tpotter

My DS is in PA, and I don't remember any immunizations being required. But, either way, we would opt out. Another thing you might want to consider if you are concerned about being in close contact with other students (like living in a tiny dorm room, and getting sick,) we went through the office of disabilities, and got him approved for a single room, based on his disability. The only drawback, is that he also has Asperger's (although socially he's worse when sick), and being in a single room encourages him not to socialize. But, I'll take that over constantly being ill.

I have to agree with smartypants. I do not use the term PANDAS or PANS anymore with most doctors, but rather encehalitis, and immune deficiency. You could ask for workups on that. Even my children's "list" of dx and medications, has "hx of post-infectious encephalitis" and "immune deficiency". You will probably get much further.

JuliaFaith...good explanation.

I totally agree with contacting the NIH (http://clinicaltrials.gov/ct2/show/NCT01281969). You're actually very lucky that the doctor gave your son the abx, because we couldn't even get that! I am PMing you additional information.

We did it when it was in the research phase, and it was very, very helpful...especially for my older DS who we thought had Asperger's, but then had a major psychiatric problem. Both my kids were very positive...CamK II, ANA, dopamine 1 and 2, and the other one (can't remember what it tested.) Very well spent money. I do realize it is now $1000, which I feel is exceptionally high. My understanding is that it not only shows if CamK II is responding to strep, but can also be responding to other infections (you may want to contact Dr. C, who is the CMO at Moleculara Labs) about that. I would say that if you need it to prove to docs, yourself, etc. that your child actually has PANS, and will, subsequently get tx, then i would definitely get it. Really depends on why you are getting the test done.

No...from our ART office. Doesn't take them back. But, I figured others on this forum also use them. I've only had them less than a month, and I never opened them.

I have some supplements that I never opened, but are still current. We've been using these for ART. I will give you all a discount on them if you want them, and I'll mail them...no charge for shipping. Trying to clean out my cabinet I have: CORE (by BioPure), Phosphatidyl Serine Powder MetalSweep (by Biopure). Thanks.

ART stands for: Autonomic Response Testing. It's a Klinghardt technique. Also, blood test for DS came back positive for bartonella. Took 3 draws over a 5 day period doing testing basically 9 different ways (3 ways X 3 days). Only 1 was positive, but it was PCR DNA! Don't know if it was what had affected his valve...still waiting for those results, but never-the-less, we have no choice but to treat. Taking him back to LLMD in 1 1/2 weeks, because he stopped tx about 2 years ago when he got recurrent c-diff. We're definitely going to have to deal with that, too.

Just keep in mind, though, that even good tests like Igenex are prone to false negatives. If you suspect in any way shape or form that this could be Lyme, Bartonella, Babesia, etc, then I would suggest seeing an LLMD (Lyme Literate MD), because they can make clinical dx, even in the absence of a positive blood test. Let us know if you need the name of one in your area, and I'm sure people will share names. Personally, I wouldn't accept any sudden onset of anything without confirming an underlying cause, such as infection, environmental trigger, metabolic trigger, etc.

Also, sometimes IgG can be elevated, and not IgM (or in the case of strep...AntiDNAseB vs. ASO. Doctors like to presume that DNAseB and/or IgG (in other infections) indicates past infection, but if you read the lab results, it says that it may also indicate current infection. If you've had it a long time, the infection may be chronic, so the only thing that may show up positive at that point is the IgG or the DNAseB. But, this also sounds like it could also be lyme/bartonella, babesia, etc., as lyme is the "great mimicker" (it mimics everything.) And, then there's the high titers for viruses. It sounds like your immune system is out of whack, so you may be sick with a lot of different things...all are working against each other. I am really glad that your psych had the knowledge to refer you to a neurologist who specializes in neuro-inflammation. Also, keep in mind that the psych drugs you are taking may be making things worse. I don't know your financial situation, but I found that I got further with alternative doctors. ART helped us figure out all the different things that are going on. But, a lot of people have also found that homeopathy has helped a lot, and I know it has certainly helped us, as well. PM me if you want more information about what we have tried and let me know where you live, so I can maybe help you find someone who can help you get to the bottom of this. I'm really glad that you're reaching out to all of us on this.

