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T_Anna

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Everything posted by T_Anna

  1. <<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
  2. 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
  3. 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
  4. 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
  5. 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 s
  6. 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
  7. 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 f
  8. 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
  9. Sad, but true : ( I guess mainly because pet psychologists aren't given as much respect as child psychiatrist : / T.Anna
  10. 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
  11. 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
  12. 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
  13. 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
  14. I heard that checking CSF for Lyme was extremely accurate, if you've already covered that then forgive me. T.Anna
  15. 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 lo
  16. 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 clothin
  17. So disappointing. Good luck with the T&A recovery and your appointment with Dr.N. T.Anns
  18. <<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
  19. Has anyone tried this for OCD? Thanks in advance, T.Anna DS15
  20. 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
  21. 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
  22. 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
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