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Ava has CP


Forum: Children with Special Needs

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  #1  
May 19th, 2009, 12:36 PM
Ditzzy's Avatar Stupid Lamb;)
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Ava was diagnosed today with hypotonia (a condition that causes muscle weakness) and CP. The neurologist was so great at explaining things and spent over 90 minutes with us. She said CP isn't a diagnosis itself, but an umbrella term. No two CP cases are alike and the symptoms are widespread. I'm not freaking out over this but it's still a shock.

She has to start PT through Childrens asap. She did say to stay in EI too since the extra therapy they provide is always a help, but they want CMC heading her PT. She will probably need braces to help her learn to stand.
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  #2  
May 19th, 2009, 01:17 PM
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It is nice to have an actual diagnosis of some sort. It can open up so many more doors. Are you going to go to PT @ Liberty?
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  #3  
May 19th, 2009, 01:21 PM
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Who knows! I called to get the eval scheduled and the scheduling computers for the OT/PT department are down until the week of the 25th. I'm hoping it will be closer to me than downtown, though. We were in Mason today for the neuro appt.
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  #4  
May 19th, 2009, 01:22 PM
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I know they have been talking in this direction for a bit now, but it's still heart shattering to hear it officially diagnosed. I'm sorry, Hope, that just stinks. I love little Ava so much and hate everything she has to face so much.
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  #5  
May 19th, 2009, 01:23 PM
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Do you guys do PT at liberty?
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  #6  
May 19th, 2009, 01:34 PM
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((HUGS)) I am sure it's somewhat of a relief to get a diagnosis but heartbreaking at the same time. We are here if you need us.


Luke has made such improvements just with the few PT/OT visits he has had. And I see him doing new things all the time now.
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  #7  
May 19th, 2009, 01:51 PM
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we do OT and Speech at Liberty. Our PT is at Drake. We love her, but thats pretty far for you.

I know that ot/pt is switching over to epic this week, thats why you cant schedule anything, but it will help in the long run, because now her PT will have access to all of her medical info and any other evals that are done. We love Liberty and if you can get into therapy there, thats what i recommend. I dont hate Mason, but I dont love them either. And you are on the 75 side anyway arent you, not 71?
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  #8  
May 19th, 2009, 03:31 PM
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(((HUGS))) How devastating. You're right-no 2 cases are alike, and who knows how Ava's case will turn out? I hope that her PT helps her. It's great that you're getting started so early. A lot of parents put it off because they're afraid of hearing "CP" in relation to their child. I have a lot of hope for Ava.

Milo isn't officially CP, but he is classified with CP kids because of severe hypotonia. They think that they may assess him again if he doesn't improve tremendously, but for now, they treat him as CP, anyway. I'm not equating the situation, but just saying, it's hard, it's scary. When they first told me that (not officially CP, but classified as such, and we'll look again), I don't think that I said too much. There's a lot of processing to do!

(((HUGS))) again. I'm so glad that you're getting in early, and that your doc was so good at explaining! Will this be someone you keep for her? Sounds like they took genuine interest and a lot of time. And hugs to Ava. (I can't get over your siggy pic of her in her baby Cons!)
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  #9  
May 19th, 2009, 04:46 PM
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Quote:
Originally Posted by iamkc View Post
....

Milo isn't officially CP, but he is classified with CP kids because of severe hypotonia. They think that they may assess him again if he doesn't improve tremendously, but for now, they treat him as CP, anyway. I'm not equating the situation, but just saying, it's hard, it's scary. When they first told me that (not officially CP, but classified as such, and we'll look again), I don't think that I said too much. There's a lot of processing to do!....
I'm actually handling it well. I knew something like this was coming. They've been hinting at this on/off for a few weeks. The good news is that it's not life threatening and can be helped with therapy. Ava's neurologist talked with me a lot today about hypotonia (which is another factor for her airway) and CP. Not much has changed. She'll get a lot more therapy and she'll be followed closely. I feel better in some ways because I have at least one answer.
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  #10  
May 19th, 2009, 05:23 PM
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amen to having that one answer. Sometimes not knowing is worse. Thats how we felt when we finally had at least a hint at a diagnosis. It helps to get all the therapy together too.
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  #11  
May 19th, 2009, 09:42 PM
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I'm really sorry that's the DX you received, but at least you know where it stands, and can get her in all the necessary services to ensure that it doesn't limit her in life and school. IEP Preschool will be a huge help as well, when the time rolls around.

Kyle has been in PT/OT/ST since coming home from the NICU - and while progress was slow for several years, things have really started to click the past two. Every day he amazes me with something new he's learned or figured out how to do.

Quote:
Originally Posted by iamkc View Post
(((HUGS))) How devastating. You're right-no 2 cases are alike, and who knows how Ava's case will turn out? I hope that her PT helps her. It's great that you're getting started so early. A lot of parents put it off because they're afraid of hearing "CP" in relation to their child. I have a lot of hope for Ava.

Milo isn't officially CP, but he is classified with CP kids because of severe hypotonia. They think that they may assess him again if he doesn't improve tremendously, but for now, they treat him as CP, anyway. I'm not equating the situation, but just saying, it's hard, it's scary. When they first told me that (not officially CP, but classified as such, and we'll look again), I don't think that I said too much. There's a lot of processing to do!

(((HUGS))) again. I'm so glad that you're getting in early, and that your doc was so good at explaining! Will this be someone you keep for her? Sounds like they took genuine interest and a lot of time. And hugs to Ava. (I can't get over your siggy pic of her in her baby Cons!)
This is how Kyle was classed for quite a while as well. He was eventually diagnosed with Ataxic CP (rare, low-tone version that makes up less than 5% of CP cases), and a couple other issues.
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Last edited by kittycat; May 19th, 2009 at 09:47 PM.
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