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tu4four

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Everything posted by tu4four

  1. Thanks. I'm going to look it up tonight. Maybe I can get it on my nook. Thanks.
  2. My family has exploded today--including me. Actually, my husband is the one who has stayed somewhat sane through this all. This has been building for quite some time...I have a dd11 who cannot/looks like WILL NOT do anything I ask. You have probably seen some of my posts about how out of control and oppositional she has become. She routinely calls me a moron a tells me to shut up stupid, destroys our home, etc. She has done all kinds of wild antics, pulls out anything that she wants and makes huge messes but will not pick up anything. I know that she is sick. But I also know tha
  3. Big hugs to you. This is so hard on marriages. It's hard period. My husband and I have been in that horrible place where we just can't agree---where I know my kid (s) is sick, and he knew it on some level but hadn't read everything that I had read and wasn't convinced. Who wants to believe it? And it often LOOKS like a behavior issue for us--we often talk about how that belief is a luxury that we can lo longer afford. For us, in addition to the above, I think a lot of what was going on was the crushing weight of providing for our family with unending medical bills. I am a stay at home m
  4. Took my daughter to the long awaited neuro appt yesterday. He is totally mainstream, as I expexted, but he is going to so an MRI a nerve conduction test and a lumbar puncture. The neuro was kind a d understood that we are going through something really "bad" as he said. But, of course. He didn't think it was pandas. I didn't ask him if he thought so, but after I got a feel for him. I asked him what his thinking was about it. He said he believed in it but thouught it was way over diagnosed. Before we go through all of these tests, especially the lumbar puncture, is there anything els
  5. Oh, I am so thrilled for you and how far he has gone, but so sorry he is not all done yet. I know that you must be exhausted. I was wondering if your son had a lumbar puncture to look for encephilitis and other things in his spinal fluid? I 'm wondering because my daughter is going to have one, and I don't dilly know what to expect. The doc didn't seem to suspect encephilitis, but I am desperate to find anything to pay for ivig. My daughter is different than your son in that her obvious OCD is not what is taking such a toll right now---it has been a bigger issue in the past, but
  6. My son has had a low grade fever on and off (but mostly on) for the past few weeks. On one occasional he threw up (just a little), but he often complains of nausea. I have taken his to the pedi twice for this, but they so the strep test I ask for (negative the last two times) and since his fever is so low (often it shows 98.6 on their therm), they send me on my way, and that's the end of it. Last time the pedi did test for a couple of viruses..he showed a very high igg to ebv, but that's it. This morning he also has diarrhea. Anybody know what could be causing this? He is not
  7. Have you just had contact with 23and me? My kit is sitting on the table with spit in the tube for two days because the site won't recognize my e-ma or allow me to create a new one with totally unrelated data. Even when I call the non-customer care number number, they haven't answered in the past three days, and apparently their phone message box is full. I am wondering if something has happened there?
  8. I know this sounds silly, but I ordered our kit and now that it's here and I have a tube full of saliva I can't sign in to register it. They obviously have my e-mail because I've gotten a couple from them, but I keep getting a message that says there is no such account and then when I try to create a new one they say they can't accept my registration at this time. Sorry, I know this is silly. I just thought some of you might have had that problem. Thanks,
  9. Oh, this makes me so happy for you. Brings tears of joy for you...and of hope for my girl.
  10. We did psych meds for four years, and we tried depakote. It was not one that worked particularly well for us. We has a pretty brief run and then switched to stavzor, which is similar but newer. Stavzor was better for my daughter except for the horrible side effect of nausea and vomiting. We are not giving an psych meds right now. I often consider it again--like daily--because my daughter is in a terrible state, but I feel like I won't be able to see what improvement comes from if we put her back on them. And she was having pretty decent side effects....a fine tremor, then a large tr
  11. Her tsh was 1.3. I am hoping this is all going to point to autoimmune and the neurologist will look for encephilitis.
  12. Okay that sounded wrong....I just meant to say that I hope no doc would insist on long term steroid treatment for HE and that we could cut to the chase and go to ivig.
  13. TPO Ab is 31 (high) range is 0-26 Triiodothyronine free serum is 5.5 (high) range is 2.3-5.0 These are my daughter's labs that came back today. Tsh and t4 were normal. I've been hoping for something that might point to hashimoto's encephalopathy or something that would qualify her for ivig---even through I know that the first line of treatment for that is long term steroids. Dd11 has lyme band positive--key ones, so i hoping..... Anybody know about levels like these? Thanks.
