tpotter

Thanks guys. I'll let the LLMD know. Also, we are doing bentonite clay, and I have been trying to get him to also soak his feet in epsom salts (I've been doing it.) the problem is trying to get all of the meds and detox done on schedule, which is pretty hard with school aged kids. There are days the detox doesn't happen, and the foot soaks really aren't happening. I think I'm going to run upstairs and see if I can get him to do it right now before he goes to bed (his class is going to NYC tomorrow for a field trip, and they have to be at school by 6:45, so he's heading to bed.) I think he'll hold it together, because he has only one time "almost" lost it in front of other people...he holds it in until he gets home! Why don't you think it's from the bacillin? The LLMD said that he might herx from it that day, and it did start that evening. I'm probably going to wait on the flaggyl...maybe an extra week or 2 (I don't want to be doing over our vacation either.)

All the time...and it can be one minute to the next. We sometimes laugh about it, because the last time my 17-yo did it really badly, I got called: "Seniora Bitchy!" About 5 minutes later, he was in hysterics trying to figure out where that one came from.

Any of you whose child got a bacillin injection...did s/he feel really awful for days afterwards? My son is completely miserable. I know he could herx, and started later that evening, but now he just seems to feel really, really awful. The other herxing that he's done with other meds (like Doxy, which he no longer takes, because of the pancreatitis) was in short little bursts, but this doesn't seem to end. To complicate matters, he told me yesterday that he thinks another child at his school has PANDAS (I already know of one), because she just started tic-ing the other day. He's acting like he's flaring up from strep, and he says he feels like there's strep all around him. He even called me from school today, telling me that one of his teaches is really, really sick. I called the school, and I'm sure they kept him out of the class (he goes to a private school that caters to much of this sort of stuff.) He's currently taking azith (for mycoP that he was exposed to...probably because of my undiagnosed for 3 years mycoP), and had the Bacillin injection last Friday. He's supposed to start on flaggyl next Monday, ad I'm scared to push that on him, too. The LLMD thinks he might have bartonella, because he had what looked like the bartonella rash on his upper arm. My son is the least positive for lyme/bartonella in our family (only 1 band...41), but seems to be the most reactive to the tx. Then again, his neuropsych symptoms were always way worse than my other son, and my husband's symptoms are RA type, and I have mostly a little muscle pain, fatigue and MycoP. Any ideas? Oh...he also had IVIG 3 weeks ago, did great. Had a wonderful response for the first two, and just like 1 1/2 years ago when he had the other IVIG, he reverted at about the 3 week mark. But, we also weren't doing tx for Lyme at that time.

I completely agree. We've had IVIG (twice now, but separated by 1 1/2 years) and 1 PEX. The PEX worked immediately, and long term. But, after having the IVIG 3 weeks ago, my boys seem to be in a much better place, overall (although it's a bit hard to know right now, because we are also doing Lyme tx, and they are herxing...especially my 15 yo, who tested the least positive for Lyme.) I know there's a lot of questions about whether or not to do IVIG, especially when there's also Lyme, but my feeling is that there is an underlying autoimmune issue that we have to deal with. We can give all the abx in the world, but unless we give IVIG, too, another infection will just take it's place. And, yes, we have to also treat the infections. This is just my personal opinion, but that's also what you asked for. I also think it's important to be prepared to give more than one IVIG, and you might have to fight insurance. Some of us have done it successfully, and I know that I couldn't have done it if I hadn't had others on this forum sharing what they had done to get help. Hopefully, too, once the white paper comes out, there will be more insurance companies changing their policies.

I don't know about the other questions (we didn't do Igenex), but our LLMD said that the CD57 is not as accurate in children as it is in adults (but he still tested the children, although they are 15 and almost 18, so that might be a difference, too.) That being said, it's probably covered by your insurance, and if you're trying to get more results, I would probably do it, only because if it's positive, it tells you a lot.