From our perspective, we had phenomenal results from both PEX and IVIG (PEX was considerably faster, but both helped.) But, my boys were constantly flaring approx. 3 weeks later, and the IVIG simply wasn't holding. That's why we looked at other possibliities, and found other infections (mycoplasma pneumonia, lyme, bartonella, babesia, erlichiosis, very high viral titers, c-diff, and now even a question about h-pylori). We also found other gut issues, such as leaky gut, yeast, heavy metals and also found mold. We have worked very hard on both trying to treat the above, but also really working on the immune system. My boys, although not 100%, have made more progress since starting to treat for these other issues, as well. And, as cobbiemommy mentioned, this is anecdotal information, but honestly, that's why I use this forum. Because we just weren't getting to the bottom of it waiting for pure scientific proof (which could be years or more) before they figure it out. Personally, I don't think it's any one thing, but rather multiple causes, as the immune system gets out of whack. And, as to why the other groups don't talk about it...well, although I can't point to any specific groups, I would suspect that some are talking about it. Kind of like Autism. You mentioned, MS, for instance. There is research showing that doing bone marrow transplant from the onset has cured people. This indicates that "something" is going on (like possibly infection, environmental, etc.) And, I wouldn't at all be surprised if lyme/co-infections, are part of the cause for some MS patients, as well. But, again, it's my opinion at the moment. But, that is certainly an excellent question.

I would suggest, then, that you have your pediatrician call Dr. Tanya Murphy's number to contact, since she has been doing a clinical trial using azith.

Thank you everyone.

Did pulsing work for you?

Maybe Dr. Murphy's study? I don't know if it's out yet, but I do know she was doing an azith trial. I've never heard of pulsing azith. I guess I understand the doctors' perspective...it's supposed to be given for only 5 days...BUT....PANS is a whole different ballgame, basically chronic infection that needs to be treated completely, AND it's also an anti-inflammatory. Doctors are quick to say not to stop abx treatment too early or the bacteria can become resistent, and if pulsing like that, you are giving the bacteria an opportunity to fight back. Standard practice is to give the abx for a long, long time (many PANS docs are treating like they would with rheum. fever...for years. Even my pulmonologist told me to stay on azith twice a day, because of it's anti-inflammatory effects (and he's not even slightly PANS savvy), because I have chronic mycoP, and he has no clue what to do for it (but when I stop or decreased my dose, I get worse.) I don't know if your child has strep, but I would definitely look for other infections, too, particularly lyme, bartonella, babesia, erlichiosis, mycoplasma pneumonia and viruses. These are stealth bacteria and can hide out. They can cause severe damage over the years, and they are particularly difficult to eradicate when a person has immune deficiencies (which our kids tend to have). Also it's easier to get more than one infection when the immune system is bad. Right now, we are waiting to see if my 20 yo son's heart problems, for which he just had open heart surgery, were caused by infection, including bartonella and strep. Keep in mind that lyme and co-infection blood tests are notoriously inaccurate, so if your child is having difficulty getting well with standard PANS treatment, and/or your gut is telling you that it really might be other infections, too...then follow your gut. You don't want to find out later that you were wrong, and did nothing at the time.

We use optimag from Xymogen.

PMing you

Came home yesterday. Has had a few flares...not looking forward to that part, but he's definitely doing better. Have a busy day of getting tested for h-pylori (suspected prior to surgery), home care, and detox at the chiro.

Have you considered getting an ART evaluation. This can tell you what actually is going on, rather than just guessing. It is costly, BUT, so is 1 1/2 years of IV abx tx. Then, after evaluation, you can then decide the best course of action.

Got blood sample and tissue sample into lab for bartonella, and they have received it. Hopefully it turns out to not be bartonella, but just the 2 congenital defects. My fingers are crossed.

Both my children got nightmares from melatonin. At least they were old enough to tell me. We have used 5-htp for several years, and DS17 gets depressed when we stop it, but is fine when we don't. We played around with amounts, and now do 2 in p.m. (to help with sleep), and 1 in a.m.

Thank you everyone. Tissue sample went out today. They are being sooo helpful at the lab. Nurses at hospital are wonderful. He's still in CCU, but hopefully will get his tubes out tomorrow, which means he can be downgraded. Poor guy...so terribly painful. Needing lots of pain meds, which of course is giving him tons of side effects. Gut is now even more of a mess than it was before (and it's been bad since birth.) But, so very thankful to our ART dr. who figured out something was wrong with his heart, and told us to get in to cardiologist as soon as possible. If it hadn't been for her, my son would probably have died!

Surgery's over. He had the valve replaced, and I have a sample to test for bartonella. Apparently they aren't culturing it here for strep and other infections...my understanding was that that was the role of sending it off to pathology. So, now I'm at least trying to get them to look carefully at it to see if it looks like there was still active infection. So frustrating...the surgeon just doesn't get it.

Did you all notice the title? "signs of lyme disease" OK...that's possible...only about 30% have any clear physical signs (like a rash), anyway. But, if you consider difficulty speaking, joint pain, and more, then maybe there are signs, but ones that the researchers in this case just conveniently decided to overlook. Personally, I find it very interesting that they mention that 20% or more kids do have an association.

What specifically does a toy designer do? That sounds like fun.