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Everything posted by _Misty_

  1. Hi Laure. Would you be willing to talk to me privately about your experience at Rothman?

  2. Thanks, laure! July-Fireflies- do they offer outpatient at Rogers? I'm not sure if she's currently severe enough for inpatient since her weight seems stabilized.
  3. My daughter is in her 3rd severe flare of PANDAS, now age 12. She has lost 17% of her body weight and was an inpatient in the hospital last week, although they didn't place a feeding tube as the nutritionist recommended. She is now eating a larger quantity of food, but only 3 or 4 items due to fear of allergens. I did an intake with the Rothman center yesterday and am waiting to hear when they could get her in. I'd love to hear your experience there or more about Rogers... I didn't even know it existed until today. What is it like doing the homework each night? We're trying to figure out feas
  4. Chemar- thank you! Ibuprofen hasn't shown much benefit. She's halfway through the steroid taper now and she says her OCD is better, but her eating hasn't improved. Her mood seems improved most of the time, but when she gets irritable it's like you lit a firecracker. I'm afraid she's just so far into this flare and it's so intense that the steroid may not do it for her. Our pediatrician and NIH are pushing for hospitalization but we're holding out hope that she will improve. Her weight loss is so severe they are considering it a crisis. I would go tonight if I knew they would believe it's
  5. Original poster here. Oops! Didn't mean to put this under tourrette's and tics, meant to have under PANDAS/PANS but I don't know how to move it.
  6. Long story short, my daughter first developed PANDAS at age 6. Amoxicillin worked wonders and was continued for several months. Our happy world crashed down again about 6 months later at age 7. This time we got into the clinical trial of IVIG at NIH. This was in 2013. My daughter ended up getting placebo, but she recovered on her own. Over the next 5 years we really didn't have to deal with any severe PANDAS symptoms. There were little blips here and there, but life was good. A few days after Christmas this winter she started restricting her eating again, but we naively believed it wou
  7. That's interesting about the whispering. My dd hasn't ever stopped talking, but she sometimes talks extremely quietly in a flare.
  8. Thanks, ladies. I called DH home from work today to give me a break. I had just had enough. I got a nice long nap and he straightened up the house. When she gets in a behavior episode it may last just a few minutes or up to an hour, but then she just snaps out of it. She may swing back and forth frequently, though.
  9. I'm hanging on by a thread now. I guess she is overall a little better, but the behavior crap is really old. Her OCD is better, maybe 40%, but the behavior stuff is just annoying. I know it could be much, much worse. It's been two weeks today from the first day of infusion and we very well just need more time, or possibly she got placebo. Her tics are gone, at least. This morning she is doing her math and had a problem that said Todd is 15, Steve is 8. How much older is Todd than Steve. Her answer was 4-8=6. What. She is normally very bright. I think it's just disappointment because t
  10. I don't have any links to official info. I searched quite a bit a while back. My daughter's speech is affected, too. I mentioned it to a doc at NIH involved in the PANDAS study and he wasn't sure about it, but said it might be a form of age regression since my daughter stuttered when she was younger. When Dr. Swedo met my daughter she described it as stammering. It gets very bad at times and she just gives up trying to get the words out.
  11. Thanks everyone. Her OCD is still doing better than before we went to NIH. Her behavior has improved a little, but it's still not normal. She's been falling asleep a little better than before. It seems most have trouble with that after IVIG. Hmmm. We are a week out now. Hopefully we will have a clearer picture in another week. They did tell us the possible side effects (many, many times) and they call us every other day to see how she's doing. Because of it being research they go overboard making sure you are informed and ask if you still consent at every step. They told us to push fl
  12. They left her antibiotic as it was - amoxicillin 500mg twice a day. They didn't want to rock the boat by making any changes. I don't think it matters too much to them which one they are on, as long as they are being protected from strep reinfection. Edited to add...I don't think they wanted to tamper with her symptoms because of the anti-inflammatory effect of beta-lactam antibiotics. If she was already fairly severe they wanted to keep things the same to get a true picture of whether she gets better or not. Today was a really, really tough day. Her OCD is considerably better - it's pro
  13. Thanks EAMom and thenmama for sharing your experiences. We got home this afternoon and her OCD has been pretty bad again. She developed a new compulsion this week and it is sticking around. We've seen a couple behaviors we haven't seen since last summer. Hoping we're turning back the pages! One of her tics seems to be much better (maybe gone - too soon to tell) The other has been pretty mild today. She's had some pretty bad behavior things - anger and aggression and overly exuberant laughing. She had some nausea and stomach pain this morning on the way to the airport. I can't tell if th
  14. Thank you! It was surreal for my daughter to play cards with Dr.Swedo! We are number 28 out of 32 and the study has been going on for 2 yrs. It will depend on how long it takes to get 4 more kids in and then the 6 months of following them (at least that long- I'm not sure if they'll wait until the year mark). They did tell us that every child that has gotten IVIG so far improved.
