matis_mom

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 uneasy and get that "what if" feeling. If I had the means to have follow-ups with Angelica more often, I'm sure things would be even better, but we are managing just fine for now. We were all soooo burned out from doctors appointments, pill taking, mounting medical bills. Homeopathy basically gave us all our lives back. I am forever grateful to Stephanie for sharing her story. Someone mentioned the high price. Our local homeopath charges $200 per hour, so $600 for a 3-hour consult sounds about right to me. Going to a specialist (especially if you have to travel) will cost about the same. Also, many classical homeopaths will NOT tell you the name of the remedy they give you, so you are basically stuck going back to them. Angelica is very open and you are free to order your own remedies (which are very inexpensive even when ordering from England!), so we've been able to manage on our own for quite a while. Hope everyone finds their way to health, whatever path they may choose! God bless, Isabel Stephanie2 and MatisMom, have you done any blood work to see if any of the titers are still high? I'm just curious, because I wonder if they are getting relief, but not getting rid of the infection, and putting them into a carrier-state.

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 AND being exposed to strep!). We were able to get an appointment with Angelica right away and it totally brought him back! He can tell also when his thoughts are not really making sense and will let me know. He does not need his remedy very often but it's so good to be able to "keep him sane" with just a little pellet. It truly is amazing! We are starting the other kids with a local homeopath since they all have had tick bites and they all have been getting strep a lot. So far so good, and we plan to keep on going as the local docs cannot seem to find a better solution than to prescribe antibiotics as needed. We were blessed to find someone not too far who is a classical homeopath but also an MD. For true "PANDAS" it totally recommend Angelica, but for my other kids I was looking for someone local to take the place of the pediatrician. I have to say our pediatricians have been very nice and trying to help but they really have nothing to offer beyond acute care. I cannot sit and wait for everyone to "go PANDAS" on me! Well, not to take away from Stephanie's good news, but to encourage those who've tried other venues to give homeopathy a try. The initial cost can be hard but in the end it ends up being less expensive and for us definitely more effective than conventional treatment. Isabel

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 the other kids may be carrying each day Just be sure to check all the legal aspects of it, which vary greatly by state. You don't want to add a battle with the school system/social services to the mix! HSLDA (Home School Legal Defense Association) can help you figure that out, or just get in touch with homeschoolers in your area.

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 the pain better

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 not rest even though he was tired, so I just switched to ibuprofen/tylenol (alternating) and he did much better with that. The doctor completely agreed with the switch, and it managed the pain just fine. The nausea/vomiting could just be from the anesthesia, they also sent us home with a prescription for Zofran (I think?) but we never did fill it.

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

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 or where you are applying it) I also run into another article that described how pseudomonas aeruginosa "invades" natural killer cell, thus affecting a person's immune system... hmmm.

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, thank God, but yes, I hear in children it needs to be monitored carefully. Good to know the OLE is working for your son and things are looking better! For us, after 2 years of PANDAS/LYME treatment, homeopathy has been the thing to get us on the road to true healing. If that is an option for you (I hear Australia has some very good homoepaths!), I would definitely explore it, particularly since conventional medicine seems such an ardous road over there. I don't check here often so if you have any questions please PM me.

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 mutism (would not talk at all in school for YEARS, he is better now). He also was showing lots of anxiety symptoms at that time...

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 get a chance, get swabbed and titers drawn, and a physical if it's time for it.

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!!!

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.

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!

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!

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 give you the best results, but before proceeded with something more intrusive like IVIG or plasmapheresis, I would recommend checking again, just in case. Just our experience.