thereishope

For the record, I do want to say that I appreciate you trying to learn all you can about PANDAS and to get the info out correctly. I can tell you trying to do that.

Bad News: My son had what we thought was a cold on and off going on 3 weeks now. We took him to the dr today and he has a sinus infection. Good News: He is not having an exacerbation as a result of the infection! This is great news for us. He has had minor to moderate setbacks as a result of viruses and allergies in the past. Hopefully, this means his immune system is calming down from the months of chaos it experienced. Let's hope he continues to remain symptoms free.

Lauren and Lynn Johnson will be appearing on the Today Show tomorrow (Tues, 12/8/09) for a follow up.

I don't think vaccines are mentioned in the NIMH update, is it? I know it appears in the FAQ, but that is more of a parent guide rather than something that will be sugessted to the NIMH.

I just get frustrated when we feel we need to clean up the mess and correct every incorrect or incomplete statement. We have to police every tv show and every article written. I know it needs to be done, I just need to start a Word doc with a reply for every wrong statement so I can just cut and paste into emails and comments. It would save so much time!

Actually, those sound like my son's rages/meltdowns when he had them so you're not alone. It's important to remembr that when they are like that, reasoning is useless. That's how I knew he was recovering, I could start using ultimatums (like no tv) to get him to behave and it would work like it's suppose to with a kid his age (he's 6 now). I am too tired to read previous posts to find this answer, so I'm just going to ask. Have you taken him for a recent strep test?If not, take him......and all other family members too. If it's an infection causing this, he won't get better until you rid him of infection. It'll just get worse.

Just bumping this on the board for those who visit the forum tonight:)

Is this NIMH revision complete? If so, how do you suggest we start petitioning them to chnage their existing page? I plan on sending this and the FAQ paper to local docs once I get the green light.

My son had his IEP in place since he was 4 (he's 6 now). That is something very important for other parents to know. There are different rules for Early Childhood. It is easier to qualify for services in Early Childhood. And they will continue when they enter elementary. So, I do encourage parents of preschool age children who think their children may benefit with OT, speech, etc, to contact you district and get the process going. It's a long process and takes months. In OH, intervention starts at 3 years old. My son was not even in preschool at the time and he got services. Also, if you send your child to private school or preschool, you are still entitled to services through the public school system.

Great news! Thanks for the update.

It's hard to say why they feel they need to go right after being in the bathroom. My son did that sometimes. He would walk out of the bathroom and say he needed to go again. Since he was only 5, there were a couple of times I went in to see if he actually had anything and if he wasn't emptying his bladder. He'd only have a drip come out the second time. For parents whose children are going to the bathroom a lot, it may be importnat to know if they are actually urinating that much or not. I admit to putting my ear to the door to see if I could hear urinating. It will help you know if you should take the child in for UTI or bladder infection. Also, if they are using peeing as an excuse to wash hands mroe often. This was another reason my son would use the bathroom more. Children learn at a young age to lie to complete their compulsions. So, my son visited the bathroom often for different reasons. During exacerbation #1, it was an excuse for handwashing. He'd go through the whole motion of trying to pee to justify washing his hands again. In other exacerbations (when he did not haveexcessive hand washing) it was some need or fear or something that he was convinced he needed to go again. Frequent urination is a PANDAS symptom too. During excerbation #3, he was wetting his bed a lot. So, it's a symptom that could fall under various umbrellas. You really have to be detective to figure out what the reason is.

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine? Can you please tell which vaccine the child received? How long after their last PANDAS exacerbation did they receive the vaccine? If they had a setback, how severe or mild was it and how long did it last? If they had a setback, could there have been any other contributing factors? Thanks!

Nail biting is OCD.

One idea for organizing is to start the thread with an intro of what the thread is about. Then start adding comment posts. each comment post is a new OCD catagory. I think I agree with this - I have listed them under the Obsession categories (so that parents might begin to get a sense of the thought behind the compulsion) but I have listed almost entirely behaviors vs thoughts. In general, it is the behaviors (usually the compulsions) that parents will see & that young kids can communicate. (and any "expertise" is sadly due to misdiagnosis for far too long, and feeling that ERP was our only tool to help our daughter through so many horrid onsets. With severe OCD in our house, it felt like there was no choice but to immerse ourselves in her world. Having medical help now is such a blessing). I think I included most thoughts from the group -it is very long. I'll post it in a new thread - hopefully the site will take a post that long!! We shall see....

