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Old Sep 6th, 2013, 23:53 PM   1
essie0828
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Any Cerebral Palsy parents out there :)


Hello

My 18 month old daughter has just been diagnosed with diplegic cerebral palsy. She has Global Developmental Delay as well. We are just beginning our journey of specialists and therapies. I would like to hear experiences from other parents of kids with CP, no matter the type or age of the child. What I don't know about CP could fill an ocean but I will try to answer any questions you have.



 
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Old Sep 10th, 2013, 00:42 AM   2
essie0828
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Surely I can't be the only CP mama in here



 
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Old Sep 10th, 2013, 07:36 AM   3
helloeveryone
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Hi my daughter is 10 years old my daughter has cp we found out when she was 2 years old..xxx
So no you are not the only cp mummy out there..



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Old Sep 10th, 2013, 08:59 AM   4
essie0828
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Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness .

For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it.

DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day



 
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Old Sep 11th, 2013, 04:07 AM   5
helloeveryone
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Quote:
Originally Posted by essie0828 View Post
Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness .

For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it.

DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day
Hi my daughter Amy is a lovely girl she copes with things well,not sure what her cp is called maybe you can tell me ?? her cp mainly affects her legs but on one leg her left it is worse it does affect her hands but Not as bad as her legs...
She wears casts one big one on her left leg and a little one on her right side..
She has had a few operations including her Achilles' tendons cut and lengthened ..because they were getting tight..but I think she was about 7 before they did that..(it did work for a while but it wears off when they grow )
She has had lots of Botox in her ankles and hips..this relaxes the muscles so they can put their heels down a bit more..(but these injections only last for a few months and they can only do them ...(well for. Us every year or two.)
Amy has exercises to do every day...
When did you find out about your daughter having cp ??
She sounds a happy little girl..
.anyway better go now I have 5 other children so always loads for me to do with all Amy's appointments and kids clubs and 3 different school runs..washing clothes etc......
But I love it really.....speak soon..xxx



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Old Sep 11th, 2013, 05:18 AM   6
essie0828
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Oh my you are a busy busy mama. Wow, Amy sounds a lot like Hayley . Hayley was diagnosed on Aug 19, just a week before she turned 18 months old. According to the neurologist her arms were largely unaffected but she couldn't get a good exam on her arms at the time. When they have high tone (tightness) and only 2 limbs are involved, legs or arms it's considered ******* diplegia. If all limbs are affected it's ******* quadriplegia. There are also combinations or mixed CP. And tons of varying degrees of severity. My best guess is Amy may be ******* quadriplegic or have mixed CP. Do her arms move in slow, uncontrolled "writhing" movements? If so she may have atheoid cp involvement in her arms and ******* diplegia in her legs. It's all super confusing. I have a good link to a website that describes the different types of CP. I'll post it in a bit so you can try and match up Amy's symptoms to a type.

I just knew Hayley had CP when she was about 12-14 months old. I could just tell. Her feet always gave it away. Not to mention she had lots of risk factors for developing CP. I had a history of miscarriage, thyroid disease, and she had a very traumatic birth. She was born via c-section, breech, and her head was stuck inside for some time. She was born blue and not breathing. We thought she was a still birth but after the longest few min of my life we finally heard a tiny weak cry. She rallied after that and we got to take her home after 2 days.

Gosh helloeveryone, you have to be super woman! I can't fathom how you get everything done without a cape and super hero powers Six kiddos! But you are right. It's the best job in the world



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Old Sep 11th, 2013, 05:20 AM   7
essie0828
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Ughh B&B censors the word sp@stic. So all those little stars in my post are the word sp@stic



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Old Sep 11th, 2013, 10:52 AM   8
essie0828
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http://emedicine.medscape.com/articl...555-overview#1



 
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Old Sep 11th, 2013, 11:03 AM   9
essie0828
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http://www.moveforwardpt.com/symptom...b-8626c9e544c0



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Old Sep 11th, 2013, 11:04 AM   10
essie0828
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The last link is the better one



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