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.

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 was the 2+ years on Augmentin, followed by combined antibiotics (as part of Lyme treatment). I guess I'll never know. But at some point we decided to stop Lyme/PANDAS treatment, as there where some symptoms left that were not going anywhere. Homeopathy is taking care of those. I am hoping to slowly get everyone treated, as in our experience antibiotics do not provide a long term solution (well, unless we could put the whole family on hard-core abx for a long period of time?). But I wish someone would take this seriously and find out what the heck is going on. It seems in our small town, strep is constantly going around. I know of several families (just within the homeschooling community, pretty small percentage of the population) affected by PANDAS, some with more than one child, and other families who are just dealing with recurrent strep infections. There must be a particular strain that is causing this, maybe one that is resistant to the commonly prescribed antibiotics? I know in the past they have isolated specific strains that are more likely to cause RF, it would make sense that we are dealing with the same scenario here. A friend of mine suggested I contacted the state's health department. She actually called them herself! They were clueless of course but then called her back and referred to the NIH page... sigh!

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 like one normally would?

I think for us it was about 3k counting hospital and all... and that is with the "negotiated rate"!

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!

Oops, I meant to say that part was NOT expensive, our insurance pick up the bill for all the labs through Labcorp.

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.

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 pray every day for discernment for him. I don't want to make any more decisions, I don't want to be caught between my children and my husband. I can't carry all this weight on my shoulders by myself. I know some of you may disagree with me, but I am just sharing what is bringing peace in our family. Are my children all well? No, but we've found a path that is bringing us relief and is manageable both logistically and financially. We can't just get them all seen at the same time (yes, we are seeing now that we clearly have at least two definite PANDAS, possibly more, and there is also Lyme Disease in the mix). We started with DS13 (our original PANDAS), and this month we started addressing DS15. I prayed and waited, and for in both cases, I "planted the seed" and waited for DH to say, "let's make an appointment with the homeopath." It was a leap of faith for him, but he saw results and continued to the second child, and now he said we can schedule dd11 for November (after we recover a bit financially). He has chosen to work overtime to pay for all this extra stuff. It was his decision and I admire him for that, rather than resent him dragging his feet like before. So how did I get here? At some point I just had to trust God. Trust Him to guide us. Trust that He put my DH at the head of this family. And that with prayer is bringing us peace. I am not judging those of you who have had to make hard choices. I know many marriages are under a lot of stress over this illness, and I know some have even had to split for the sake of their children. Each person knows their own stories and why they had to make those hard choices. I hope this just helps someone out there. And I also wanted to share that we saw Dr. Bouboulis a while back and he did from the get go run a lot of tests (he gave us the list and we run them through our local pediatrician, so that part was really expensive because it was all covered). He then asked us to run all the Lyme/co-infection tests through Igenex since ds had four bands positive through Labcorp. We never did get to that, we just proceeded with Lyme treatment locally (we are in VA). I really liked him and I see from some posts here he is getting more knowledgeable about Lyme/co-infections, so I would totally recommend him for someone who needs to find out what really they are up against. I think the fact that he accepts insurance (and even if it was out-of-pocket, I think the original consult was only about $300) speaks volumes about his sincerity, compared to some LLMDs out there who charge an arm and a leg and do not take any type of insurance. Wow, that was long... I really mean this well, please do not feel judged in any way. Just sharing my experience... Isabel

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.

In ds's case, the homeopath took a long time going over his history since birth, illnesses, personality, etc, etc, etc. So they do try to get a picture of the person "before PANDAS" so to speak. And, it may be that after a while, when his main and most severe symptoms go away, we may have to change remedies. But so far so good for us We are working with a wonderful homeopath who is not afraid to change course based on what she hears back from us.

i just have to shake my head in sad disagreement with you. funny -- we're the 'lucky' ones, huh? I think she means we are the lucky ones to be in the right path, or at least to understand our kids are not just being crazy or difficult, THEY ARE SICK. Just think of all the kids that may be being treated with psychotropic drugs that are not really curing anything and possibly just messing things up more Let us pray for one another and for all those families out there who are dealing with the same scary monster we are dealing with, except they don't know what it is and probably fighting with the wrong weapons!