tpotter

After the experience we had at CHOP, I also warn people to stay away from them, as well...denied PANDAS, told us it was "voodoo", and then dx my son who had severe neurological flareup with conversion disorder (after already dx by 5 other docs with PANDAS and/or lyme and/or post-infectious encephalitis. I would warn parents to stay away from CHOP, as well, because I wouldn't put it past them to pull something similar. Also, I was thinking the same as you about the malpractice, but I was also thinking that it would be child endangerment by pulling a child off his/her abx, and also attempted intimidation, and who knows what else? Very, very scary.

I don't know about Dr. C, but we use Dr. B. in Stephensville. Have been very pleased with him...he follows the ILAADS protocol, and other than the fact that we are dealing with a very messy mold issue (for 2 months that was remediated improperly), have been doing extremely well under Dr. B's care for the past 2 years. PM me if you want more info.

And, honestly, doxy is a pretty strong abx, with some major side effects. It works really well on pneumonia,lyme, and such...everyone in my family has taken it, because we are also dealing with lyme and co-infections. But, DS (now 16) got pancreatitis from it, so it certainly isn't without it's risks. So, unless you suspect other infections (including skin, and some others), your doc may want to try a different one for strep. That being said, many of us on this forum have found that our kids have more than just strep. Here's a link to the NIH website: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000563/ about doryx.

Minocycline is frequently used as an alternative to doxy. But, I, too have not heard of weight gain with doxy. Does she have acute lyme or chronic? If it's chronic, I'd get to an LLMD instead of guessing. There is a protocol, and it also may be more than just lyme (could be co-infections, as well.)

Has your dr. checked for staph, MRSA or anything else? Strep is not the only thing with PANS, and in fact with sinuses, it is frequently not strep. I would also take the next step, and that is to get an appointment with a PANS specialist. They are listed at the top of this thread (PM me for several names, as well.) Appointments take a long time to get (months in some cases,) so I would get the appointments now...you can always cancel. It's great that your doc is willing to treat, but it doesn't sound like s/he has the understanding of what it takes to treat this disorder (which is not slighting the doc, but rather just an observation based on experience.) Just like if your child had seizures, diabetes, etc, you would expect to see a specialist, so too should you do that with a PANS specialist.) Good luck.

I'm glad the district gave you services, BUT, I don't see how they can put a somatization label on when none of your docs have given her that. I really think you need to demand that it be removed, because it's harmful to her, it's not accurate, and it's not legal for the school district/school psychologist to make up diagnoses. It's like a district/teacher/school psychologist, etc. diagnosing a child with ADHD (like used to happen.) It's just not legal.

I was going to say the same. He may have been exposed to infection. Also, have you tested everyone in your family for strep and mycoplasma pneumonia? You want to make sure that your family is not "carriers" (personally I think that just means that the person has strep, but they haven't figured out where it is.) I agree with emailing Dr. K (webpediatrics.com) for followup suggestions. BTW, your English is beautiful!

Lilly, I'm so sorry to hear things are getting worse. What have you tested for? As you can see, so many of us have multiple infections and triggers (lots of different infections, immunizations, etc.) Many of us are combining eastern and western meds, plus doing homeopathy, acupuncture, chiropractic, etc., etc. I know with my family, that's what's helped the most. Right now, we are having some issues with DS16 (herxing, and a major mold problem in the house, which seems to be affecting him in so many ways,) but DS19 seems to be mostly holding his own at college, and is studying to be a Rocket Scientist (literally!) Now, if he would just stop putting all the poison into his body (Monster and Mountain Dew) But, he knows, and understands that the vast majority of his issues at this point, appear to be self-induced, and as an "adult", I have to let him make his own mistakes.

I think you may be right on the mark. I would suggest that you follow your instincts. As far as your dd is concerned about being around her boyfriend after IVIG...I have to completely agree with you, if in fact it is untreated infection of any type. The fact that his symptoms increased at the same time that your dd got sick is very suspicious. I would trust your gut (that's what I have learned is most important.)

But, honestly, what is a "strep carrier?" To me that is nothing more than the fact that the person tests positive for strep, but they can't figure out where the strep is. The fact that they are contageous (people tend to get sick around them) means to me that strep is still strep, and that person may very well be having symptoms, but doesn't necesarily equate the 2 together.

OMG...this sounds like the same school psychologist who started all our problems when ds was in 6th grade. I wonder if she changed districts? PM me her name. I am just truly curious, because this is virtually what the school psychologist did to us. Also, here's what finally worked for us (besides a 3 year due process case that you might not end up needing to do.) After settling on the case (after 3 years), the district started up again, so we took them to mediation.) I read 5 letters out loud from 5 different doctors, explaining the disorder, and how it affected my child in school. I also had our psychologist come to the meeting, and present in person about my son's school phobia. I spent about 1 hour just reading from the doctors' letters. Didn't say much else. The district did a little retort, I stood up to them. The mediator finally took the district to another room, and a few minutes later, DS got what he needed. My suggestion...get those letters from the docs (you'll have to offer to pay them for their time). Get the private psychologist to come to the meeting (again, I paid him by the hour). Try mediation. It's far cheaper and easier than fighting this, and you need help to get your daughter the education she needs. Oh...also sounds like DD picked up some infection. Maybe strep, a virus, or something else? Good luck.

