Kids with CP and surgeries..
MOST HELPFUL POSTS
Jamie - posted on 10/30/2009
hi my son is a right side hemi from a stroke, he has had a tendon release on oct 5th he did wonderful he is 5 years old and has cp. I have pics before and after just add me and you can see them, Shriners hospital is a wonderful hospital for cp type surgeries, if there is anything else you wanted to know that maybe I can anwser just let me know.
God bless your family......Jamie
This conversation has been closed to further comments
Dorothea - posted on 03/15/2011
Well, where to start? Mike was born at 28 weeks.
09-04-2004 born. 3 lbs
09-06-04 Bilateral Grade 3 IVH
09-13-04 PDA ligation
10-05-04 Subgaleal Shunt
11-04-04 VP Shunt
11-13-2004 Discharged from Nationwide Childrens Hospital in Columbus Ohio
12-?-05 bi-lateral hernia repair
01-31-05 VP Shunt Revision
Every surgery up to the SDR was a life saving procedure. The SDR was our choice. We could either do that or a baclofin pump. We went with the SDR and saw results immediately. The first few days after the surgery where the hardest I've ever had, even harder than those days in the NICU. Mike was a different child, he was angry, and mean, and in so much pain. But by the 4th day he started to turn a corner and by day 5 he was off all pain medication and was up and about, in a wheel chair. I'm really glad we did it. Today, Mike is back up to using a reverse walker, just like before the SDR, and he's standing straighter, he's able to sit on the potty now, and he's off all medications. We did our SDR in Columbus Ohio.
Cathy - posted on 11/30/2010
Hi Amber, My 10 year old daughter, Madison, is one of a set of triplets that were born at 26 weeks + 5 days. She had a Grade IV bleed at 2 days old and they told me she would not survive and if she did she would be in a vegative state - that's how bad the bleed was. Well, she surprised everyone and not only survived, but is thriving. She does have hemipalagia CP right side affected. She has had surgery on both legs and her right hip that enabled her to walk w/o her braces and/or walker. She is now walking indepentenly and only uses a wheelchair for long distances. We are getting ready to schedule her for her 2nd surgery on the right leg. She can't bend her knee, thus causing her balance to be off - so they will go back in and lengthen the tendon (not sure how they do that) so that she will have a better chance of bending that knee and falling less. We go to Alfred Dupont Hospital for Children in Wilmington, DE and see Dr. Suken Shah. His is WONDERFUL and I would recommend him to everyone. She has most of her doctor's down there so when we go, we just make all of the appts. in two days and spend the night at the Ronald McDonald House across from the hospital. Would be happy to talk to you more if you'd like. Hope this has helped. Blessings, Cathy
Michele - posted on 11/27/2010
My son is 15yrs old and has had numerous surgeries over the years w/ another coming up in a week.
He has had
~3 eye surgeries because of a lazy eye had to wear glasses but has since been told he no longer needs his glasses
~tendon lengthening in his left ankel had to wear an AFO for yrs and yrs this past summer we were told he no longer needs the AFO
~gland under the tongue moved to the back of the throat to help w/ drooling (helped a lot he no longer has to wear bibs everywhere we go)
~and now we are going in for sinus surgery on the 6th of December ... the poor child is almost completely blocked in the sinus area, has blockage in the cheek sinuses and also a cyst that has to be removed while in there
~at the same time as the sinus surgery they will be removing the adnoids (we were also told the sinus surgery and adnoids should also help w/ the drooling)
~was in the hospital for 4days two weeks ago because of pain that was doubling him over but nothing was ever found .... being sent to a GI Specialist ... and for those of you that are aware usually a Special Needs Child has a very high pain tolerance so when he cried I knew he was in a lot of pain.
All in all for everything he has been through he is a real trooper and keeps on trucking along. Please keep him in your thoughts and prayers for this upcoming surgery!
