Did you know?
- Cerebral palsy is not a disease, nor should it be considered or referred to as such. It is a group of chronic conditions affecting body movement and muscle coordination caused by damage to one or more specific areas of the brain.
- CP is not communicable and does not worsen over time. However, secondary conditions due to CP can and often are progressive.
- 1 in 278 children have cerebral palsy. This number is configured from only three states: Georgia, Alabama, and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance study?
- 75% of people with cerebral palsy have secondary diagnosis such as epilepsy, mental retardation, autism, hearing and vision loss.
- People with cerebral palsy are at higher risk for developing scoliosis, joint contractures, bone deformities, fractures, muscular atrophy and chronic pain.
- The average lifetime cost for just one person with cerebral palsy is estimated to be over $1,500,000 above and beyond the cost of living for an average citizen.
- The NIH invests over $28 billion annually in medical research. Cerebral palsy received $16 million in 2007. That equates to less than 0.05% of the annual NIH budget.
- The Centers for Disease Control and Prevention (CDC) reports the prevalence of cerebral palsy in children is higher than childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome, cystic fibrosis, and similar to the prevalence of autistic disorder in 8 year old children. Yet, no comparable national surveillance study of cerebral palsy exists.
- There is currently no cure for cerebral palsy. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?
Sources:
http://www.cdc.gov/Features/CerebralPalsy/
http://www.reachingforthestars.org/RFTSFactsheet.pdf
http://www.nih.gov/news/fundingresearchareas.htm
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9 superheroes sound off:
Why do you stay with the Bard? There are buttons that are easy to change - at home - and are not painful to pull out!
The Mic-Key is the most common - but we wanted something with a lower profile (Eli had a Bard for 2 years) so we use this one now:
http://www.appliedmedical.net/amtminionebut.htm
When Eli finally had his Bard pulled out it was such a horrible experience for us! My husband almost passed out, and I almost puked!
I could never go through that again.
We love the AMT Mini-One Balloon Button.
Let me know if you have any questions.
Amy
I was wondering the same thing as your other commenter. Emily has a Mic-Key Button. My husband changes it for her at home. She has had it done so many times that she isn't even phased by it anymore (can't say the same for me, but I am a big baby!). We were never given any options for which kind of button to get, but this one has worked pretty well for us.
I'm not familiar with this but I'm so sorry it makes him so miserable.
Hey Keri - sorry I've been a blog slacker for awhile... and obviously I have no input on feeding tubes, but I feel for your frustration.
poor kid...he's so stinking cute!!!
poor kid...he's so stinking cute!!!
Anna just had her button placed on Tuesday. It is a Microvasive made by Boston Scientific. It is even more low profile than the Mic-Key. All of the nurses that took care of Anna in the hospital said this one is the best. You might check it out. So sorry you are having troubles and I wish you the best!
Aww - so sorry for his discomfort... it's hard on a momma's heart to see that.
Praying for positive changes and a healthy boy who finds it easy to eat and drink.
Much love
I am not sure what kind of feeding tube my brother had, but I do know that he always had tears in his eyes when the nurses would work with it,
I hope Logan doesnt have to use it for long, his sounds so painful!!
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