T_Anna

Thanks. T.Anna

In our endless quest to help get DS15 functional again, we have tried many, many, many different pills. Some we can still use (I have started taking his D3 vitamins, my daughter is taking Florastor probiotic). But there are many that we will probably never use again. I have several free Luvox 100mgCR bottles, Delpin, B12, NAC, etc. I have to assume that I'm not alone, what do you do with the "failed" pills? T.Anna

DS15 has been on Luvox at doses of 25mg to 100 mg CR (continued release) since December 26, 2012. It never seemed to bring any improvement in anxiety or OCD. I'm titering him off the Luvox now (down to 75 mg and tonight I'll do 50mg for 5 days and then 25 mg). We just added Biaxin (Wednesday), started cycline down Luvox from 100CR to 75 with a half life. He is doing a tiny bit better since Saturday. For example, he avoided going to the bathromm till 1am when he usually always goes at 5-6 pm and stays 4-5 hours. It didn't help with duration, but he was able to stay out (consciously) for a while. Are there many out there who are successful with ZERO psych meds? I have a bottle of Lexapro at home, but my instinct is to first see what DS is like on abx, supplements only. I have a feeling that he will be roughly the same. Can the anxiety be addressed with just the proper treatment of infections and needed supplements? I'm all for solving OCD and anxiety will pills of any kind, but I just stopped believing that will work. I see more changes when we switch abx, anti-virals, etc. T.Anna DS15 - triggers Strep, Myco, Coxsackie and EBV. Currently on Augmentin, Biaxin, B12, folinic, Luvox 75mg, D2 (50,000/week), Ubiquinol, Gaba, probiotics,

According to Dr. Schulman, she said she sees improvements start at 10 weeks post IVIG. Unfortunately, that was not our experience. DS15 had two IVIGS, 2/14 & 3/14 and any slight improvement was after the IVIG and ws minimal at best. We discovered he still has an issue with Myco (and at the time alos Coxsackie) so that explains our poor results. T.Anna

Thanks! Had a good day (fingers crossed). For the first time said "when I'm cured" rather than this will never end. Definitely think it was from the self harming as his eyes did/do look slightly black and blue. I didn't give him Benadryl last night as it didn't seem to help. Might try tonight. Hope this continues. Thanks again, T.Anna

JoyBop, I will try 2. I am sensitive to meds so I gave him one, but two is prob right (according to pkg since he is adult size). His buddy came over today and woke him up at noon, so maybe he'll also be more tired tonight?! His face looks much better today, still puffy, but it looks like it's going down so I'm assuming it was the head banging : ( it seems to hurt or he's just feeling better, since he hasn't done it as much yesterday and lat night. I have appt on Monday with doctor in case it persists, but it's looking better. He may also feel better since he also ate some lunch (prob because his friend was eating with us). There are happy noises coming from the kids, so maybe things are improving. He told his friend that the puffiness is because of a new med side effect. I thought that was savvy. Since he admitted to his father and grandfather that it may be from hitting his head. T.Anna

There is some discoloration near the eyes. He is about 5'6" and 120 lbs, but I only gave him 1 Benadryl. Not sure what else to try. He literally cannot fall asleep until 6 or 7am all week : ( T.Anna

I tried Benadryl and that didn't seem to help. He is not on steroids right now. I have lowered his Luvox from 100mg CR to 75mg. Besides adding Biaxin and the d2. Thanks, T.Anna

DS's face is swollen. Especially his forehead and near his eyes. Can that be from when he hit his head against the wall and with his hands all week? He stopped, but not sure if that's because it hurts or he no longer has the need. I looked up the pills and none seem to have face swelling as a side effect. Thanks as always, T.Anna

Tried Benedryl last night and it helped. He only took it at 4am, but was much more relaxed. Spoke to Dr.T this morning to go over latest labs. EAMom, you were on the money! He has elevated Mycoplasma and very low vitamin D (14). We have dropped Doxcycline and are adding Biaxin as well as vitamin D (prescrition1 x week for 8 weeks). I am also in the process of looking into Lyme and possibly the NYU neuroligist although it looks like no one has openings until July. Hope this helps. I decided to titer him off the Luvox and wait before trying an SSRI again, Oh and I asked about pursuing PEX, but we are still waiting to see the Moleculera results. T.Anna

Has anyone gottem their results from Moleculera labs yet (since the April 22 opening)? T.Anna

Airial95, I completely agree regarding the longer things are improving the harder it is to see a slide. Just exasperated with the up and downs. LLM, I'm notorious for falling asleep with each kid when I say good night and chat with them. But DS15 will only sleep on the couch and it definitely gets cramped. 4Nikki, I totally feel your pain!!!!! Thanks everyone. It does mean a lot that so many are veterans and have survived the dark times. T.Anna

