T_Anna

Our doctor is working on having DS admitted to the hospital for PEX (maybe Monday). DS is still in bad shape and as I posted lately, now added a lot of ticcing (choreoform mvmt) to the overall picture. I would love to prepare him for the hospitalization or PEX, but anytime I mention PANDAS or even that he wont be sick forever, he flips out. He cannot bare to hear anything relating to treatment/doctors etc. Anyone else have experience with a teen in a flare that couldn't talk about his illness (besides "i wish i were dead" or "it will kill me eventually")? Last night he said he wouldn't 'ever' be better. I said don't say ever... and he cut me off telling me NEVER to talk about these things : ( Getting him out the last time to see the doctor was tough, this time who knows. Last night was the first time that he couldn't sleep and he actually ASKED for Benadryl or something that would help. I gave him two and he finally fell asleep, but then woke around 7:30am, upset, and came into our bed and went back to sleep, solidly till now. Since he has only slept on the couch and ottoman for 6 months, I'm sure my bed is more comfortable : / Asking for meds was a first and a good sign, but I'm so tired of looking for tiny glimmers that something is working. He is still so non functional and stuck in severe OCD. T.Anna DS15

He had been taken off Diflucan three+ weeks ago, so I added it back as a test to see if it helps. What is interesting is that I haven't seen the finger tic since the choreaform movements got worse. T.Anna

Yes, he's still on abx. Die off would definitely be a better reason than yeast! Thanks for the hope. T.Anna

New York university hospital New York, NY

Ophelia22, have you ever had success with Advil or steroids? Many with autoimmune encephalitis feel temporarily better after taking something that reduces inflammation. T.Anna

From what Ophelia wrote, trying the ER, may not be the worst thing, since any referrals would be within NYU itself. T.Anna

I think he may have a yeast issue, he has in the past. Will address it with the doctor this week. T.Anna

Thanks. We will see the doctor this week, I think, so I'll ask to check it. Last night it looked a lot better to me. I think her cut his bangs (hasn't cut his hair since October), and I don't think he hit his head this past bathroom time, so that's good too. It had been a green/black/blue, now it looks pretty normal. T.Anna

So DS15 was in a great mood after being stuck in the bathroom for 15 hours last night. Lately he has had a sense of humor and been a pleasure to be with. He is still stuck with severe OCD, but he seems more himself. The downside is that he has been ticcing and having chereoform movements almost non stop. Why is there more ticcing stuff all of a sudden? We are working on hopefully getting PEX for next week since DS has been non functional since January. What is going on?? TIA, T.Anna

Suggestions: 1. Write a summary of child's history. 2. Ask any doctor's who you think will, to write a brief opinion regarding your child. 3. Write a cover letter that states your case for seeking a comprehensive a.e. workup. As for the last suggestion, you could probably post your proposed letter here and there are some gifted writers/experienced parents who may be able to critique/help edit the letter. T.Anna DS15

Thanks Mayzoo and MomwithOCDSon! I will go to the store tomorrow and look for tablets. Today he had some really good moments. Just wish we had more!! T.Anna DS 15

It is less swollen and a bit discolored, but it looks a lot better than before. I will ask the other doctor about it this week. Thanks guys, T.Anna

He is like a detective and generally only drinks water. Maybe I'll scour the store for another probiotic in a real pill form T.Anna DS15

According to a family ftiend at NYU, dr. N is a star in the epilepsy center at NYU. Epilepsy is generally closely connected to Pediatrics (according to an ER doctor friend). If you can get them to observe her for 24 hours due to seizures you can perhaps find someone familiar with NMDA and with Dr.N since that would be in the epilepsy ward. Because of the book and it's popularity, NYU doctors (especially) in epilepsy may be more inclined to see autoimmune encephalitis as a real diagnosis. Good Luck T.Anna DS15

Thanks, he won't take chewables, we have some here, as well as powder : / Guess ill pick up some Align.