  14. I am so sorry that you Are going through this. We are right in the thick of it, and it is incredibly difficult. Prayers for you! I wanted to mention that band 23 is thought to be lyme-specific.....so that a positive on that band wouldn't be from anything except Lyme. You might want to look into lyme if you haven't done so. Good luck!
  15. Powpow--thank you for that encouragement.....guess that's what I'm thinking about---either continuing just lyme and co treatment or turning around and looking at autoimmune as the forefront issue. My family has quite an extensive autoimmune history. I know that Lyme treatment is important, but with no change..... I am so sorry that your story is so similar---as my daughter once said when her OCD was way out of control, "this is a hard life." Your story, too, gives me hope. I know that my daughter is still in there...and tonight after Advil and other supplements.....he was the sweet bo
  16. LLM--I a. So glad that your kids are doing better, so glad that they don't remember much, sorry for you and your husband to have had to go through this and to have lost so much. Thank you for the encouragement--I take it with a grain of salt when other people tell me it will get better. But when one of you tells me it HAS gotten better, I am encouraged. You deserve big blessings!
  17. LLM--I know that you are right about going slow. I know I need to. However, my daughter has been battling this for 8 years. I am now losing my son. And my 4 year old is right behind him. Nothing terribly bad yet, but lots of quirks and strep 4 times in 2 months--not always symptomatic. And I have a 17 year old who has more straightforward lyme...joints, heart issues, air hunger (she also has babesia and Bart as most of us do). And of course, OCD. Our house is as close to a psych ward as I have seen on a neighborhood street...dd11 doing crazy things like climbing out her second fl
  18. Thanks for the advice. I did ask our non-believing pedi to test for mycoplasma and ebv, etc when I went in a couple of days ago. We do have an LLMD in Colorado--My daughter has an appointment with our llmd in Colorado in November. Maybe I can get him in, too. He was not symptomatic for so long, and now all of a sudden, it's undeniable.Thank you for your help
  19. My dd11 is over the top, as she has been for quite some time. We have been treating for Lyme for 6 months, and so many of you have given me great ideas about why we are possibly not making any progress. We are testing for pylourria, we did bloodwork to get titers that might point to Hashimoto's Encephilitis. We have a pediatric neurologist appointment at the end of this month. We have another LLMD appointment at the beginning of November (with ART) and an appointment with a new PANDAS immunologist a couple of days later. In the meantime, my 8 year old son, who has had the same early
  20. Thank you all for your great insight/info about what you have done. I have been out of town and am just now able to sit down and think through what you have said a d what my next steps might be before we see our LLMD in a month. I think it makes a lot of sense to test her for kpu and will do that ASAP. Also think it makes a lot of sense to try Knotwood and curcumin rather than relying on Advil at the worst of it. And I think it is definitely worth thinking abouT--not committing to, but thinking hard about the possibility of immune suppressing drugs. I have read other posts about
  21. And she is being treated for those with Mepron, a-bab, a-Bart, Zithromax artemisinin. Is there something else I'm missing? She has been complaining that she doesn't feel we'll..stomach, etc.
  22. Yes, she has bartonella and babesia...I don't know about anything else..I sometimes wonder about west Nile as she had a ton of mosquito bites as a toddler.
  23. Wondering if we should continue down the same path. We have an appt with our llmd again in one month. I love our doc. He is the only one who has taken Us seriously and treated aggressively. All 6 members of my family have Lyme. Dd11 is extremely affected for 7 years--on psych mess for 4, , has PANDAS. My dd17 is in the middle of an episode with Lyme--which is how it goes with her. Usually involves a swollen joint, but this time no. More chest pain than ever before. OCD, heart rate as low as 36. Had an abnormal EKG yesterday,... I am havi g faith that Melton, Zithromax, cefdinir and
  24. I'd keep it til you see how melatonin works for him. I have used it with melatonin
  25. I have also noticed that sometimes my kids are not clinically sick. But they look sick around the eyes....sometimes with darker circles. For what it's worth, my son sometimes starts having issues --less ability to concentrate, more agitated, etc, and we give him lysine--after a few days he seems better. Less agitated. I'm thinking this points to viruses which can big them down, but not sure of that
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