tpotter

We are using naltrexone. Our LLMD had suggested it several years ago, and I'm not sure why we didn't use it then, but DS17 is now using it, and has been for about 1/2 a year. Normal dose is about 4.5 mg (above that will give a lot of side effects.) We started at 2.5 mg, and slowly built up. Helps the immune system, too. Seems to really be helping.

Agreed about the other infections, genetic, environmental, metabolic issues and immunizations. I will respectfully disagree about Dr. T. having the most experience with teens (personal experience,) but that being said, I am going to PM you. I have 2 teen boys (one is now 20). Been treating quite a number of years.

And enlarged spleen sometimes.

Very interesting...thank you for sharing this. I need to go find our CD57 tests that we had done 2 1/2 years ago with Dr. B.

DITTO. I'm sending you a PM.

PM'd you.

DS turned out to have babesia when his spleen enlarged, and liver enzymes elevated. He also ended up being positive for erlichiosis (which was negative the 1st time we tested). As noted above, these resolved with tx. I second asking the LLMD about that.

One thing I found that helped during the worst time (I know it sounds weird, but would work within minutes) was 1 T of peanutbutter or a handful of peanuts. My son HATED peanuts, so I know it wasn't a placebo effect (he would fight me having to take them, and then he was calm within 2- 5 minutes!) I later found out that it was full of tryptophan, which is a precursor to seratonin. Plus, my theory is that between the tryptophan, and the fact that it is full of good fat, which is taken straight to the brain, we were getting the best of both worlds. All I know is that it stopped the rages, and helped him calm down. I started carrying peanuts around. I knew he was getting better when one day I realized I wasn't having to take peanuts with me anymore (if I ever found myself without them, and couldn't find the peanuts, I used peanut m&M's.) Obviously that won't work if your child is allergic to them. I would also suggest that since you found that abx worked initially, but now having trouble again, that there is probably something else going on, too. Until you deal with all the issues, plus improve the immune system, there's going to be a lot of ups and downs. My suspicion is that she may have been exposed to something. The NIMH website mentions that there may be other things causing it...not just strep. I would look for viruses, lyme, co-infections of lyme (like bartonella, babesia, Rocky Mt Spotted fever, erlichiosis, etc. Is there a possibility of mold in your house, in her school, sometime in the past or present? Do you live in an old house...could there by lead based paint? Look for environmental triggers, metabolic issues, as well as infection. But, you do have to dig. Most of us on the forum have found more than one issue, because this is an immunological disorder, so the body is susceptible to so many onslaughts. I would encourage you to keep looking, because although difficult to deal with, it does get easier when you start finding answers. If you want to PM me, you can, and I can give you some other ideas, as well. In the meantime, you and your daughter are in my prayers.

Already done. Good luck to your sister (and your family as well)! Also done. I hope this succeeds.

I don't think it goes hand in hand, but that being said, they are both autoimmune conditions. What many of us have found is if there is one problem, there may be another.

Those running PANDASNetwork have been a huge help to me when I couldn't find help elsewhere (I've been around since before PANDASnetwork was created.) I thank my lucky stars every day for that help. But, I look over the list, and I know that we have been to many of these doctors, and I have spoken to others who have been to other doctors on both lists. I will tell you that there are doctors on that list who do not follow the standards, either. Dr. B. prescribes what he, as a licensed, certified IMMUNOLOGIST recommends for the person's diagnosis. He looks for immunodeficiencies in these children, and if he finds them, he treats per the guidelines for the type of immunodeficiency that the child has. If Dr. B. had not joined our team, I fear that my children might not be alive today! Dr. B. got treatment for my children when other doctors on that list either couldn't or wouldn't. The fact that the children Dr. B. treats, as most (if not all) of the children with PANS have an autoimmune condition, means that we need to be open to what is going on with these kids. Treating strep is not the only issue with these kids, and Dr. B. is open to that. He recognizes that there may be multiple infections. He treats with antibiotics and with IVIG. And, he refers to other specialists if he feels it is needed. As I said, I am very disappointed that this stand has been taken by pandasnetwork. Dr. B. is one of the best PANS doctors out there no holds barred. The IVIG standards that you mention are not set in stone; they are not even based on a completed study. So, to eliminate someone because of arbitrary "standards" is not acceptable. In fact, it is no more acceptable than doctors who say that they can only treat strep if the child tests positive, and then only for a 10 day period! You know I have been one of pandasnetwork's biggest supporters, and I appreciate all the hard work that the volunteers are doing but, I cannot support it on this one. I truly believe that this decision is extremely harmful to incoming parents.

But, YES, YES, YES! I spent much of the movie leaning over to my DH, and saying: "PANS!", And then..."OMG...that's our family!" After the movie, I heard someone saying that it was a little overdone, and not so believable (oh, if they only knew?)