If the school district gives you any problem, PM me,and I'll give you the name of a very good education lawyer nearby.

My opinion is that it is never just one thing that causes this severe of symptoms. For instance, DS has the OCD and tics, anxiety, depression, etc. PLUS he gets the rages. OK. we now know there was strep and MycoP he was exposed to the latter through me.) Later we find out there is also lyme and co-infections. But, he never tested positive...just had the clinical symptoms, including the bartonella rash.

1TiredMom, I totally feel for you, and completely get where you're coming from. I've actually been there. DS was scheduled for PEX 2 years ago, and it was cancelled 4 days before he should have gotten it. Having been there, and coming out the other side, finally, I am glad I persevered. It took us 8 more months to get him tx, due to horrible things partially beyond anyone's control (wasn't insurance, believe it or not, in this case.) I tried to get help, but at that time, there were even less people treating our kids than there are now, so I wasted a horrible amount of time to the detriment of my son, trying to fix things I couldn't fix. I know you have gone the supplement route, but most are vitamins...the problem is that the CDC "recommended daily allowances" just make no sense, because each person's unique needs are different. For instance, if you son/daughter has an MTHFR deficiency, they need zinc, methylfolate (not folic acid), and other b vitamins. If their adrenals are being taxed (which I can't imagine any of our children NOT having, they need support for the adrenals.) But, trying to figure it out ourselves can make them worse...we need the help of a good naturopath, ART, holistic, and/or homeopathic practitioner (with experience.) I know you need the money, and I totally, completely 100% get that, but I am very concerned that you are going to be cutting yourself short. I tried...I really, really tried, and just finally had to admit that I needed time off. I now work part time (actually contract, because I can set my own hours, and they're flexible.) I get no benefits (luckily I've got them through my dh), and I don't make enough in the end, but I've got the 1 thing I couldn't balance with a full time job...flexibility. Just a thought. Here's my recommendation, based on lots of experience, being in a very similar situation to what you are in, and with older children: 1) Don't give up. It will get better. 2) Fight insurance (PM me, and we can discuss methods, but I've been there, and finally won.) 3) While fighting insurance, make an appointment with a 2nd provider...one who can maybe take you another route (that's what I think I waited too long to do...but then again, there really weren't any others who could help me at the time.) Have you also checked for other infections that could be playing a roll in all this? 4) Alternatively, since the PEX is with a large university hospital that has all kinds of funding options, can you go to the billing office, and ask them to set up a payment plan for you. Depending on your income, they might even reduce the cost. Then possibly pay privately (I know it's outrageously expensive, but your child gets the tx he needs...I know that if Dr. L. is doing PEX, your child is severe.) Then, go back and fight insurance. They sometimes pay easier AFTER the fact (I think DCMom did that, so she might want to chime in.) I didn't do it, but probably should have (DS got way worse during those 8 months that we waited, and I also got much worse medically, because of all the stress). I know it's terribly scary, and we all wonder where the money is going to come from, but sitting and obsessing about what we can't do to help our children when the tx is in front of us, IMHO, is worse. 5) My children are stable because of supplements & ongoing abx, and tx for other infections...in our case, lyme, bartonella, babesia, and more (although now that DS16 is back to school, and is being exposed to strep, and stuff, we are having problems again....but nowhere near as severe.) But, I truly don't believe that would have happened, if we didn't put supplements into the mix. But, I have him tested for each supplement, and it has to make sense to me. PM me if you want to talk.

And, your child needs to be off all other abx while being treated for c-diff. My son went through this several times, and now he takes no oral abx. When he has needed it, he gets an injection. We did all the probiotics from day 1, and he still got c-diff repeatedly. Stay on top of this. It can destroy the stomach, and is very important to take care of. And, yes, it could definitely cause the flare.

I would never say it couldn't happen, because in my experience, we had the same thing happen with 1 of my children with peanuts/peanutbutter (happened within, literally 3 - 5 minutes), and azithromycin with the other (within 1 - 2 hours.) We figured out that the peanuts/peanutbutter is full of tryptophan and oil and is also extremely low on the glycemic index (I suspect it could be all 3, and it only took 1- 2 T of peanutbutter or a very small handful or 2 of peanuts to stop a rage in it's tracks.) The azith stopped my other son's depression and suicidal ideations within 1 - 2 hours (and both things were tested repeatedly on my children.) I did not expect either of these things to happen, and the peanuts took me more than a year to figure out why it was probably working. So, the fact that you had this happen with Vit. D., although I can't explain it, wouldn't surprise me. And, yes, Vitamin D is very important for all our kids. At the highest, I was taking 50K IU for a week. My children and I are regularly taking 2 - 4K IU (my children are 16 and 19, but I would definitely keep an eye on that vitamin D, because I keep hearing that so many of our kids have low vitamin D.

