thereishope

double post

When all strep tests are negative but a sudden onset has occurred it could be that this is not the first exacerbation and now viruses trigger exacerbations as well. Parents may not recognize PANDAS symptoms if their child is very young, the symptoms are mild, or the parents can find a reason for the change in behavior (school starting, moving,etc). Even so, when the behaviors change dramatically and off the charts, always rule out strep. Afterall, if there is an infection, your child will not get better until the strep is gone. It is also easier to get the antibiotics if you have a documented infection.

The main purpose is to try to limit contracting strep. I giggled the first few time I referred to my son's surgery as "t and a". Yes, tonsils and adenoids. It is not necessarily routine for PANDAS kids and I actually think the guidelines is that PANDAS kids don't really benefit from having tonsils removed. However, the ENT told me that it reduced his chances of contracting strep by 80%, so I went ahead and had them removed. Then a month later he had strep again But he hasn't had strep since that last time! I know one person that was a strep carrier and after surgery never had a + strep test again. And I know others who continued to have chronic strep post surgery. I guess it's a personal decision. I saw it as I don't know how many times surgery would prevent strep. But even if it prevents it once, it's worth it.

I received an email from Lynn, Lauren's mom. She wanted me to pass a message on to all of you. I will just quote the email... "I can't post to the forum from my iPhone for some reason. Can you post a big thank you to everyone for their support. Let them know that we were bumped from nancys show due to the tiger woods breaking story We will be on inside edition tonight and foxtv's live desk between 1-3 pm tomorrow."

I think I remember seeing a brief blurb about viruses under the last bullet under negative strep tests.

YES!!!!! take him today or tomroow. If teh rapid comes back neg, make sur eit is cultured. As family members too. I've never had to fight the doctors in order to get my children swabbed. So start out polite and matter of fact. Now, if the say he doesn't need one, well, then demand it. When I make the appt, I just say I need an appt for a strep test.

I thought it was interesting to watch. I felt like they listened to the feedback from the last show with Saving Sammy. Little things like clarifying Dr Laura wasn't the treating doctor like it looked like with Sammy. There were a couple other things, but I can't recall them off the top of my head. They did get seem key words out there that were good... PANDAS prophylactic antibiotics steroid need more research Overall, it was a decent segment.

A few here have been told that there must have been a traumatic experience recently when it was not the case. When he was sick with the flu, did they do a strep test too? If not, your first step is to take him in asap for a strep test. If the rapid comes back neg,make sure it is cultured. Have you noticed as you look back over the years whether you ever seen an abrupt change before this one and just over time it went away? And to clarify, the OCD was sudden onset? You could try to give him some Ibuprofen and see if it eases his OCD. Let us know how that goes too.

Does he continue to be 98% tic free? Do you notice any other behavior changes? Start the antibiotics and be watchful to see if anything (tics, behaviors, odd behaviors) surface or worsen over the next few days. I would also suggest taking him for a follow up strep test at least 14 days after finishing his antibiotic to ensure the strep infection is gone. Often with PANDAS kids who do not get classic strep symptoms (like my son), their behvaior changes are what prompts us to take them to the doctor for the strep test in the first place. I guess you can say their behavior change is their symptom of strep. Also, just because he does not get classic strep symptoms does not make him a carrier.

I just remember sitting at the table thinking how was he suppose to get better when his body wouldn't have the nourishment to fight it. If he didn't have the nourishment to fight, he'd just keep getting worse. I always kept a box of Dunkin Donuts on the counter for a couple weeks and made sure all food he liked was in reaching distance so he wouldn' have to ask. When he began to come around, he went through phase like he'd enter the kitchen in search for food but didn't want anyone to know it. If I saw him enter the kitchen, I'd back off into another room. After he'd leave the room, I would go in and notice crumbs on the floor. I didn't want to chance he'd stop eating again. I knew that if he went long enough w/o food, his stomach would adjust to that feeling and the hunger instinct might start fading.

I don't mean to be annoying, but do we have the "green light" that this update is complete? If so, is there a plan or preference for how to go about petitioning/suggesting the change to the NIMH?

Some have not seen any difference while using it. As for my son, when I tried using it early on in a strep triggered exacerbation, it did not help. But he was also bad off and was in back to back infections. I have a feeling it was just too much inflammation going on. When I use it for viruses, it helps. It would help with the first dose. I would say just because it didn't work before, it doesn't hurt to try it again. Perhaps different circumstances will have different results.

