Comments on: Cerebral Palsy – Specialist Equipment

By: mom of cp-diplegic

mom of cp-diplegic — Tue, 10 Aug 2010 07:56:18 +0000

@santa:
Sorry to sort of change the topic, but picking-up from Santa (I hope you revisit this thread), can you please give more details on your son’s stem cell procedure and progress. Wast is from cord blood, adult stem cell, embronic, from another country. I want my son to undergo a similar procedure but I’m still studying the best option for him.

Thanks.

Chris.

By: John

John — Sat, 08 May 2010 01:45:47 +0000

I am very interested in the stem cell therapies, as I feel that these will offer me the best possible outcome for my little Jake. He has Quad CP, due to Bilat PVL at birth. I have been doing a little research about stem cells and feel that in the near future, SC will help my Jake. Could you elaborate further on the therapies that you had for your son. Thank you for your time.@John:

By: wendy

wendy — Wed, 31 Mar 2010 22:32:30 +0000

what is a sleep system. would it help a child with mild cp who suffers leg pain and cramp at night.

By: santa

santa — Wed, 08 Apr 2009 08:57:55 +0000

i never give up to believe my cp child will have fully recovered as normal child one day
since he’s 4.5 years old,i started to get miracle stemcell treatment for him
since then i see his condition gradually improved day by day
from condition neck floppy,unable to crawl and sit ,and unrespond,
now 5 years old, he has big changed, he crawls, sits, and walk with support
he ‘s even very smart and bright boy, understands numbers and some alphabeth
he loves reading books
besides stemcell, i have home made medicine for him

By: Steve

Steve — Mon, 16 Feb 2009 19:47:14 +0000

Hi Tammy and welcome to the blog.

Not too sure what a K frame is, but great to hear that Ben managed to take his first few steps!

The hip problem can be quite common, and they can dislocate as you mention. When kids aren’t weight bearing, this adds to the risk of dislocation. Can you elaborate on the surgery, do you know what they did? Your doctor/physio should be able advising you on what to do going forward, but I know of children that still use walkers having had dislocated hips.

Someone else may have more experience of this than me?

By: tammy

tammy — Mon, 16 Feb 2009 15:20:19 +0000

My son ben is 3 now and as quadrepligea CP, he walked with a K frame and did a few steps at 2 and half years but then we had the news he had 2 dislocated hips . Does anyone lnow if its possible to walk after having surgery or is this rare. I don’t know anyone with CP like Ben to discuss my concerns.

By: Steve

Steve — Mon, 26 Jan 2009 02:23:23 +0000

Welcome to the blog Kelly

Reflux is still a problem for Ella, but it’s managed a lot better now.

Good luck with the standing frame, it’s great for getting them to weight bare and help keep the hips in check.

As you can see, I’ve just embarked on a total redesign of the blog … so keep an eye for more posts.

Cheers.

By: KELLY

KELLY — Sun, 25 Jan 2009 03:32:00 +0000

Hi Steve,

Like you I have a 17mth little boy with CP. So nice to hear of other people in similar situation.
Finn has The Shuttle System fromMedifab for sitting which can sit on the ground attach to highchair legs and has buggy wheels. Its great! We are awaiting the sleep system to trial and our Lecky Standing Frame shoule be here this month.
I'm glad Ella has responded well to the reflux meds. Finn was just diagnosed with the same and we are awaiting his treatment plan.
I do believe special parents are chosen for special children.
Thanks Steve...keep blogging

KELLY

By: Ellen

Ellen — Sat, 13 Dec 2008 04:40:00 +0000

Hi, Steve. Another person who found your blog. My name is Ellen and my son Max, now 6, had a stroke at birth that resulted in CP. He is doing far better than the doom-and-gloom doctors said he would. I hope your Ella continues to come along as well, adding you to my blogroll. Come say hi to us over at http://www.lovethatmax.blogspot.com. We live in the United States, in the New York area.

By: Trish

Trish — Sat, 15 Nov 2008 20:31:00 +0000

Steve, please update your blog! I'm hooked! LOL!

Our twin boys were born at 33 weeks and only required 9 days in NICU. For whatever stupid reason they were never given Synagis and were hospitalized again 3 weeks later with RSV.

They spent 27 days in PICU, mostly on vents. Seth was changed forever. They are ten and a half months now, but it's really like having a 10 month old and a 10 week old.

Twin Malachi is nealry walking and Seth just rolled over on purpose for the first time this month.

Seth has just recently been diagnosed with CP (not sure which kind yet, MRI on friday!). He also has cortical visual impairment and microcephaly.

Reading bits of your blog has been inspiring...please keep it up!
~Trish