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

[itsnothingoriginal]

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

Sorry to hear of your sons diagnosis. It is really tough hearing those words, even when in your heart you know. It somehow makes it official and any hope that you were wrong goes out of the window.

I can relate to all you say, sadness for your child and sadness for you and your family. Its all totally normal to feel like that. Dont beat yourself up about feeling guilty or for feeling sad. Feel sad if thats how you feel, go with your feelings, they are real and in the long run it will help you accept the situation.
It is very early days for you and I can honestly say, things do get better, i never would have thought it as i had some very low times. but things will get easier with time somehow, the sad, low days do eventually turn into better days.
I found posting here helped immensely, in RL you can feel quite alone but on here people understand as they are walking a similar journey. I also found being open with my RL friends and family helped too. What part of London are you in?

Hi babs and welcome to the board:)
My dd is 1.6, she has right side hemipligea, ( not diagnosed yet) we have known since birth tho as she had a stroke,

Everyone on here knows and understands exactly how you feel, there are a lot of very experienced mums here who have a wealth of knowledge if you ever need advice or just someone to talk to.

Of coarse you feel shocked at the moment, it's alot to take in

X post summer :)

Thank you both.

I am in East London, and work in central London 4 days a week (something else I feel guilty for - enjoying work and being out of the house while DS is with a childminder.) We are hopefully moving soon, from Hackney to Newham, which will involve changing over physios etc which is going to be annoying - don't suppose anyone here has experience of services in Newham?

Is there anything else I should be pushing for? I think the walker will help loads (he's tried one out and already looks far more stable than with his push-along walker). Is there a good website anywhere with all available treatment options? The NHS one was ok. I feel like I really need to be his advocate now.

Hi *Babs
If you are in Hackney you might find the local children's disability resource centre useful (if you haven't already been referred) www.homerton.nhs.uk/our-services/services-a-z/c/childrens-services-in-the-community/hackney-ark.aspx

There's also a parent's support group:
hiphackney.org.uk/home.html

Scope (charity for people with cerebral palsy) has recently revamped its support pages, so might be worth a look:
us3.campaign-archive2.com/?u=bbe490e26df197693b2bf5b3d&id=7627696e57&e=98a6954ed3

Thanks ancient, hackney ark is where he's been having his physio. Will look at the other things you posted, thank you

babs might be worth asking via Ark if you can get the Portage service which is offered in Hackney - they are excellent and will give tips on suitable games to build up skills etc which you can pass on to childminder. Do NOT feel guilty about working - it is quite normal to spend time in employment and away from children.

Thanks ancient. DH is there today with DS so I've asked him to ask about porterage, thank you

Is it worth getting a statement for him? He won't be going to school until sept 16 but might it help before then, nurseries/funding?

we are in London too. There is the Huddleston Centre in Hackney. We are currently doing MAES therapy and the therapists there do sessions from this centre as well as their main base in Mill Hill.

Don't feel guilty about working and enjoying it. It is good you have an outlet. For me, working has been so good for my soul. It has helped immensely with this shitty situation. It has given me a break away from all the worries, time to myself, time to focus on something other than CP and as a result we have all benefited.

Might be worth starting to look into a statement. It can be quite a long drawn out process. Our LA and health trust have been very efficient and ours is almost complete. DD also starts in September 2016 but I am hoping to enrol her in play group soon. currently, dd will need 1 on 1 support for getting around, I am hoping and praying, this will change over the next year or so and she will be more independent, but knowing the help is in place, should she need it, is very reassuring.

Also, have you applied for DLA? We use our DLA to help with the private physio etc.

Not applied for anything yet. I am going to look into DLA tonight I think, it would definitely help with the private physio, for one.

Thanks for suggesting the Huddleston Centre, I'll get in touch with them.

As things stand, DS will also need 1 on 1 support for getting around when he starts school. Like you I am hoping that he miraculously will be independent by then but it would be good to know that if this doesn't happen he'll still be ok. Is it the statement that would kick off this support? Am not sure how it works.

