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Everything posted by tu4four

  1. Dd8, following in the footsteps of dd11 has become incredibly rageful. Like dd11, he has lyme/Bart/babesia. He had very high titers for ebv (igg). Until now, he has been hyper with clothing sensitivities, OCD, and periodic inability to handle any frustration. He has responded to some things that I don't often see mentioned. Like, for a while, lysine knocked out his extreme anger, but then that stopped working. 5 days ago we started grapefruit seed extract, and it has calmed him, no question about it. He can still be hyper and uncontrollably silly, but it completely took the anger a
  2. For us, the PANDAS immunologists revealed things that I didn't know and needed to know about viruses, level of igg, etc. our last recommendation from the most recent immuno was for IvIG. Insurance will not cover. We just had a lumbar puncture, MRI with a very mainstream neuro who thinks PANDAS is over diagnosed. I would never have gone that way early on--felt like it was too invasive--but after all the other testing, I felt like it was time. Haven't gotten the results yet except that her spinal fluid pressure was 38 (normal is 7-15 ...possibly up to 20). If she has encephilitis o
  3. Thanks for that link. The doc did not seem alarmed. Looking back on Wed, the doc came out asking me if she often suffered from headaches, but she doesn't, and I thought he was leading up to the fact that she had a really bad headache right then from the procedure. Now I realize that he was asking me that because it seems like she would have a headache pretty frequently with this kind of increased pressure. This wasn't our pedi neurologist who came out to tell me, but the doctor who performed the lumbar puncture. I had to call the er last night due to continued intense headache, and t
  4. Hi! Hope everybody had a great Thanksgiving! My dd11 had her lumbar puncture on Wednesday, and when the dr came out to tell me how it went. He said that she had more cerebral spinal fluid than he expected (I guess this is measured in terms of pressure?). I asked him if he thought that could be related to her raging, but he said no. Wondered if any of you knew anything about too much csf? Thanks!
  5. rowingmom--honestly, I don't know I'd the igg shots helped me as a kid or not. I know I was a sickly kid with a lot of strep, lots of allergies, etc....I think perhaps igg shots were easier to get at the time, and my doctor saw that I has a significantly weakened immune system just through how often I was getting sick. Guess it seemed like a logical choice to him. The most I ever had in the way of diagnostic testing was the series of scratch tests. I know our stuff seems crazy! Like maybe it doesn't respond in the way everybody else's illness does. And I can buy that because we have
  6. Her only real test that points to autoimmune (possibly) is a high TPO--but only mildly high. And, of course, we have a family history of autoimmune as long as my arm. I took IgG shots weekly as a little kid until I had my tonsils out. My dad died of complications from an autoimmune issue--Wegner's Granulomatosis. She had a high Cam Kinase II level. Other than that..... I did check our insurance company's website even before we saw the immunologist, so I knew that chances were slim but was hoping for some fancy wording or something that would turn the key. I know that our neurologist
  7. You give me hope!!!! Had he previously had igg testing with an immuno? Hers was normal, and apparently abnormal on that was what we needed for ins.
  8. Nothing that we tested for... He said he wasn't finding lyme/Bart/babesia. We have treated for parasites, viruses, he didn't find those either. We've done urine testing for heavy metals--nothing was too high, and our doc doesn't think that is an issue. We just did the urine test for kpu...she was within normal range, but I think supplementing has been helping her brother. I asked him about that doe her, and he worked with her, said she could work up to 7 CORE. He gave us a lot of supplements to help boost immune function. And some just to keep lyme . and co at bay herbals. Ha
  9. We saw our lyme doc at the beginning of last week and a new immunologist on wed. Our lyme doc thinks that lyme/Bart/babesia are not issues for her right now. We have treated for parasites, viruses, tested for heavy metals. Through ART, our doc disn't really see mold as an issue. I was so excited on wed when the new immunologist said he thought we should pursue ivig. He took many, many vials of blood, and I was so sure we'd be able to justify iviG to insurance. But...I just got off the phone with the immuno's ofc, and her blood work will not convince the ins co. So....the nurse su
  10. My daughter is schedes for a lumbar puncture next week. She will be sedated. Could you ask for some level of sedation? I've never had one, but the nurse compared it to an epidural.
  11. My daughter is schedes for a lumbar puncture next week. She will be sedated. Could you ask for some level of sedation? I've never had one, but the nurse compared it to an epidural.