No...you are definitely not crazy. I think I've mentioned that I suspect that at least 6 of the kids on my 16 child caseload very possibly have PANDAS/PITANDS. One is confirmed positive, because her pediatrician was open to the idea, and when I wrote a letter with symptoms, onset, etc, and doctors to contact (Dr. L, Dr. K, and Dr. C,) she listened, and the child is being treated. Another is having the Cunningham test, but I don't know what he's going to do with that information when it comes back positive (there's no doubt this child has it, because he made massive gains twice when on abx...even to the point of speaking.) But, there's another child, who I suggested go see a pediatric neurologist who I KNOW understands PANDAS, because he wrote a section of a medical textbook with a basic description of it. We also personally saw this doctor, and after much discussion, he said he would do IVIG on my kids (but quick followthrough didn't happen, and we now see Dr. B for IVIG.) Never the less, the child appears to have Trichitillomania and Pica. I sent the mom with research pointing to strep as the source (birth mom had the same problems,) because this doctor usually likes research. BUT, he ignored them, and said to see a psychiatrist. He did the same with the child who's having the Cunningham test. No, it makes positively no sense, but on the opposite side of this, there is SO MUCH MORE known about this horrible disorder than when my now 15 yo first got sick, (and my 17 yo probably has had it his whole life. It took us 4 years to even get a dx for the 15 yo, because we couldn't find anyone who even knew anything about it. The knowledge from just this year alone, has been amazing (see the video that was just posted by Vickie. I've forwarded it to family (at least those who haven't accused me of making my children sick on purpose), colleagues, our pediatrician, and several docs who missed the dx in the past (even if they don't believe it exists, I keep sending them stuff, so that maybe one day they will). I have vowed to continue identifying kids who appear "suspicious", and helping their families get answers (yes or no.) I will continue to help these families find doctors who can help, and I will continue to keep fighting for my own kids health. It's all we, as individuals can do. But, think about how strong all of us "individuals" are, when the head of NIMH said that it was because of a very persistent group of parents.... For now, go see Dr. B. Even if you find someone locally, I can't tell you how much less stressed I am now that I have several doctors to whom I can see. I feel like (after 7 years) that I finally have a "team" (I direct the team, and pass on everything everyone says to the others, but I finally feel like I have control that I didn't have before.) I truly believe that within the next 5-10 years, PANDAS may actually open floodgates to all kinds of disorders (autism, bipolar, etc.) and it's because of US "persistent" parents, that these answers happened, and children can finally get treated without all the battles. In the meantime...keep doing whatever you have to do to get your child treated.

I particularly like the bath at the end :-)

I"m PM'ing you.

My kids have told me that I am addicted to this website. I really have to agree.

I'm checking that out right now. He has had tons of episodes of unstoppable nausea, and I asked his pediatrician yesterday if maybe this was a chronic problem, not acute. She wasn't sure. I am also planning to take him to the hospital for probable admittance today if the pain doesn't ease up. His neck is stiff (but when I push, he gets chorea in it), and he has been fighting a very low grade fever since yesterday. The pediatrician put him on a completely liquid diet, and the child is miserable. But, I'm going to spend a few minute checking out this autoimmune issue, before I head out for 2 hours of work (after which I check back with him, and if he's still not well...) I'll forward whatever I find to the pediatrician, and see what he has to say about it. Interestingly, he was on steroids 2 days prior to 2 days after IVIG, and it was after that that the symptoms came on. He felt GREAT until then.

Holding my breath.

I also agree. Interestingly, both my boys have already started treatment for Lyme. Both herxed pretty badly when starting on doxy last month. But, we had to just stop the doxy on my 15 yo, because of the pancreatitis the other night (he's still in a fair amount of pain, and is on a liquid only diet.) We're hoping that it was the doxy that caused it, because otherwise we don't know what's going on.

This is so great for you. I am really happy it is finally happening

Well it sounds wonderful....like a Hallmark Holiday Special... 2boys with misteriuous illness...receive crucial medical intervention...on the road to recovery as their lives return to normal they have a managable er visit, but their brotherhood comes alive with self-depricating banter.....!!! CUTE!

