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sss

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Everything posted by sss

  1. Before we found Lyme (and I've never seen a tick) we did 2 HD-IVIG's for dd, then 6 yrs. old, about 6-7 weeks apart. 1st one was rage city, 2nd one was a bloody miracle right out the gate- happy, content, wonderful play w/ sister, etc. Until it wore off 4-6 weeks later. Having said that, and after many treatments for infections 3 years later, if we were offered a free (key word: free) high dose IVIG right now, I'd do it for her. Although her IgA is a little low, and that scares me for IVIG. We paid cash for the first 2, and even if insurance paid for a new one, we'd have to pay 20% of it.
  2. Got a little teary! Do you think he'll go to college far away? And what are you going to do when you're free? (lol) That seems very far away over here ;-). And I'll be about 80 yrs. old. I am so happy for you. You have given so much here and helped many--
  3. Wow, I'm so sorry! I would think at this rock bottom point, dealing with metals is not the priority. Getting her stabilized is- has she ever had a high dose IVIG? Something for inflammation/ to calm. Sending good thoughts--------
  4. Do you think 1 antibiotic daily like Azith or Biaxin would blow his gut out? If he stays away from sugar, keep up your probiotics, I don't think it would. I thought Maryaw made a great point- I've been seeing it right in front of me this year- daily Biaxin has been a game changer- no Myco P here, tried taking her off for a switch out- yeah, no go, Dr. agreed with me to go back to Biaxin. Have to wonder if it's an anti- inflammatory aspect- Started Enhansa (Curcumin) today to see about further anti- inflammatory- and yep, still use ibuprofen. I hear you about the school setting- we are ramped up from it after a mellow improved baseline summer. While I don't currently hold a job outside the home, my PANS dd would do NOTHING for me in a home school setting- I mean it. She holds it together at school and wants to please a teacher. Me? Forget about it. She needs the outside school for education- there would be none taken in from me. This I know.
  5. If you think there are no underlying current infections, have you considered a short steroid burst?
  6. Thank you for the replies here-- very powerful.
  7. We did try ADD meds while on a break from treating infections/ PANS. One worked for literally 1-2 days- like a shock to her system, then back to the same behaviors. Actually tried increasing the dose, same results, increase again, same results (shock system, acclimate.) Too high dose/ too scary/ same thing. 2nd ADD drug we tried immediately put her OCD to crippling. So a big NO for us. So, moral of the story, these kids all react differently.
  8. In our area, the Park and Rec department offer lots of various classes for that age group- art, fun math, gymnastics, etc. Offered once or twice a week- maybe you could find something like that- might be a cleaner, smaller environment. That age group is really tough tho will passing sickness- last year my youngest was in first grade (age 6-7 then) cooped up with 30 kids sharing everything, they have no clue about personal space and talk 1 inch from each other's faces, breathing on each other, coughing, etc. She brought home bad infections all last Spring :-/. Had her own rounds of antibiotics for the first time, and it ramped up my PANS dd9. But, prompted us back into treatment. Azithromycin is considered a good prophylactic with the long 1/2 life, less dosing, theoretically then less stress on gut- and anti inflammatory. Sounds like you have good supplements in place too.
  9. Are the kids on a prophylactic antibiotic? Yes, could very well be a reaction to being around another carrier/ infected person. This is the very difficult thing about this, having them live life and grow/experience (which they very much need) yet carrying this illness/ immune system. Trying to build my dd's immune system w/ all the usual stuff (vit. C, vit. D, etc.) tried goat colostrum, big no, threw the bottle away, next trying beta glucans. But I feel 'better' this year at least she's back on an antibx in case. Last year she wasn't, and reacted to her sister bringing home school illness.
  10. Yeast is okay per recent test, complete viral panel came back great (nothing elevated!) no Myco P. CD57 only 26! Also a finding of bacteria from nasal swab (not a fungus or staph) The surge of OCD last night, vocal tic noise this morning seemed like die off to me--gave lipo glut, Burbur after spacing a.m. antibx. We have an appt. next week, meanwhile, I am giving another goat colostrum after school... Thank you both again, it is concerning me the low IgA, some other classes on the low side. Will see how that goes.
  11. Thank you Rachel and SF. *sigh*. You guys can say anything you want to me. We did do mold- house inspection, minor repair in garage done by the mold people, ERMI testing, Hepa air filters, Hepa vacuum, air samples, neurotic mother w/ the clean/dust/never clutter, 2-3 months Cholestyramine powder, etc. I really sense her school is okay, it's not the school. BUT, it was back before the Real Time Labs urine test was available, so we haven't done that test. The low IgA scares me too much to consider another IVIG. I didn't want to do another anyway, really, and these results made it an easier no decision (last IVIG's 4 years ago, IgA wasn't low) The Goat colostrum company emailed me back and said the casein is negligible, and of course a very different protein type from cow. So, continuing colostrum will help her body fight infections, yes? Also raise white blood cells to help?
