tpotter

As far as I know you aren't going to find anyone who does it outpatient.

I would also recommend Sacchromyces Boullardi. It can be taken WITH abx, which is a huge plus (we use both sacchromyces (Jarrow brand that we buy at Vitamin Shoppe) and switch around for the 2nd probiotic.) Jarrow brand sacchromyces does not need to be kept refrigerated, but does need to be kept at a stable temp (around 72 degrees F.)

I'm glad you're getting help, and I would also suggest you look over the Lyme forum. It was started by PANDAS parents who figured out that their kids also had lyme or suspected lyme, so they will understand the issues between lyme, pans, MTHFR and KPU. You might want to PM LLM about the KPU and MTHFR info, because she has a very good understanding of it all. Good luck

Could he actually have a strep infection? I know when DS starts having trouble sleeping again, all the other symptoms follow shortly afterwards. When we treat for strep, sleep improves (this could also explain the increase in anxiety.) When you test for strep, do you only do the throat culture, or do you also do ASO? My DS's throat culture is almost always clear (which means he's carrying the strep somewhere else.) But, ASO and AntiDNAseB go up. BTW, 5-HTP has helped us a whole lot. It's one of the very first things that Dr. K. ordered for my children way back when, and whenever we try to eliminate it, symptoms increase (it helps keep tryptophan/seratonin levels up.)

What about Dr. B? He's an immunologist, and he told us absolutely no immunizations.

Tindamax helped mine, but I was pulsing it for about a year, before I finally got complete relief. My LLMD was the one who figured out it was from bartonella.

DS just told me that he just found "some kind of life forms" in the condensate pipe of our a/c (a/c unit is only about 3/4 of a year old.) He wiped away what he could. Any suggestion as to how to eliminate these unwanted life forms in the safest way possible? Thanks.

I would add, that if you are going to do it this way, call various pharmacies, and cost compare. There can be huge differences in medication prices between pharmacies (good example is my dog's seizure meds...$100 per month at RiteAid and CVS, but only $13 at Costco! Luckily, the neurologist at the vet ER told me to check Costco (they are the cheapest I've found for most meds.)

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen. I was going to suggest seeing if there is a good DAN doc or integrated MD. Also have you checked for anything else, like lyme, mold, etc (a good integrated LLMD may be able to help you sort through all this.) In addition to Dr. B., we see a DAN, LLMD, neuro, holistic chiropractor, and I have also found that acupuncture works for me (my kids haven't found relief from it, though.) Keep in mind that the immune system is affected, so your child may well be dealing with more than just strep. Good luck.

Thank you...this explains a lot as to why I keep insisting that the bathroom smells moldy. I'm replacing the floor and cabinet in one bathroom, because it had a leak. BTW...we had engineered wood in the bathroom, and although it looked very nice, it got the water underneath it's top layers, and you can only imagine how bad it got. Now, I have a reason to replace the flooring in the other bathrooms. Instead of pulling up the tile (possibly releasing mold into the house,) does it work if I just cover it with a concrete style leveler (I don't remember what it's called, but it comes in a can/bucket, you spread it onto the floor, and then let it dry, then cover that with tile?

Seizures can also be caused by lyme/bartonella, etc. Does your DS have stretch marks anywhere on his body (typically dark reddish/purple (kind of looks like cat scratches.) This is a quick way to tell if there is bartonella (although not everyone with bart has the rashes, many do, and like us, didn't know that the stretch marks meant anything in particular.)

PM Stephanie2 about homeopathy. She really knows a lot about it, and has had good luck with it.

Heel pain is a symptom of bartonella. I had it, and didn't know until the LLMD asked me.

DS has had that in the past. I would have your DS evaluated for seizures, but also consider the possibility of lyme/co-infections. My DS has both, and that's what it was appearing was causing these symptoms.

