T_Anna

<<How were his T3 and T4 results?>> These are always within range, which is why endocrinologists say his thyroid is fine. His TSH is super low 0.01, but in the endocrinologist world that is from his encephalitis (not a reflection of thyroid function). Talking to doctor today will ask to re-check on our next blood tests anyway. T.Anna

Clock has been out since yesterday morning. He wont talk about anything much. Getting rid of the clock is similar to your GPS strategy, eventually he will stop thinking, about it asking the time, etc. Your story gives me hope. T.Anna

Thanks! I think right now the time is being dictated by OCD and DS was using the clock to "obey" I figure if he needs to ask then maybe it'll get tiring and he'll have to figure out another way to finish in there. I really am tired of OCD! Cannot wait to find and turn a corner. T.Anna

This is a hard topic. Even the best marriages struggle under this weight and at times we become co-caretakers rather then husband and wife. I remember going to a psychiatrist for DS who said DH and I should make sure to go out once a week as a couple. I almost burst out laughing. It's hard enough to find anyone who wants to be here all night every week, but at this point we cannot afford to do much. We try to sneak away a few hours on errands when we can and hope that we can hold our breath until things are better. T.Anna

So last year when we thought we could help DS with "regular" OCD, we put a clock in the bathroom. The first therapist thought it would help him keep track of the time spent in the shower. In the beginning it helped as did CBT. Fast forward to today, the clock has stayed in the bathroom. It's a standard 12" kitchen clock with a second hand that tics loudly. The past few weeks I realized that DS starts asking me about the same "Friends" episode every Monday night at 10pm. Yesterday, I used the excuse that the clock broke when I tried to reset the time for daylights savings. This morning he said he needs a clock in there (he's in for his weekly BM and rituals). I said I'll see what I can do, but that clock is broken. Should I try to find another one? Just ignore it? Did I mess with something that should have been left alone? Update: he asks me about every hour "mom, what time is it?" Thanks in advance, T.Anna DS15

The HE is dx, I believe, as a result of the thyroid antibodies or is it anti-thyroid antibodies (dot have labs in front of me). He has thyroid "issues" but not necessarily Hashimoto's Thyroiditis. Honestly, I'm not so sure that he has HE, since clinically he doesn't have many of the symptoms. His symptoms match Neurosacoidosis more and so do his elevated ACE numbers, but overall...I think I have a boy with a broken immune system and if we could think of more things to test for he quite possibly would be positive on those too?! The hardest part is that time keeps moving so fast. Before we know it, it's another Sunday evening and he's running into the bathroom to spend another marathon 24+ hours with his rituals. I remember in June asking for success stories and one person wrote "we couldn't see the light at the end of the tunnel, until we were actually outside the tunnel." I guess that gives me hope, because it's hard to find glimmers sometimes. Thanks, his friends and the school community have been great. Hopefully, he'll be able to join them one day, there just seem to be so many hurdles. JoyBop there are some HE Facebook groups where you might find some more information. Most are treated with steroids. At the moment we are only treating his thyroid with Gaia Thyroid Support. We were trying propranolol (beta blockers sometimes help), but we thought it might have promoted his trichollitomania so we stopped and the trich did go down (not gone, but much, much less pulling). Thanks again! T.Anna

He definitely has sensory issues, but it's difficult to see where sensory starts and just right OCD ends. When he sleeps in my bed then everything is loose. He eats a variety of food, from super hot soups, frozen ice cream, crunchy cookies, mushy cakes etc. I'm pretty sure most will dissipate once he's better, so that's our focus. It doesn't bother me if he wants things tight/loose, as long as he's stuck at home it's all bad. My reason for posting was because I found it fascinating that so many PANS kids do this. On a similar note, I just read the pinned symptoms list here and the "piano finger movements" were another thing I thought DS was unique in doing. T.Anna

Thanks 3bmom. He is currently on Valtrex XR since mid August. We see improvements just bit quick. Have an appointment tomorrow morning to see what we do next. Hoping it's IV steroids and LD IVIG. We haven't had a lot of success with diet, mostly because he can be so restrictive that I'm again of anorexia. T.Anna

Sad, but true : ( I guess mainly because pet psychologists aren't given as much respect as child psychiatrist : / T.Anna

Thanks Pr40. I finally have an integrative doctor on board who is a board certified neurologist as well. I have given her DSs 23andme and Courtagen and she is putting the various supplements together as well as titrating up etc. I'll Ask the doctor about the 5-http. Incentives/earning: he's 15 so i think that makes it difficult, but I also think he genuinely WANTS to please us and just CAN'T. I think that's why he cries and breaks down...we'll keep trying though, eventually something will give (hopefully it will be the OCD). We tested metals through blood and for now that's as far as we'll get with his OCD (no stool test, urine/drink test). Thanks guys, T.Anna

Thanks Pr40. I finally have an integrative doctor on board who is a board certified neurologist as well. I have given her DSs 23andme and Courtagen and she is putting the various supplements together as well as titrating up etc. I'll Ask the doctor about the 5-http. Incentives/earning: he's 15 so i think that makes it difficult, but I also think he genuinely WANTS to please us and just CAN'T. I think that's why he cries and breaks down...we'll keep trying though, eventually something will give (hopefully it will be the OCD). We tested metals through blood and for now that's as far as we'll get with his OCD (no stool test, urine/drink test). Thanks guys, T.Anna