Sounds like the exposure to strep may have thrown your DS over the top. I would bet anything, he is positive for strep as well. But, that being said, quite a number of us have found eventually, that it is not JUST strep that triggers the autoimmune reaction that causes the neuropsych issues. As others have mentioned, you brought up steroids (and yes, steroids can make lyme worse if there is lyme), luvox can make symptoms worse (SSRI's can too, and so can other psychotropic drugs). I would highly suggest that you test him for multiple infections (I would suggest strep, since you know there was exposure, lyme, co-infections, viruses, parasites, c-diff, giardia, and h-pylori.) I would also suggest that you check his methylation abilities (MTHFR gene mutation might play a role in how your child's body deals with infection, pyroluria, and more. The NIMH website makes it clear that PANS may not just be about strep. I know you will be doing the IVIG, and personally we had that done, as well...it certainly took the edge of things for our boys. But, that being said, if there are any other infections and/or environmental triggers,and/or metabolic issues, he will continue having problems until they are treated. Good luck. I'll keep him in my prayers.

I will 2nd, 3rd, 4th and 5th BeesKneesMommy. Personally, I think there are a few individual personal opinions when choosing to leave Dr. B. off that list, which really makes me extremely upset. Putting out that list should have nothing to do with personal opinion. And, for the record, I also noticed his name was not on that list, and sent a request as to why. I didn't even get an answer. Dr. B. along with the rest of our team saved my childrens' lives! He is a very caring and intelligent immunologist and person. Furthermore, there is no specific NIH/NIMH protocol for treating PANS, as anyone who has been around awhile will attest to...particularly since we still aren't even positive of everything that causes it. If there was a specific protocol, all our children would be cured!

Is there anything we can do?

I don't know, but I would wonder if he is actually reacting to something like an infection? Typically, if one has a high total IgG, it means they've been exposed to an infection, so maybe the IgG subclass 4 is specific for a specific area. I just googled it, and it mentions that LOW subclass 4 is hard to determine what it relates to, but at least one study has indicated it may be respiratory. So, maybe it's that there's some kind of respirator infection? Again...I am just deducing on this one.

I believe Mincocin is in the same class as doxy. You might want to check that out. I just went back on doxy. I hate the stuff, but I'd much rather take it in the winter than the summer.

Kimballot just posted about this within the past few days. You may want to look for her thread.

Bump

Just had this forwarded to me. http://www.foxnews.com/health/2013/01/29/multiple-students-suffering-from-unexplained-hiccups-tics-at-mass-high-school/

My LLMD also said to take it on an empty stomach, because then it only binds to the toxins, and not to the good stuff. That may also be why he said to wait to take the supplements. I'm starting to take it around 11:00 a.m. (about 4 hours after eating breakfast and 1 hour at least before lunch), and then again at bedtime.

I'm not sorry we did it (we also had PEX for both my kids.) But, both were extremely severe, and it clearly helped tremendously take off a lot of their symtoms. That being said...having been at this for 5 years now (diagnosed 5 years ago, but sick a lot longer), I can honestly tell you that if you are still having flareups like this, you need to look at what else might be going on. Keep in mind this is an autoimmune disorder, so these kids are susceptible to so much, and so many of our kids have way more than one infection or trigger. You really should look at viruses, parasites, mycoplasma pneumonia, staph, and lyme at the least (there are a lot of co-infections of lyme, too.) Also, is there any chance of mold in your home. Then there's gene mutations, such as MTHFR, and pyroluria, where zinc and b-vitamins are the culprit. We had no clue that any of this was going on, and my children turned out to be affected by all of the above (except pyroluria, which we haven't tested for yet), and then some. The immunomodulators (IVIG and PEX) are not going to be the only thing that works if there is underlying infection, environmental problems, etc. We use supplements, homeopathy, chiropractics, accupuncture, and all kinds of things I never dreamed I would ever do with my children (and myself, for that matter), and I feel finally like we are stable. And, that's saying a HUGE amount. But, again, I am not sorry we did it.

I also just went through this. I've gotten rid of the kids' mattresses, and still have to get rid of my antique furniture (I really should do it sooner than later, but I've been trying to figure out a way around it, and we are still dealing with insurance.) I also still have to replace my own mattress. I wish I could do this all at once, but we already spent over $20K, and most of it out of pocket! Do not use bleach. It kills the mold, but even dead mold can be toxic. We washed all our clothes in the washer on hot water with soap, then dried it in the dryer. Spent a week doing all of it. We then put it straight into plastic bins that we had just purchased, and washed out really well. We drycleand whatever needed dry cleaning, but did it with organic cleaning. I agree with throwing out whatever cannot be completely washed down. To kill mold, you can use thyme oil...I can't give the name of the product, but it is available online. BUT...keep in mind not to use too much, AND, some people get burning in their lungs from it. We did, and it was a problem. The information we were told, and what is published online is that it can't hurt you. It can, but it also kills mold. On the other hand, personally I think that just washing down non-porous objects with soap and water, and doing it repeatedly will get it off. That's what I did with my personal items.

I was thinking the same thing. Silliness is frequently associated with yeast.

Just curious for other's experience. We're considering.