T_Anna

So it seems the reason that none of the meds and CBT (4x a week) helped was because his numbers have gone UP. They titers are higher now then when he was first diagnosed on November 18!! Waiting to get the Clindomycin and refampin (sp?) Hopefully, this will help. Poor DS has been having a rotten few months. Now we see that all the numbers have been going up the while time and none if the meds have helped. T.Anna DS 14.5

Oops, sent too quickly. I meant to say that the Saving Sammy Facebook has a lot of followers too. Not sure how to go about this, but there are many readers here, why not organize some sort of campaign? Anyone have experience with this or know anyone who can tell us how to do this? T.Anna DS 14.5

Maybe it's time to start a grass roots email campaign or petition. Saving Sammy has a l

Many of the posts have positive mentions of the USF Rothman Center. I am considering looking into taking DS 14.5 there, if things do not improve over the next few weeks. I thought is would be helpful for myself and others out there also on the fence to read a focused thread on USF experiences. If you can tell your personal story and answer questions that we may have had before going. 1. How long were you there? 2. Where did you stay? 3. Are you with your child during therapies? 4. Is it a full day (9am to 5pm)? 5. Was there therapy over the weekend? 6. How did your child feel about the process? 7. Did you meet with Dr. Storch? Dr. Murphy? 8. Costs at USF? 93. Would you recommend doing this? Thanks in advance, T.Anna DS 14.5

Thanks for posting. I sent it to a friend who is a scientist at a lab and it was the first time she believed in the connection. T.Anna DS 14.5

Thanks. The University of South Florida Rothman Center sounds like an amazing place. Is there a central thread with kids'/parents' experiences there? Tonight I went to talk to a friend's father who is an adult psychologist with a lot of OCD experience. He had an interesting observation: he said we are treating the body (PANS) and the OCD obsessions/rituals, but we were not dealing with the human himself. That it seemed that no one was delving into how DS felt (not in relation to OCD). His view was that these conditions are usually a combination of many components and that DS seems extremely burdened by guilt about the time/energy DH and I are investing. Also DS has said in the past that he feels that OCD/PANDAS is a punishment for something he has done, and it doesn't seem as through the why was ever delved into. I think he may be on to something. DS will go talk to him Monday and I'm curious to see how that works. I'm just really burnt out with the intensive CBT we've been doing with almost no results. Anyone have success when changing gears or adding an old school therapist to the mix? Thanks again, T.Anna DS 14.5

Thanks. I don't mind traveling, but why consult with four? Do they all treat different issues or have different expertise? Who would you start with? Honestly, it seems crazy that in all of NY metro area there are zero PANS specialists. Sorry about the direct questions, just loosing my sanity. Thanks again, T.Anna

My DS (14.5) was diagnosed in November 2012 with PANDAS and OCD. We are working with Dr. T for the PANDAS and seeing a CBT therapist for the OCD. Lately, I have been getting frustrated with the haphazard mishmash of treatment. Unfortunately, Dr. T has been going through a family crisis and has been impossible to reach. The CBT does not seem to be helping anymore. He is still stuck in the bathroom for 1-3 hours a night and his showers are reliably 45 minutes, which means that he doesn't get to bed until 2-3am (especially since we are at the therapist 3 times a week until 9ish). He is currently not on ANY meds beside the Luvox (motrin and culturelle). We ran new blood tests that are currently sitting at Dr.T's office and that I am begging to have sent so I can at least compare them with tests run 2 months ago. We are desperate to help DS quickly. As you know it is so hard to watch him miss school so often (especially since he loves going), but as the week progresses he has a harder and harder time fighting the accumulating sleep deprivation. Questions: 1. What PANDAS specialists are in the greater NYC area (besides Dr. T)? 2. What centers for CBT have people used and loved (I'm willing to travel with him and do a intensive program, if it works)? 3. Any other suggestions? My lay diagnosis is that DS (who wrestles) is being exposed to many illnesses (everyone seems to be sick) and should be on some prophylactic abx at least. The CBT therapist, who is well versed in PANDAS, thinks it's that DS is a perfectionist and obstinate. This is dragging on and it's not fair to DS if there is more/different that we can try. Thanks for reading. T.Anna DS 14.5

What is LLMD??

