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Everything posted by JAG10

  1. I would second that Biaxin suggestion. We had a similar flare with both girls this year where switching to Biaxin did the trick.
  2. No info on PEX for you, but I had my tonsils removed when I was 21. My recovery was longer than either of my girls' who had them removed ata ages 5 & 8. As a young adult, I was home bound recovering for at least a week. I remember that I went back to work after that, but couldn't swallow without an discomfort or eat regularly for 3 weeks. Back then, doctors "babied" the pharynx, but now they are having kids eat regular food (minus jagged edges like pretzels or chips) right after surgery which is supposed to help the recovery process.
  3. Hey Alex! We really miss your input around here. Perhaps we need to start a reunion post to get some old friends to provide updates??? Thank you and everyone for your kind words. I know this isn't over, but I just don't think she will ever be as bad as she was. And her little sister is hitting that prime pandas age, so on we march. Unfortunately, dd8 isn't bouncing back from illness as easily as she was before. Deep breath. None of this is a life sentence. Keep one important thing in mind...your child's best day is their baseline. There are endless reasons why kids are worse than w
  4. We are all so fortunate to have each other. I've met some amazing, brilliant, generous people on this board. And I know right now there are parents out there poking around and looking for that post that matches their kid's craziness. Come on board and embrace your own OCD!!! My girl wouldn't be well without this community, bottom line. Since she doesn't have a sudden onset date, we are using the dates before Memorial Day weekend, the dates of her first IVIG as her PANDA-VERSARY (who came up with that one? Genius!!!). Thank you for all the high fives and tears of sisterhood. I can s
  5. I want to share a message of hope. My dd12 has been doing well for awhile, but I'd like to frame it to give hope to those not doing so well right now. I don't know exactly how long she's been sick, but I'm guessing since preschool. By the time she was in K, she had her first dx of ADHD and her first psych meds. By March 2007, our contained concern went over the cliff and crashed into OCD and mania-land. And that is where we stayed, trying all different psych meds at all different doses and combinations for over 3 years. Fed up when the psychiatrist that assured me we weren't missing a
  6. LFran, Was your GYN in the know because of the need for "folic acid" or methyl folate during pregnancy OR because those with MTHFR mutations are warned about birth control pills? I know we mainly have the "pediatric" mindset when we discuss our kids here, but our young ladies will eventually be sexually active and we should be informed about those implications as well. Those references to BCPs are so vague and general..... Who knows if the risks are associated with increasing age or what? And what about us moms? How many of us have also been tested and discussed this issue with our own GY
  7. Hi friends, A couple of questions because I'm so easily confused by all of this. Lfran- why both methylfolate and methylguard plus? Why does Dr. Jones recommend regular multivitamins or regular folic acid if those with mutation can't concert it? Michael Tampa- Were you the one who posted that supplementation is NOT lifelong? That muscle testing indicated you needed methylfolate and then no longer did? How do you monitor that without muscle testing? Any danger to taking it when you don't need it or just pee it out/waste of $$ risk only? Thanks!
  8. Cobbie, I would ask to be put on standby; I'm sure people cancel. Update them of his status and your willingness to get him there with a minimum of X number of days notice. There are folks whose children are near the end of treatment that have IVIG scheduled but may not need it when the time comes. I think there is a good chance you could get him in early if you let them know your status and your traveling parameters. I'm so sorry his suffering is so intense. Maybe the steroid taper will bring some relief or perhaps you could ask if it should be extended since strep is just leavi
  9. Bees- Try PM'ng Mom MD. I don't see her on here very much anymore, but she is a doc as her username suggests and she might be able to point you in the right direction in NC. You can use the search feature for forum members as well as topics. When are these docs gonna stop treating pandas like it's a religion???? We don't "believe" in it. The medical establishment cannot afford to believe in it. They can't afford to dish out abx or IVIG/PEX so it HAS to be rare if it exists at all!!! Doctors must HATE the Internet!!! This syndrome is about whose family is tenacious enough to find a
  10. Phasmid, This is so fantastic!!! I was wondering if you were still using Vitamin C and NAC in the 3:1 ratio? Dr. B at Yale emailed his study of NAC for hair pulling turned out negative. But they did not use Vitamin C with it and I was wondering if you had different results? Jill
  11. Chemar, I went back and reread my posts. There are no overt or covert attacks on you from me. My criticism was explicitly of the study and its possible implications. We had a brief disagreement of fact about Medicaid to which I responded with certainty because I deal with that issue as a professional. It is a complicated issue and I can totally see how a misunderstanding could occur. I did not do a great job of explaining it. This document does a much better job. http://www.kff.org/medicaid/upload/7846-03.pdf Believe it or not, my last post was an attempt to acknowledge the
  12. Do any of you remember when my dd12 had those crazy high liver enzymes 3 weeks after starting Bactrim last year? Like levels in the 700's when they should be in the 20's?? Well, gratefully, Dr. B ran those liver tests because she didn't really show any symptoms of liver distress, just some headaches which could be lots of things. Her reaction to Bactrim was unusual but now we know to stay away from it. I posted about it knowing many here had tremendous success, but they might want to get the liver checked. I don't think with 1 in 5 Americans filling a script for Zith last year that do
  13. Oh goodness, Chemar- NO! Guns down, no messenger shooting here. My point was to view this study with a frame of reference and that doesn't appear to be a pediatric reference. As far as your relative's situation, I'm sure you are quite certain of the details. I am quite certain that the elderly can have both Medicare and Medicaid. Medicaid is for the poor. Medicare is for those who pay into it and are getting a service that is reimbursed by Medicare like acute rehab and the number of days per year covered are limited. When those elderly who are poor enough no longer receive
  14. The elderly definitely qualify for medicaid as do veterans. Medicaid is what pays for nursing homes for those who cannot pay privately. Medicare only pays for "short term" rehab like after a stroke.
