tpotter

Yes, 10 pm. Thanks.

And, I know you have a doc at CHOP who treats, but she's the only one, and very limited on who she will take. The other docs at CHOP give the exact same answer that you got. Isn't it terribly sad? What I want to know is what will it take to make these docs actually believe? There have been 2 mouse/rat studies showing it exists, the NIMH says it exists, and multiple other studies. Then the other question this begs is...how many of those "other cases of PANDAS that turned out not to be PANDAS" actually came back? This is why there are so many really sick kids out there...doctors just refusing to accept rather than just not knowing. Personally, I think they should be strung up, and what would be better is if they PERSONALLY got sick with strep, lyme or some other infection triggered autoimmune disorder, and then couldn't get treatment!!! (sorry, I just had to let it out.)

We didn't experience any herxing because of the LDN- just a slight uptick in well-being. The herxing just may be co-incidence. 2.5cc sounds like it is a liquid? So I think my idea of investigating what filler was used in the capsule may not apply. You may want to start with a lower dose, or very slowly work your way up to the prescribed dosage. Yes, 2.5 cc is liquid, and is the much lower dose. We're working our way up to 4.5 mg capsule, in .5 cc increments (we go to 7.5 cc, and then I guess that is where we switch to the capsules. Most of the symptoms are gone, but he's still quite weak (and totally lets me know it...one more excuse as to why he can't exercise . But, I'm making him do that...just modifying.) Interestingly, during this same time period as we started the LDN, I had run out of NAC, so he was off it for 3 days. May be coincidence, but I documented that, too.

Wow...I didn't' know that Babesia has little pin pricks as a rash. That totally explains my DS's little dots. We already suspected babesia, anyway, and we have been treating for bart and erlichiosis for almost 2 years (he has the bart rash, too.) Seems like everyday I learn something new from all of you! I don't know what I would do without this site

Nancy, DS16 has had something like this for years. I've always thought it was flushing, but honestly, it does seem to get worse when he's getting sick. Sometimes, it seems to be associated with what I call a "strep rash", so I do think he's fighting something when it gets worse. BTW, he has had scarlet fever repeatedly, but I know what you're talking about with the pinkish tint, because the bumps that go along with scarlet fever aren't always there. Edema does sort of make sense, because he does look puffier at times. Let me know if you figure it out, and I'll let you know if I do. BTW, DS is also taking Lamictal.

DS16 just started 2.5 cc of LDN (Low dose naltrexone) 4 days ago. 2 days ago, he started stuttering, & felt like air was going through his face and chest. Yesterday, he suddenly got severe low tone throughout his body, and even found it difficult to chew, because he was so weak. Symptoms are better today. Given the fact that LDN is supposed to help the immune system, is it common to get herxing, or could this be a side effect I should be concerned about? Thanks.

Yes math and handwriting are two specific areas that are affected by PANDAS.

IVIG definitely helped both my children...dramatically. And, we are dealing with Lyme in both. I believe it helped their immune systems to fight. We are still fighting infections, but neither of my children are anywhere near as bad as they were. If your son is dealing with rages, I would really suggest that you check also to see if there is mycoplasma pneumonia, if you haven't already. It can cause rages. Also, EBV. Turns out, we are dealing with fluctuating mycoP IgG titers, and here is an article that was put (I think) on the lyme forum (or it could have been this one) that explains that fluctuating high IgG just indicates that the person is getting a relapse of a chronic infection. This makes complete sense, because I am the one with the fluctuating high IgM (and IgG), and when I get either a relapse or a new infection (which has happened several times), both my DS's rages come back. I pulled all his old lab work (4 years worth), and sure enough, the IgG's were fluctuating dramatically. Same was with his EBV titers. But, back to your original question. Yes, IVIG helped my boys dramatically. I know of others, though, who didn't get help.

There's a bread by EnerG that is made gluten free/yeast free. But, there may be sugar in it (I would double check the ingredients list.) Good luck.

I don't think I really wanted to know this But, I guess I really needed to.

I also don't think it hurts to suggest that your niece get tested for several basic infections: strep, mycoP, viruses, and maybe lyme (although they might want to wait on the lyme until later.) It could be PTSD, but the only way to know (fairly certainly, although not 100%) that it's not infection triggered, is to do lab work. PTSD is a rule-out diagnosis...you have to rule everything else out first, and too often doctors don't do the rule-out's before diagnosis with psych disorders. Especially since your child has PANDAS, you already know that it may run in the family.

Ditto. A DAN doctor would be a good bet. Even though your child is not Autistic, DAN docs are regular docs (ours is a Family Practice), but they practice the DAN protocol for Autistic kids. They understand the medical complications of all these things that affect our kids' immune systems. Alternatively, is the neurologist a PANDAS specialist? I believe those are good options. I can understand your pediatrician's hesitancy, because this is out of his/her realm of practice, but the other 2 should be able to help you.

I personally use Xymogen IgG, but our holistic chiropractor did not recommend it for DS16, which is the one that LLMD is saying to try to the LDN on. I ordered the LDN today, but starting with liquid, so I get build up. When I looked online, it said to start low, and build gradually, and I rather like that plan. We also do acupuncture, and the acupuncturist is also working on the immune system. Seems we are dealing with a flare-up of mycoP and EBV and other viruses again, as those IgG's have gone up again. Also, I have finally figured out that whenever he gets strep, it appears to always be scarlet fever (gets the rash), but his doctor never seemed terribly concerned. I'm going to bring all of this to his regular doctor's attention today, because DS goes in for his weekly bacillin injection, and I've pulled together all the old lab work, as well as current ones. I don't know that he'll know what to do, but I think it would help for him to at least be aware of. Plus, if we are always dealing with scarlet fever, this could be a very significant piece of the puzzle. Thanks for everyone's input on the LDN. I'll let you all know how it goes.

