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7/1/2009 11:53:50 AM
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carlismom
Posts 1
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My 8 yr old daughter is in the prosses of being diagnosed w/ CP. It all started w/ toewalking at age 1. At 1st we thought she would grow out of this & the drs (in Spring Hill, Fl) said she would. Eventually I took her to a dr (in Tampa) who put all of her problems together & started refering her to specialists (orthpedic & neurology). So far all tests are coming back abnormal. She has had a MRI w/out contrast,& 2 EEGs (1-1 hr & a 3 day). Now we have moved again to Gainsville FL & she has new drs. I took her to her primary d.r at the start of this month & he has refered her to an orthopedic (for her toewalking & atrophy to her left arm & hand). But can't get her into the Neurologist until mid Aug. The orthopedic dr (at Shands) is treating my daughters case as a CP case & strongly feels that the diagnoses of CP is valid. She wants my daughter to start going to physical & occupational therepy ASAP. She also wants her to be seen by another dr in the office who specialises in botox injections. My daughters toe walking has been causing her to have leg problems (flexibility) & hip problems (exteme pain in area). I have researched this ''solution'' before when we were in Tampa,but decided serial casting might be a better treatment for my daughter (at that time). Since not all of my daughter's neurology test have been concluded we decided to postpone treatment at that time (2008). But now w/ all of her tests coming back as abnormal the new orthopedic dr. seems to think nothing is going to change except her flexibility & pain will get worse. I mentioned the serial casting in lew of the botox injections, but really don't know where to go from here. Does anyone know anything about these procederes? Sucess rates,how long these procedures last how painful the are,etc..... ANYTHING. I have gone online to find out info on these treatments but would like to hear from someone who has gone though this w/ thier child 1st hand. Her next drs apt. in 7/21 so hopefully I will be able to decide what is best for my daughter by then. Thanks for taking the time to read this & please reply so I can start wieghing out options for my daughters care.
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7/1/2009 2:04:26 PM
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yrodriguez
Posts 16
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Hello Carlismom,
Welcome. I hope we can help you connect with someone who can give you some personal perpective. Meanwhile, I have found the following links that may provide you with additional information.
http://www.cerebralpalsyforum.net/ You can also post a question there.
http://www.ucp.org/ucp_general.cfm/1/7 You can find your local UCP organization.
Your daughter may also be eligible to receive therapies at school including an IEP(individual education plan) which is covered under a law know as The Individuals with Disabilities Education Act or (IDEA).
http://www.cflparents.org/ This is a parent center that can also provide support and information.
We have several parents that have children with Cerebral Palsy that have posted their comments here. I will try and make some connections for you.
Stay strong.
yrodriguez
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Yamilet R
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7/1/2009 4:37:37 PM
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Isa
Posts 9
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Carlismom:
This site is too new to be able to generate the response you need. I am the executive director of Parent to Parent of Miami and my daughter Daniela has CP. I don't know enough about this specific issue to be able to help. However, if you visit the Exceptional Parent website at www.eparent.com you may be able to get your answer. Once you log on - look at the left side bar and click on SEARCH & RESPOND. You should be able to post your question and they will provide you with guidance. It will take a day or two. I'm sure that they can connect you with a parent that can share personal insight with these procedures.
I will also make a few calls to see if there is anyone here in Miami that would be able to provide insight. Keep up your spirits - this is what this forum is all about!
Isabel
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7/1/2009 9:21:19 PM
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miamirn
Posts 40
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Hi Carlisman,
I found some blogs about CP and botox on About.com. I know you need something a little more intimate, but I thought this might help a little.
Here's the link:
http://specialchildren.about.com/b/2006/02/09/botox-helps-kids-with-cp-no-not-with-wrinkles.htm
Let us know what you find out. I would be interested to know about it.
Elona/miamirn
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7/6/2009 3:50:16 PM
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lbustos
Posts 6
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hi Carlisman,
I am the training coordinator for P2P and it so happens that my mother's neurologist specializes in Botox treatments for CP patients. I have sent him an email and am waiting for his response. I will try to put you inconection with him if you'd like and think that it will help. He should be able to answer all of your questions, this way you will have more than one opinion to go on prior to deciding treatment. Please let me know if your intrested.
Lauren
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8/12/2010 3:19:35 PM
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jonnyguerrero
Posts 1
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yrodriguez wrote:
Hello Carlismom, Welcome. I hope we can help you connect with someone who can give you some personal perpective. Meanwhile, I have found the following links that may provide you with additional information. http://www.cerebralpalsyforum.net/ You can also post a question there. http://www.ucp.org/ucp_general.cfm/1/7 You can find your local UCP organization. Your daughter may also be eligible to receive therapies at school including an IEP(individual education plan) which is covered under a law know as The Individuals with Disabilities Education Act or (IDEA). http://www.cflparents.org/ This is a parent center that can also provide support and information. We have several parents that have children with Cerebral Palsy that have posted their comments here. I will try and make some connections for you. Stay strong. yrodriguez
Hello Carlismom
I just registered today and read your concerns I have a 5yr old son with CP I started him with botox on his legs and right arm but I felt that because of his muscle tone the botox was not helping or giving me the results I was hoping for but continue to give it on the right arm at 4yrs the orthopedics dr. decided to do surgery lengthening on both legs his hips are not dislocated but I am aware of any sudden changes in other words botox can help but it depends on her muscle tone but if she is going through pain you should consider any type of surgery that can help her relief her pain the procedure of the surgery will be guided by your dr hope this helps and the best to you and your daughter
jonnyguerrrero
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10/15/2011 2:05:54 PM
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Guest
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