EmersonAilidh
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Posts posted by EmersonAilidh
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Peglem - I was doing well for a few months but I just recently took a nosedive. The only thing that I can think of is that it has something to do with the weather, because Texas summer has kicked in, which means 103 degrees every day. However, my twitches have actually gotten better. I rarely have vocal tics anymore, & when I do it's just a "bark" & nothing too terribly disruptive, & most of my motor tics have moved into my hands, neck, & legs. As far as other symptoms go, not so much. I've been experiencing Narcoleptic symptoms for over a year now, which is scary to say the least. That's good about your insurance though!
KimBallot - My Mom is completely & totally supportive. She doesn't understand it as well as she could though & often yells at me for being unsympathetic, moody, or irritable. I've tried to explain to her that my anger isn't voluntary but I don't think she believes me. It was a psychiatrist who told me that I had P.A.N.D.A.S. about three or four years ago, but I've never been officially diagnosed by a neurologist just because I can't find one that would. This forum has provided me with a list of Texas doctors though! So I plan on getting on that soon.
I plan on seeing a new neurologist soon. My main reason for staying with the one I see now is just because I have been seeing him for almost six years now & he's been around for it all. However, I'm finally realizing that that doesn't do me much good when he doesn't believe in my condition. But I am hopeful that I can get a diagnosis & some real help with these new doctors!
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I know that you could just post links to the other pages in the descriptions of your page, but besides that I am not sure. I'm actually going to go link to the other pages right now. Thank you for suggesting that!
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Thank you so much! That was so helpful. The neurologist that I have been seeing for about five years now will NOT be swayed on the existence of P.A.N.D.A.S. so I don't think he would order that. :/
I haven't had any actual treatment, just lots & lots of pill regimens. Medication free for about six months though! So very happy about that.
I'm sorry to hear about your daughter! I'm fifteen too. I've had some pretty bad compulsions, one minor twitch, & a strep problem as far back as I can remember so we speculate that I got it really young too. I've only ever had two negative strep tests. I also NEVER have ANY symptoms. My throat & neck don't hurt, my glands don't visibly swell, I get no rash, I only know to go get checked when my friends start getting it. My pediatrician said she had never seen so much GABHs.
& thank you! That was my main reason for joining. A woman from the P.A.N.D.A.S. network showed me this forum & I wasn't seeing many posts from the actual kids! I figured it was because most of them were younger than patients like me & your daughter so I thought I might be able to contribute something.
I understand if this is a little too invasive of a question, but how much does the IVIG cost in all?? Once again, thank you so much!
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I've seen the Pepsi page, too. & that's what I was trying to do. Just make one broad, general page for it. The PANDAS foundation one seems fairly active but one seems more geared towards letting people know about it than actual discussions about it & one has no members.
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I found three doing that. I hadn't seen those though! I still figure it's a good idea to add the dots just to separate it from all the groups about the bears, haha. Plus, if you just search "pandas" without the dots you're automatically directed to the "Purple Pandas ARE HOT" page. Well, I am at least.
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Thank you for the advice but that's not my last name.
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I was pretty amazed when I realized there were no P.A.N.D.A.S. groups on FaceBook so I made one.
http://www.facebook.com/#!/group.php?g...5625&ref=ts
I figured that it would be a good way to reach out & find a lot of people since FaceBook is so massive. It could also help lead people to the valuable information on this forum. Please join & spread the word. <3
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This is my first post on the forum. My name is Emerson Ailidh & I first started experiencing P.A.N.D.A.S. about five years ago. I am fifteen now, about to be a sophomore in high school in Texas. I apologize up front for my ignorance to a lot of what is talked about on the forum, this is my first time ever reaching out & being able to talk to anyone with experience with my condition.
Mainly, I wanted to ask about this new IVIG treatment. I first read about it on Dr. Kovacevic's website a few months ago, but I still have some questions. How available is it? Are there any risks involved? Do you have to receive it multiple times for it to be effective? & also, I read that it basically just doesn't work post-puberty. Is this true?
I plan on posting more & trying my best to understand everything better. I didn't realize that there was even a place like this to discuss experiences & progress until last week, in all honesty. I've been trying to figure out what exactly to say since then. More than anything, I want to contribute as much as I can because I haven't come across many cases that have lasted as long as mine. I'm just hoping to get & provide answers. Thank you. <3
Mystery Diagnosis...DISCUSS
in PANS / PANDAS (Lyme included)
Posted
I thought that it was good overall but also that it focused on JUST compulsions & tics too much. I understand that adequately & fully describing P.A.N.D.A.S. would take much longer than a half hour show though, haha.