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Support/Information sharing thread for parents of children with CP - part 3

745 replies

itsnothingoriginal · 29/03/2014 17:11

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before Smile

OP posts:
Everydayaschoolday · 10/03/2015 22:11

Crappy day, sitting in tears at the moment feeling like poo. OT brought a support chair for DD to try at school today. It couldn't have screamed disability any louder. At least I held it together (just) in front of the head teacher. OT phoned later this afternoon saying she had found another one we could try - apparently my face had said it all and she understood how I felt. This one looks less intimidating and more like an office chair (have googled it), so hopefully it'll fit the desks.

Then at a kids sports club for older DD, there were a couple of 3 year olds ( Sad I asked) running around, playing together. Brings it home a bit.

Right, I'm off to put some Frozen spoke guard skins on a wheelchair (arrived today - yippee!)… I'm fine. It's time for a cuppa Brew Cake Smile

melmo26 · 11/03/2015 07:02

Everyday sorry you had a bad day yesterday Flowers hope you feel better today

BabsUnited · 11/03/2015 11:11

Flowers from me too everyday. It's shit isn't it. Lots of understanding here. x

BabsUnited · 11/03/2015 11:25

We just had a pre-conception meeting with the consultant obstetrician and gynae at our hospital. It was really helpful. I went with DH to talk through the options for if we get pregnant again, what strategies we can use to prevent another early birth. Think I might go for a cervical stitch at 12 weeks and maybe progesterone pessaries, they both seem to statistically produce better outcomes. Anyone have any experience with these? We are still obviously at an increased risk of having another prem baby, and with that, an increased risk of another child with CP. And we may not be as 'lucky' next time.

But on balance we are going to go for it. I am going to do absolutely everything I can to make me feel like I'm doing my best - am going to try hard to get fitter (am just over the top cusp of a healthy BMI, could def do with losing a few pounds), am taking good conception vits, DH is on man vits, and am going to try not to stress. My DM died suddenly when I was 6 weeks pregnant in my pregnancy with DS and I have always wondered whether that stress caused my early bleeds (which I now know are a risk factor for pre-term birth). So am going to try to do everything in my power to make my next pregnancy as long as possible.

I feel quite selfish though at times for wanting another child, I feel like DS would benefit from our sole attention bearing in mind his condition. But I also feel like he would love a sibling and might also give him an ally in the playground when he gets older.

Everydayaschoolday · 11/03/2015 14:43

Thanks guys x Today has been superb as we unveiled the Frozen wheels on DD2's wheelchair. She's well chuffed :) :)

Everydayaschoolday · 11/03/2015 14:49

Good luck to you Babs - it sounds like you've planned and are doing as much as you can. Sorry I have no experience of pre-terms.

I think your DS would benefit tremendously from having a sibling and it sounds like you've made this choice for your whole family, not just you. Not selfish at all. My 2 daughters dote on each other (younger one CP and other is NT) and they've learned early on about compromise, sharing, being nice etc through working with each other - although I appreciate that you do not necessarily require a sibling to acquire these skills.

melmo26 · 13/03/2015 19:43

Hi all had our cpips app today, it went well.
DD hip xray was all clear, forming normally. Her right leg is 5cm shorter than the left and not as flexable (kept saying hypotension when measuring th R and hypertension on the L leg)
They don't want splints or the insole which we are fine with, they said it would only restrict her movement but will keep an eye on her ankle/foot.
They have said they want to give her Botox injection on the ankle, iv seen loads on here talk about Botox injections, been doing some reading on it too, I hope it eases the stiffness and the intense physio after helps

Everydayaschoolday · 13/03/2015 21:34

Glad the x-ray was good news Melmo Smile. Not had botox, so can't help with advice. But I'm aware of the requirement of the intense physio afterwards which really makes a big difference. Let us know how it goes x

Everydayaschoolday · 13/03/2015 21:47

The Tomcat assessment was fantastic today. I'm dreading the quote coming in next week lol Wink, but DH and I already have our hearts set on buying one. DD2 whizzed along our street on it and she's struggled to ride any other bike. Massive grins and laughing - that is priceless.

If you are even just thinking about a trike, don't hesitate to get a Tomcat assessor out to visit you. 'Dave' was a lovely bloke and let us try the next size up just to be sure, showed us all the colours, gave us lots of advice about the bike, and was just simply reassuring. Couldn't have been nicer.

BabsUnited · 13/03/2015 21:53

Everyday sounds great about the trike! I found out today that our local children development centre (where DS has his physio and sees the consultant) have arranged for a trike meeting where apparently different providers come to see us with their products and we can let DS have a go on them to decide which one we want to go for. Very excited about this! So happy to hear your DD had huge grin and was laughing, can just imagine DS doing that Smile

Good news about the scan Melmo. x

melmo26 · 14/03/2015 07:28

Everyday the trike sounds great, hope you don't faint when the quote comes in Grin

Everydayaschoolday · 14/03/2015 17:54

Grin I'll share the shock on here Grin

Everydayaschoolday · 14/03/2015 18:54

Babs that's a fantastic opportunity to have a range of providers and styles to directly compare. I wish we had had this. Please do let us know which ones you try and how you get on.

whereonthestair · 15/03/2015 17:19

I have already posted how much ours cost up thread!