As for school, don't get too scared about the word "special ed services". My son has a speech disorder, has an IEP for it, gets services. He is seen as a special needs child because of his speech. It took me awhile to get over that term "special needs" and even more when it was definied in our state as a disability before it was changed to disorder. I say get the evaluatons done that are needed. If anything, get them done now when he is bad off and will qualify. it's hard to qualify for services. But once you got that IEP in place, they are responsinible until all goals are met. Also, know that if he gets services it doesn't mean he will be pulled out of his current class. They are required to try their darndest to keep the child in a regular classroom and the intervention specialists visit the child in the regular classroom setting. He may also qualify for special help in testing and follow different grading rules than the other children. And thus, make it harder for them to fail him. Back to the croup. when he got croup, did he go on a steroid for it? Did you ever notice improvement while he was recovering from croup?

Great job! I don't often find peole who like to organize as much as I do:)

I was thinking about those 2 vaccine questions in the Q and A. I think I am going to say that it is okay if you omit them. As for the first question about whether vaccine causes PANDAS. I don't think it causes PANDAS, but I do think that they are amongst the toxins that our genetically suspceptible children are exposed to and may aid in having the possibility of PANDAS sufrace and be "ready" for strep. As for the second question I think a new parent reading that will just have their head spinning. We have read the stories about kids have mild and severe setbacks soon after a vaccinnation. But some have also said there were other variables that may have had some responsibility in it resurfacing. What I don't know is how many kids went on to have vaccinations after PANDAS being triggered and were just fine. Even so, I would them have to ask those parents which vaccines they were and how long after there last full fledge PANDAS exacerbation, they received that vaccine. I guess what I'm saying, is for that question, it's just too long an answer with too many clauses and too many forks in the road. For those who are familiar with autism. I'm curious when it started becoming more vocal that vaccines play a role in autism, can you try to give me a "history" on that helped or hindered the cause? Now I think I am going to start a thread and see actually how many people think their child had a PANDAS setback or excaerbation due to a vaccine Like I said, we don't really hear from the people who did fine with vaccine after PANDAS surfaced. Maybe they don't feel comfortable speaking up? I do know soem states are hard to opt out and maybe those people living in those states need to hear those stories too.

First, welcome. I don't have much time to type a lot, but my son had a lot of OCD. If you read the new OCD topic, everything I list, he did and more. I omitted what was already listed. However, he was not a perfectionist in terms of his room begin clean and such. He'd wear torn clothes too and mismatched. Don't let that stereotype steer you away from what your gut tells you. And actually, his one oasis was the park. He acted fine there every time He even played in the dirt and he had a germ/dirt fear!

I read it and I need to think on it a little. To keep or omit...hmmm... I'd like to hear some other opinions. If we omit it, do you think the topic of vaccines comes up enough that parents will ask the forum before vaccinating just so they can make an educated decision? Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system." I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

In any of the questions, does it touch base that viruses can cause setbacks? Many have said whenever their child's immune system is activated, they see some PANDAS, varying in levels of severity. Perhaps vaccines could be mentioned there. Not necessarily devote a whole question to it, but add it where appropriate. I think I was looking more into helping parents find the reason for symptoms surfacing or worsening (like a past vaccine) rather telling them to boycott them. They could make a decision about their child's future vaccinations from there. The whole idea is to teach new parents from our experiences. I think it would be a shame to let them learn the hard way. Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system." I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

You know what, I reread "Q: Do I need IVIG or PEX to cure PANDAS?" and realized I misread. I probably skimmed it too quick. I thought it said it cured PANDAS. Sorry. That's what prompted me to ask that question. I put in a Q/A -- does that work -- or were you saying to remove the item from the FAQ. By the way, happy to add/remove anything here... Figure we're the best testers of what makes a good FAQ.

That makes sense. when I think hoarding, I think of keeping little pieces of paper that mean nothing. Collections for everything. Things like that. As the psychologist explained it, collections of special things is one thing, but keeping things that shouldn't really have any special meaning behind it is another. Luckily, the spit with the strep test was the only bodily function he needed to keep to himself:)

Do you want to include the question if PANDAS can be cured? It seems many of us have different views of what the word "cured" means and if it can be. Or rather if it goes into remission (which is more the way I view it).That one gets asked sometimes, but not every time.

I don't know how this would relate to OCD, but my gut tells me it does. After my son got a strep test done, he'd be home and tell us he wanted us to break into the doctor's office at night and steal the swab with his spit on it. He didn't want them to have his spit. He needed to have it back.He was very serious and saw that as a reasonable demand. He would refer to us doing this for a week or more after the test was done.

I know there were times when I had to pull, drag, and carry him to the table screaming because he didn't want to stop what he was doing. Then once I sat him in the chair, he'd run off again.