bubbasmom

REGARDING THE WRITING We totally discovered that with my INCREDIABLY shy son in 2007 when he first got PANDAS. Now we've moved onto texting. He's texting me right now. He's 13 so we got him a cell phone when he started Jr. High. Taking his phone away is rarely a punishment because that is our open line of communication. I even punish him over the phone!! That way, I text what his punishment is. He has time to process it and there's a lot less conflict. He will text me his problems and mostly I get the I LOVE YOU texts, which when you're in the middle of PANDAS you need those the most!!!

I'm not sure you'll ever get that answer. My son wet the bed till he was 11 and very suddenly stopped. My pediatrician all these years had told me don't worry about the bedwetting 'my daughter does it too'. Then one day he told me one day his daughter quit literally over night. Even as a pediatrician he wanted to stay with the pull ups for a while, but didn't need to. It was just over. However, like so many on here, it has been suggested to us (and quite convincingly I might add) that even though my son was not diagnosed until age 10, he's possibly had PANDAS since age 3 or 4. Since that is the typical age for boys to quit wetting the bed, the bed wetting could have been PANDAS related. So hows that for a big fat MAYBE!! lol Its all so confusing isn't it? The what ifs, the maybes. We'll all be research scientists before its over!

I'm just curious about adult PANDAS since the P in PANDAS stands for pediatric. Have you had this since childhood?

My son does not have immune issues, however he definitely takes a turn for the worst following IVIG. I don't know if his is considered low dose or not. However, his IVIG was 3/22 and we are now (the last week or so) beginning to see very good signs. My son too was at a 'fairly' good place prior to the IVIG and then totally slipped back. SOOOO CONFUSING!!

You could maybe go on other insurance company's web sites and copy where they not only acknowledge PANDAS but also acknowledge that IVIG is a treatment of choice. I KNOW United Health Care has it on their site.

Stephanie, I'm glad to hear you point that out. Although I truly know strep was the initial trigger for my son, now it does seem that every little thing sets him off. I was thinking the IVIG made his symptoms worse, however, following IVIG he both times spent the next 24 hours with a migraine that only darvocet, advil and tylenol together helps but only after he has been already throwing up all day from the pain. So maybe even his typical reaction to IVIG was a trigger for him. Interesting thought. My son is SOOOO aggressive when he's exaserbating. So much that we have to keep him on Risperidal. Which by the way was our saving grace everytime. Couldn't have done it without it. So much to consider. Now I'm considering this mycoplasm pneumonia deal. He so happen to get a lyme test done, but it showed high IGG and IGM (at least I think it did, have to call doc on Monday). Denna

I'm new to the whole mycroplasm concept. How is it treated if your IgG and/or Igm numbers are high?

I see a lot of people talking about the mycoplasm. What has lead people to check for this. From what I research in my limited ability, it seems like there are symptoms. Am I missing something? I have had several on here ask me if we've tested for it, and of course we haven't since I don't even know what it is.

Buster we really appreciate all of the effort you put into PANDAS. I especially appreciate this post as I've had yet another week of 'breaking in new people' at the school distsrict. Just when you get one teacher or principal or administrator straightened out on the whole deal, there's a shift such as a new semester or people changing positions. I feel like a broken record. You get tired of the 'well I've never heard of such a thing'. Oh, well then, it must not be true if YOU have never heard of it!!! It's not really THAT UNCOMMON.

I agree with Vickie, although the abbreviations take a minute to click in our minds sometimes, most of us have lives that are utter caos and we have to 'steal a minute here or there' to even get on here. What little time we get online is no longer spent searching the news or chatting with friends, we spend every spare moment we have researching and discussing our child's disease. But Vickie your abbreviation list helped me too and I've been here a while now. So thanks.

RISPERIDAL WAS OUR SAVING GRACE!! I'm serious it made all the difference in the world. Made my son gain weight, but oh my goodness totally controlled his rage. My son is 13 and weighs 170 so when he rages, everyone's in danger!!!

