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TOC jingles needed for Makena; I think Flashy's too busy to ask...
Topic Started: Nov 2 2010, 06:35 AM (5,118 Views)
Barn Girl
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:jingles: :jingles: :jingles:

And I agree, be pushy and don't feel bad about it! I hope you can get hooked up with a good specialist, that seems to be the key in these type of situations. :hug:
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Little Diva
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:jingles: :jingles: :jingles: :jingles: :jingles:

Just adding in my jingles and yup, you are right, be pushy!
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Delia
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Please, Flashy, don't ever hesitate to come here to vent, OK? I echo what Witchy said -- I don't know the symptoms/complications of Kawasaki's disease, but when you said stiff joints I immediately thought of Lyme's. When I had it, my joints were so stiff I literally could barely move.

Definitely seek out other specialists if you feel it's necessary. And jingles that you start getting some answers that satisfy your concerns. :jingles: :jingles: :jingles:
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MayaTy02
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I'm sorry she's still not herself Flash...I hope you get some answers soon! :jingles: :hug: :hug:
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Neighland
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Oh no Flashie, please don't think twice about coming and talking about this!! Many many jingles from TN!! :jingles: :jingles: :jingles:
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FlashGordon
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Witchy
Nov 18 2010, 09:10 AM
Is it possible that there is something else going on too? A friend of mine has a daughter that has Mono and Lyme disease at the same time. They figure she had the Lyme for a long time, but the Mono reactivated it and she was insanely sick.
Good instincts Witchy. We just got home from the peds and they are sending her for some additional testing. They did some basic neuro tests in the office and she's having a bit of trouble with her coordination. I had noticed it at home, that she seemed a little clumsy, but chalked it up to the stiffness in her joints.

Anyway I'm glad I went in.. and honestly they were very receptive and seemed to agree she is not quite on track like they had hoped. She looked better at her check up last week than she does this week.

Thanks to all you guys for the jingles, and for letting me blab about this on here. I am so worried about her I just want to cry sometimes, though haven't let myself do it yet... maybe I should! I could use a drink and a good sobfest!

She goes back to the cardiologist Monday as well so we'll see what they have to say.
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MayaTy02
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sob away Flash, you need to give that stress a vent! Glad your doc is looking into it more. Hugs :)
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onwego
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:hug: :hug: :hug: :jingles: :jingles: :jingles: :jingles: :jingles:
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gunnar
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:hug: Oh Flash my heart aches for you. I wish I had you as my advocate. I know the medical world and all the dsiconnects. It is a full time job to keep up with it all! Hugs to your Kena girl and keep your nose to the grindstone! You know your daughter best! :clap:

We love to hear from you so never fear we are near! :hug:
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Neighland
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That is great news the doctor is doing more testing...... I'm with Gunnar keep at it, and we will all keep jingling!! :) Hugs!
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Lion1024
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I really hope she gets better soon. My neighbor's son came down the same disease just as suddenly a few years ago. I will ask her this weekend if she has any tips for you.
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Trialbyfire
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Sometimes a good cry helps to make you feel better -- it relieves stress, right?

A glass of wine won't hurt, either.

Funny that I also thought of Lyme, too, and recently talked to someone who said some research has shown that some patients with MS have been treated for Lyme, too, even though their Lyme results were negative and had huge improvements. I think that immune system issues can get really complicated and it would be easy to overlook something "simple" like Lyme if a patient already had a dx of MS or Kawasaki or something.

Glad you went to the dr. and that they were glad you brought her in.....keep after them, but remember to give yourself a break too.

:hug: :hug: :hug:
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jillincolorado
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FlashGordon
Nov 18 2010, 07:45 AM
The pediatrician did say my instincts are good and that they partially caught this so early because I was persistent about them addressing her "vague" symptoms. By the time the really bad ones came on we were already in the hospital. So you are right... Mommy Instinct is sometimes really spot on. I second guess myself occasionally but need to remember to trust my gut.....

...if I would have followed my instincts this time last year, I would have spent A LOT less time in the hospital and probably not spent any time at all in ICU.

You keep on pushing darling, NO ONE knows your child better than you do.

:luck: :luck: :luck: :luck: :luck: :luck: :luck: :luck: :luck: :luck:
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Boston
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Oh Flashy- many continued Jingles for Spicy Girl!! Please never feel like you can't come here to vent, that's why we're here. ;)

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JanM
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Flashy-I know that you being a strong advocate for your little girl is the best thing for her, and don't ever back down. And venting here is always welcome. I'm glad the docs seem to be listening to you, and trying to find out what's wrong and how to fix it as quickly as possible. If there isn't a big name pediatric specialist available for a second opinion locally they can always consult with Children's Hospital in DC, the Birmingham Alabama Children's is also world class, and City of Hope in LA is wonderful, with today's technology they can consult with specialists anywhere face-to-face instantly. I don't think you can have too many docs working on this and you never know who will have the one bit of knowledge that makes a difference.

I'm jingling like crazy that tomorrow you come here and say she's feeling better.
Edited by JanM, Nov 18 2010, 06:53 PM.
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