Some other drs Dr.Leckman in New Haven, Yale

My last sleep deprived post today, I promise!! I went to see Dr. Hollander today (a psychiatrist). I wanted to pick his brain regarding whether the Luvox could be causing all the havoc that we have seen lately with DS15. He didnt think so because we arent even at "treatment dose" yet (we're at 100mg CR). I asked whether he thought DS would benefit from trying IVIG again or doing PEX. He said that based on the fact that the infections (and co-infections) are going down across the board, the reason DS is stuck is because he is not doing enough therapy (not because of infections/inflammation) and we should consider (very seriously) sending him to Rogers in Wisconsin. He does not believe that IVIG or PEX would help since "the immune system is covered" What I learned on this forum is that getting the infections/coinfections under control is what makes the immune modulation therapies more effective. I still believe that part of PANS/PANDAS is that the OCD/ticcing is minimized when the patient is more "cured" through combination antibiotics/anti-virals. When I mentioned trying to see the team that helped Susannah Cahalan at NYU, he responded that he was just approved with his own test that will show anti NMDA receptors, dopamine carriers and more. He said that it should be ready in a week or so and he will test DS too (free, part of his study). I am still trying to get through the door at NYU. We are still waiting on the Cunnigham results too. So my question is am I delusional in thinking we can still cure this? Am I just in a bad place because a psych doctor pushed pysh meds and therapy rather than IVIG/PEX? It really seems as though anyone who did PEX saw some sort of result even if the flare returned after a while. DS could really use a break, even if it will only make going to see an LLMD and get therapy (at USF) more like a reality. Thoughts? T.Anna DS15

Ok, I think I'm freaked a bit about the Rispedral. DS is already on Luvox (100mg) and I want to get him off that, so switching may work in the short run if it helps with ANYTHING going on. I will search again, but I thought there were some who thought Rispedral helped. T.Anna

Thanks everyone! I think I may try the Benadryl, problem is that DS is very inquisitive about what pills he's taking, so he'll say "I dont have allergies" so it might not work . I posted a separate post, I would love to take him off Luvox, but need to see if I should taper or switch with Lexapro. Truth is that I'd have to switch something. T.Anna DS15

Just came back from a meeting with psych doctor who suggested we change from Luvox (100mg) to Lexipro (10mg) and Rispedral .25mg. Anyone have experience with this? Waiting to hear PANDAS dr's opinion before we start. T.Anna Ds15

DS15 looked like he was turning a corner a little over a week ago. We ran blood test (strep went down, coxsackie down). We sent out a sample to Moleculera (havent heard anyhting). He was talkative, cleaner, etc. This week has been terrible. Insomnia - He cannot fall asleep at all (even after taking out the folinic acid). Head hitting - he hits his head at night, and when he is desperate to go to sleep in the morning. He can only calm down when I sit with him at night and even that doesn't seem to help the head hitting anymore. His appetite is bad and I'm losing my mind!!! He hasn't left the house since February 11. Sorry about the vent, but I'm starting to lose faith that things will get better! I am up all hours of the night checking on him and then I need to get myself up and dressed to get others to school and myself to work. T.Anna

JoyBop, you're patient address that your doctor enters into their system needs to be an ok'd state. You also will prob not receive any insurance coverage. T.Anna

DS15 is being treated for yeast. How much Diflucan are you giving? I read that soemtimes it's alternated with Nystatin (?). What other treatments have been successful? Thanks, T.Anna

Wow!! Someone just recommended I contact him last night regarding DS. He helped her son with ticcing/PANDAS. Good to know. T.Anna

DS15's vitamin D has dropped significantly to 14.7 (we stopped supplementing because we thought he had a bad reaction). I heard that D3 was better than D and that I should look at 1000 or 2000 (one friend said only Solgar or Blue Bonnet brands - no idea why). So my questions: 1.D3 or D? 2.How much? 3. Morning or Night? Thanks as always, T.Anna

Thanks SFMom. Before DS15 sank into avoidance in January. He would go to the bathroom every night before he showered. Whether he had gone earlier or not. After trying many different ways to relieve constipation, we noticed that it was a set pattern of Wednesday nights (he went in 20 minutes ago) and Saturday evenings. He also stays in there 3-5 hours each time. At his worst he was in there in December for 19 hours, and the therapist came and got him out using threats...that was a short lived success. He was a bit better temporarily after the IVIGs, but nothing else improved : ( Do most people up the Diflucan (we are at 200 mg/day) or add something else? I don't want to ignore the possibility of yeast, but he also seems to eat more on Wednesday nights and Friday/Saturday in anticipation of going to the bathroom. We have assumed it is very severe OCD, the only routine we still have since the January avoidance started. But we have been wrong before! Is there another way to find out if it's yeast or parasites? How do you treat parasites? Thanks as always, T.Anna

Maybe ill try tomorrow. I was giving Magnesium, then we tried fiber and even laxatives. Nothing helped him go to the bathroom...just made him uncomfortable and have belly aches between bathroom days : / I've never seen anyone with such control. On the upside, he has been sooo nice to his sister this afternoon. Prepping her for her baseball game, going over her positions, throwing strategies etc. Maybe the head hitting is just the adjustment from going off the folinic acid?? Thanks so much!! This forum has been a life saver. T.Anna

Ordered my kit from 23andme today. He was awake earlier today. But while we were hanging out he was annoyed with something that wasn't working on the ipad and first smacked the ipad and then himself. When I looked at him he said "don't judge me!"....I hate this : ( T.Anna