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Need treatment advice......


Dedee

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Arial95---I am curious what Dr. M generally does to treat Pandas? Especially more "chronic" cases? I haven't heard of her using steroids, or IVIG. Is it antibiotics or broke? What if they don't help?

 

Dedee,

 

Sorry, it's early, so I've only skimmed through the responses, and really have nothing to say about Lyme - it's not an avenue we've found a reason to explore. But we are at a similar crossroads as to treatment paths, so I can empathize.

 

Our issue is chronic re-infection, 2x already in 2012, after amazing results post T&A last November. He's confounding our pediatrician as well as Dr. M's team.

 

After our next appt, March 7th, with Dr. M, we may look to add another PANDAS doc to our team, with guidance from our pediatrician. DR. M has been good for us for many reasons, not the least of which is she takes our insurance and is local, but we're at a point where we might need some new ideas!

 

I understand your frustration, and your husband's reluctance to keep adding doctors - but each case is unique, and I don't think there's an easy "one-stop" shop sort of answer for our kids.

 

Good luck, and keep us posted on how you're doing!

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Again, thank you all for your caring responses. Your experiences and suggestions are invaluable. We had an interesting turn of events today. I took my daughter to our pediatrician so they could check the rash on her bottom. Pediatrician said it was peri-anal strep (as I suspected). Daughter had been on Zith 3 days a week in addition to her Minocycline. So the pediatrician gave her a 10 day round of Augmentin. My pediatrician believes in PANS but is still very hesitant with the antibiotics. I usually get them from the Integrative Medicine doctor we use but I was unable to get through to her today. I believe my son probably has anal strep also because he was complaining about 2 weeks ago of the same thing and I sort of ignored the whole thing. I’m not sure why I haven’t seen this as a possibility before. She gets this same sort of problem every few months. I’m not convinced this is going to solve everything. After all, she got a 5 day run of IV clindamycin about a month ago. I would have thought that would take care of such issues. Evidently not. So I guess we will see where things go with this. I think we are still planning on seeing Dr. B the end of March. I have been searching and searching and there doesn’t seem to be any good LLMD’s anywhere around us. Clearly going to be another full day trip somewhere. Question will just be where?

 

My son is seeing some improvement since we started Lexapro. Nothing huge, but he says the thoughts aren’t as persistent. After researching more on his previous Lyme test, I just question more what the previous doctor had told us about those results. He had 2 bands that were Lyme specific which the doctor at that time said meant it was negative. So we just continued with the Myco P treatment. Even now with the Myco titers being back to normal (and the symptoms persisting), the doctor still doesn’t mention pursuing Lyme. I don’t get the idea that he is part of the “real” LLMD list. So I guess the question is should I try to get some Lyme tests done for my daughter and possibly test for other co-infections in my son prior to going to see Dr. B? I just really wonder how an LLMD will read his results.

 

All I know for certain is that something around here has to give. We are on our last leg with these two kids. My daughter especially is so difficult to deal with. I need some answers and some action…..Quick!

 

Dedee

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DeDee, I will respond to the issue of mycoplasma pneum, because I personally have it. Everyone else in my family had really specific lyme symptoms, and my DH actually tested completely positive on the Quest WB (igM). But, the problem was that no one else was really testing 100%, but we were all really sick, and although PEX and IVIG, and even steroids (very occasionally), and ibuprofin, and abx worked great on my kids...short term, it just wasn't taking care of the whole problem. My only problem (that I knew about at that time), was the chronic mycoP.

 

Well, then I found out that MycoP can be a co-infection of Lyme. We all started treatment with an LLMD (in MD...if you want the name, PM me), and slowly we are mostly improving. MycoP does not tend to clear up quickly unless it's a brand new infection. But, by the time we found out that I actually had it, it was at least 3 years that I had been very sick. Every time I get off azith, I relapse. As treatment has progressed (it has now been 1 1/2 years,) other symptoms have popped up, like foot pain (I believe bartonella,) tingling and numbness in my hands at night, and more. DS16 who was by far the least positive of all of us on the WB, just could not get even closely well...no matter how much we treated very aggressively for PANS. Like your's, our son would get better for about 3 weeks at a time, then constantly regress.