Thanks everyone for your suggestions (I really like the onion idea, and will have to try it as a next step.) Saw the ENT again today, and he "vacuumed" my ear again with water, and said that now all the junk is clear from it, so the abx drops can work (saw evidence of infection.) Also gave me clindomycin. My fingers are crossed, because I am truly tired of the pain.

I know you had good luck with CHOP, but overall, it is not the place to go, as most of the docs there believe that our kiddos have conversion disorder (I know your doc didn't, but she's the only one, and she has not been able to help everyone (I am not putting her down. I know she is an excellent doc and really cares, but that is not the typical at CHOP.) OK, that being said, let's get back to helping this wonderful mom. First of all, I'm very glad you found our forum, and I'm also very, very glad that your hospital found the strep, and accepted the PANS/PANDAS dx from the start. I know it's hard to believe, but you are definitely one step ahead of many of us from the start. I think the previous responses, though are excellent. Definitely check out the link at the beginning of this forum, and also PM beeskneesmommy...she'll have some good names for you. I definitely agree that there may be more triggering this than just strep, as the immune system has been compromised, so it can cause many different illnesses/immunizations to affect her nervous system. Personally, I think you should pick a doc who is open to the fact that there may be more than one illness going on. I'm also PMing you.

I got some kind of ear infection about 2 months ago, and have been fighting it since. The doc thinks the infection is gone, but it still hurts...a lot, and even my BP went up the other day. Accupuncturist and chiropractor both believe there's infection, and even my asthma has been out of control for several months now (Dr. B. had said it is only out of control if there is an infection.) Is there some way to swab for infection in the ear, even if it doesn't look like there is anything there? It feels like it's in the eustacian tube. ENT said there was wax, and I've been treating for that, but I just feel pretty certain it's infection. Any ideas? Thanks.

Make sure you eat with doxy. Ignore what it says on the medicine bottle. Our LLMD told us that was for the older tetracyclines about not eating with it.

PM'd you

Be careful with birth control pills. They can cause other problems, like strokes (I know one young lady who had one from the birth control pill.) so, nothing comes without risks. Another thought to figure out what is going on, is to consider seeing an ART person. They are able to figure out what is going on by manual muscle testing. PM me if you want more information.

Both my children have had both PEX and IVIG. Personally, I vote for PEX for several reasons: 1) it works faster 2) you're not infusing blood products. But, the down side is that it is almost impossible to find anyone willing to do PEX (that's why we eventually had to switch to IVIG.) But, the IVIG certainly has helped, too (along with a lot of other things that we do, including continued abx, supplements, chiropractrics, homeopathy, and acupuncture for us.) If the NIMH would officially clarify that PEX is appropriate for the tx of PANS, I know of at least one other doctor who said he would do it. Unfortunately, though, it's very difficult to get the doctors to approve (let alone insurance!)

And for that you have to see a neurologist. We see many different specialties for this exact reason.

Ronald McDonald house is a great option. I wouldn't hesitate to go. Especially if your doc is willing to take advice from specialists, and Dr. M. is a specialist in this area. Plus, if I am correct, the NIMH is backing this study as well? Nothing is as good as having the NIMH on this.

PM'd you.

The 504 needs to focus on what the child needs to succeed in the classroom. So, as far as the diagnoses are concerned, I would certainly mention both, list the symptoms associated with both, but then make sure you list how that translates into the ability to learn in the classroom. What modifications and compensations does your child need in order to learn (e.g.: 1) sit in the front of the room 2) provide handouts of the notes 3) use of a computer for long written assignments 4) extra time on tests.) If your child is having difficulty getting homework done, like mine does when in flareup, you definitely need to address that one. Typically, children are not supposed to do more than 10 minutes per grade. If your child is unable to get all the homework done, and/or it is causing severe anxiety, meltdowns, etc, you need to address this in very functional, MEASURABLE terms (in other words, not just "less homework", but rather "no more than 3 math equations per evening, gradually increasing as the child can handle it.") You can also look in http://pandasnetwork.org/resources-new-research/for-the-school/ for other ideas. Good luck.