thereishope

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The word on PANDAS is spreading! The AARDA (American Autoimmune Related Disease Association) posted the you tube link on their facebook page..and they found it on their own! I didn't send it to them. I contacted them a few months ago to tell them about pandas network. There are over 300 people in that group. We're making progress...

The word on PANDAS is spreading! The AARDA (American Autoimmune Related Disease Association) posted the you tube link on their facebook page..and they found it on their own! I didn't send it to them. I contacted them a few months ago to tell them about pandas network. There are over 300 people in that group. We're making progress...

This was posted on the facebook "Saving Sammy" fan page... "Inside Edition will be airing a segment about our story on Tuesday or Wednesday (9/28-29)" Inside Edition seems like an odd place to air it, but I guess it's still getting the word out. Now I just have to figure out when that show is on.

In adults, Lupus is often given as a diagnosis when they don't know what else to give...

No, you're not the only one. It has put a stress on us too. It's a little better now that my son is doing well, but when we were in the middle of it, we would fight a lot.

My son went on amoxicillan for his strep. To be honest, you should proabbly at least see a plateau by now. The first time he had strep, I saw some improvement (not full recovery, but relief) by day 3 or 4. When that did not happen the second time, they gave him a 5 day scrpit for prednisone to help with the inflamation.That did help. I would request a steorid and see if that helps. Most will tell you to change antibiotic as well. But I will leave that discussion to them since I've only ever stayed on amoxicillan. I don't want to give info if I have not done it first hand. I think if I didn't see improvement within 11 days, I would change the antibiotic too. Keep in mind, you wouldn't see full recovery within the time of the initial script for antibiotics, but like I said, at least a plateau or the beginnings of recovery. If you doctor will not prescribe a steroid, you can give Ibruprofen. That may reduce some swelling too, and in turn, help with symptoms.

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Back to wanting to know geographical areas. My son was born and given vaccines in Cincinnati, OH (Anderson Township to be exact). Born Sept 26, 2003. Also, if you call your peds' office, they do keep track of the lot # of the vaccines given.

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That's exactly why I would support it getting changed, if it ever did. My son has reactions non strep too and that caused some problems w/ docs because of it. And it is a mouthful. People tune you out half way through the acronymn. It's a lot to weigh. Do you think if got changed, some docs would say....see PANDAS never existed just to save their egos?

Great minds think alike. I did that last night, but then had computer problems and couldn't post here. Here's the mailing address for story ideas too.... For story ideas... Please send story ideas to Noah Kotch, Senior Producer, 379E-1, 30 Rockefeller Plaza, New York, NY 10112. If your story idea is accepted, we will notify you. We do not have a general fax number. Even though my email not only was a thank you but a hint at a story idea too.

I would like for it to be changed, but I think if the name was changed right now it would cause more confusion with these doctors. If it was changed, it would have to go by both names for a long time and websites containing PANDAS info may become harder to find for people. Didn't PANDAS go by PITANDS for awhile? Not many people searching now for PANDAS would know about that acronym. To be honest, I can't remember off hand. I only read about it once a long time ago.

Where's Michele? She had bad experiences w/ the Cleveland Clinic too.

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My son was diagnosed with PANDAS for over maybe 7 months before I found this forum. I didn't know about it with any of my 3 episodes. There are other smaller forums out there and even though they know about this one, they prefer to stick with the smaller. I try to inform them about all the "big stuff" that I learn here. Like "Saving Sammy", pandas network, etc. I occassionally find a mom living with PANDAS on an OCD board. Is this out of 100? If you think about it that is actually kind of scary! How many kids out there are suffering from this disease whose parents haven't found this board yet?!

Funny! You know when I get "thoughts" in my head that I have to do something, I try to "talk back" to those thoughts. That's really hard! I admit I give into the thoughts (and I guess what are compulsions) a lot. I need to practice what I preach!

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Thanks! I'll make sure to share it w/ people throughout the day.

See, I tried naming OCD with my 5 year and it didn't work. He was adamant there's wasn't a problem, nothing was "telling" him to do things. Nor, did I get the chance to let him help make the heirarchy. CBT is hard when the kids won't ackowledge the problem. However, we still had sucess with getting rid of that OCD! So, to those facing the same problem I did, there can still be success....just wanted to put that out there.

Question...is it wrong to get copies from the library and on the inside back cover or last page write in pencil www.pandasnetwork.org? Does anyone know if pandas network refers people to this forum for support?