T_Anna

Mayzoo, thanks!! I will read the articles, sounds scary and interesting. I don't think either doctor would be ok with it....or DH, but I will see what the articles say, God knows the medical poisons we have already tried. Cream and Compounding pharmacy - what a great idea!! We already get LDN from skips, I'll do some research. Every night I use this CBD cream/Salve and that may be something to try on his feet. I sleep great and it's much milder than the CBD oil under the tongue. Thanks again, T.Anna

Thanks MomsLove. CBD - Yes, we are still using CBD - 20 drops x 2 a day. Gaia Passion Flower - We also added Gaia Passion Flower which definitely helps calm him before bed (he hadn't taken it Wednesday night and slept poorly)...I bought it at a regular health food store - similar to a small Whole Foods. Ativan - It didn't work for us. Tried it a few times. In fact it made DS more anxious/nervous. Min-Tran - A friend suggested Min-Tran which she said is great and she got it from her chiropractor, it looks like it's mostly Calcium 120 mg 10%, Iodine 200 mcg 135%, Magnesium 19 mg 4% in 4 pills. Aroma Sprays - I bought some aroma sprays from amazon, it has good reviews and our house could always smell better ; ) CocoaVia - He seems better when he eats their chocolate powder, but I think I want to try it in capsules so we can see what it does when dosed properly. UPDATE: Yesterday - He didn't text once yesterday and said his schedule is clearer and he stayed all day (school ends at 5:10) and went to finish his neuro psych evaluation from 6:45-8:45pm. Today - He got stuck in the bathroom fighting the OCD and Rituals and made it to school an hour late (progress, but not great). TIA, T. Anna DS16

Thanks searching_for_help.

A little bit of an update: DS16 did well cognitively with the neuro-psych evaluation. He was average in many areas and the school seemed able to accommodate him in a modified 11th grade. Today is day #2 of school and he generally had a good day reconnecting with friends and old teachers. He did get annoyed, because they switched around his classes and teachers from what they promised during orientation on Wednesday. And one of his issues is that he doesn't do well with change : / This morning when DH & I went to wake him up, we woke up OCD instead. DS16 describes it as having two people in his head. It took him two hours to shake it and he finally made it to school at 11:20. Is there an oil or aroma that I can use on DS16 to bring him out of this OCD land? I've read that people sometimes rub things on their kids' feet (might be a struggle but maybe it's at least an option, since he cannot comply and swallow pills in that state). When he is in one of these zones, he just curls up under the covers and tries to whisper to us, but mostly just cries. Sometimes he falls back asleep and then may wake up stronger and eventually stop crying and be better able to be himself. But we cannot get him to take pills when he is in these zones. TIA, T.Anna

Has anyone taken their child to a Shaman healing? Can you tell me about your experience? TIA, T.Anna

Any recommendations for a therapist in Bronx, Manhattan, Lower Westchester or Northern NJ? Anyone ever work with Dr. Sharon K. Farber, Ph.D. Psychotherapist 914-478-1924 Hastings-on-Hudson, NYShe's on Pandas network site. Thanks in advance, T.Anna

DS16 was very emotional before his mental break through (after 5 doses). Yes, it made him a bit manic. give it a few more days, T.Anna

Ok, so I just read an article in the New Yorker about a family's journey with rare disease. The father had written a blog post “Hunting Down My Son’s Killer” http://www.newyorker.com/magazine/2014/07/21/one-of-a-kind-2 In the article he mentione that their son found some relief from NAC and .... Highly Concentrated Cocoa Extract So I did some research and found this review on a product called CocoaVia (looks to be from the father in the article): Helps with glutathione-deficiency By Matt on October 9, 2013 Verified Purchase My son has an extremely rare genetic disorder which results in oxidative stress in his cells. His glutathione levels are insufficient to cope with this stress, and this is one of the compounds we have tried to raise them. His response was nothing short of miraculous. Developmentally, he had plateaued at six months old for five years. After a few weeks on this, he began reaching new milestones, such as feeding himself with a spoon and sitting up on his own. PharmaNAC produced improvements as well, but CocoaVia seems to be much more effective. He currently takes both. Anyone try this? Look into it at all?