  12. Had a recent immune panel run on dd9, low IgA, others in line, but 1 of the others on the lower end of normal. So I buy goat colostrum capsules. We are GF/CF, the goat colostrum is suppose to be casein free? Anyway, give one for first time after school, an hour later, a new OCD idea pops up relentlessly in her head. We aren't seeing OCD anymore really, this was a surprise. Get her into Epsom salt bath, bed. Wakes up very grumpy, some vocal tics. What do you think? Should I try another capsule of goat colostrum today? Thanks for any feedback.
  13. Yes, given at same time. Also remind good probiotic 2-3 hours away.
  14. Well, my post led me to research blood/ brain barrier, interesting, thiamine B-1 deficiency came up (in relation to MS relapses) and found a smart bio- med mom say recently adding thiamine was a wow. I am going to try it-
  15. Did your LLMD suggest a change of antibx/ different infection? Could it be yeast/ gut? It seems our kids are alike. We also had a very good summer- then school started last week. Very stressful for dd. regression at home. Seeing a new tic/ compulsion with her legs- I've never seen it before- started before school started- we've had no med changes. The hard thing: so stress makes the brain barrier more permeable, more attack on the basal ganglia? So how am I suppose to fix that? The kid leads a pretty stress free life, wants to go to school, home schooling out of the question. HD-IVIG- helps seal the brain barrier? As long as infections are very down? I don't know. We have appointments next week with our specialists, will probably switch up antibx. Meanwhile, I realized I was also very stressed around school starting, and it was making it worse. So now I'm trying to chill out more. Can't control it all. We have updated all testing, that has been revealing. Anyway, hang in there--
  16. I am thrilled to hear it! My God you worked so hard- it's just outstanding. What fine young men. Thank you so much for posting, and all you've done in this community.
  17. What do current Myco and strep titers say? Has she ever had a HD-IVIG? (sorry, I don't remember history)
  18. It's actually ME who has the fear of medical procedures, so much so that earlier this year I finally (after too long in anguish) agreed to endoscopy/ colonoscopy, which is usually outpatient, but I needed the hospital setting with Versed. Still had panic attack in the hospital room until they could give me meds/IV. My PANS dd9 'hidden extra tooth' came up on x-ray 2 years ago. I had a Sr. dentist and ortho give me their opinions- which was what I wanted to hear; leave it alone. And I have selectively tried not to think of it again ;-) PANS dd9 has had no medical procedures (besides HD-IVIG's) or teeth needing pulled. She seems to lose her baby teeth easily and early. Sorry your son's had come up, creating problems :-(. Get it out and over. My DS 16 (non PANS, etc.) has had to get teeth pulled 3 times at dentist, this kid never lost his baby teeth, crowding, crooked, etc. we used the nitrous at the dentist office- no idea if he has a MTHFR, but he may, since I have A1298C. Anyway, he never felt great (nausea) after procedures, and 1 time threw up in my car on the way home because he ate pizza right before, but nothing adverse or bad. I would think if your DS can take a little Valium before procedure, then the gas, it really is easier- and cheaper...
  19. Oh guess what? My PANS had a supernumerary tooth, too- yes, I could have used some Valium myself when the dentist showed it to me on her x-ray a few years ago and tried to explain it to me. The nitrous oxide I believe is a MTHFR/ B-12 thing- do they offer something else at the dentist? Besides just Valium? Versed (sp.?) is the anesthesia they use in the hospital, and it's a beautiful thing- asleep, then awake, no memory in- between, all good. However, that requires an IV, and prep work appt. before hand because it's a hospital procedure. I have medical procedure phobia myself-
  20. The start of school has been horrible here :-( And it's only day 3! But we had a good summer- dare I say one of the best ones, and we have now completely regressed at home again, as she holds it all together during the school day (no other changes have been made.) It's brutal to slide back, I feel you. I bet adding the antibiotics back in will help your son a lot--
  21. We have never had a Bart rash or markings. Generally it's recommended to treat until all symptoms are gone.
  22. Well, mag citrate and especially mag oxide tend to move the bowels more. Any magnesium. Vitamin C, too. As you know, the fear with the fluoroquinolone is the possible tendon issue- don't know if you can keep her less active/ not sports type thing. I hated that Epsom salt bath every single night, but was paranoid enough to make myself do it (with 4 cups of salt, at least 20 minutes, the dry brush beforehand opened up the pores.) Maybe you can bribe her to take more-- Sorry, it's hard, I know.
  23. Hi- you may want to PM Hopeny, she shared here (I believe) her dd was doing Cipro this summer for a particular strain of Myco P. You probably know: load magnesium to offset any possible tendon issue away from meds. I found daily Epsom salt baths w/ body brush before every night helped me too when on a fluoroquinolone antibx. Maybe start them separately, build slowly on rifampin...
  24. Well, I am tempted to buy it for myself as my sleep is and always has been in need of improvement, and I've tried everything (but this!) However my supplement bills are insane right now, but I've bookmarked this... I eat Paleo so I think my glycine is already good, tho- but no testing to back that up. Do you think your dd's glycine was low? Thankfully my dd gets a solid 10 hours straight through every night w/ melatonin- Thanks Nancy!
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