  15. While "Medicaid" population is sited, there is no age range provided within the text and the graphs are miniscule. However, the researchers are from "Geriatric Research Education" and the VA.....no mention of any pediatrics. From the Division of Pharmacoepidemiology, Department of Preventive Medicine (W.A.R., K.H.), the Departments of Medicine and Pharmacology, Divisions of Cardiology (K.T.M.), Rheumatology (C.M.S.), and Clinical Pharmacology (K.T.M., C.M.S.), and the Department of Biostatistics (P.G.A.), Vanderbilt University School of Medicine; and the Geriatric Research Educa
  16. DD12 is currently in 6th also. We had 3 sets of vaccine titers run by Dr. B in 11/2010, she was 10 at the time. The strep pnuemoniae 14 serotypes, the H. Influenzae Type B and Tetanus. I got the rationale for the strep pnuemo and HiB (which for both she had no protection) but was always curious why he chose to check tetanus (for which protection has held.) Dr. K had also mentioned Tetanus was the only vaccine that we should get or check to see if protection is maintained. Her tetanus level was 1.37 with in-range protection levels >.15 We obtained the medical exemption from Dr. B
  17. Thanks so much for the tip! I got one for my therapy room in my elementary school which I feel is such a germ pit.
  18. It's both; it's the urgency, frequency, accidents and burning when beginning. It's also that foul odor that is unmistakable. I took her to local doc a week ago Saturday. Her urine tested positive for UTI. She was on daily Zith then. He added Keflex and sent the urine in for culture to make sure her infection was covered by those abx. She does not complain of significant pain, just some burning when beginning to urinate. Sorry if this is a dumb question, but can you have a sinus infection without congestion? She didn't/doesn't have congestion at all. We went through this exa
  19. Does anyone have this experience? Child has illness asymptomatic of "regular sick" symptoms (behaviors de jour present.). Child is prescribed correct abx, then "regular sick" symptoms appear after being on this abx for a few days? Or is it a coincidence? My younger dd8 has had a UTI and pandas symptoms of hyperactivity and urinary symptoms (frequency, holding too long, accidents.). She was on daily Zith, then with positive UTI, local doc added Keflex. 3 days later, she wakes up with a sore throat and headaches she's had for days, no laryngitis. The Keflex was prescribed for 10 days, tomor
  20. I'm sure you are hearing from him. These guys are doctors, not marketers or web designers. Perhaps it would serve them well to get some assistance in these areas rather than trying to do it themselves. Not intended to hurt your feelings Dr. T, just a little constructive criticism. He's a brilliant doctor, very inquisitive mind diagnostically.
  21. 6 weeks post your 1st IVIG is a little early to panick. I believe one of our beloved docs calls it the "suicide period" and he means for parents! That being said, I think LLM and SF Mom make some great points. If it turns out that IVIG isn't the right treatment for your child or others, if over time (months) and possibly a few treatments your child's behaviors aren't trending upward toward neuro typical, you are not out of bullets to beat this beast. It is prudent to be cautious and stick with one treatment at a time, so you can document what is going on. There are no failures because
  22. Found a Penn State study looking at copper/zinc ratios in ASD. Reading in the purpose, a top level of 1.25 is reported for children 3-8. Evaluation and Treatment of Copper/Zinc Imbalance in Children With AutismThe recruitment status of this study is unknown because the information has not been verified recently.Verified April 2007 by Penn State University. Recruitment status was Recruiting First Received on May 12, 2006. Last Updated on April 18, 2007 History of ChangesSponsor:Penn State UniversityCollaborator:Thrasher Research Fund Information provided by:Penn State UniversityC
  23. I looked up my girls' labs. They are as follows: dd12Copper= 77 (L). Range: 87-182 Zinc= 80. Range 25-148 Ratio: Cu/Zn= .96 dd8Copper= 79 (L) Range: 117-181 Zinc= 70. Range: 48-129 Ratio Cu/Zn= 1.13 So neither girl makes that .7 ratio mark. Can others chime in with their children's levels? Perhaps the ratio barometer is different for children??? Immune system dysfunction is a symptom of both low and high copper. Low copper is described as "rare" like some pandas we all know. It is interesting the normal range for zinc runs much lower mcg/dL than copper
  24. A couple quick questions... Does anyone know what the ratio of zinc to copper should be? I read somewhere 6:1, but I think that was with hair sample not serum. Anyone know that ratio? Also, what is the impact of high dose Vitamin C on zinc/copper? A few months ago both of my girls tested low on copper, which I was completely shocked, shocked! It made me throw my hands up with the whole supplementation piece. I understand IVIG can give the one screwy lab results, but they both came out low, match no "low copper" symptoms, only high copper symptoms. I was all ready to join the z
  25. I'm confused. Lots of chat about high myco-p IgG, which I understand is a concern.....but if your child is getting IVIG, the myco-p IgG is going to go up, right? I thought if a child receives IVIG, we should only be monitoring myco-p IgM? My dd myco-p IgG was tested Before and after her first IVIG. It doubled to 3.1. My impression was they don't even look at the IgG anymore because they know it is inflated from the donor antibodies, so it doesn't give them any meaningful info. Maybe I misunderstood?
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