thereishope

I've had glitches in my computer before when I couldn't post for a day. Hm. Make sure her cookies are enabled?

You know what I found interesting. I was looking up Ibuprofen to see if I can get mroe info why it works. In Alzheimer's research they found that NSAID can delay the onset of Alzheimers, but IB was more effective than naproxen (Aleve). I think they said IB passes through the BBB better? Sure can... Diana P said good things have been said about Aleve too. We can't support that as we didn't see any benefit from Aleve. Aleve isn't an Ibuprofen and operates in a different way. It might be effective, but we didn't see it when we tried it. If there's others who have seen a benefit from Aleve I can add it. Buster

On the Ibuprofen one. Can you () w/ brand name . I don't think some know that Advil and Motrin are IB. Ibuprofen (Advil, Motrin) Do you think we should add that it is not recommened that you do not take IB and a steroid at the same time?

Here's a thread devoted to rages you might in interested in reading... http://www.latitudes.org/forums/index.php?showtopic=5628

My son had bad rages with his second exacerbation. He would have meltdowns that lasted 2-3 hours. He would also get physical w/ me with hitting, kicking, etc. I didn't give him meds to help with it, but I think some have some supplements they give. Eventually, once the strep was erradicated and the healing process went on, the rages and meltdowns stopped. He no longer has them.

I will list the questions I have seen a lot, but I don't have time right now to add the answers.Some may end up being combined with others. this is my brainstorm.... I've read a lot about Ibuprofen, what can it do for my child? Is it okay to get my child vaccinated? My child PANDAS symptoms are surfacing and the strep test was negative, what's going on? What is a IEP or 504 Plan and how does that help my child? Where can I find a list of doctors in my area? Should I get a follow up strep test done on my child. If so, when? What is IVIG and PEX? Actually, we can just start a glossary of terms to tag onto the FAQ.

Just a bit of info that I found interesting. The first psychologist we saw (then stopped seeing rather quickly), said that the number 4 seems to be the most "popular" number that people with OCD is obsessed with. That was my son's number. He would fill up an entire piece of paper just writing "4" over and over until there was no room left. Open the fridge and can't pick something out until he counted to "4". Had to say good night 4 times. The list goes on.

I don't think they would omit it over the lack of a percentage. Especially when it is a symptom and not something like treatment.

I'm confused too why he stopped the antibiotics.

.

Right now, I don't have anything to back it up. But I did find that anorexia may be a subtype of BDD. BDD is a OCD spectrum disorder. If anorexia is a subtype of BDD it makes sense why anorexia would occur with PANDAS since OCD (along with its spectrum disorders) is common in PANDAS. But that's off topic. So, few things. We could have a draft for NIMH w/ all required citations and a separate parent draft available that doesn't require citations. Also, start threads like "Study information needed" and list what studies we need to back up wanted statements and maybe somene else knows of something.

The issue with the symptoms these kids experience is they can fall under many umbrellas and since they are children and children may not admit why they are doing something, you don't know what umbrella it falls under. For ex, my son. He was 5. He stopped eating all together. I had to spoon feed him and even with that, it was lick by lick. Why did that happen? I don't know. I just knew to try my darndest to get that one over with for nourishment purposes and because I read on a website that anorexia was a symptom. Me explaining to him what a feeding tube was didn't even get him to eat. I too think that anorexia in PANDAS children is > 2% but unfortunately Sokol's work stopped and the 2% number comes from the Swedo study. The reason for citing every statement is so that there's a research report that is backing up the comment. Hopefully there are no unsupported opinions on the page at this time. If you find something with a higher incidence rate for anorexia, I'm happy to update - our own daughter had anorexia nervosa and didn't have the fear of choking but rather the fear of weight gain (in a 7 year old). Thanks, Buster

Did you see Dr K in person and he wrote the script or were you able to get a local doctor to write the script for the steroid per Dr K's request?

Oh, wait, when you say the kids needs antibiotics to erradicate the strep, should it be added that many of the kids have resistent strep and need stronger abx. A high number of parents that first come here say their kids get amoxicillan. It is a fight sometimes to get stronger meds. If it's in writing, it may not be such a fight and recovery may start sooner.