My daughter has severe quadraplegic cerebral palsy. She is nearly 11. She extends a lot and very strongly. One of her main issues is that she arches her back when left unsupported, sometimes the back of her head is almost touching her bottom when she is laying on her side. This has led to curvature of her spine (lordosis). I believe this is known as a dystonic element to her cerebral palsy. She is now on the list for an ITB (intrathecal baclofen pump). Does anyone have any experience of the ITB pump....what are your thoughts, does it work, what are the downsides?

rumbles just to say Hi, I don't have any experience of baclofen, hopefully someone will come along soon who does.

thanks summerdaydreams; I am new to mumsnet and not quite sure how it all works yet! I have had a reply on another thread but would love to hear of lots of peoples different experiences. I suppose our little lovelies are all so different with different medical needs and situations. It's hard to find people with very similar diagnoses/conditions.x

Hi BabsUnited,

Just a quick post, but as others have mentioned, apply for DLA as soon as you can. Ring up and ask for the form to be sent asap as it can be backdated from that date.
Also, if you do get awarded DLA, then you may be able to get 15 hrs a week childcare from age 2 instead of age 3. My daughter is 23 months and not yet walking but has been in mainstream private nursery from 6 months old and they are applying for her funding to start from January term.

Also, there is the mobility aspect of DLA you can apply for at age 3 and also a blue badge.

I know it sounds daunting, but these things are all there to help, so dont feel bad in applying.

I would recommend reading the Scope and Cerebra websites for help with filling out your DLA forms, as they are very long winded and emotional to complete. You have to complete it in terms of a 'bad day'.
I got a local charity to come and help me fill it out, as they have a lot of experience of filling these forms and it does really help to get advice.
Look round your area for local charities, it doesnt have to be one specifically for CP.

Dont feel bad about working, i work full time, my daughter loves nursery and has learnt so much from them and they adore her.

Also, it sounds good progress in terms of the walker, gait clinic and orthopaedic team. They may suggest special boots called piedros (you can google them).
How is he in terms of sitting and crawling?
Physio and OT can provide other equipment to help, chairs, sitting systems etc and OT can come out to the house and do an assessment to see if there is equipment to help you.
You can also get a grant to do adaptions to your home too. I think its called a Disabled Facilities grant.

I know there is some kind of link between premmies and CP, Spastic diplegia being the most common for premmies and associated with periventricular leukomalacia (PVL) which is damage to the white matter in the brain.

There is a London Centre for Cerebral Palsy too, im not sure if this is near where you live.

I'm in Essex, so not too far away from you.

RumblesJibbles - i dont have any experience of baclofen, but i can point you in the direction of a great Facebook forum and i know there are a number of people there that have experience of it and can advise you.

RedFox31 - that would be great...which forum is it?

Just sent you a PM RumblesJibbles. Hope you got it ok.

RedFox31- Yes thanks and I have asked to join the group

Thanks Redfox, lots of great info there, thank you. The walker has been ordered. I have downloaded the DLA forms and plan to start filling in tonight, I will bear in mind the 'bad day' viewpoint. He is fine with sitting, sometimes is a little slumped forward but is stable. We have a Tripp Trapp high chair and have recently taken the baby support out of that and he's fine in it. can't get down on his own, or get into it, but fine other than that. His crawling is good now, he only really started doing this just before he turned 2 (is now 2.4). Before he would drag himself along the ground, he does a proper four-point crawl now. He still needs something to pull up against though, still a long way off standing up completely on his own.

I am trying to research the chance of having another prem labour with CP as an outcome, not really getting very far. Anyone know if there's been any research into this specifically? In the middle of dealing with DS we are sort of considering having another and want to sound out the chances of having similar again. If the chances are high, we will probably just stick with one child. So much going on in my mind at the moment

I'm from Essex originally Redfox, near 'L-O-S'...anywhere near you? Would be nice to meet up if you'd be up for it.

(I still have family there, I mean, go back every few weeks)

[babs], it is such a tricky area to predict. i too, would love another baby. And I have the same concerns.

CP is always a risk with prem births, but there are a number of factors which increase the likelihood as well as luck.
The more complicated your pregnancy and birth is one and then the NICU stayed another factor, birth weight, Respiratory problems, length of time on ventilator, infections etc all play a role, as it is at these times that oxygen supply to the brain can be compromised and cause damage. Yet, There are babies who had a very non-eventful NICU stay, no major breathing problems, infections, who still get CP.

You can request a meeting with consultant for a birth debrief and then discuss the care plan should you decide to go for number2?

Did you do any specific exercises to help DC master crawling? Dd still drags herself along the floor. She can hold 4 point position well now but as soon as she moves, its as if she is too excited, she shoots forwards and goes flat again??