If breathing were only so simple right now...not sure if I want to scream or to just pass out. We have called the doc once last night to no avail and twice this morning. I just got an email back from him in response to the video I sent him. Mind you in the video, her head and going all the way back so her eyes are straight up at the ceiling, and then coming forward pretty harsh with her chin nearly touching her chest. This is repeated and abrupt and not something anyone wants to see their child do.
His response:
These are typical simple motor tics. They are very frequent in children. They should not be a cause for any worry.
I'm sorry, but when my child's head looks like it is going to fall off, there is nothing simple or typical about that! There were a couple times where her head went back so far and came forward so fast that she almost fell over...I never heard of tics being so violent.
Oh yeah, and still waiting for a call back, so we have called St. Louis to see if they can get us in there. I feel like we are stuck and no one is really letting us speak, and it wouldn't matter because it's as if they wouldn't listen anyway.
What are we supposed to do, where do we go from here? We thought about going to the ER, but from our neuro's response, we are suspecting they will pretty much just dismiss us. Why do we have to scramble and go through all of this crap..yes, it is total crap...in order to get someone to listen to us, and see Kylie?!
We are working on getting our doc to get us a referral to either St. Louis, Houston, or Cleveland....whoever can see her the soonest. It will either be an extended drive or booking some last minute flight. Why is that need-to-puke feeling just lingering so much right now? Oh yeah, and the wanting to yell at someone.
Breathing...kind of.
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About Me
- MJStump
- We decided to start this blog when we discovered we would be expecting our first baby. It seemed like a great way to keep track of how things were going until our little princess arrived, and all the memories we would create there after. To our surprise in April 2009, our blog quickly transformed to all the medical happenings with Kylie when she was diagnosed with Infantile Spasms (a rare, and catastrophic form of epilepsy in infants). We have continued to give updates on what a miracle Kylie has become and all the progress she has made. She means more than anything to us, and we love that we are parents to a beautiful and amazing little girl!
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4 comments:
I so share your frustration!!! grrrrr. I don't know about St Louis or Houston, but we are familiar with Cleveland Clinic. We took Hannah up there and they did a really fantastic job. We got some of the answers we were seeking; though not all. I would highly recommend calling and see how soon they could get you in. They have a Ronald McDonald House that is phenominal. We went for our initial appointment and then had to wait 4 days until an EMU bed opened up and stayed at RMH in the interrum. All in all, we were there for a little over 2 weeks. Hope that helps and I really hope you get someone to look at her. I agree with you, it seems like more than a motor tic and I would be livid at his response!!!
God bless....
Marcia K
Hannah and Blitzen
Oh yeah, much frustration going on here, but doing better now that there is a plan in motion.
Thanks for the info about the Cleveland Clinic, kind of nice to have an idea of things before we get there. Glad to hear they helped a lot with Hannah :) We hope they can give us answers too.
SOOO glad to hear that Cleveland Clinic got you an appointment!!!!!! Do you know who you are seeing? When is your appointment? One thing about the RMH....you can't call to get a room until the day before you need it....it is rather stressful, but that is how they do it. It is like a big family once you are there though. And they have HOT meals everyday.(we kept the room even once she got admitted so my husband could come back and sleep. He would bring food over to me at the hospital. They have a shuttle that goes right to the hospital) I think it is only $10 a day. We met some really great families there that we still keep in touch with. Can't wait to hear how it goes.....
Marcia K
4pawsforhannah.blogspot.com
Yes, Cleveland Clinic was ablet to get us in really quick, and St. Louis would not have been until like March, and we never got through with anyone in Houston.
We are meeting with Dr. Ghosh, and he specializes in movement disorder, so he would know best what Kylie is doing and what it is. We are very anxious to see him and see what they do.
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