OMG....my boys are actually fighting over who's fault something is. BUT, my 15 yo is insisting that it's HIS fault, and my 17 yo is insisting that it is HIS own fault! The funniest part is that my 15 yo has NEVER accepted responsibility for anything being his own fault. My 17 yo is also saying that he is having "a great day," and that he "feels really good." I am just seriously praying that this continues...particularly since last night my 15 yo ended up in the ER, because of pancreatitis. Yes, pancreatitis in a 15 yo. They think it's all the meds he's on, because typically it's caused by gallstones (ruled out), and drinking (and I assure you he's not drinking.) They were going to transfer him to a local hospital for children, but we all agreed we'd just keep on eye on things, and keep hydrating him, because he was feeling slightly better when he left after being hydrated and given pain meds. The 2 abx he's on (azith and doxy), as well as his 2 seizure meds, that he's been on a long time are the suspects. They think that when we added in the doxy, it may have thrown him over the top. The ER doc does NOT think that it was the IVIG, and Dr. B. who called me back agrees. His LLMD also called me back (I called both from the ER, and was very pleasantly surprised they both returned my calls), said to stop the doxy, because it was the last one started (3 weeks ago.) He's still having a fair amount of pain, but he drank a ton of fluid today. But, the positive moments are so wonderful, I had to post (actually my boys both said: "we know you're going to post this", and started laughing

Thank you all. I am fully expecting that things will go up and down with them, but this first day has been great. As I mentioned my DS 15 went to school, and said that his brain was clear. My DS 17 didn't go to school, because of his headache, but sat at the computer and the kitchen table doing about 2 hours of catchup schoolwork and homework. He's in almost all AP and honors classes (12th grade), and hasn't been able to focus for most of the week. He also said he feels "clear." I told him we have to document all of this for insurance! I'll keep you all updated every few weeks. In the meantime, as I've mentioned, we are also going down the Lyme route, so there could be a lot of herxing just from that (as there's already been.) I didn't raise their doxy dose up last week like I was supposed to, because between the herxing that they were already having, and reaction to the steroid for IVIG, and the upcoming IVIG, I just decided to leave things at the level they were at. My fingers are crossed.

OK ladies...back to the question at hand It was recommended to me previously not to use an NOS code. But, the truth is that you need to get a copy of your insurance plan's policies on use of IVIG (call them and ask them for it...they have to give it to you.) Then go through it with a fine tooth comb, and see what your doctor's are comfortable using. My boys have a subclass deficiency, and it is clearly listed in their policies as accepting it. BUT, there were also contingencies to it. We had to prove that they were actually getting sick as a result of the deficiency. I got hold of our pediatrician's records for the past 1/2 year (could have gone for 1 year, but they only gave me the past 1/2 year,) and I made a chart showing how many times they had been in, what their diagnoses were (mostly strep and/or bacterial related), and the fact that they were put on more abx to treat it (I also mentioned at the end of my level 2 appeal, that using that much abx can cause resistance to abx, and that was another reason the insurance company had to approve IVIG tx.) BTW...they had 7 - 8 sick visits in just 1/2 a year each...that's huge! Also, in an attempt to prove how sick they constantly were, I pulled their school absence records. I happen to keep that stuff, and used the past 3 years for each. The minimum number of absences in the past 3 years for either of my boys was 12...the maximum was 32! All because of illness. Also, I noticed that you've already had 2 IVIG's. Have you documented any changes as a result of the treatments? I now our insurance company requires that, as well. We certainly fought hard, and even with the above information, we had to continue fighting. But, at least we had the law on our side. So, all I can suggest is that you have to get a copy of the policies for your particular plan, and start with that. But, be very careful if you keep changing the dx code. We had to do that after this summer's fiasco where it was just flat out denied. Then when we got the actual dx of immune deficiency with blood tests to prove it, we felt comfortable changing the dx, but they did try to refuse thinking that we were just "fishing". You have to make sure you're backed up with proof of everything you're submitting. Good luck.

We finally got the IVIG for both my children yesterday and the day before at Dr. B's. It only took 8 months from when my (then) 14 yo was supposed to get PEX. But, at least it's finally done. Both are being treated for Lyme with abx, as well, but there's no question in my mind that PANDAS is certainly part of the whole equation, and since they both have a diagnosed immune deficiency, my feeling is that they need the IVIG to help them fight everything. My 15 yo actually went to school this morning (we got home at 10:00 last night,) but I suspect it's the steroids that are making him feel so good (plus we literally loaded them with fluids.) My 17 yo (who needs to be in school worse than the 15 yo), is still in bed asleep with the headache. He can't take steroids (we tried on Sunday...starting 2 days before the IVIG, as Dr. B.'s office had said to do, but immediately discontinued when he became a raging bull.) We also didn't give him as much benedryl as the other one, because he has always had an opposite reaction (makes him crazy.) But, I did let him have about 1/2 the dose, because I was concerned about possible allergic reactions. Now, we just have to wait. I can't tell you what a relief it is, though. Between IVIG finally being done and knowing that insurance will pay for it for an extended period as needed, plus our school district problems that my 15 yo had because of the PANDAS/Lyme/whatever it is, and finally resolved in September (after a 3 year Due Process), I can't tell you what a relief I am finally feeling. I know there may be a lot of ups and downs (especially with all the herxing we've been seeing, and I'm probably going to start Lyme treatment in December when we have our followup with our LLMD,) but knowing that we have finally found a team of doctors who are addressing the multiple problems is just a sigh of relief.

