Comments on: Cerebral Palsy – Specialist Equipment http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/ An insight into the life of a parent raising a child with cerebral palsy Tue, 08 Dec 2009 06:06:44 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: santa http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-441 santa Wed, 08 Apr 2009 08:57:55 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-441 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 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-38 Steve Mon, 16 Feb 2009 19:47:14 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-38 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? 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-37 tammy Mon, 16 Feb 2009 15:20:19 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-37 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. 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-29 Steve Mon, 26 Jan 2009 02:23:23 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-29 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. 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-28 KELLY Sun, 25 Jan 2009 03:32:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-28 Hi Steve,<br/><br/>Like you I have a 17mth little boy with CP. So nice to hear of other people in similar situation. <br/>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.<br/>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.<br/>I do believe special parents are chosen for special children.<br/>Thanks Steve...keep blogging<br/><br/>KELLY 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-25 Ellen Sat, 13 Dec 2008 04:40:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-25 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 www.lovethatmax.blogspot.com. We live in the United States, in the New York area. 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 http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-24 Trish Sat, 15 Nov 2008 20:31:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-24 Steve, please update your blog! I'm hooked! LOL!<br/><br/>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.<br/><br/>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.<br/><br/>Twin Malachi is nealry walking and Seth just rolled over on purpose for the first time this month.<br/><br/>Seth has just recently been diagnosed with CP (not sure which kind yet, MRI on friday!). He also has cortical visual impairment and microcephaly.<br/><br/>Reading bits of your blog has been inspiring...please keep it up!<br/>~Trish 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

]]> By: Steve http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-23 Steve Fri, 29 Aug 2008 14:51:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-23 Anonymous.<br/><br/>You can find the Leckey Stander at the following website:<br/><br/>http://www.leckey.com/template.asp?pid=49&webArea=3<br/><br/>Cheers. S. Anonymous.

You can find the Leckey Stander at the following website:

http://www.leckey.com/template.asp?pid=49&webArea=3

Cheers. S.

]]> By: Steve http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-22 Steve Fri, 29 Aug 2008 14:48:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-22 Hi Derek.<br/><br/>I'm going to do a follow up post on the sleep systems. We've had two now, but they're not really appropriate for Ella at the moment.<br/><br/>Here's the site for the one we currently have. It's the Jenx Sleep System:<br/><br/>http://www.jenx.com/products/sleeping.html<br/><br/>Will answer your other post shortly.<br/><br/>Cheers. S. Hi Derek.

I’m going to do a follow up post on the sleep systems. We’ve had two now, but they’re not really appropriate for Ella at the moment.

Here’s the site for the one we currently have. It’s the Jenx Sleep System:

http://www.jenx.com/products/sleeping.html

Will answer your other post shortly.

Cheers. S.

]]> By: Derek http://www.cerebralpalsyblog.co.uk/2007/07/cerebral-palsy-specialist-equipment/comment-page-1/#comment-20 Derek Fri, 15 Aug 2008 21:18:00 +0000 http://www.cerebralpalsyblog.co.uk/blog/?p=10#comment-20 Steve<br/>Just to give you some background! I have a little girl Emma, 6 years that seems to baffle all the doctors. Emma was delivered after a difficult birth and left hospital with us thinking everything was ok. After about 6 mths the health vistor started to show concerns regarding here inability to sit up or move. She also did not cry alot nor feed well. We where eventually refered to the Child Development Centre where we where told that Emma showed all the syptoms of SMA. The tests where completed and came back negative. Since then Emma has been tested for everything available but we still have no diagnosis apart from low tone muscle and muscle weakness. So far she has had numerous muscle/blood samples taken, her tendons had to be spliced to allow her feet to come up straight and has to wear splints to support her ankles, also had a gastric tube fitted for approx 2½ years due to here inability to swallow/chew. Apart form all this she has been doing really well. She is a very smart child and she attends main stream school. We thought this was best.<br/>The latest thing has been due to her growing gravity is pulling her muscle tissue down, htis in turn is causing her spine to bend. We have now been told that she will have to wear a Boston Brace 24 hrs a day to try and hold her spine in place. We heard from an alternative source about the sleep system and that she would not have to wear the brace at night if we had this. As we don't know anything about it do you know of any sites relating to this?<br/>Apologies for going on a bit but as Emma is undiagnosed there are no support groups that my wife or I can attend and when I started typing this it just felt good getting it out at last.<br/>Only found your blog tonite but already commend you on what you have done!<br/>Much Appreciated!<br/>Derek Steve
Just to give you some background! I have a little girl Emma, 6 years that seems to baffle all the doctors. Emma was delivered after a difficult birth and left hospital with us thinking everything was ok. After about 6 mths the health vistor started to show concerns regarding here inability to sit up or move. She also did not cry alot nor feed well. We where eventually refered to the Child Development Centre where we where told that Emma showed all the syptoms of SMA. The tests where completed and came back negative. Since then Emma has been tested for everything available but we still have no diagnosis apart from low tone muscle and muscle weakness. So far she has had numerous muscle/blood samples taken, her tendons had to be spliced to allow her feet to come up straight and has to wear splints to support her ankles, also had a gastric tube fitted for approx 2½ years due to here inability to swallow/chew. Apart form all this she has been doing really well. She is a very smart child and she attends main stream school. We thought this was best.
The latest thing has been due to her growing gravity is pulling her muscle tissue down, htis in turn is causing her spine to bend. We have now been told that she will have to wear a Boston Brace 24 hrs a day to try and hold her spine in place. We heard from an alternative source about the sleep system and that she would not have to wear the brace at night if we had this. As we don’t know anything about it do you know of any sites relating to this?
Apologies for going on a bit but as Emma is undiagnosed there are no support groups that my wife or I can attend and when I started typing this it just felt good getting it out at last.
Only found your blog tonite but already commend you on what you have done!
Much Appreciated!
Derek

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