they didn't improve anything (we weren't in such an avoidance place either), but when he went off he would regress. What does that mean? As always, THANKS! Don't know what I'd do without all your wise suggestions and insight. T.Anna DS 14.6 - who wants to go to the family superbowl party, will be interesting if that happens : /

I have given my non PANDAS kid Swiss Kriss, also in a pill and it's herbal...it definitely works. Used to give him only 1 pill, it was plenty (he's a big 12 year old). T.Anna

Well, I became a pest and will talk to the Dr. this evening. How do you find out about MTHFR? Is that also a blood test? It's disturbing that this tailspin coincided when we started to treat the OCD and then PANDAS. I do think that it probably was impacted by the Flu vaccine last year and then again in October (before we knew anything about PANDAS). I'm worried now that the IVIG will be a waste of time/money, what will I do if that fails? How will I know? Last blood test only showed higher #s for Strep, does that mean Myco is still hanging around even if numbers go down? I sound like a lunatic to people when they hear that I'm allowing him to stay at home and not go to school/appointments...how can I explain that when we mention taking a shower, he starts to cry for 30-45 minutes? Thanks again. T.Anna DS14.5

DS (14.5) was diagnosed November 28, 2012. He probably had PANDAS for at least a year if not many years. He was always anxious and rigid in his likes/dislikes. In late October we started working with a CBT specialist a few times a week. At the time DS was praying so much that he would miss classes, showering for 1-2 hours and generally take forever to get anywhere. Working with the CBT therapist helped limit the praying and shortened the shower, but then going to the bathroom got so long that a few times he got stuck in OCD and stayed in the bathroom 8, 10 and even 19 hours. We met with Dr. Trifiletti and DS tested positive for Mycoplasma, CoxSackie and Strep. He has been on Augmentin, Valtrex, Biaxin, Predisone, Clindomycin, Doxycyclin.Rifampin. When he goes off the meds he tends to spiral further down, but the meds have not really improved anything. According to his blood work, the Strep kept rising through all the antibiotics. Now he doesn't do ANY OCD stuff. He just lays on the couch, sleeps & sometimes cries. He hasn't been to school in 3 weeks and we have stopped the CBT. Last week Dr. T said that we should try IVIG. We agreed to pay out of pocket and were supposed to get it done this week. DS caught Strep from his siblings on Friday and is being treated for it, although he still complains that his throat hurts. It's ironic since Thursday was the first time he showered and left the house in 2 weeks : (. My question, is it normal to feel like you're being hug out to dry while you wait for the drs. to call you back? Is there hope that DS will come out of this? He was so much better before we started CBT or treating the PANDAS, is it just a coincidence that my house of cards started to tumble all at once? Any thoughts, advice, kick in the ___ is appreciated. T.Anna DS 14.5

Wow! Thanks for sharing. T.Anna

We did Valtrex and DS didn't seem to have side effects. It did seem to lower the cox sackie numbers. T.Anna

Dedee, you were on the mark . Dr T prescribed another 10 days of Clindomycin and rifampin (we just finished this dose 4 days ago)....he said sometimes you need to take it longer. Last night he seemed a little better, so maybe the two abx together were working. Dr. T wants us to start a steroid burst today since we are still waiting for IVIG. T.Anna

DS just tested positive with rapid strep test. I have an appointment with the pediatrician for him and my daughter (she also tested positive). If I cannot get him to the doctor what abx should I ask for? He is currently taking Doxycycline and it seemed to improve his avoidance. Tomorrow we were supposed to start 5 days of steroids. Should I push that off?? I will ask the doctor these questions, but I find I learn so much more from real-life experiences here. TIA, T.Anna DS 14.5

Thanks. Went to see highly recommended psychiatrist in Manhattan (psychiatrist and pediatrician) and I was surprised with how ignorant he was regarding PANDAS. I really need a psych who has treated PANDAS kids before. I left him the Saving Sammy book, but as smart as experienced as he seems, I have no patience for being any ones test patient. I will look into how far Redbank is, at this point I'll travel 45 min.- 1 hour if it's not every week. He has no joint pains and the lethargy may just be how his body copes with meds/illness. He did test positive for mycolplasma so that may explain why it was working at all or why he just tested positive with a rapid strep test. T.Anna

Just did a rapid strep test on his sister who was complaining that her stomach was hurting. She tested positive. Now need him to wake up so I can take him to pediatrician. T.anna