I'm very sorry that you are going through this, but if you keep visiting this site, you will find that there are a lot of kids that have these problems. I am completely convinced it is not rare, but many doctors either have not heard of it, or they refuse to accept it exists. I work with children, and have identified 7 children who I HIGHLY suspect as having PANDAS...2 have already proved positive (my caseload is only about 16, and it is not a "unique" caseload!) That's why other forum members have suggested not wasting your time with just anyone. You will save yourself great time and aggravation, and be able to help your son much sooner. This disorder is believed to be related to Sydenham's Chorea, and possibly rheumatic fever, lupus, and others. A lot of families (including my own) have found that our children also had previously undetected Lyme. I do agree with considering using Dr. L (the neurologist), but it also sounds like there is definitely some immune issues going on, since your son seems to get a lot of infections. From my personal experience, I would also consider getting an immunologist who understands the disorder to help get you the right tests, and knows how to interpret them (again, not all immunologists do.) There are several options. If you PM me, I can give you some suggestions. Good luck.

Yes it is a lot of testosterone. I can laugh at it now, and honestly, I wasn't even as upset as I've gotten in the past, because it was over "that fast." I know it sounds weird, because it's one of the worst injuries we've actually had, but I think it's the long acting massive rages that my kids' can't calm down from easily that just tear at me. When I got to the ER, no one seemed overly concerned about a teenage boy showing up with a possible fractured clavicle, because he got into a fight with his brother. Even though we know it was way more than normal (and so would you guys), it seems relatively normal to "regular" people, so there's not all the wondering what we may have "done" to our kids. "Unfortunately", I actually appreciate something like that!

Had an exciting night last night...in the ER! Both my boys went "off" at the same time (neither one quite remembers what triggered them, and we've never had both go "off" simultaneously,) and my 17 yo ended up with a possible hairline fracture of the clavicle (I told them both that I had to post this one on the forum...they actually didn't even argue that much, because they know it was really bad.) Thank goodness my husband was there to help pull apart 2 almost 6 foot tall boys having sudden and extreme adrenaline rushes! My 15 yo said that it felt like he was only touching my 17 yo "lightly", my 17 yo says he doesn't remember part of it, but does remember that he was trying to fight us, so he could get some extra punches in on the 15 yo (but now says he doesn't know why he was doing it). When I got to the ER, and was giving his hx for the umpteenth time, I added in Lyme. The ER doctor was actually interested, and although my son was begging me to stop, she actually wanted more information about how one gets truly diagnosed (she said she gets a lot of false positives, but I told her that I felt there were more false negatives,) and was surprised to find out how strong the dosage of abx is. She wanted more info, and wanted to know how one would know that tx "was over" so I gave her the name of our LLMD. My son's guidance counsellor asked him today if we got the police involved. His answer? "No, it happened too quickly" Oh...and we also have another dent in the wall (our walls have repeatedly been repaired with all the holes!) But, what's truly amazing is how fast these "incidents" cycle, as opposed to previous episodes. That's why I'm really convinced at this point that it's actually herxing. I really didn't want to believe that we had to deal with 1 more thing, but I guess we do. And, yes, I also do believe they have PANDAS, as well.

And, ours was "only" $250. I agree, that I don't see anything wrong with posting the name of the doctor, but opinions should be given by PM. I've given names of docs before, but never an opinion directly on the forum. Good luck.

Just curious if you have considered doing IVIG as well, occasionally and/or after the Lyme tx to help the immune system get back on track?

Jodie, I am sooo glad you are feeling better. That's such a great comment your son made. Now you have a reason to get yourself better...so you can be there to guide him and your grandchildren! Trudy

Melinda, Please PM me with information about location, etc.