I'm actually finding it easier to pull up old threads using google. I need to go grocery shopping, so I don't have time to search out the specific one I wanted, but here's one quote froma thread... http://www.latitudes.org/forums/lofiversio....php?t5650.html "mati's mom Oct 21 2009, 02:27 PM My PANDAS son never tested possitive for strep or had any throat symptons. A stool analysis revealed strep in the gut. Watch out for any GI symptoms, or just not feeling well. My 5-yo (he is not the one with PANDAS) complained of just "not feeling well" off and on for about a week, until I finally took him in. He had strep. I guess we are all used to the throat ache, high fever thing, but it can present in other ways. "

You guys! I already had a hard time keeping everyone straight! Don't be mad if I continously ask for history reminders:)

Many have seen the benefits of Ibuprofen. We think it takes down enough of the inflammation to see an improvement in symptoms for some children. Eventually, you may not need the Ibuprofen but they only way to know that is to stop giving it. Personally, if I knew my son had strep, I'd give it to him for at least a couple of weeks before testing the waters without. I would think it's easier to ward off impending inflammation rather than trying to take down swelling that is already present.

During my son's 2nd strep triggered exacerbation he just stopped eating. I mean he ate nothing. He was 5 years old. At this point I knew he had PANDAS, and I remembered reading on a website that anorexia could be a symptom so I knew I had to tackle it asap. He never voiced why he wouldn't eat. I had to begin spoon feeding him for nourishment and it had to be things like yogurt and appleasauce since he refused to chew since he did not want to eat. He would lick small amounts off the spoon when I put it to his mouth. In the course of 1 1/2 weeks he lost 6-7 pounds putting him at about 36 pounds at 5 years old. He had others problems present during the time of his refusal to eat. I even explain to a 5 year old in detail what a feeding tube was. He refused to eat. When he finally began eating again, it was a process. First he had to get all his own food. It had to be cold, individually wrapped food. Then he graduated to cooked food, letting me get his food together. Today, he's completely fine and his eating habits are back to normal. He is even trying new things and eating things he doesn't like because I'm his mom and I tell him to!

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Dosing depends on weight. My son weighs 45 pounds and can get 200mg (per his doctor). As for how often, well, that varies. Some are giving it daily, some are giving it when the PANDAS symptoms vamp up. With me, I only give it when I see he has a virus or questionable behavior surfaces. Luckily he hasn't had strep for a few months so I haven't had to give it for that. If he has an virus, I will give it every 6 hours at first then dwindle it down to once a day then down to nothing at all. With my son, it takes about 1/2 hour to get in his system. If his PANDAS symptoms are moderate, I will see the Ibuprofen wear off around the 5 hour mark. If the behvaiors are mild, I can get away with only one dose a day.I time it around school.

Is your 5 year old dd PANDAS? When did you last take her for a strep test? And she's saying her belly hurts? I remember someone on here saying their daughter or a friend of theirs complained about an upset stoamch for months. They finally figured out she had strep in her gut. But I can't rememebr what test you do for that. Maybe someone else knows?

sww817, My son was put on antibiotics for his sinus infection. Luckily, he's not bothered or uncomfortable by it, so that's good. During the course of PANDAS my son has only had antibiotics and he received a steroid burst with his second strep triggered excaerbation. I think I see that with him the further time goes by since his 3rd strep triggered exacerbation in March 2009, the viral triggered setbacks get more minor. He had strep triggered PANDAS 3 times in a span of 6 months, but now he has been strep free since March. I was very nervous when I saw him getting another virus because he just had H1N1 about 2 months ago and he had 2 blips in behavior form that. I thought for sure this virus was too soon after that he was going to have a setback. I gave him Ibuprofen for a few days when I noticed the cold to try to nip any impending inflammation in the bud. And he hasn't even received Ibuprofen for probably 4 days now. So I know nothing is covering up what I am seeing. Your son may have a stomach bug. Even if he's on antibiotics, that won't protect him from something viral. I'd be suprised if he got croup while on a steroid. They give a steroid for croup. If it means anything, while we were recovering we would have moments with bad setbacks. But luckily they wouldn't last for more tha a few days. It was odd, with my son, I would notice a decent size bump in recovery and then he would bounce back actually better than he was prior to that bump. And if you add a virus to that, it makes sense that would have an unfortunate setback. Do jot your son's behavior down on paper or calendar. Perhaps you will see patterns in his recovery the same way I did. It helped me a lot and eased some of my anxiety to know bad behavior didn't always mean we were entering heck again. The thing you need to follow your gut and do know when to draw the line in waiting and when to bring them in. Don't wait it out too long.

It was posted that it should be around 8am EST. It's in the Dr T post.

May I also add that a phrase that needs to be "adoptted" by the PANDAS movement is "seeing tehelight at the end of tunnel". I used that phrase at our turning point and I know many others use it as the perfect analogy. It is so appropriate.

Yep. My grandmother almost died from strep or scarlet fever in a time prior to penicillan. I had tonsilitis all the time as a kid. Probably 5+ times a year.

Thanks for letting us know. And specifically for letting us know the time slot. I wish you luck with your appearance. I hope everyone remembers there's only so much one can say in 60 seconds. You have all of our support and thank you.