Ds16 has the same issue. He will be up and at the breakfast table and just sit there while I'm waiting to take him to school. He has gotten better as he's started feeling better.

Yes. IVIG can def skew blood results. We have always been told to wait 6 weeks post IVIG to get blood work done. When we were doing more IVIGs we watched the symptoms to see if things were trending up or down. T.Anna

Ok, we added the Namenda back in on Wednesday and so far Thursday and Friday have been better. Hopefully, it will keep working. We also are only doing 1 Neurochondria a day (AM) and so far so good with that too. Wondering how long it will take to get urine test results : / T.Anna

Thanks for the feedback! Initially I started with 1 pill and that seemed fine so we worked up to 3 pills. He was feeling more energetic and wanted to ramp up too. What have I stopped? I stopped the Nameda. I asked him if he was feeling any more brain fog the past few days and he said definitely (after reviewing what that meant). So I added it back this morning and he seems in a much better place today with the 1 pill of supplement and the Namenda. What have I added: We also added ViraStop after tittering up the Neurochondria. Changes? Yes, summer school is ending and he has a final tomorrow. He has done well in his first foray back into school since December 2012. It was a bit grueling, every day from 8:45-3:00. So far he has a B- & B. IVIG? I have been thinking of doing another one, but haven't been in that desperate spot where I want to pull the trigger on it. OCD, anxiety and binge eating are our biggest issues. He had almost completely stopped eating a few weeks ago and we discovered that his thyroid was being over medicated. When we stopped thyroid treatment he seemed hungrier but still tortured by the thought if gaining weight. All through PANS he has had restrictive eating issues, it seems as though he took it a bit further. We did a follow up blood test to thoroughly test and see how his thyroid is doing after two+ weeks off the synthroid/thyroid support. Right now he is having his first session of a neuro psych evaluation. He is pushing himself to get back to school, but still has so much Anxiety. His school has agreed to keep him with his friends in Junior year, now everyone has to figure out how to create a schedule that works for him and his skills (thus the eval - school's idea, but I'm ok with it...now). All his friends are away and returning 8/12 so I'm hoping that when they return that will help him feel a little better too. I will check the ingredients and push the integrative neurologist to research his 23andMe further (today she asked me to send her the complete results). Also awaiting urine test results on more mito dysfunction possibilities. Thanks as always, T.Anna Ds16 - strep, Lyme, Bartonella, Coxsackie, HHV6, MycoP, etc. Exhibited severe OCD in fall 2012, became non functional in January 2013-April 2014. Became remarkably better after 5 doses of CBD Hemp oil. Before that had 8 IVIGs, PEX, steroids, CellCept. last IVIG was 3/17/14 and CellCept was stopped around the same time.

So DS16 is really anxious again, can it be too much folate? We just added a supplement for his suspected Mito dysfunction. We are using Neurochondria and it seems to have a lot of stuff inside. Here are the ingredients for Neurochondria: Three Capsules Contains: Vitamin B12 (as Methylcobalamin) 1.5 mg. Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt ) 300 mcg. Acetyl-L-Carnitine (as Acetyl-L-Carnitine Chloride) 300 mg. Benfotiamine* 250 mg Coenzyme Q10 150 mg. Glutathione (Reduced) 150 mg. Phosphatidylserine 150 mg. R-Lipoic Acid (as Sodium R-Lipoic Acid)** 120 mg. *Benfotiamine is a source of Thiamin. Other Ingredients: Hypromellose (derived from cellulose) capsule, Microcrystalline Cellulose, MagnesiumCitrateLaurate, Leucine, Silicon Dioxide. Here are his 23andMe results: MAO-A R297Rrs6323TT+/+ MTRR A66Grs1801394GG+/+ COMT V158Mrs4680AG+/- COMT H62Hrs4633CT+/- VDR Bsmrs1544410CT+/- VDR Taqrs731236AG+/- MTHFR C677Trs1801133AG+/- MTRR A664Ars1802059AG+/- CBS A360Ars1801181AG+/- What am I doing wrong? Thanks in advance, T.Anna