Ds15 is refusing to take his probiotics. This is a new thing, until two weeks ago he would take anything white in a capsule, now he won't take any capsule. Align looks like abx (white/hard pill). Any reason I shouldn't try to use it as a probiotic? I hate to have him on abx and nothing to help the gut. Besides I heard it can help with bathroom frequency which would definitely be a plus here too. Thanks in advance, T.Anna

Last night DS started crying out if the blue. We hasn't seen this in months. We have been tittering down the Augmentin which has anti inflammatory proponents. DH gave him 2 advils and within 15 minutes DS was cheerier and within an hour he ate dinner and did some word scrabble. It was truly amazing. DS is still suffering, but all the sadness/crying melted away. Yesterday I was listening to some old Radio Pandas shows (Summer Flares). The doctor on the show (cannot remember her name, maybe Bahkta) suggested Aleve overAdvil. The neparesene (sp?) is easier on the body long term and each dose is 12 hours. Anyone ever hear this? T.Anna DS15

Got a response from Dr.Schulman that the article does not refer to kids. Love the fact that she responds, even when on vacation. T.Anna

What does the primrose oil pill look like?

PEX is plasmapheresis - [from Wikipedia] The procedure is used to treat a variety of disorders, including those of the immune system, such as Goodpasture's syndrome,[2]myasthenia gravis,[3][4]Guillain-Barré syndrome, lupus, and thrombotic thrombocytopenic purpura. It is also used with success to treat PANDAS, but it can be difficult to find physicians who will perform the procedure on these patients. It was part of the cure used by Dr. N at NYU in the Book Brain on Fire by Susannah Cahalan.

<<She is super smart but has really been struggling with reading. She has an appointment to be screened for dyslexia in the next few weeks.>> This line struck a cord. Was your DD reading well before? Dr. S uses reading as part of her clinical evaluation for PANDAS (including rages, irritability, OCD, etc). There are children on the forum who have had T&A and still suffered from Strep and PANDAS. Did you run titers as part of the blood work? I would definitely try to find a PANDAS specialist. T.Anna

I re-read this article and I think something like this can happen at my kids' school. Before I ever heard about PANDAS, I knew about 10 families that kept rapid strep tests at home because it was so prevalent at school. T.Anna DS15

4Nikki, he wont do any ice/heat compresses : ( Cobygurl, Thanks! I think that he might be reinjuring himself each time he fights rituals in the bathroom. The bathroom (BM) has consistently been a challange, hopefully the new treatment will help all these things. Noticed that he started trichtollomania again too. Maybe it's a herx, but he's fighting me on taking probiotics. How do you reason with a 15 year old who has stopped believing things will get better with a couple of pills. Are there any probiotics that are more "pill-like" then capsules? Thanks as always, T.Anna DS15

Taking omega-3 fish oil supplements may increase the risk of aggressive prostate cancer by 70% Researchers at Ohio State University, in the U.S., also found that taking the supplement was also associated with a 44 per cent greater chance of developing low-grade prostate cancer. Full Story: http://www.dailymail.co.uk/health/article-2359466/Taking-omega-3-fish-oil-supplements-increase-risk-aggressive-prostate-cancer-70.html DS15 is taking two pills a day. This line from the article really bothered me... "It is unclear how fish oil could trigger tumours, but omega-3 may restrict the immune system, or damage our DNA." Why am I toying with something that restricts an already poor immune system? T.Anna DS15

A few weeks ago DS admitted to hitting his head against the wall, while fighting rituals in the bathroom (about three weeks ago). It has been a few weeks and his head is still swollen (less, but still much bigger than normal). Anyone ever have something similar? I don't think he has done it again, but he may do it when he is stuck in the bathroom every week. He never lost consciousness, had signs of concussion, or a goose egg. It's more like an overall crown swelling and is soft to the touch although maybe not as soft as a few weeks ago. How long would it take for something like that to go back to normal? It creeps me out when I touch it (doesn't seem to hurt him when I touch it). The doctor said it was from self harm, but does it take so long to heal? Thanks, T.Anna DS15