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember and just restarted about a month ago. i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better. i dont understand the mechanic effects on the immune system.. maybe this one.. http://www.lowdosenaltrexone.org/ but i think naltrexone was origanally for heart disease??? Thanks. I'm just trying to see if others feel it really helped.

Has anyone had any experience with LDN (low dose naltrexone)? Did it help, if you did? LLMD said it will help DS with his immune system, and I'd like to believe it, but I'd rather see what other's experience has been. Thanks.

Ask your doctor to test for MycoP, Lyme, and childhood viruses (e.g.: parvo, EBV, HHV6, and others.) I know she thinks she knows what PANDAS is (that's why she told you that your child isn't sick enough.), but....if she's saying that, she really doesn't understand it. Every child has different reactions, but the commonality is that symptoms are neuropsychiatric. At least get the strep, and other infections I listed above checked for (IgM and IgG, because the IgG indicates there may be long term re-occurance, particularly if you measure it over time, and the numbers rise at any point.) Maybe your pediatrician would consider talking with Dr. Swedo at the NIMH? Oh, I guess I'm just not thinking. What about calling the NIMH yourself, and see if your DD qualifies for their IVIG study? She's within the age range at any rate. If you qualify, they pay for everything, including testing, treatment, and travel! Their contact info is: http://clinicaltrials.gov/ct2/show/NCT01281969 I would call immediately. Good luck.

Dawn, I would consider most any of the docs (maybe not Dr. K, because he's a pediatrician, and the 20 y o is not pediatric anymore.) But, I would also have the girl checked for Lyme (if not on abx, I would consider the new lyme test that is far more accurate.) Dr. B. and Dr. L. both consider lyme these days, but neither one treats it, and so many of us have found more than just strep. If they're wanting to get to the bottom of this as quickly as possible, I wouldn't ignore any possibility. Once they know most of what they are dealing with, they can then decide on the treatment/s they want to go with, whether it's abx, IVIG, PEX, homeopathy, chiropractics, acupuncture, etc, etc. That's just my opinion.

Thank you, and back at you!

Have the doctors at the psych hospital contact Dr. E. at CHOP. She's a psychiatrist, and has done research on PANDAS, and still treats PANDAS kids.

Thank you Stephanie. I really appreciate these updates. Now, the issue is convincing my younger son to try it (I've brought it up before, but he refuses.) Never-the-less, I'm going to try again, because I really think it's worth a try. We, like you, have tried everything else, and although he's "under control" (that means no major raging anymore, but still constantly getting sick), and I really think it's worth trying. DH says: "I can't see how it would work", but I pointed out to him that I don't know how acupuncture works, but it cleared up my mycoP when nothing else would (including 1 1/2 years of abx). The acupuncture isn't quite doing the same for my DS, although I think it was doing more than he felt it was. But, I do think that classical homeopathy may be worth a try.

Ditto, except the steroid burst. If it actually is bipolar, it can make it worse. She needs to find a PANDAS friendly doc or one who can consult. Since it's a psych hospital, maybe Dr. Leckman at the Child Study Center at Yale might be able to consult with the hospital. He's running the IVIG study at NIH. In fact, maybe she can call and see if her son will qualify for the NIH study. Otherwise, I would be on the phone with Dr. K for a phone consult, and/or getting an appointment with Dr. B., Dr. L or one of the others as soon as possible. BTW, my DS was thought to have bipolar...it's PANDAS. Figured it out because of a position paper that Dr. K. wrote.

OMG...we use some of the OTC stuff. I am sooooo ticked off by this. DS19 just said: "That's where I'm getting the mercury from!"

Either the NIMH new website or white paper (can't remember which) mentions possible adult onset (although your DS's was not adult onset.) I do think it is strep or other infection(s) related, and I certainly think the doctors should clearly rule out strep with the heart involvement. What about having your dr test for strep, staph, mycoplasma as a starter, and if possible, he shouldn't have a problem treating. Also, I would probably see a ARF specialist, because of the possible heart connection. If it is ARF, accepted treatment includes IVIG and PEX, and you should have a much easier time getting the proper treatment. Honestly, I wouldn't wait. And, if you just can't get the above done, as tight as money is, I would do everything possible to at least get a single consult with Dr. L. (she's so close, and to go to Dr. B. might actually cost more to drive the distance). It sounds like your dr. is willing to do what is necessary if he has the specialist backing him, so it really might not take more than one. Good luck.

Which doctor is doing the IVIG? Also, get a copy of insurance company's policy on IVIG coverage (they have to have a policy on what is covered.) I got that list, and found one of the conditions listed that my son had. BUT (and this is important), there were specific stipulations that had to be followed (e.g., I had to prove just how sick he had been from it, how it limited him, etc.) I followed the stipulations exactly (showed how sick he had been by getting the pediatricians visit records for the past 1/2 year, and found that he had been treated 8 times in 1/2 a year for bacterial infections, and that he had missed excessive days of school for the past few years (I included the attendance records that I had kept.) That's the best piece of advice I can give. We had it coded as specific autoimmune deficiency (SAD) instead of PANDAS, so I don't know if that helps, but he did qualify in the end (took a lot of fighting, and followup.) Good luck. I'll keep my fingers crossed for you.

I just wanted to mention that the meanness might be a herx response, where it gets worse before it gets better.