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Cerebral Palsy – Specialist Equipment

Around the beginning of 2007, we were very fortunate to get a standing frame for Ella. Made by a specialist company called Leckey, we’ve gradually been able to introduce Ella to the feeling of being upright and secure, whilst encouraging her to begin exploring the use of her arms in a more controlled manner.

Ella has quadriplegic cerebral palsy (all 4 limbs affected) with her upper arms affected more so than the legs. However, in quadriplegia, it’s usually the other way round, legs affected more than arms. I often wonder whether she actually has double hemiplegia, but the fact still remains that it’s hard work for her to do things.

The standing frame is excellent for helping to strengthen her neck muscles and experience different arm positions for playing with toys. The poor head control needs improving before she can begin to strengthen her trunk and stabilise some of the other movements. She certainly knows what she wants to do, whether it’s grabbing or moving an object; it’s the helping her to do it that will take time.

One aspect of the poor head control involves a preference for turning her head to the right. In hindsight, we remember she used to do this a hell of a lot during the months she spent in the NICU incubators. Since then, many physiotherapists have commented that they wish (as a profession) they had more input into helping babies that are holed up in NICU, but I guess it’s just one of those things that’s overlooked when preemies are fighting for life.

The good news is that Ella does have a good range of movement in her neck, so it’s important that we encourange her to roll her head left as often as possible. One of the best ways of doing this is to simply ensure that activities/play/objects are taking place to the left of her body. Luckily for me, Ella is a born footy fan, so an excellent way is to shove the footy on and ensure she has to turn left to see it! She also loves Delia Smith; it was on the other day and I have never seen her be completely silent for an hour other than when she’s asleep! And before I get shouted at, no, I don’t make Ella watch the TV all day!

More recently, we obtained a Squiggles Seating System. Again, another excellent piece of kit for providing support whilst sitting to play/eat etc., although we haven’t used it for feeding yet, as she sits reasonably well in a standard high chair and can eat alongside her brother.

The next thing is the sleep system, but I’ll post about that once it’s in a we’ve tried it out.

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  1. Anonymous says:

    Hi Steve: I was online searching about CP and reflux, and found your blog! I was wondering if the two were connected, and apparently — in your Ella’s case, they were. Were you able to do anything to control the reflux? Did Ella have a feeding tube?
    Thanks, I’ll check back! C

  2. Steve says:

    Hi C.

    Glad you found the blog ;-)

    CP and reflux can certainly go hand in hand, but then my son also suffers from reflux and he doesn’t have CP.

    The reflux is caused when the lower oesophageal sphincter (a muscle at the top of the stomach) doesn’t close tight enough, and it allows the stomach contents to shoot back up the oesophagus – along with all the acid :-(

    Reflux in people with CP can be down to factors such as poor esophageal motility and delayed gastric emptying.

    Ella doesn’t have a feeding tube, and has been pretty good on the feeding front, especially now the reflux is better managed.

    She does however take the maximum dose of drugs to help control the reflux. She takes domperidone four times a day, omeprazole granules twice a day, and ranitidine before bed.

    She still gets bad bouts of reflux, but on the whole it seems to be working, so fingers crossed. I’m just glad it’s nothing like it used to be last October time; she used to be in constant agony …

    We were told that if the drugs couldn’t control it, surgery would be the next step, so hopefully the drugs continue to work until she hopefully grows out of it.

    In fact, I may sort out a post on Reflux …

    All the best.

  3. Neil says:

    Hi Steve. I am glad I found your blog. I have just started mine for similar reasons (www.littlelucymay.blogspot.com). We have got a Lecky seat with the sitting base and a buggy base in pretty pink. We have had some problems with the headrest not being tight enough and Lucy has trapped her arms in the side of the buggy. The buggy also does not have front wheels that fix which makes it difficult pushing Lucy on bumpy paths. Otherwise not too bad.

    Lucy had very bad reflux which gradually is getting better. At the moment she takes Omeprazole which reduces the acid build up in the stomach and seems to keep it at bay. The reflux has improved since we started taking Lucy to the Scotson Advance clinic (www.advancecentre.org.uk/).

  4. Steve says:

    Hi Neil.

    Great to see another dad on here doing the same!

    Like yourself, we’re starting to experience the staring thing, although it’s a little hard to work out if it’s just people noticing that they’re twins.

    Either way, I know it will come sooner or later … human nature. I suppose we’ll cross that bridge when it becomes more noticable.

    What form of CP does Lucy have?

    Cheers.

    Steve.

  5. Adam says:

    Hi, found your blog while looking for information on the Squiggle standing frames!

    I have twin boys born at 27 weeks in March 2006; and Matt had a IVH (bleed) when he was 2 days old; we were told he’d have cerebral palsy about 4 weeks later when he was transferred to Bristol hospital (we live 170 miles away in Basidon).

    Will check back in from time to time, I hope Ella is doing well.

  6. Neil says:

    Hi Steve,

    Lucy suffered oxygen starvation at birth. She has athetoid cp and all her limbs are affected. We are not sure about mental delays and as she won’t talk and we are not sure if she can see so I guess we will never really be sure.

    Cheers
    Neil

  7. Steve says:

    Hi Adam.

    Glad you found the blog!

    I’ve been pretty poor with updates of late, but as you know, twins take up a huge amount of time!

    Sounds like you had a similar NICU rollercoaster … Bristol must have been a nightmare from Basildon (we’re not to far from you).

    Hope Matt is doing well.

    S.

  8. Anonymous says:

    HI, STEVE
    I’M SEARCHING FOR A STANDING FRAME WITH HEAD SUPPORT AND FOUND YOUR BLOG.
    I HAVE A NIECE, SUNSHINE, 11 YRS. OLD, W/ SPASTIC- QUADRIPLEGIC CEREBRAL PALSY.
    I SAW ELLA’S STANDING FRAME, CAN YOU REFER A WEBSITE WHERE I CAN FIND IT?
    WE’RE LIVING IN THE PHILIPPINES BUT I’M HOPING I CAN IMPORT BECAUSE THERE’S NO LOCAL MANUFACTURER HERE.
    THANKS,

  9. Derek says:

    Steve
    Just wondering if you knew of any sites in realtion to the sleep system.
    Appreciate any help you can give!
    Derek

  10. Derek says:

    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

  11. Steve says:

    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.

  12. Steve says:

    Anonymous.

    You can find the Leckey Stander at the following website:

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

    Cheers. S.

  13. Trish says:

    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

  14. Ellen says:

    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.

  15. KELLY says:

    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

  16. Steve says:

    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.

  17. tammy says:

    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.

  18. Steve says:

    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?

  19. santa says:

    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

  20. wendy says:

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

  21. John says:

    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:

  22. mom of cp-diplegic says:

    @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.

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