thereishope

It's on at 10 pm Eastern Time.So I get to watch it before you

It says it has to be max 64 pixels by 64 pixels along with taking a max of memory, but when I tried to change mine yesterday, I ran into problems. I even made it as small as 24 pixels just to see if it would take it and it didn't.

Yes, please help them! I spoke to Sophia's Dad again on Tuesday (before they hit #2). They are excited about the possibility of winning but nervous at seeing how some competition is really creeping up in the rankings fast. Link to voting info http://www.latitudes.org/forums/index.php?showtopic=8891&st=0&p=73935&fromsearch=1entry73935

It's official! We are GRANT RECIPIENTS! Congratulations, everyone! We accomplished this together!

That would be a whole different book... maybe "Confessions of an Online support Forum Addict" Actually, a good idea at some point is "How an Online Support Forum Changed the Face of Psychiatry".

Just wanted to update that the IOCDF said they do not offer dvd's or transcripts of their conferences but may eventually offer handout of the slide presentations,,,,in case you were wondering.

This question comes up every so often on here. I can't seem to find a couple threads I had in mind, but I will keep looking. As for kids doing well now, I think some of them go on to have normal lives and slowly leave the forum and their success story becomes (in a sense) lost. Here are a couple I was able to track down... http://www.latitudes.org/forums/index.php?showtopic=5315&st=0&p=38181&hl=inspiration&fromsearch=1entry38181 http://www.latitudes.org/forums/index.php?showtopic=7980&st=0&p=65080&hl=pandas_chicago&fromsearch=1entry65080 I am cautious, but happy to say that my son is currently doing well. I don't say cured and would proabbly never say that, but he is in remission. His last strep infection was in March 2009 and he has been fully recovered since Sept 2009. PANDAS surfaced on his 5th birthday. He will be turning 7 in Sept. He had 3 strep triggered exacerbations and smaller ones due to viruses and allergies. Luckily, for us, it seems the further we get from that last strep infection, his reaction to non-strep triggers have diminished. I do believe if he should contract strep again, the cycle will start all over. He got better with antibiotics and a lot of patience. He also had residual OCD to overcome with his last episode. As for the original Swedo kids, I thought there was going to be follow up but haven't heard anything about it recently.

Funny you mention marshmallows. Everyone looks at me like I'm crazy when I mention the blue dye. My husband explained it makes the white, whiter. So, when I make Rice Krisie Treats, we but Walmart generic marshmallows....no dye in it. I am disgusted how aspartame is in so many children's vitamins. Next time you go to the store, look at them. The majority has it.

I would suggest having another adult go with you. Having a second set of ears is helpful and they will be there to help defend your situation, if needed. Also, call the neurologist office and ask if they can email you the paperwork ahead of time. Neurologist questionnaires can be long and your son may get antsy when you're filling them out. I'd probably print out the PANDAS fact sheet and FAQ and rebrief myself on it. That way if you need to make a rebuttal, the info is more fresh in your mind.

Do you give her Omega 3's? If not, I suggest doing that. It reduces inflammation and eases OCD symptoms. Would you consider having her see a therapist that would maybe do something like art therapy? If she has an outlet ofr the pent up anxiety and emotions, it may help. They may also be able to teach you and her calming techniques for when she feels overwhelmed.

If likes yogurt drinks, try Kefir. If you need to, wash out some used yogurt drink containers and fill them with the Kefir before serving. Sometimes the eye will trick the taste buds. Doesn't hurt to try!

From the Pepsi Refresh website, "Check back on July 22nd when we announce the Official Grant Recipients. " So winners should be officially announced at some point tomorrow!

It's odd how even now if the room is quiet enough, I can still start crying out of nowhere. I used to never be like that. Beautiful quotes. Thank you.

I am happy things are going well for you. I just can't say that enough!

Howie Mandel won't get back. I desperately tried that route for the pepsi refresh contest.

I'd have to think on this a bit, but a sample of ways could be organized by moments of despair, recovery, letters to our children, turning points,section written by PANDAS kids or drawings, etc. I think a reader may want to learn but also feel as though they are part of the journey so by have different sections being devoted to different stages of PANDAS and PITAND would be nice. There are publishing companies that deal with medical based personal stories, so don't rule out an actual book:)

In Europe, Dyed Foods Get Warning Label http://www.cspinet.org/new/201007201.html

Actually I think someone once suggested that on here before a long time ago, maybe EAMom? I think that's a great idea. Want to be in charge:)

I've read on here before that some kids do fine without taking a probiotic. Still, I'd be nervous about taking the chance that the yeast gets out of control. Does he drink yogurt drinks? Have you tried kefir? They do sell kids probitics in chewable tablet form that may not be as "strong" as some of the ones listed on here, but it's something.I've seen them even at Target.

I was thinking of how a company made an offer to sophia's cure. For every person who became a fan on this company's fan page, they donated $1 to Sophia's Cure. The thing is Sophia's Cure was approached. We'd have to approach and convince a company to do something like this. Then, like you said, there's local to national things similar to Relay for Life and the Great American Bake Sale but what can be our thing? My creative juices just aren't flowing right now:)

Can you scan it and post it as a picture?

Yes, I know/agree. It's one of those situations when I can look from the outside and say "It would be nice if ..." but I am sure all of these specialists are overwhelmed with their case loads. Vicki - unfortunatly, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors. Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval.

I'm sure they are keeping their cost at a minimum. It's just plays in my mind how even that minimum is impossible for some. Perhaps, when I find energy and time (don't know when that will be), I will brainstorm ways to have a fund for those who cannot afford things like the Cunningham test or consults with specialists....

JAG, I totally agree with everything you said. Personally, one of my worries is those children whose parents do not have good financial resources. The idea of a child having to suffer because their parents honestly cannot afford the tests, the travelling, the procedures, it really bothers me. It's not always as "easy" as swallowing your pride and asking family members for a loan, taking out another mortagage, or making compromises. I suppose if you don't have that current or past experience of financial struggle, it is hard to grasp.

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:) I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.