Thanks Qannie, I hope so. T.Anna

I just learned this and figured I'd share. DS has been wrapping himself tightly in his covers lately and his his legs look like those of a mummy. By chance, someone posted in Facebook that their child likes to be wrapped up in blankets..."He is seeking sensory input and the deep pressure has a calming and organizing effect to his nervous system and muscles/joints." I found it interesting that DS was doing this on his own and it seemed strange and unique. I'm glad that there is a reason and was interested to see others do this too (some with blankets and some with stuffed animals covering them, etc). T.Anna

Just heard that from the Pediatric Neurologist integrative Doctor we just added. She said that she has had patients who are negative on Igenex but Lyme shows up in CSF, first time I heard that too, but I guess it's possible?! She seems to know her stuff. Anyone else hear this?? T.Anna

I heard that checking CSF for Lyme was extremely accurate, if you've already covered that then forgive me. T.Anna

tu4four, No we haven't done a spinal tap. He has been diagnosed through the following blood tests: Thyroid Antibodies (Hashimoto's Encephalopathy) SED rate (Encephalitis) ACE levels (Neurosarcoid) I would definitely classify the clothing as OCD, I heard of two other severe PANS teens with this. PowPow, DH thinks I painted too rosy a picture in my post and should've specified that DS spends 24-30 hours in the bathroom from Sunday night to Monday night. And that the OCD also involves staying on the couch as much as possible until Saturday night. Yes, I agree that we have come a long way and are not just splatter gunning it anymore, but it's still frustrating that he is not functioning even near normal teen ways. Thanks for the words of encouragement. PEX was 8/3/13, so I guess that gives us a lot of time! T.Anna T.Anna

Figured I'd send an update DS15 is still stuck. Pros: He is much better cognitively. He has a reliably good mood and is generally a very considerate family member. He is willing to help his siblings with homework, join in conversations and hang with his friends who visit once a week at least. Has started adding different foods on different days. Started talking about his illness, emailing with school friends and more responsible when he upsets us. Reduction in ticks (towards end of week they are gone). He's drawing, singing, hugging, but.... Cons: Still doesn't want to shower, change clothing, leave the house. Still has a marathon session once a week when he goes to the bathroom (rituals galore). Still pulling hair, although that is better with reduction of pr0opranolol. Has a complete meltdown when we push any of the above. Treatment: Augmentin, Valtrex, Minocycline, Diflucan and tapering off steroids (did 15 days at 80mg), now down to 20mg. HD IVIG last Wednesday and Thursday (4th one, others: Feb,March,August). We have added Hashimoto's Encephalopathy and Neutosarcoid to our list of ailments (along with Strep, Coxsackie, EBV & MycoP). In august we did 5 PEX in late July that didn't realize a reset, but might be helping with improvements now?!? Anyway, I just wanted to send out an update. We are still plodding along and if you didn't see what he looks like (handsome homeless boy), you would think he was fine. We had the school psychologist come visit last week to see if it's wise to start schooling (even a bit), but his opinion was that there was still too much anxiety and he's afraid of causing school phobias. He said he would come visit more often and the school has organized the kids to be in touch with emails, packages and hopefully visits when DS is more Ok with opening up to more friends (beyond the 3 who are always welcome). This is just dragging on. The idea right now is to deal with the AE with regular IVIG and prob IV steroids. This afternoon I will be speaking with the integrative neurologist about supplements (I have what she sent: olive leaf, thyroid support and reservatrol, but need an idea of what to add first/when). I guess this is sort of a vent...I'm thrilled we are still progressing, but also tired of the OCD. DS spends his time playing elaborate video games, building & designing Lego online, drawing and watching a few comedy shows (friends, Big Bang theory, Brooklyn 99). Anyone else have a kid that is clueless that TV characters are riddled with similar OCD? My daughter (10 non pandas) said to me that DS is like Sheldon, especially that DS eats only certain things on certain days. She said the big difference is that DS is sick and will get better and Sheldon (big bang theory) is not. I pray she is right. Sorry this was so rambling. Thank you if you got this far : ) Suggestions, observations, input, etc are always welcome! T.Anna DS15 - started falling off cliff in the Fall '12. January 24,2013- Last time he voluntarily left the house.

So disappointing. Good luck with the T&A recovery and your appointment with Dr.N. T.Anns

<<Another might be NAC (n-acety-l-cysteine), but this can cause problems if your daughter has a CBS mutation or is sensitive to sulphur. NAC will help the body naturally produce more glutathione.>> We had a bad experience with NAC, but our integrative doctor thinks it might be because DS was dealing with a lot of yeast (and not only a CBS mutation issue). T.Anna

Has anyone tried this for OCD? Thanks in advance, T.Anna DS15

Good idea Ifran. Thanks. T.Anna

Thanks Susie, his dose in only 200mg a day on Diflucan and I think the link was saying it was 400mg a day. Do you remember your daughter's dose? Since I lowered the propranolol he has been pulling and twisting his hair a lot less. So maybe that was the culprit. I will look at the Diflucan link, just wondering if I'd see him actually pulling or if it would just fall out on its own. How did the hair fall out with your daughter? What areas came out first? He has a growing baldish spot in the top of his head (like a balding man). Thanks again!! T.anna

Wonderful news!! Enjoy! T.Anna

Will IVIG be at home or an infusion center? I would bring a bottle with you. Good luck. We had the best experience so far! T.anna

Maybe take a break from wrestling. DS15 was wrestling when he fell off the cliff last winter. He came home with ring worm. T.Anna