Suzan

Hi! I had to skim (sorry but I'll have more time later) but your story sounds SO MUCH like ours in regards to sensory issues. My oldest daughter went from a loving child to not wanting to be touched, freaking out with the fan air, flapping hands, the list goes on.....The lining up toys reminded me of these pictures that I just have to try to post. This was when things were bad but not always so bad and of course no one would get it that I was starting to think there was a problem. I mean, what kind of kid is obsessed like this with snow globes? And this is only a small part of what was going on. I don't know if these links will work to my snapfish account... I remember this day so much, I love her so much and it breaks my heart to see these pictures knowing now what I know. http://images1.snapfish.com/232323232%7Ffp...C56%3A%3Anu0mrj http://images1.snapfish.com/232323232%7Ffp...%3C56%3A6nu0mrj Also, I wrote this story years before I knew anything about PANDAS and we were just on the sensory path. It's interesting for me to read this through the PANDAS lense. http://www.sensory-processing-disorder.com...PD-Journey.html I must be nutty tonight for digging all this up, but your story was really bringing up a lot for me. Thanks and welcome! Susan

Judy, got your PM but I can't reply to you for some reason so I wanted to reply here, hope that is OK... It stands for Defeat Autism Now! DAN! They have specific protocol that they follow for autism but from what I have found, it touches what we deal with with PANDAS kids since many of the conditions or symptoms are similar. If you search on Defeat Autism Now or Dan! Doctors, you will probably get a lot of good reading on the internet. Our Dan! doc has us on all types of natural supplements to support the girls systems and calm them down, etc. Good luck to you !!

I feel lucky that our doctor agreed to it. He's a Dan! doctor and very against antibiotics due to the yeast factor. But he knew about PANDAS and agreed to try it based on the immerging data. I don't know how long we will be able to get a prescription from him. I feel like I need to hoard them! We also have a teacher in our school who is prone to strep. I made sure to tell the principal to ensure that was not either one of my kids teacher. Are you able to ask for a different one? I realize this may not be possible, maybe only one K class, etc. I know of things that should boost the immune system but I don't know which ones are safe for our kids..... Susan

How did she do? How did you do? Sounds like you did a great job letting the school know. I totally understand how you feel about not wanting to back slide. School starts for us next Tuesday. DD8 is finally starting to turn for the better I think. I'm so worried this will make things worse again. Susan

Hi! I'm glad to see you here and to read your summary about Meg too! Is she still going to Montessori school this year? My girls go to a public Montessori program here. I agree about the antiboitic dose. I think, at least in the beginning it would benefit to go up to 250 mg. Regarding long term strep prevention that you mention EAMom, would this be better split up or at one time each week? Thanks!

My heart is breaking for you guys today and for all of us really who have to go through all this with little support. susan

Yes, obsessed! It's my job to give them a chance for a happy, healthy life where they can have a chance to be a kid. How can we not be obsessed? Last week I was feeling much like what you describe. I was so deeply into it I was asking my Mom, "Am I just crazy? Maybe nothing is wrong. Maybe it's me". This week, things seem much better. Hang in there..... HUGS! Susan

Just wanted to say HUGS and good luck. You have gotten good advice so far. I know that the search for a doctor is a hard one almost everywhere and especially in a small town. We use a Dan! doctor and that has been our best bet so far. Susan

I've had doctors and friends tell me the same thing, that I'm not strict enough. They just don't get it. I try to explain what dd8 does when she's in the bad zone and it's so hard to explain. I call it the "push-me-pull-you" because she'll push me away and pull me back when I try to leave. This gets me crazy inside. It's so hard to handle. When I react badly to her, I feel so bad afterwards because she can't help herself. This morning I was so proud of her. She woke up thrashing and angry when I rubbed her back to wake her up but would cry when I left the room for me to come back. I'd come back and she'd start thrashing and whining. She knew I was leaving for good the next time and she cried and said "let's just start over". So I rubbed her back and she lay there and did nothing. This was HUGE for us both. Then I pulled on her foot and cracked her big toe by accident. That got us laughing and she was fine after that. A toe crack, who knew Regarding TV, oh yeah, we use it whenever necessary. We used to watch huge amounts of TV. It's hard on my Mom who grew up anti-TV. DD 6 needed it just to make it through the day (she's a big spongebob watcher too!). After she went gluten free, we started watching much less and she's doing so well on her antibiotic treatment, we don't need it as much for her at all now. Susan

http://www.autismone.org/content/working-t...tial-homeopathy So my Mom has me reading about homeopathy. I found this presentation which references PANDAS and strep specifically. If this really worked, it would be incredible. It's expensive, but in relation to IVIG it's not. Too bad there's not a guarantee I see in this thread there have been some good things come of homeopathy. Any other thoughts? I'm back to feeling hopeless tonight. Susan

Good luck to you. I felt exactly the same way. Not wanting them to have PANDAS but knowing it was true if the test came back negative I would have been lost as well. I hope you enjoy your vacation. Try to relax and have fun!! Susan

Sam, I missed your post yesterday. How is Shae today? Did you get to the doctor? I'm concerned for you guys.... Susan