So I've already had to educate an elementary principal and teacher. Now moved up to Jr. High where I had to convince an assistant principal, seven teachers and a district administrator of PANDAS. Even though my son has had a total of NINE doctors diagnose him of this. We live in a relatively large city with 17 MAJOR hospitals, we're not some small hick town where medical personelle are hard to come by. So now the assistant principal that I've spent all school year dealing with has now moved on to a new building leaving me to start from scratch with the head principal. So the head principals statements go something like this: I'M NOT SURE PANDAS EVEN EXISTS.....YOUR SON DOES NOT SHOW SYMPTOMS OF PANDAS HE JUST HAS A BEHAVIOR DISORDER.....HAS YOUR SON EVER BEEN TESTED FOR SPECIAL EDUCATION (to which I replied "what special education did you have in mind for the boy with an IQ of 130" he didn't laugh - go figure!) So then he tells me if we'll let my son be put through the battery of 'their' tests and they get a ODD diagnosis, then when he is removed from a class he will 'discipline my son in a way appropriate to his personality and situation and then return him to the class'. Excuse me, isn't that what you are supposed to be doing anyway?? Does my son have ODD? Of course he does. ODD, OCD, ADD, ADHD, P.A.N.D.A.S., AND ABCDEFG also! SO WHAT!! Just flippin educate my son, discipline him only when necessary, tell the teachers to back off, and let us worry about his HEALTH!!! (funny story.....my son got sent to his office for refusing to do work in class (because he didn't understand it and nobody would help him - he was in brain fart mode) so in the office my son just sat there. The principal said "am I to take this as you refusing to do this work"? Of course my son gave a simple "YEP". Oooo that burnt him up. He said I've been and educator for 17 years and I've never had a child say no to me!!! Served him right. Maybe you've never had a child with PANDAS whose brain is too swollen to function in class, huh? )

My son was DEFINITELY at the height of his exaberation when he had the first IVIG. This second one he was withing a week and a half of one but maybe on the up side. So, it took about 6 weeks after the 1st IVIG to see improvements? Was he in exacerbation when you did the 1st one?

Currently regret it, but too soon to look at the 'big picture'. My son, who is 13, had it 3/22. Prior to it his symptoms were good for a week or two but we went through with it anyway. Two days following all of his symptoms returned. Back in the fall there was a lot of people talking about saw tooth healing, and maybe that's what we're seeing. But this increase in symptoms blindsided me. Maybe had I know I would been better prepared. Following his first IVIG 10/27 we had from 12/10 until 2/10 fairly good.

My son's ASO went from 460 to 735, and his DNase went from 480 to 1360. This was POST IVIG but none of the doctors seem to agree if IVIG can cause that or not. Has anyone had PERSONAL EXPERIENCE with that. I know a lot of people have opinions about it, so do the docs. But logically it does make sense to me if it did do it. Also note, my son's symptoms totally flared since the IVIG on 3/22.

Like Vickie mentioned, it's the irrationality that really sucks. There is no amount of reason, or punishment, or consequences that will cause them to cooperate. You just get to stand there and watch them make stupid stupid mistakes. My son's first ordeal with this was fall of 2007, he was 10. Now at age 13, having a younger child to deal with is DEFINITELY easier. Younger, smaller children, still have that 'fear' of parents (not a physical fear but that need to please parents and fear of what will happen if they don't). Teenagers, by nature, know that there's really nothing parents can do about it. That gives them a lot of power. They feel they can do what they want and their parents should not have a say in it. Plus when he was 10 if it got right down to it I would just pick his little butt up and plop him over my shoulder and take him where I needed him to go. Now, at 170 pounds and as tall as me, that's impossible. So I just get to sit there and let him physically, mentally, and emotionally abuse the snot out of me. Consequences mean nothing to them. You can lead a horse to water......

Just got my son's titers back and they have tripled since IVIG. The hemotologist says that the IVIG would be the cause. I'm waiting for other confirmation on that because he's new to the whole PANDAS thing. And of course my son's 'symptoms' have tripled as well. UGH!

Prayer might be the only thing that gets any of these kids through this! My pharamcist told me about a book, after I'm there every week for 8 months, called I thnk "Against Medical Advisement". It's about a young man who, after 12 years of taking all of these medicines including some my son is on, like Risperidal, was basically acting 'crazy'. When he got old enough he refused ALL medicines, and he actually was fine from then on. So I think the taking a break is good for them, if they can tolerate it. Risperidal has been our wonder drug. But it is very harsh. Caused my son to gain 40 pounds in 90 days. As soon as he goes off, he drops 15-20 pounds without even trying! Praying for your son!!

