forjpj

I could possibly be talked into something...especially if it was split up!!

LOL!! God manages to pull through with some good ones doesn't He?

You did the right thing!! No matter what the turn out!! Everything you do is for your child!! How can that be wrong? Keeping you in my thoughts and prayers!! Sarah

Well I think we will start planning July meeting. I will still be there Saturday in case anyone shows up. I sent pms to everyone here that responded from Va, a couple of inboxes were full, but I will keep trying. Pass on the info though if you know of anyone!! How bout the Ikea are?

Bump!!

I think part of my son's issues, at one point, was avoidance of the bathroom and all the compulsions that went with it. And then some of it was the add, just to busy to stop!!

We had these issues. Felt like it was a combination between pandas symptoms and augmentin. The wetting improved once the pandas symptoms improved after plasmapherisis. The soiling has improved once switching to omnicef. Still kind of watching and waiting on that one before I take him to the gastro doc. He had been evaluated for celiac, but the doctor felt it was only a slight concern.

Let's go! You got me humming the Battle Hymn of the Republic!!

We are here to handhold!! Dr. Latimer won't be in her office until August (hopefully back by then) due to family tragedy. Some of the docs do telephone consults, and will work with local docs...I think. I haven't had to face the vaccine question yet, but I think a lot of people do reframe from extra vaccines. I'm sure others will have more in-depth thoughts on that which I want to here to because we will have to decide that in the next year ourselves.

I'm so sorry!! These people make me so mad!! I really hate when people who don't live a situation decide they feel some computer research makes them experts. This whole pandas experience really has taught me to live and breathe the "don't know until you have walked in another man's shoes" life lesson. I have taken to writing letters to those that have presented problems to us along the way...ER, misguided but well-meaning friends, cranky neighbors. They probably don't care, but it allows me to present all my feelings and reasons down on paper in an organized manner, and I don't have any what-ifs!! This way I don't lie awake at night wishing I had explained my self better. Actually, I've gotten pretty good responses, and I think I have educated them in the proces, at least I hope. Don't worry you will come out on top!! I'm just sorry it had to be someone so close!! You don't deserve this!! Sarah

Good Luck!!

We didn't really have any long-lasting improvement on the pandas end due to removal but my son has been much healthier as far as colds, sinuses since then. The year his exacerbation started which led us to pandas, he had had constant sinus problems, and sore throats. I figured it was one step towards improving, and kind of laid the groundwork for giving his immune system a shot at healing. And I agree with LLM, pandas was taking way more from our lives than surgery!! Not to mention, Dr. L gives a very convincing speech on their uselessness!! Don't let the doctor rush you though, make sure you are comfortable!! Oh and Dr. L also stressed, make sure they get the adenoids too, no point going in unless they get both!! Good Luck!! The constant decision-making caused by pandas is horrible isn't it? Sarah

Thanks!! We will let you guys know!! I'm so excited we are coming together!! Sarah

Awesome!!

Well that is what I figure we can talk about. I wanted to see who I got from the Richmond area and the Charlottesville area first, then we can go from there. F'burg is an hour to hour/half from most of the highly-populated areas. Maybe we will have in enough in certain areas to group them smaller, or even rotate meeting areas. Do you think you can come?

Yeah, my son does this. He repeats a lot, and wants me to respond in a certain way.

Well I responded from the saving sammy page which would be pandas foundation. I'm not really sure how much organization there is to it yet, and I'm not aware of any goals. I really think they are just trying to get people together, whether the goals or an "alignment" with one organization has even been thought about...I don't know. They just told me all I had to do was find a place . I will have to look at pandas resource...last time there wasn't any activity. I will post something up there too if allowed. I agreed...we should be united. So far it looks like it is just me and my sis...oh well, at least we will get a lunch out of it !!

Well I agreed to get the Virginia support group. See the Saving Sammy/ Beth Alison Maloney facebook page. Ok...I'm a little late getting this going but I've got a place and time arranged. We were shooting to have all the meetings the 4th week in the month, and that is next week. I have arranged for us to meet at a reasonably-priced restaurant, the Greene Turtle on Sat. 6/26 at 11:00 am. I didn't do 7:00 pm, as they requested, in order to avoid heavy rush hour traffic coming south. The restaurant is located right off I-95 so I figured it would be easily accessible. I reserved a table in a quiet nook in the restaurant, and if so desired...since everyone is out already, and children are taken care of... there is convenient shopping . We can figure out better time/place once we get started...I'm trying to be convenient to the majority of populated areas in Va. I think the meeting time and place will be good for most Virginia areas except southwestern, and the Va Beach area, but even that one is possible. The Greene Turtle One Towne Center Building 2000 Unit# 2100 Fredericksburg, Va 22407 http://www.thegreeneturtle.com http://www.spotsylvaniamall.com/home/index.ch2 Hope to see you there, and if not then next time! Realize summer and Saturdays are busy, not to mention this is last minute. PM me if you think you might make it, so I know I have a big enough table.

Donna...it sounds like you are in the right place. My son was diagnosed with sensory integration disorder and ocd when he was 5. He had scarlet fever when he was two. At age 9 he was diagnosed with pandas, Dr L felt this had probably been the problem all along. It is very upsetting to think of all the children suffering and misdiagnosed. I'm sorry you are here, but at the same time I'm happy you are...if you know what I mean!!

Yeah...you are reading it right. I think today was the last day to get an early sign-up discount. I really want to go but I have to wait till it gets closer to the date to decide, and I have to find a spare $160 .

I know what you mean by being happy about someone being sick. Any answer is better than none!! Keep us posted on the treatment. Sarah

Good Luck!! Keeping you in my prayers!!

Same here...mine is fine at school. At most maybe the adhd and fidgety symptoms, and yes it is a blessing and a curse.

This is how my son's illness started...we saw it way before the compulsions came back. I have to agree with Amy...when they are in pandas mode I don't think there are too many tricks that work...they are in fight or flight mode at this moment...you can't fight centuries of instinct evolution. It took me a lot of chasing before I finally caught on, and of course it is all easy to write while not in the situation at this time. This is my goal at least! The only thing I can say that may help is if you haven't already, reduce your expectations a lot. And if he does something against your wishes punishing him while he is in "pandas mode" probably won't work, and it will just prolong the episode. As long as he or someone else isn't in danger you are going to have to let him do what he is going to do. So basically, control the situation by not losing control...try to say no less or just ignore. If he does something against your wishes, like run outside after you have said no, punish him after the fact, when it gets it out of his system. As he is doing it you can say something like "this is not appropriate, and you will be punished." I leave the punishment up to you. At the time my son was very into his DS so if he did something bad he would have to earn it back by performing so many good deeds. The good deeds would be anything...small or large. This way he had some control of the punishment, and at the same time he could realize how many good things he actually did during a day. He was having self-esteem issues...why is my sister so good and I'm so bad type of stuff. I'm not sure how much this helped us, but I think it kept my sanity. Feeling like I had lost all control was horrible. So my motto has became "control by not losing control". Good luck! Just some suggestions! Remember whatever works for your family is the right thing!! Sarah

Good Luck!! Keep us informed!!