Until the molluscum erupts, they look like small, pearly (meaning smooth and sometimes lighter color than the skin) bumps. They could be mistaken for warts. Once they erupt, then they look awful. Actually, once they start to erupt, that is when they are going away and actually getting better. They end up with a bad pimple type reaction that takes a while to go away and can cause scarring. My kids never got them on the front of their knees but I imagine it's possible. I think this picture is pretty good of what they can look like before eruption... http://www.aad.org/public/publications/pam...s/_img/2311.jpg Susan

Oh how dd7 has suffered with molluscum! She caught it last summer and it really raged on her legs and bottom. She could have had V. strep during that time. It was a hard time for us all. She is still suffering from the memory of what it did to her legs. It cleared up within a month of going gluten free. I always wondered if she had DH (the celiac skin condition) but the dermatologist always insisted it was molluscum. He did say he was willing to do a biopsy but it was clearing up by then and we were going gluten free anyway so we decided not to put her through that. But I suspect she has Celiac so I'm still confused about it. DD 6 caught molluscum too but hers was much more mild and went away quickly (compared to her sister). She just got rid of it and her last strep infection was around May, maybe even in June before starting the longer doses of antibiotics. I think the antibiotics helped it along so maybe it was hanging in there due to the hidden strep. Interesting concept. Susan

Wow, great visit! You make me want to hop on a plane and go see him. Congrats and good luck! I too am interested in hearing what blood work he is drawing. Susan

Do you know what other immune boosters would be? I was looking at Monolaurin today. It says it's an anti-microbial agent to protect the immune system. Susan

Do you think this implies that they are still only looking for elevated antibodies? Or am I reading too much into a short article? "Until now, scientists have been unable to convincingly document the association between the appearance of antibodies directed against Group A beta-hemolytic streptoccoccus (GABHS) in peripheral blood and the onset of the behavioral and motor aspects of the disorder. As a result, treatment strategies were restricted to targeting symptoms rather than causes." Susan

Since both my girls have PANDAS and are on antibiotics I had not thought of this but in thinking of it, I think I'd be stressed if one was not "protected". I think having non PANDAS siblings on is a good idea, especially while strep is rampant in schools, etc. Curious to see what the doc's think too.

Thinking of you! Can't wait to hear how it goes.

Very interesting about the strep and pain. She did have her tonsils out when she was 5 I think. Her tonsils were huge and in really bad shape. She also had her adenoids removed as well since she had sleep apena and they were very enlarged as well. I'll take a look at the article. Maybe it will give me some ideas. I honestly can't remember what shape she was in regarding her pain before she had her tonsils out. I do know her behavior improved quite a lot but only for a while. I know when I had my strep when she was a baby, I had a huge amount of pain but I don't remember it being in my joints. So you think the pain was better because there was less strep or something to do specifically with the removal of the tonsils? I know... I'll go look at the article now! She did not complain of being hot tonight but she did feel cold still. I told her she seemed to be doing much better tonight and she said she just was not complaining about it. Susan

Thanks everyone... I decided to up her antibiotics to a full dose for a week and see if that helps. We have an appt with her Ped on the 24th but I'll call to move it up if she does not improve. I think her symptoms started up around Thursday of last week. She did seem a little better today and had a good day at camp but it's so hard to tell if it's just a better day or if things are actually turning around, you know? Her birthday party is on Saturday. I hope she's feeling good for it. She's got a pad on her bed tonight and she's stressed about whether she'll have an accident or not. Susan

Me again DD wet the bed last night. It was like the old days where she wets and does not wake up for a while. We went through a bedwetting program over a year ago that finally trained her to stop wetting at night. I assume now, in hindsight, that her bed wetting was related to PANDAS. I can call the bedwetting program for 2 years if anything starts up again. I guess I should do that but I'm wondering if this is a one time thing or if it will continue. Does anyone have any stories regarding bedwetting that stopped and started up again in relation to PANDAS? I'm assuming this must be related to how crummy she has been doing lately. Susan

Tonight, she had the hotness again in her leg and some other places but also, her skin was chilly to the touch. She had a headache and felt bad all over, very sensitive and emotional and went to bed early. That's getting to be a normal routine. I'm thinking candida, food intolerances, Celiac, PANDAS symptoms, immune issues of unknown origin. I have a doctor's appt on the 24th with her peditrician but I don't imagine he will have any ideas of what is going on. Maybe he will surprise me. She's seeing a ped neurologist but that's not until December. My plans are to get her to the local immunologist who was recommended to me by mom_md and maybe to see Dr. Latimer. I really have no idea what is the right thing anymore. I know other children here are suffering more than we are at this time but I'm still worried sick since I don't know what is happening and I'm fearful for the future with no IVIG or PEX as a possibility at this time in the event of more PANDAS episodes. OK, thanks for listening. Much appreciated! Susan

I was wondering that too. When asked she says it's in her shoulder (at the joint) her back (all over) and her foot (all over). Do you think it could be the joints but radiating out? She was recently tested for rheumatotid arthritis which came back negative since she does get joint pain. This seems to be less pain though but it is really bothersome to her. We started discussing the concept of a scale from 1 - 10 this morning. After MUCH discussion, she decided it was around a 4 on the discomfort level (1 being not hot and 10 being "let's drive to the ER right now"). Susan

This morning it's her shoulder, hot from the inside, bad this morning but is calming down already. Edit... I am wondering if it's a reaction to the zith. She's been on it for about 2 months now, I think.