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  #1  
Old 03-03-2006, 10:52 AM
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twintotwin twintotwin is offline
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I have 4 books that all seem outdated.
Any recommendations?

Thanks in advance.
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002).
Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!

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Old 03-03-2006, 11:28 AM
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CP hasn't really changed over the years...
Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller, Steven J. Bachrach is pretty good. But if you are interested in learning about newer treatment options, the internet is probably your best resource. Feel free to PM me Kerry. I've read a lot about CP and maintain a CP resource site:
CP Resource Center
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Cindy - Mom to Aaron (age 20), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 20), spastic quad CP, moderate MR, seizure disorder; Anthony (age 21), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 7) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.



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Old 03-03-2006, 03:32 PM
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Cindy- Thank you. I just bookmarked the site. I know we talked about this before, I am slowly starting out on the research.

I don't even know which type of CP my boys have. I just know they have different conditions. The only thing different about them. Sheesh!

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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002).
Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!

The Birthday Boys by TwinTransfusion, on Flickr
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Old 03-03-2006, 05:47 PM
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Kerry, did they give them a name like spastic cp, hypotonic cp, mixed tone cp, etc?

Drew had a diagnosis of CP for several years, 5 actually, until he was correctly diagnosed with Severe Primary Generalized Dystonia. Some of my other babes have CP though, of all types.

Karin
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Old 03-03-2006, 09:07 PM
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It's pretty embarrassing because I don't even know. I think they said Milo has low tone and Elijah has high tone with some low tone...?

Now that the boys respiratory situation is improving, I'm going to focus on their CP. And feeding .
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002).
Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!

The Birthday Boys by TwinTransfusion, on Flickr
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Old 03-03-2006, 09:19 PM
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Kerry, no, it shouldn't be embarrassing at all. Their respiratory status should have been the main focus because, after all, nothing else matters if they aren't breathing!!!

Most, but not all, kids with mixed tone may have high tone in the arms and legs and have low tone in the trunk and neck. Cookie's CP is like that, very mixed.
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Old 03-04-2006, 08:38 AM
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Quote:
Originally Posted by [b
Quote[/b] ]nothing else matters if they aren't breathing!!!
Well, there's an understatement and very good point. I agree, Dinker. Not a big deal Kerry, after all the treatment is basically the same and all of your studying won't really change things.
However if/when orthopedic issues come up (elective surgery), then you really have to do your homework. I've saved both my boys with CP unnecessary surgeries.

CP is like a big umbrella term with lots of different types. No two people with CP are exactly the same.
First is the type of muscle problem:
Spastic (rigid, high muscle tone)
Athetoid (no muscle control)
Hypotonic (floppy, low muscle tone)
Ataxic (balance and coordination problems)
Mixed

Then the part of the body effected:
Hemiplegia (one arm and one leg on the same side of the body)
Diplegia (predominantly both legs, but arms also involved)
Quadriplegia (all four extremities)

The most common type of CP among preemies is spastic diplegia. This is because of the area of the brain that is most fragile when babies are born early.

But even with spastic CP, under the high tone are floppy muscles. So, when you break up the high muscle tone the kids can be like rag dolls. Eric actually NEEDS his spasticity in order to bear any weight.
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Cindy - Mom to Aaron (age 20), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 20), spastic quad CP, moderate MR, seizure disorder; Anthony (age 21), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 7) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.



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Old 03-04-2006, 09:27 AM
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Kerry, I don't know if you would be interested in this at all, but my son Michael has cerebral palsy and 2 therapies that have been extremely helpful have been Craniosacral Therapy (CST) and Hyperbaric Oxygen Therapy (HBOT).

Michael has very high tone. We have been doing the Craniosacral Therapy for 3 years now and he has had absolutely amazing results! He went from not being able to lift his arms above his head, keeping his fists clenched, us having to move his arms and legs very slowly for exercise to swinging his arms over his head and everywhere else, loving to be flipped over fast, and he keeps his hands open so nicely now.

Of course some of his hands being so relaxed now has to do with the HBOT. We have had 1 course of treatments of that now, and are working on raising the money to get our own.

You can get more information on the CST at www.upledger.com. For the HBOT there is a lot of information at http://www.netnet.net/mums/

Niether one of these is covered by insurance, of course. Although we lucked out, and Michael's physical therapist does CST. That is all we do with her now because it has been so effective.

Anyway, I don't know if this is helpful to you or not, but I know I would have appreciated it if someone had told me earlier that these were effective treatments.

Feel free to email me if you need more information.

Blessings,
Rachel
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Mom to Michael, 6 yrs., spastic CP, trach for paradoxical vocal chords, g-tube. Also to 5 girls ages 11, 9, 8, 4 and 2; and a new little boy, age 9 months.

http://www.michaelsjourney.org
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