Casandra - posted on 10/05/2010
Hi Everyone! My daughter will be turning 12 next month...I can't even remember how many surgeries she's had. She's had her eyes done (cross eyed), both of her hips broken, both thighs broken, muscles cut on both sides twice, 3 catheter ablations to her heart, hardware removal twice, g-tube placement, baclofen pump placement and a spinal fusion with rod and screws. The spinal fusion was the worst of them all. She bled out on the table and was put in the ICU. She then developed aspirated pneumonia from too much fluid being pushed through her. Now we are looking at a possible surgery for her foot, muscle release. It's just too much for ANY kid to have to go through. :(
Jenny - posted on 09/29/2010
My son, who is 5 years old, is going to have a bilateral derotational femoral osteotomy. He has Spastic diplegia. This surgery looks very painful. It is hard for me to allow the doctors to do this. Has anyone elses child had this surgery? If so, what was it like for them. Did it improve their gait? Is it worth doing?
Trish (Bullard) - posted on 02/14/2010
My daughter is 17...soon to be 18. As an infant she had her first feeding tube inserted - this was removed when she was 2. She had tubes in ears, which she did great with. She's had bilateral heel cord lengthening, bilateral dislocated hips, another feeding tube (MicKey) inserted. She had a perforated duodenal ulcer where 1/3 of her colon was removed - we almost lost her this time, but she came through. She has been diagnosed with ulcerative colitis, left sided paralyzed diaphram. She has scoliosis, but we are hoping because she is nearing the end of her growth plate we will avoid this surgery.
The past 7 months she's been in the hospital 4 times and on steroids 6 of the 7 months.
Did I mention she has an amazing smile? :)
Amber - posted on 02/08/2010
For our surgeries they were mentioned by our specialists, we use the cerebral palsy clinic at childrens hospital of philadelphia..the whole team we have there are really great.
Ashley's cp we don't know the exact cause, could have been the traumatic birth, prematurity, her numerous periods of stopping breathing no one can say specifically.
Fay - posted on 02/08/2010
Wow I presume the majority of people on this page are from the US, you tend to get a lot more information on the actual problems and wording of your childrens illnesses, I have a son aged 6, who had a brain bleed at birth giving him hydrocephalus which at 12 weeks he had a shunt fitted, and subsequently was diagnosed with cp, he is unable to walk, and is behind in years aged about 2. He is an absolute joy and would love to share any help i can, and just meet people with the same problems. Faith
Brittany - posted on 02/08/2010
I also have a 3 year old with CP...we have not done any surgerys yet and get his kid walk this week. They are checking his tendons and hamstrings in his legs which are VERY bound... I plan on asking about surgery....Are they pretty successful?? No other complications?
Heather - posted on 01/18/2010
Who's idea was the surgery for your child? yours, dr, or PT? My daughter started doing the botox in June 2009 and going for her 3rd round next week Jan 2010. To me that seems like a lot in such a short time. What are the pros and cons of getting the procedure done? she is 4 with very high tone in legs. thanks
Julie - posted on 11/06/2009
Well my daughter is 17 yrs old with CP from lack of oxygen at birth and she has aductor release surgery, a gastrostomy, pyloroplasty, kidney reflux repair, and the little things like tonsils and adnoids but through them all she has done beautifully.
Michelle - posted on 11/06/2009
Hmm lets see. My son Christopher is 8 going on 9. He's had the following:
Bilateral Hamstring Release (twice - once when he was 2 and once last year Oct)
During his last Bilateral hamstring release he also had his hip aductors released. This was his most painful surgery but he's a trooper. Legs are doing better and he's now attending UCP in Westchester.
Undescended testacle surgery - twice, once on each side
Strabismus surgery - eyes periodically stray but not much. He doesn't require another surgery and he had it when he was around 2
Kathy - posted on 11/06/2009
My daughter has CP from a stroke. She had bilateral tendon transfers, and heel cord lengthenings. One side has remained perfect while the other foot has returned to the turned position. The surgery probably did help though, she had a second stroke and now the foot is turned. So, not sure why it stayed on one and not the other.......
Amber - posted on 10/30/2009
Ashley has had bilateral derotational femoral osteotomies, and tendon lengthening on her thighs. In Jan. she will be having the metal plates and screws removed. And after that the dr. may be casting her feet and lower legs weekly, then botox.
I want to look further into getting SDR for her though in St. Louis.
I didn't really have any specific reasoning, I was just curious on the surgeries everyone has had and the outcomes of them.
Join Circle of Moms
Sign up for Circle of Moms and be a part of this community! Membership is just one click away.Join Circle of Moms