 

Then, I read about the "bartonella rash" (on the lyme forum), and I looked it up. Lo and behold...it looked EXACTLY like what my DS16 had (looks like stretch marks, but are very reddish/purple, because they are full of blood.) But, it wasn't until May 2011 when we treated with IV abx (clindomycin) that they actually started going away. That's when I became positive that we really were dealing with tick infection. I didn't really want to deal with one more thing, and honestly, until that point, I was ready to stop all the lyme abx, because he just wasn't getting better enough, and I didn't think it really was lyme/co-infections. I then did the Igenex co-infection test, and found out that he was positive for Erlichiosis (which he definitely had symptoms of when I looked it up.) Bartonella and Babesia came back negative, but as I mentioned, the rash was a 100% definitive diagnosis, and he had symptoms of Babesia. So, I'm now glad that I pursued it, although not everyone is going to have the same experience.

 

Personally, I am glad that I have pursued it all. We also treat with a lot of supplements, and see a holistic chiropractor who does applied kinesiology (manual muscle testing) to work on the immune system. We also treated extensively with IVIG, and I do think that helped a lot (insurance won't pay now.) We are doing weekly bicillin injections (I pay, because it's not covered on our insurance), and fingers crossed...this seems to be helping at the moment.

 

It's hard, and yes, he still gets sick a lot, because the immune system in our case is so messed up. But, as I pointed out to the kids last month, the rages are under so much better control, and other issues have improved, too.

 

Dr. B. is going to recommend that you get Lyme testing, but he does not treat Lyme. That being said, different lyme docs diagnose different ways (the blood tests can be pretty inaccurate...false negatives, in my experience), and if you suspect it could be Lyme, you might want to find a lyme doc now, and at least see what happens that route. Personally, I know that I would have always been wondering. it honestly has been since starting the Lyme treatment that many of the worst symptoms (such as rages) have calmed down tremendously in our case. But, it is still a long road.

 

Cyber hugs, no matter what you decide.

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I think that abx are her preferred approach, and what she focuses her research on. She will do IVIG, but only if there is also an underlying immune deficiency, which I know is the case for many here, just not for us!! We haven't discussed steroids for a while, but she wasn't supportive of that option when I asked last, concerned about the potential

For steroid induced psychosis I think, but I can't be sure if that was her general stance on it, or just her opinion in our case because our son was not quite 3 years old at the time.

 

 

Arial95---I am curious what Dr. M generally does to treat Pandas? Especially more "chronic" cases? I haven't heard of her using steroids, or IVIG. Is it antibiotics or broke? What if they don't help?

 

Dedee,

 

Sorry, it's early, so I've only skimmed through the responses, and really have nothing to say about Lyme - it's not an avenue we've found a reason to explore. But we are at a similar crossroads as to treatment paths, so I can empathize.

 

Our issue is chronic re-infection, 2x already in 2012, after amazing results post T&A last November. He's confounding our pediatrician as well as Dr. M's team.

 

After our next appt, March 7th, with Dr. M, we may look to add another PANDAS doc to our team, with guidance from our pediatrician. DR. M has been good for us for many reasons, not the least of which is she takes our insurance and is local, but we're at a point where we might need some new ideas!

 

I understand your frustration, and your husband's reluctance to keep adding doctors - but each case is unique, and I don't think there's an easy "one-stop" shop sort of answer for our kids.

 

Good luck, and keep us posted on how you're doing!

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Arial95 is right. Dr. M usually does prefer the antibiotic approach. We have seen her with our oldest son several years ago when she was at another facility and most recently with our daughter at USF. However, we were having such an awful time with my daughter and part of my daughters issues (at that time) was that she wouldn't take medication in any form. In fact if we tried to force liquid or she thought it was mixed in food or drink she would induce vomiting. So at our second visit, I was absolutely defeated because there was no way to get her better if we couldn't get any antibiotics in her. I brought up the topic of IVIG and Dr. M agreed due to the fact that we were only seeing worsening symptoms and no other way to attack the issue. The first IVIG brought us to the best place we have EVER been with my daughter, including getting her to start taking medications (pills). When she started to regress (even while on antibiotics), Dr. M suggested a second IVIG. We didn't get as good a response with the second as with the first, but still some improvement. We still have maintained some of the gains we made with the IVIG, such as her being able to swallow pills. Also, she is still able to attend school, which she couldn't do prior to the IVIG. So the seperation anxiety is much better. However, the rages, ODD, and most OCD issues have all re-surfaced. Since we had to pay 100% out of pocket for the IVIG, we aren't looking at doing another right now. However, I do think that Dr. M takes things very much on a case by case basis and as Arial95 said, she usually likes IVIG in situations of immune deficiency. But for us (we didn't have immune deficiency), she looked at the big picture and agreed. It's just not the first thing she jumps to. If you know already that you want to go that route, than I would probably choose someone known to use that as a first line therapy. If you prefer a more conservative approach, with potential to move that direction if necessary, I think she is great. JMHO.

 

Dedee

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