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T_Anna

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Everything posted by T_Anna

  1. Good luck at the appointment. T.Anna
  2. <<I took my girl off antibiotics until we have an EKG. Playing it safe. Anna, where did you see the list. I can't find a good one yet.>> I read an article about Azithromycin (someone had posted it here - you can prob search) Dr. T rambled off that list yesterday. T.Anna DS15
  3. Biaxin Azithromycin Rispedral Were mentioned. T.Anna
  4. There's an App for that ; ) In my search for home EKG tests I found this review of a device you attach to your iPhone and it runs an EKG. It did mention that it could detect Q/T intervals... http://www.imedicalapps.com/2013/03/physician-review-iphone-alivecor-ecg-heart-monitor/
  5. Just received DS's Courtagen results. One of the mutations was CDKL5 which can be linked to heart rythms problems, specifically QTc intervals. This is concerning because DS15 has Cam Kinase II of 209 which is in the Syndham Chorea range and DH had a heart attack at age 31 (although we don't think it was related to rythm). DH is going to the hospital today to pickup DS's EKGs from last week. We took DS off Azithromycin and will try not to use Biaxin as well as no Rispedral. In the past DS has complained of palpitations, especially when on Luvox, which he has been off since June. Anyone else have a PANDAS/PANS kid with heart issues? I remember someone's son had valve replacement surgery a few months back. Other possible gene issues: GALC (Krabbe disease, doing blood test tomorrorw to rule out), WFS1 (wolram syndrome - not a huge concern at the moment). TIA, T.Anna DS15 ps. still waiting 23andMe which we did the same day : /
  6. Thanks Ifran, need to check on catastrophic, I'm remembering something about them being illegal in NJ. Will double check. T.Anna
  7. I am in charge of choosing the new insurance carrier for our company. I know that I want as low a deductible as possible and that I want good out I network coverage. At the moment we have Oxford Liberty and they are ok at best. If you are decently happy with your coverage can you post or PM me? Our company is in NJ but it needs to cover NYC hospitals too since many of us live over the border. TIA, T.Anna
  8. Thanks. That was my instinct as well. I think the doctor was concerned that if the PEX didn't work (or work fully), she was out if ideas. But there are other ways to solve this problem and we will exhaust all those other options first. Tomorrow I will talk to get about immune suppressants, I don't think she has a ton of experience with such severe patients, but she is willing to push until he is healed. Tonight DH and I decided to push a little. It went ok, he didn't cry or yell and finally did what we asked (got up to pee, crazy I know). The other issue is that his OCD is more avoidance, so it's unclear at this point just how many obsessive thought he has as he avoids going almost everything. He would never share any if his fears with us, even when things were pretty stable. Thanks as always!! T.Anna DS15
  9. I buy the Quidel brand I have both the dipstick and in-line. Lately, I've been using the dipstick type. They are just as accurate (or inaccurate) as ones at the doctor's office. The most reliable is the culture they send out. We have A LOT of strep in my kids' school and a friend of mine brought a test over when my daughter didn't feel well one day. I buy them on amazon. T.Anna DS 15
  10. Anyone ever hear of this facility? It was suggested as an option if the PEX doesn't work. Honestly, it seems too early to start looking into inpatient programs. DS15 just got out of the hospital/5 days PEX...only 36 hours ago! But since the suggestion will be followed up with the following:"Have you had a chance to look into it, there is no harm in research is there?!" Has anyone had any experience with this facility? I didn't see any specific OCD mention on their site. TIA. I'm running out of the adrenaline that kept us going through the hospital stay : / T.Anna DS15
  11. Didn't think of that, I will need to take him for a blood test (any other way to know)? Does Duricef treat MycoP at all? T.Anna DS13
  12. Just for the record Courtagen offers a "finacial aid" program and it can reduce the cost to $0-$100. They sent us an email and it was very easy to fill out. We are still waiting for Courtagen and 23andme....it has been weeks, so these things definitely take time. T.Anna DS15
  13. Are the monthly IVIGs still 2 g per kg or lower (1g/kg)? He came home late Saturday night. He is wearing new clothing (the shirt he changed on his own - progress?). So far no real improvement except that his appetite was greatly improved (but he practically didn't eat all 5 days in the hospital) and he seems nicer, talkative, etc. TIA, T.Anna DS15
  14. Non Pandas DS13 tested positive for strep on Friday. He has been on Duricef since then and today and yesterday he is congested and has a runny nose. Can this be a herx? He's sleeping again and just seems out of it. Thoughts? T.Anna
  15. Why not email his secretary and ask for your results, it may be revealing. T.Anna
  16. Because of the PEX, I'm treating both kids. I'm wondering if they are ping ponging it between each other. T.Anna
  17. Thanks. Just had my throat cultured at the hospital and DH is getting tested now too. I have been negligent with follow up and I will make sure that we keep checking until it's clear. I feel awful when I think about how DS13 has been working his butt off at camp, all the while having Strep. Thanks again, T.Anna
  18. DS15 is in the hospital receiving PEX. This morning Non-PANDAS DS13 woke with slight fever ans feeling sick. Strep tested him at home with rapid strep test and it was positive. Tested myself and DD10, I was negative. DD had a super slight pink and no symptoms (she usually has classic strep symptoms, vomiting, fever, headache). Our doctor is giving us 14 days of duracef for both kids. Here is my issue: DS13 had strep last Monday 7/22 and took a zpack. DD10 had strep last Wednesday 7/24 and took a zpack. Did the zpack not work?? Is one of us a carrier? Why does DD have a very slight pink line and no symptoms? Ending an already stressful week with a bang!! TIA, T.Anna
  19. Looking for suggestions and experience. If PEX works, what can we do to maintain it? What pitfalls should I avoid? Thanks as always, T.Anna
  20. They just started it, here's hoping it's successful!! T.Anna
  21. Thanks. Just aggravating. He must be hitting his head in the bathroom when he goes once a week. Hopefully the PEX will help with the marathon BMs : /
  22. DS has a soft (squishy) spot in the crown of his head. He was admitted this morning for plasmapheresis, and the doctors at the hospital did a CT on his head. It seems he has soft tissue forming in front of his skull due to self harming (chronic injury) and it has started to calcify...ughhh!!! I will send the CT to our neurologist, but according to radiologist if he doesn't stop the injury his head will be permanently reshaped. Brain is fine btw. I hate this disease. T.Anna DS15
  23. We had IVIG twice at home through Walgreens infusion. Unfortunately, we were denied both times ($10,738 for 2g/2 day each time). According to Walgreens, who filed the paperwork both times, it helps to have a different diagnoses then PANDAS. Also, the more letters and documentation to show that your child has had strep and other illnesses the better. Our pediatrician was not helpful with anything. He was resistant to even talk to Walgreens, let alone Oxford. I had to press to get him to send reports about our frequent visits and blood tests (and I'm pretty sure he sent only the very minimum) : ( That said, if you need to pay out if pocket, or have the procedure at home, I strongly recommend Walgreens. They were very professional and really tried to help with the insurance. T.Anna DS15
  24. But it says you cannot accept any messages. T.Anna
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