We just did an Organix test and are waiting for those results too. T.Anna

We have been using Namenda for about a month. I am going to update my charts now, but it might be part of the reason that DS16 is still struggling with OCD. He is going to summer school and going out and about, but lately he has been suffering from anorexia. Restrictive eating has always been a PANS symptom here, but lately he has lost a ton of weight (he's 5'56" and went from 107 in May to 91.8 last Wednesday) and he really had NO appetite. We found that his thyroid may have recovered some functionality and we were probably over medicating him with Synthroid + Thyroid Support. We stopped those last Sunday and he seems hungrier, but now feels awful after he eats. He thinks that eating is increasing his OCD. This morning was he$$, he ate dinner two nights in a row and was shaking when I dropped him off at school. We added the Namenda in June and maybe it's a key to the increased OCD?! The integrative neurologist wants him off anyway, so I think I'll pull it tonight and see what happens. Off to update my chart and look for a trend. T.Anna

We were on mino for a long time, since it passes the BBB it seemed like the right choice, but it did not seem to help. I'm glad to report that he has eaten every day this weekend (only one meal, but it's a start). So maybe it was the thyroid condition (retesting next Monday), or the Ceftin. Started supplementing the mito issue so hoping this week brings more improvements. Thanks as always T.anna

Thanks! We are currently with Dr.C in Mt.Kisco and happy with them. Someone recommended this doctor, but after some feedback and research I'll stick with Dr.C in the meantime. One complaint was that this doctor's office doesn't return calls, I have very little patients left for that style of doctor. If only doctors knew how much phone etiquette and prompt response would help their business : / T.Anna

Maybe Ceftin will be the right abx for us, we've tried so many. We are also on a ton of supplements, but every time I think of scaling things down I remember why we added it : / T.Anna

Ophelia, have you ever checked for Mitochondrial Dysfunction? The symptoms sound very similar and it explains why you are so sensitive to medications. Our integrative neurologist recommended 1-3 of these a day: Neurochondria http://www.amazon.com/gp/product/B001BA9EPK/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1 T.Anna

Integrative neurologist just recommended ViraStop for DS16 who has many virus issues (HHV6 & Coxsackie). We are also doing Valtrex and Reishe. We just doubled the Reishe and hope to titer off Valtrex in a few months. T.Anna

thanks Searching for Help! Today he is grilling and has made lists etc. I am just hoping he will be content. He seems a bit more mellow so maybe the Thyroid numbers were impacting him. Thanks, T.Anna

FrikFrak Just deleted a ton of stuff. Thanks,

Anyone have experience with this doctor? We are currently seeing Dr. Daniel Cameron, but this doctor was recommended. T.Anna

Took DS16 to LLMD yesterday. Switched him from rifampin/Azith to Ceftin/Azith. She said that CEFTIN was the closest thing to IV abx(??) DS weighed almost 92 lbs (5'6") and for the first time admitted that OCD was the real reason he doesn't eat (and admitted "I realize I have an eating disorder, I just don't want to be fat."). Sunday we learned that his thyroid is over active (was under active since the fall) so we stopped the synthroid and thyroid supplement. His doctors believe that was impacting his appetite too) The LLMD said Lyme can affect thyroid numbers too. - If he is not eating because of OCD+thyroid issues, will treating the Bartonella help with OCD (since stopping the thyroid meds he seems hungrier BUT more tortured by it)? - Yesterday, was the first time DS16 shared with me how his OCD works. What happened was that he decided to buy an ice cream at the school cafeteria (summer school) and that was going to be his 1 thing to eat yesterday. He was really upset/frustrated that the ice cream was so tiny and now he "used up" what he was going to eat : ( - Is that a good sign, that he's sharing details of his torturous OCD mind? - LLMD said to stop the Augmentin, that Ceftin covers the same thing. Should I keep it on (didn't give this morning or last night), just for the anti inflammatory properties (to help him fight the OCD)? He wont take Advil. The LLMD handled the eating issue well and DS ate dinner (after crying to fight the OCD). This morning DS is angry that he ate last night and also upset that he's upset about eating last night. Any responses appreciated, already got a text at work that from him "It's all back!" He's in summer school since he was homebound with severe OCD since January 2013-April 2014. Thanks all, T.Anna

Anyone ever try an appetite enhanser? Know anything about this one? Apetamin Cyproheptadine Lysine & Vitamins Syrup -200ml