  15. DD is 7 and we just completed the first visit in the NIH study on PANDAS. There is a 50/50 chance she got IVIG. We won't find out for 3 months what she got, but if she isn't better in 6 weeks they will give her real IVIG. What should I be expecting if it was the real thing? She had one brief episode of dizziness and nausea within an hour or two of the 2nd dose completing and a couple of hours later had some shivering. The day after (today) she had a bad headache, but it was brief. Today (1st day after) she has had a few episodes of extreme hyperactivity. She's had huge mood swings, too.
  16. I thought I posted a reply earlier today and it didn't show up. Hmmm. Anyway, Yes! She's accepted and we fly out Sunday. There is some concern that she won't meet the severity requirements, but we'll just have to see when we get there. I don't know exactly what they base it on...her OCD is almost constant, but her particular Obsessions and Compulsions allow her to function for the most part. She has some separation anxiety and trouble falling asleep and wakes and comes to our bed during the night, she having some defiance and age inappropriate behavior and one mild tic. We homeschool, so we
  17. Things have finally slowed down a little. I've spent the last couple of days talking to NIH about the PANDAS study. Deedee- her glutathione is normal...we checked it in October. I assume it would only help if she was low? She has been checked for myco- the doc we see for PANDAS (from the PANDAS resource network list, but not one of the top ones, he's 2.5hrs from us) interprets that she had an active infection around the time of her initial episode...her pediatrician says he wouldn't consider her labs to indicate active infection, but prescribed zith just in case (5 days only) - we also
  18. Update on dd...We left off the methylfolate and methyl b12 for 7 to 10 days and gave two doses of niacin. She might have improved a little...her anxiety is better, but OCD is still raging and she stopped eating for a few days. I got the lower dose methylfolate - 400mcg and gave it to her yesterday. I skipped it today and gave her methyl b12 500mg or mcg, can't remember which. It's about the same ratio her doctor had prescribed, only at much smaller doses. Her OCD is definitely worse today. I don't know if it's from the methylfolate or not.
  19. Deedee- I was posting at the same time as you and didn't see your post earlier. You've made some good points and given my and my hubby some things to think about. mpsloan-Interesting that you were turned down because of onset. That may be the same for us. I spoke with Dr. Grant and he felt like we might be eligible. I guess it's up to the whole panel. How long did you stay at 12.5 mg of zoloft? I wonder if staying at that dose could be beneficial.
  20. That's how we feel about the SSRIs. From the very beginning every doctor has pushed them at us and we've refused. Our pediatric neurologist has yet to admit that this is PANDAS...we see her again Monday and I'm curious how she'll respond to the NIH researcher (MD) saying it sounds like classic PANDAS to him. I questioned her about a Zoloft dose and she said 25mg to start - which I think is way too high. Our pediatrician is understanding about our hesitation, at least. We told him it's just a band-aid for OCD and not a cure for an autoimmune problem. As far as the IVIG, it is very hard
  21. Yes. She was still on antibiotics, but had been at a reduced dose for a few weeks and was exposed to someone with strep. She didn't get it, but that may have triggered this flare. Our main concern about the study is that she would have to have two spinal taps.
  22. I've been on the phone with NIH quite a bit the last 2 days discussing the current PANDAS study using IVIG. I'm not sure what to do. DD7 is in her first flare after her initial episode last May. We don't know yet if she'll be accepted for the study, but it seems promising. My thought is if the IVIG isn't a permanent fix, is it worth it? Her current flare is not as severe as the first episode, but it is bad enough that we don't want her to live this way. Is there any hope that having an IVIG within the first year of PANDAS would be more beneficial than waiting and trying other things for a
  23. Thanks for the suggestions. I've read them all. It's been a busy day so I can't respond in depth yet- hopefully tomorrow will be a little slower. She is slightly better today. We are anxious to see if the trend continues.
  24. Thanks for your reply. We do use melatonin as needed, sometimes we use benadryl. She is allergic to all nuts, so very little dietary magnesium. She gets a daily powder magnesium, though, and has for months. She is on probiotics...not the ones you mentioned. We use vitacost kid's chewable at a double dose - it's multiple strains. She has her tonsils and only snores when very congested. she does have a cold right now, which is what has caused this current episode, I suspect. Her flare started 8 or 9 days before she had any symptoms, though. We're not doing an extra vitamin D right now.
  25. DD7 is in her first flare after her initial PANS episode. We're not sure what her trigger was/is. She's been on amoxicillin with great success since her first episode in June. We ramped it up this time and it hasn't helped. She's getting worse. We took away her 5-MTHF and methyl b12 thinking she was getting too much. No improvement. We saw her pediatrician today and he added Zithromax for 5 days to see if it has any effect. I am feeling very anxious and alone. My husband and I just don't understand why this is happening. She is screaming right now over obsessions about her nose. She c
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