That's why you email Oprah or twitter her producer and politely give them your opinion about Ms Maloney and how your info on PANDAS varies. Also give them links to PANDAS Network and this forum. I simply say, if you would like to view the stories of many families living with PANDAS and see their struggles, please visit this parent forum at.... I only give the link to this forum to reputable outlets. I don't want jerks spying on us, quoting us wrong, or chiming in on here. Let them know it can be a "lively" show. They wants ratings, right?

Well, I see my child, but I do know there are some who never had a documneted strep infection. If I had to look for something to change, add, etc, it would the use of the steroid burst. You say it is used as a diagnostic tool, but some have seen it stop an exacerbation in its tracks and not resurface after the steroid. Others have seen it aid the recovery. I know if my son gets strep again, I am begging for a steroid. I've seen the difference in recovery times for him w/ and w/o a steroid. But, then, if there no research to back it up, they probably won't add it. I actually think the anorexia is higher than 2%.

-Has to tell you when to stop pouring a drink. The drink needs to be at a certain level -Messing with seatbelts over and over -Wear the same clothes over and over -Change of routine sends them into meltdown

You have to repeat back what the child says because they need to make sure you heard them

These may not be direct symptoms, but more red flags... -If they all of a sudden ask you to wipe them in the bathroom when they have been self sufficient for awhile. -Having to go to the bathroom more. My son knew we were aware of obsessive hand washing, so he went to the bathroom more often knowing he would HAVE to wash his hands afterwards. -Saying goodnight has to be done a very specific way. If you vary it, the anxiety rises and they need you to start over -Adversion to glue, glitter, etc. This could be sensoory or OCD -Pushing chair in until it is just right, then making sure the chair is "even'. Sit, fix chair. Look left, look right. Make sure it's even -Breathing off to the side. -Having to get their own utensils. Keeping utensils separate from others -Obsession with a certain color -If someone in the family gets hurt, they need reassurance over and over it will not happen to them -Fussing with plate until just right. He'd turn and twist it until it was the way he needed it to be -Walking with closed fists -Wiping hands on pants over and over after toouhing something. -Needing to spin or shake after doing something like passing a specific person or a certain room -Needs to get their own food -Needs to eat self conatined foods like cheese in a wrapper, applesauce from a single serve container I am so sad all of these came from personal experience and if I rack my brains more, I'll think of more:(

Welcome to our group. Did Dr K mention anything about getting a Cunningham test done on your child? Also, you said he had 2 strep infections. How soon after the + strep infections, did he shut down? What antibiotics and for how long was he on for to erradicate the strep. I know it was years ago, but maybe you remember?

Many are talking about vaginal strep. Can you tell me what it looks like? I know discharge is mentioned, but does it have to have discharge? I have a 3 year old girl. My other kids are boys. So (except for myself) I don't have anything to compare to and I have been lucky to never had issues of my own. I've never even had a yeast infection. Sorry, men, I know that too much information! Sometimes she says it hurts down there. It'll be red, but diaper cream clears it up in a day. Since the cream clears it up, is it just irritation? She is potty trained.

I'm happy with it. Once the final draft is ready to go, do you think it would be a good idea to print it out and send it to local docs? One can mail to them and say that PANDAS advocates are petitioning the NIMH to update their information. Provided is a copy of the recommended changes. This would be a way to bring PANDAS up to them and provide them with current info without sounding like we are preaching to them. We can then also provide them with PANDAS experts contact info. We can even provide more studies that may be of importance and make a whole "media packet" of sorts out of it.

If you do send home a note, I suggest adding that PANDAS is not contagious. It is an autoimmune disorder.

It depends on the school district. With ours, I cannot send a note home to parents, but I do get a call if a child in either of my kids class calls in sick with strep. I don't think they are even suppose to do that, but they do. Before you send anything to school, ask the office for permission and know that, unfortunately, many parents will simply discard it and forget about the request in the first place. Take the peanut allergy. Every year, I get that note sent home and the teacher verballly telling parents that some kid has a severe nut allergy. Please don't send bakery items into school for sharing. Parents continue to do it. They forget. The teacher is amazed whenever I send treats w/ a note reassuring them it is completely peanut/nut free. My kids do not have a nut allergy. But then as I type this, I say to myself...If they can send home a note about a nut allergy why CAN'T they send home a note about strep? Great, something else for me to fight.

oops. Should have looked at the revised edition. You supplied a brief explanation.