Albaba · 16/03/2015 09:46

Hi everyone. Just checking in to this thread again. Wow it has really moved on! Firstly I must apologise because there have been some people that have given me some good advice and I just seem to have vanished in to the thin air! A culmination of things really. Firstly I just have been so busy recently. I wanted to sit down and write a proper response but kept finding reasons not too. Secondly my laptop has broken again and is in being fixed. Thirdly my dd has been sick with chickenpox so we have been housebound with her all week. This is not my dd with cp but her twin. Hopefully we are getting over the worst of it now. No signs as yet on my other dd.

So my dd is doing well but as I'm sure you all know the challenges that come with cp. We are going on holiday in a few weeks. We have sold our twin pram recently as my other dd doesn't need it and flat out refuses to go in a pram and want to walk everywhere but we still need some form of transport for my other dd. While she can walk unaided she couldn't do any sort of distances and her balance is not good so while she can get herself from a to b we couldn't do simple things like toddle round the shops which makes things difficult. We looked at the out n about nipper which has the heavier weight limit of 50lb. My dh was put off though by the front wheel and thought we wouldn't be able to get it in to the car along with suitcases too. Does anyone know if there are any other options. Don't want to be spending a fortune as it will only have light use as we encourage her to walk and be independent as she can.

So also just carrying on with our usual round of physio and we are definitely going ahead with a statement of special educational needs as my dd is due for preschool in September so the wheels are in motion for all that too. Thanks everyone Albaba.

Summerdaydreams · 16/03/2015 10:08

Wow this thread has been super busy - I've not been on for a couple of weeks!!!!

everday a bit late, but hugs and Cake, for your tough day with the Head teacher and OT, It sometimes just gets you doesn't it? Out of the blue, so complete understanding from me, When most of the time things are fine. But what a lovely OT, one who understands, hope the latter chair works out! And fabulous purchase for the wheelchair, will save that idea for when dd gets hers! It's something I am putting off although I know it is inevitable. How did you feel about it??

mad woman helloooo! I remember you responding to my very early posts when dd was very young and the future completely unknown in the very bad early days, your dd is inspirational and that is the aim for my little girl who is now 3!

babs good luck with your future pregnancy. It's natural that you are nervous but sound like you are doing all you can. Every pregnancy is different, i know that having a prem does make you at increased risk of another but plenty go on to have full term after, everything crossed for you. Are you in or near London? St Thomas's hospital run a specialist preterm clinic which you can be referred to by GP or self refer, may be something to consider for extra monitoring for the future?

Summerdaydreams · 16/03/2015 10:13

albaba good luck with the statement, we have just had ours finalised and it has really put me at ease that all dd's needs have to be made as it is legally written down. Sorry to hear the dreaded chickenpox has hit.

Everydayaschoolday · 16/03/2015 10:48

I noted that whereonthestair! So I'm now semi-prepared for the quote this week Wink Grin.

Thanks for hugs and Cake Summer. It blows over and then more life comes along Grin. You are all so, so lovely on this thread xx

Everydayaschoolday · 16/03/2015 10:54

A cheery piccie this Monday morning Wink

Support/Information sharing thread for parents of children with CP - part 3
Summerdaydreams · 16/03/2015 10:59

Wow!!!!!!! Very cheerful picture for this grey, wet Monday!! What a fab find Grin

RedFox31 · 16/03/2015 16:32

everyday the wheelchair looks fab!!!

We're going for our Tomcat trike assessment on Thursday! I cant wait!

Everydayaschoolday · 16/03/2015 18:53

Grin it's great, isn't it. We were out in it for the first time for a hospital appointment today (same as Melmo - hip X-ray), and got loads of smiles and lots of 'my daughter would love that!'. DD2 felt like a celeb! hehe Grin

Everydayaschoolday · 16/03/2015 18:57

Enjoy your assessment on Thursday Redfox Smile. Hope it goes as well for you too x

Beware of White Knuckle Syndrome as you try to prise your little one back off the bike and explain that 'this one was just to try for size, and the man would have to make one for them' lol Wink

Summerdaydreams · 17/03/2015 10:30

redfox I think it is great that your daughter is repeating words back to you! It is very,very promising and I think this points to the newer words coming too, but ......probably on your little girls terms, when she wants too Grin.

My dd is now 3 and when I wasn't obsessing about her motor skills, I was very very concerned about her lack of speech. It is only the last three or four months that her speech has exploded!( still sometimes hard to understand at times but significantly better) So she has just needed time, my little girl is older than yours and has only just naturally and freely started repeating words back ( including a few swear words she has heard mummy say [embarrased]. ) so I think your little one is certainly heading in the right direction. hope the SALT helps, we have had it from very early on, but our last block in September seems to have kick started her!

RedFox31 · 17/03/2015 16:45

Aww thats lovely for your DD2 everyday
Hahahah lol yes i hadnt thought about that!! Shes a bit like that with her SmartTrike which she is not even controlling herself!!

Summerdaysdreams - thankyou so much, its good to hear and puts my mind at ease, but yes you are right. If i am not obsessing about whether she is standing/walking enough then i am worrying about the speech!
My gut instinct tells me she just needs more time like you say, she babbles all the time at home and even tries to sing a tune (dunno what it is but its cute!)
LOL about the swear words!
xx