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Everything posted by matis_mom

  1. Sorry to reply so late... No, we have not tested titers again. We basically have not been to the doc since we started homeopathy. I do not know about carriage, it would be interesting to find out. In our family it seems we all have a tendency to get strep. When people start acting crazy, I know there is strep around! But I am starting the younger kids with a local homeopath and hoping we can stay off of antibiotics. My "original" PANDAS is now 14. He is doing well and will still react but between the nosode and the constitutional we can nip it in the bud. Sometimes I feel a little unea
  2. So wonderful to hear your update, Stephanie! I have not been here much lately either. We started homeopathy in May 2011, and so far so good! No antibiotics since then, no supplements, nothing. Just his remedy and the nosode as needed. DS14 still "reacts" to strep, but like you said, we can nip it in the bud. Being older he can tell me "I need my remedy", and it brings him back. We have had to learn to dose at the right time/right strength but we are slowly getting the hang of it. We've also started my oldest on it after a very sudden change of personality (right after a tick bite AN
  3. Homeschooling would be a good option for you, I think. We've always homeschooled, so for us it was easy to deal with the PANDAS monster and not have to deal with teachers/etc. But it sounds like at this point being in that special ed class will do more harm than good. There are many good programs out there that will "walk you" through each day, so if you have a dedicated parent at home, it can totally be done. It might be just a great oportunity to spend more time together and help him gain confidence that he CAN do it. Plus you have the added benefit of reducing exposure to whatever old
  4. I had my tonsils out at 40! That was last year as a last resort. But just a word of caution, you can still get strep, and it's almost trickier because without tonsils there are less symptoms! We just "caught" dh with strep (no pain, no fever, NOTHING), and his tonsils have been out since he was a little boy. We can't seem to get away from it! Thankfully, with homeopathy, our PANDAS children had a bit of a flare but are settling back down, praised be God! Hope everyone recovers well, just be patient, it takes a while... It helps if you've been through it yourself, you can understand t
  5. Wow, what a blessing! It will surely make things easier for you, nice to get a break every now and then!
  6. They also gave my son Cipro (only a few days, maybe like 4 or 5?) after the tonsillectomy but they prescribed anti-yeast meds along (I think Diflucan, but can't remember). They emphasized it was super important to do the yeast meds, so you may want to check with the doctor on that and keep giving him the yeast pill you mentioned. We did not see any flairs, but ds was wiped out for a good two weeks, and in a lot of pain. Also, they had given him something with Codeine (sp?) for the pain that did not sit well with him at all, instead of making him sleepy it made him jittery and so he could no
  7. If you are thinking of taking it internally, what we've done in the past is put it into capsules. You can buy the empty capsules online (or sometimes they have them at the health food store), put a few drops in, and then swallow the capsule without ever tasting the Oil of Oregano. So as long as we can swallow pills, that should work. Isabel
  8. I've been searching around and one common sources is hot tubs... any chance that could be the culprit? Just in case, I would bleach the bathtub at home, and make sure you run all towels and linens through the hot cycle with a bit of bleach. But apparently it also leaves in the soil, so just make sure, hard as it may be, to have him wash his hands often, and maybe keep that wound covered if you can. Also, it seems Oil of Oregano is quite effective against it. We have used it on anything from cold sores to infected wounds and it works great (although sometime it may really sting, depending o
  9. That is so weird! After months of getting treated for strep with different abxs (and it just kept coming back, my tonsils would not go down), I finally got my tonsils removed. I insisted on a culture, and it revealed, not only strep (in spite of all those abxs), but also pseudomonas aeruginosa, which the sensitivity test showed resistant to nearly everything except Cipro. When I went for a follow up with an infectious disease specialist he gave me two Bicillin shots right there and then and sent me home with a prescription for 2 weeks of Cipro. I did not have any side effects from it, than
  10. Years and years ago, before we even knew about PANDAS we were visiting my sister and all her kids had conjuctivitis (one child had to be hospitalized with it!) We were staying with them and thought we would get it for sure. All I could think was to tell my kids to wash hands often... that was the beginning of my sons OCD handwashing! We never did get conjuctivitis, but I really think it was a form of strep and that the handwashing was one of the first PANDAS symptoms for DS. It turns out my nephew (who had it pretty bad, but he was not the one hospitalized) later went on to have selective
  11. Glad you are feeling better! It's tough when you think you can see the light at the end of the tunnel, you start getting comfortable, and then WHAM! Someone shuts out the light Been there. But at least you know they CAN get better, even if they relapse, they can still get better. But, I just wanted to share this thought... when my kids are "pandasy", I'm also "pandasy" in my own way (I truly sometimes feel I am loosing my mind!). More than once, I was "it" (had my tonsils out since, but still...) We tend to focus so much on the kids we don't take care of ourselves sometimes. If you
  12. You want raging poison ivy? Do what my girls did... they did not know what it was, they just thought it was neat that the sap was black, and were drawing in the sidewalk with "black ink"... well, one of them ended up needing IV steroids because her whole face was blowing up like a balloon and her eyes were closing... And this was after starting the regular course of oral steroids. So come on over, we have plenty of poison ivy around!!!