  12. My dd9 (at the time) had a horrible time for a good while after her t &a, BUT, she wasn't on any abx at all. I would think that the abx should shorten the length of trouble.
  13. I have a dd11 that has big issues with rage, clothing sensitivities, etc. She has lost so much executive e functioning and lost math ability but does not appear ADHD In the traditional sense. She just can no longer function academically. She spent 4 years on psych meds ---but only one ssri (which was horrible). She had been off of all psych meds since feb, but within the past week or so we put her back on a very low dose of abilify to take the edge off more than Advil. Advil would calm her rage but did nothing else. We are hoping to have Ivig before the end of the year. I am telling th
  14. We have seen him as well. he did a lot of testing for us and was very kind and looked at all corners. He gave us another abx but then I think stood back a little knowing that we were seeing an LLMD soon after.
  15. We are in a similar situation with my dd11 who has been having constant rages, issues with clothes, you have to breathe the right way (and there is no right way), chew the right way, etc. We just put her back on a low dose of abilify to take the edge off due to quality of life. By no means is my daughter well, and we are doing some other testing like MRI and lumbar puncture. But I would say this....we see an LLMD in Colorado because, while he does treat aggressively with abx, he also uses lots of herbals and supplements. When we started treating this, I scheduled an appointment wit
  16. My daughter is not aving a "flare" in the classic pandas sense.....but she has PANDAS and is so out of control that we have to do something....This is the reason we have been looking for ivig....we did 't even look at it as an option for a long time. But now, 8 years after all of this started, I have to consider everything as a possibility. Her thyroid tests were fine...except for tpo, which could be an indicator of (but is by no means a diagnostic tool in and of itself) an encephilitis....we have an MRI and a lumbar puncture scheduled for that. But our neuro is not a pandas doc and wou
  17. We saw our llmd today, and we were discussing my daughter and whether it would be beneficial to pursue ivig. (We also discussed mold, etc.). He was leaning toward no or not yet....so my question is....is it enough to have a cam kinase II level of 178, and does that ever lower on its own? My daughter's test was almost 3 years ago. That score (along with normal strep titers) did not make our immunologist talk about ivig or the like--even when I mentioned it. This was in feb. We are seeing a new immunologist Wednesday who deals with pandas.... So my question is...should I emphasize th
  18. I will try that. I know that parasites have been an issue for her. She is currently taking Alinia, and we have done some other anti-parasitic treatments, but maybe not enough.
  19. Oh, the moving issue....ugh. I am afraid that we could move into the very same situation. We have four rent houses, and I have seen moldy vents in at least two of those....particularly during a hot, hot summer where I assume mold is so easily made due to ductwork in the hot attic and condensation forming. We have talked about moving to our favorite place...Colorado, but then there are basements.....Guess we'll think about all that again. What kind of doctor to we see to get cholestyramine.....assuming our LLMD does not write a script?
  20. I think this makes sense. I have talked to our LLMD who we will see within the next week to ask if he can test for mold, also (through ART). Maybe I need to have her do the blood gene test when we get back. I assume that if our LLMD finds mold through ART he will prescribe cholestyramine, but if he doesn't....do most naturopaths do that? How else could I get it?
  21. Woweeeee!!!!! Congratulations! That IS amazing--no evidence of autoimmune in blood! So happy for you!
  22. We are spending so much right now.....I guess I will try to see what her genes say first. Does that make sense to do? Can you tell me what the price range was for testing? (You can pm me.) We are in Texas, so unfortunately, I guess I'd have to go by web reviews. Did you have a moldy smell in your house? We don't have one, but if we have been gone for a few days, when we come back there is a musty smell. We live in a very hot, humid climate, in a house built by a tract builder that I KNOW cut many corners, so I am not sure of how to keep our a/c vents perfectly clean....I have seen o
  23. Thanks for those links. Will check these things out in detail.
  24. Interesting thought.....my husband and I are both positive for lyme (as are all of our children), but we don't have any symptoms that just jump out as lyme or mold or anything out of the ordinary...right now. I have sore soles in the a.m. (our LLMD says I don't have Bart through ART, but?), and my husband has spells of migraines. BUT.....when dd11 was 8 we did a yeast detox diet complete with nystatin, diflucan, a lot of vit d, vit c, fish oil (2 TSP), and although we did not completely get her off of her psych meds at that time, we were able to significantly reduce them. She was not
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