RIGHT THERE WITH YOU RIGHT NOW. My 13 year old son's second IVIG was 3/22 and 3/23. We had almost canceled it because he was doing so well. Then poof, 3 days after IVIG things were right back to PANDAS. I feel so bad for him. It really frustrates him. Again a teenager, I wonder if that has something to do with it. Had I thought the IVIG would do this to him I might have reconsidered.

I don't know about 'research' but I know 'Sammy' from saving Sammy is like a sophomore in college and doesn't have it anymore. And 'Jamie' from Jamie's story is 18 and doesn't have symptoms. And if you look at Dr. K's website webpediatrics.com he says in there they out grow it around puberty. That's what we're hoping for because my son is 13 so that's just right around the corner from us. I'm not as scientific as these others on this forum. Just a mom worried about her son!!

Okay, can someone explain to me how antibiotics effect antibodies IN LAYMAN'S TERMS. Because antibiotics should not, in my opinion, have anything to do with antibodies. Antibiotics should only treat the infection and prevent you from getting further infections. So to answer the question, yes he's ALWAYS on antibiotics but that shouldn't change the titers. And if he were give IG that had antibodies in it or whatever, I would think that would be kind of 'against what they screen the IG for'. Ya got me. I'm not a doctor, I am quite medically literate for the most part. And I find even my doctor picking at straws sometimes!

how can it raise titers though? Titers supposedly only measure strep antibodies. I hope IVIG doesn't increase strep antibodies that seems like 2 steps back.

My poor son. He has been dealing with this up and down stuff so much. We had titers done this week just so we have a baseline for future reference. Turns out one of his numbers went form 4 something to 8 something. The other number went from 4 something to 13 something. I didn't catch the exact numbers because I was at a lacrosse game with nothing to write on. So along with the IVIG kickback, he also just truly has PANDAS. Which is a little affirming for me. I think every parent goes through the doubt, but this is what seals the deal for us. And by the way he definitely definitely does not have LYME which I'm greatful for because I think those parents have their own demon to deal with. And he's not bi-polar they say because he has the downs but never ever the ups. Wow, I feel like there's still strep somewhere. We're going to go to an infectious disease next.

Faith, my son first had PANDAS Oct 16 until Dec 10 2007. That was controlled with antibiotics alone. We thought we'd been through it all back then until Sept 10 2009. This time the symptoms were so much worse and so different. In 2007 it was fits of rage. In 2009 the fits of rage went a step further into threats against himself. And it was more than threats, I had to get very physical with him to protect him, after an hour or two it would go away. We saw Dr. K in October, he was the first to recommend IVIG, I had never heard of it. (Meanwhile this time we had him on varied antibiotics, Risperidal for the threats, Zoloft for these days of depression he'd slip into, and Concerta for what we refer to as 'brain farts'). So 6 weeks after IVIG we finally saw vast improvement. He got back on track in school, things got very good. He got off the Risperidal and life was good. Until February 10. If you look at the grade books from school you see in Jan when the semester started all A's then a very very definite line at mid February C's D's F's. Complaints from teachers and friends. But the rage is the symptom we worry most about. But severe OCD, sleep disorder, lack of concentration to the point that if he's looking at something he can't even answer a simple yes or no. Slight tics early on not so much now - knuckle popping the worst. Anyway, he had a really good stretch of maybe a couple weeks, but we had already started the IVIG scheduling process, so we decided 'it wouldn't hurt' and might make sure in case something was lingering. Well, my goodness, I feel like I'm paying the price. Tonight he text me 'I just want to be normal'. That just absolutely broke my heart!

Oh my gosh. I know we did IVIG because my son had PANDAS again. But he was doing so much better for two weeks before IVIG. Now we're back into it full force. I sure hope this goes away soon. He was bad from September through early December. Good from early December until February 10. Started improving mid March but we had the IVIG scheduled for the 22nd so we went ahead with it. Now he's completely PANDAS again. THIS SUCKS.