  13. So glad you are seeing such wonderful progress!!! Could you share your source for Ibedonone? Since starting homeopathy we ditched EVERYTHING: antibiotics, probiotics, vitamins, minerals, diet (well, we try to stay GF for the most part). Now that we've had a nice break, I feel we can start slowly adding things back, and your post makes total sense to me... a good starting place.
  14. My only advice is... get it checked by the doctor. It does not seem like a mere rash from your description. If you can't get to the doc, at least call them and see what they say. And take pictures if you can.
  15. Very interesting... do you have any more info. If so, please PM me! We are doing well with homeopathy for PANDAS for my sons but I know Lyme is involved too and some of us have "just" the Lyme/Bartonella part... Thanks for sharing! Man! I just googled it and could not find anything in ENGLISH!
  16. Very interesting... do you have any more info. If so, please PM me! We are doing well with homeopathy for PANDAS for my sons but I know Lyme is involved too and some of us have "just" the Lyme/Bartonella part... Thanks for sharing!
  17. Well, we never went the Igenex route, but my son was tested repeateadly at the beginning of our journey (the doctor said "PANDAS with underlying Lyme" on the very first visit). Test after test, even through specialty labs, all negative for Lyme and co-infections. So we left that LLMD and went to a PANDAS specialist. Saw good results but always kept sliding back. Two and a half-years later, all the while on antibiotics, he gets four bands positive through Labcorp right before plasmapheresis!!! So, there is no way to be 100% sure one way or the other. Follow the treatment that seems to
  18. I am so sorry to hear things are getting worse again! In our case, we've been passing strep around among ourselves for over three years now. We've all been on antibiotics, dissinfected everything, always changed toothbrushes, etc. I finally had my tonsils out. Still, some of my younger kids are getting it and not having the "typical" symptoms. I believe in our case Lyme is involved and that is why we cannot seem to kick it, no matter how many antibiotics we try. But, THANK GOD, PANDAS ds is not reacting as severely as in the past. I think homeopathy is working for him. Or maybe it wa
  19. Wow Vicky! Your story sounds so much like ours!!! Except we've been on the PANDAS path a lot longer. Anyway, I too I am giving it a try for my other kids, and I think it is helping. Like yours, my other kids are not as bad as my original PANDAS, but after you've seen it in a child you can tell much sooner. I agree those consults are therapeutic in and off themselves! Hi Stephanie, I'll definitely be trying Arnica soon... I'll keep you posted. It makes sense as it is usually seen as something to reduce inflammation/deal with trauma. Did you dilute it or just give a few pellets l
  20. I think for us it was about 3k counting hospital and all... and that is with the "negotiated rate"!
  21. It sounds like he took a good long time to listen to you, and that's a good sign. At least you will rule out and big immune issues. Hope this is the beginning of some answers for your family!
  22. Oops, I meant to say that part was NOT expensive, our insurance pick up the bill for all the labs through Labcorp.
  23. I will look for it and let you know when I find it. This is the list from about 18 months ago, so you might one that is more updated, but it is pretty comprehensive.
  24. I just wanted to add that I know how you feel about your DH not being on the same page. I was there for a long time, and still are in a way. My only advice is this: PRAY. Pray for him, as the leader of your family. Pray for yourself, that God will give you patience. It is so hard to watch your kids suffer and feel like your hands are tied. Moms see things dads just don't (don't shoot me you guys!). It just takes them time. Sometimes a loooonnng time. My approach these days is to just plant the seed, throw out a comment, ask a question that will make him really look. And pray. I pra
  25. I am pretty sure there is Lyme in our family... PANDAS DS13 had a positive test through Labcorp, my husband had it, my 7yo son just this summer... Anyway, I think that is the beauty of homeopathy: that you don't need to go crazy trying to figure out what the specific infection is. You just strengthen up the person and let the body take care of whatever it is.
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