Just found a site that says that taking Luvox with caffeine can heighten the effect of the caffeine (not what we needed ). From the site http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Luvox "Mixing caffeine and Luvox (fluvoxamine) can be intensely unpleasant. Your one cup of joe will suddenly become like five cups, and the effects will last six times as long. The results indicate that intake of caffeine during fluvoxamine treatment may lead to caffeine intoxication. —A fluvoxamine-caffeine interaction study. This effect was confirmed by pharmacokinetic geek lab tests And it doesn’t matter if you’re a normal or poor metabolizer of CYP1A2, or if you’re taking just 10mg of fluvoxamine..." Well, at least this is confirmed, just cost us another day of school though T.Anna DS - 14.5 dx 11/17/12

Yes, he was checked for Lyme (not a specialized test, but all was negative). I think the hardest part is watching the days pass with no change and no regular "living" for DS. T. Anna DS14.5

Thanks. Great idea, I just ordered some from Amazon. Now if I could only figure out how to get him out of the bathroom : / T.Anna

Ok, so last night didn't go exceptionally well. DS got stuck with the OCD in the bathroom all night. Does anyone have any experience with whether caffeine makes OCD worse? DS (14.5) loves Earl Gray tea and had a cup at 7pm and 10:30pm. I know it probably doesn't help, but has anyone cut out caffeine and seen improvement? TIA, T.Anna

Ok, going to try to get this right: She said that sometimes vitamin D can give patients a nervous energy. She doesn't want DS more edgy. He needs more mental energy right now. She also felt that we could put it back up after we saw the blood test results. T.Anna

Just found out that the The American Association of Pediatrics' annual convention (October) will feature a daily discussion about controversies...including PANDAS. http://www.aapexperience.org/ "Join in the debate about the latest controversies in pediatrics at our new daily point-counterpoint sessions focusing on formula feeding to newborns, ADHD, cardiac screening for sports, and the PANDAS hypothesis." Maybe this will further help our kids. T.Anna DS 14.5 (dx November 2012)

We just came back from the therapist. She believes that DS is suffering from depression in addition to/as a result of tPANDAS and OCD. She thinks his reaction today (and DS agreed) was that he was angry at himself for not getting to school and projecting his anger towards his parents. She wants to give the Luvox more time to work as DS doesn't have enough energy to fight the OCD thoughts. She also will talk to Dr.T about continuing the Biaxin and possibly adding Augmentin again. She also said to cut back on theVitamin D (from 1000 to 400). Hopefully, we'll get the blood results next week and figure out the next plan of action. Thanks for listening. T.Anna DS 14.5

He's usually a pro with all needles. Although who knows what is going through his head or if a new rule cropped up. . The only stress today is that he didn't make it to school. This is a real personality departure. This is really disappointing as he hasn't had any crying episodes since Friday! T.Anna DS (14.5)

DS has been on Luvox for 5 days and today was unable to get out of bed. He won't speak and his eyes are completely dialated. Monday he complained that when he tried to do something that was associated with rituals/OCD he had palpitations. We need to go for a blood test and he refuses to get up or tell us what is going on. He told us to get out and that he'll get up, but 20 minutes later he is still in bed and won't speak. This is completely new. He wasn't like this 4 hours ago, or for that matter, ever before. He is also taking: Biaxin Valtrex Advil Vitamin D Vitamin C Any advice?? T.Anna

Good luck. I just finished reading "Saving Sammy" today and it's helped me understand the need to be super patient. Good luck, Dr. T has an amazing reputation and we are trusting him with our DS (14.5) as well. As for other parents, those that are worthwhile will be patient and those who aren't may not be worth your time. You can always email the Saving Sammy Today Show clip on YouTube if you think a little education would help. T.Anna

Thanks for all the response. We are working with Dr.T and a therapist who works with him so I am hopeful that the recommendation will work. We started tonight with 25mg and we are hoping it will help. He is physically looking better with the antivirals and abx, but he is afraid to do ANYTHING because it will trigger OCD and he thinks he'll get stuck. He cries whenever anyone suggests he do anything that would be "normal" like shower or go to the bathroom. He has really just stopped functioning besides eating. Anything else sends him into a sad/crying zone. The experiences here have me a but concerned, but we don't feel we have many options and he's begging for something to work. I'll keep you posted. The saddest part is that we were finally seeing some progress last week. T.Anna DS 14.5 (dx in November 2012)

Anyone have good experience with Luvox? T.Anna

We are going to try Luvox for DS (14.5) who is doing a but better on day 2 of abx +valtrex. What should I expect with Luvox? What time is the best to give it? Tami

Finally got in touch with the doctor this morning and he agrees that it sounds as though DS is battling another (or remaining)infection. The doctor placed him back on Biaxin and Valtrex. He would like to see if this help DS in the next few days, but also suggested we may consider Luvox (the therapist also think sthis might be worthwhile). In the meanwhile we are waiting for a blood work up order to see what is really going on PANDAS wise with DS. THe doctor mentioned that he might be a good candidate for IVIG. What is involved with IVIG? Is it a hospital stay, outpatient? It seems that many people on this board have done it several times with their kids with mixed results. Thanks again, T.Anna DS 14.5

Thanks. He's crying now, I tried to reassure him that we'll work on getting answers tomorrow, but he's just suffering : ( I'll keep you posted. Thanks again, all this feedback really does help and give us hope that things will improve. T.Anna

Thanks. He was fine after he got out around noon, so I put off ERs, but now I'm pushing to get hold of Dr tomorrow. He is in the bathroom now and already upset and melting down. Watching and waiting is really difficult. Thanks for the support. T.Anna