Did they spray for West Nile or anything like that? Or, could West Nile even be playing a roll in this (I now actually suspect that my DS may have originally triggered with West Nile...I don't think it was the only thing going on, but at least one of the triggers.) And, yes...if it was the boy's football team, there would not be conversion disorder suspected (now if it was the girl's team...)

Interestingly, this is about the same time last year when everything started. This is the season when mycoP, strep, et al, start rearing their ugly heads. Last year, it was found that many of the girls had strep, many had mycoP (there was an overlap in several girls,) and 2 were CDC positive for lyme. Plus, of course, we know that there appears to be environmental concerns, as well. My guess is that the new girls don't know about taking their kids to anyone other than Dr. Metchler, and that is just so very sad. I find it terribly odd that so many girls from one small area all get a similar illness/symptoms at roughly the same time 2 years in a row. This is so not conversion disorder (I'm not saying what it is...I'm not a doctor...but it's not conversion disorder.) If it was cancer they were all getting, there would be studies galore to find out "why the cluster", and no one would be claiming "conversion disorder!" Sad, sad, sad!

Wow...1TiredMom, that was a great letter you just laid out. Also, I agree with Kimballot about the immune deficiency, but make sure if they do have it, that you get a copy of your insurance policy,and follow the requirements exactly (like Kimballot said, document missed days of school/work, how many days in the past 1/2 year or year your child has had an infection and been treated with abx, antivirals, etc.) This is what we had to do, and it worked. Finally, although I think the world of Dr. L (she is truly fantasstic and caring), neither she nor Dr. T. are lyme specialists (and both will admit to that.) Before ruling out lyme, bartonella, babesia, RMSF, Erlichiosis, and others, I would definitely see an LLMD. Lyme is a clinical dx, because the standard blood tests can be terribly inaccurate (lots of false negatives). Also, bartonella causes the bacteria to hide out in cysts (including lyme bacteria), so it can be very difficult to dx, unless you burst the cysts with a cyst buster (like flaggyl or tindamax, for instance.) Then, after that's done, the blood tests may come back as positive, because the bacteria cannot hide out anymore. Also, there may be parasites that can cause these symptoms, and will not show up on a standard Western Blot (even Igenex isn't perfect, it's a little better than Quest or LabCorp WB, but not perfect.) There is a new test out that is about 80% accurate by Advanced Lab (the doctor has to request a test kit be sent to you, and then you go get the draw, and mail it back.) This actually takes a picture of the blood, and if positive, you will actually see the spirochetes (hard for insurance to argue with that kind of evidence.) But, most insurance doesn't pay for it (it's about $500 or so.) We did it, and our son was negative (he used to have Lyme, and based on his improvement, I tend to believe these results.) There's also another test...I think it's a PCR DNA test (someone correct me, please if I'm wrong). It allows the doctor to get DNA evidence...again hard to argue with. I hear it is about 90 something % accurate. Again, probably paid out of pocket. The fact that you are dealing with mycoP, which can be a co-infection of lyme, just makes be believe that this could be lyme, and if it was my child, I would be going to all extents possible to make certain it's not part of the what is making them sick. One other thing I would at least consider, is the possibility of mold. Is there any chance your children have been exposed to mold? I know the issue came up in the past on the forum, and I only mildly looked into it, but since we are now, personally in the midst of a mold crisis in our house, I am now associating some of my own and my childrens' symptoms with the mold (toxic mold found, we got huge increase in neuropsych and lung symptoms, we left the house for several weeks while remediated (well sort of)...everything calmed down...we came home, and some of symptoms are back again.) I doubt all their symptoms are mold related, but mold will definitely make everything worse. Just some thoughts to look into. Good luck.

Sounds like the same problem as LD or HD IVIG. Very interesting.

Please PM me. Also, do you know if CM has lactose? I'm lactose intolerant, but at least one of my kids isn't (I suspect the other is starting to have problems with it.) Thank you,

And, keep in mind that even if the IgG comes back high, but not the IgM, your child could still have an active infection (if thought most docs believe that it only indicates "past" infection.) DS's IgG kept coming back high, and then would double when I was exposing him (turned out I was the IgM positive.) he was still reactive to it. Good luck.

I know it was probably the soda, but it can also be from the lyme. DS16 has had tachycardia, and 2 cardiologists believe it was "infection triggered", and our LLMD said: "lyme". Just wanted to let you know.