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

[Everydayaschoolday]

Also, trying to catch up with the thread, for those of you concerned with other kids reactions, DD2 is absolutely adored at school and is uber popular by the kids in all classes. It's as if they know she is vulnerable as she has an obvious physical disability, but they are so kind and inclusive. If anything, our difficulty is going to be making a suitable fuss over NT DD1 who attends the same school and can see the adoration DD2 gets. An adult with CP came on CP thread 2 to also reassure us parents of the kind treatment she received as a child from the other kids at school, if anyone wants to see that xx

[BabsUnited]

Been busy over Christmas and this thread dropped off 'threads I'm on' so am sort of place marking. Also wanted to say happy new year to you all.

Hi everyday, I am a new joiner to the thread with a DS who is 2.7 with spastic diplegia, he just got his splints before Christmas and is getting on well with them. Still haven't found shoes to fit but am still looking. Nice to hear your dd loves her wheelchair, we may well have to consider this for DS. Did you get one of those larger pushchairs in between, is it called the Maclaren Major? Can you get that through physio?

[Everydayaschoolday]

Hi Babs :) In our area, Wheelchair Services issue both SN buggies (larger pushchair) and wheelchairs. We were referred by our physio when I mentioned DD2 was getting a bit big for her NT pushchair (she was 2.5 at the time).

At our appointment with Wheelchair Services, they showed us both the SN buggy and the wheelchair that were suitable for our DD2 (in terms of size, support pads etc), demonstrated their use (folding etc) and let us have a go with each round the corridors to test which we would prefer. From this we got an idea of manoeuvrability, weight, comfort of DD2 etc. All that was irrelevant though, DD2 wanted the wheelchair as it had a groovy design cover on the wheels :)

So we didn't get a SN buggy in-between because it was all on the same waiting list. Wheelchair Services have told us that if we do want to change our minds and swap the wheelchair for a buggy, this would be no problem and just to go back to them. So it's good to know the option is always there.

Oh and the SN buggy that we were shown wasn't the mac major. It was a different one but it really looked brilliant - robust and stylish. Our Wheelchair Services said they didn't do mac majors, but I can't remember the design they showed us, I'll try to look it out for you.

Welcome to the thread Babs It's lovely here, and I've learned so much from these wonderful MNers.

[Everydayaschoolday]

Oh and I never manage to write a short message lol

[goneHaywire]

hi guys.

Can anyone suggest good milk bottle for DD 2.5yr? she needs to move on from the tommee tippee close to nature bottles (I've been having to cut the teats to make the holes bigger)

[Everydayaschoolday]

Hi goneHaywire. Sorry I can't help with bottle recommendations. We used the Doidy cup and non-spill sippy cups after the Closer to Nature bottles. DD2 took longer to learn to use a straw, so I held off getting the toddler straw 'sports bottles' until a bit later. If you're after a faster-flow
bottle, your OT (if you have one) might have a good recommendation. x

[BabsUnited]

Morning everyone

Gonehaywire not sure if its any help but we found the little Tommee Tippee cups with the small flip spout quite good. DS never took bottles (I bf until 16 months) and we introduced the TT cup at about 6 months I think as part of weaning. He also liked the ones with the big flip up straw and now has a Tommee Tippee non-drip cup in his bed. He prefers open cups now tbh at 2.7.

[BabsUnited]

Also thanks everydayaschoolday for your info on SN buggies/wheelchairs. We are going to be moving borough some time in the new year so will have to get used to a different set of children's services so I'll be sure to ask who covers what.

DS seems to be tiptoe walking more, think his muscles are getting tighter. Where does everyone stand on the stretching VS not stretching debate? A friend of mine with two kids with CP is very pro but our physio reckons there's no evidence to say it works. Personally I can't see what harm it could do, and we've not been doing it as much recently and now he seems tighter. A coincidence? He's also had a growth spurt which wont have helped.

[Albaba]

Hi everyone. Just wondering what everyone else has done in their situation. Has everyone just accepted their situation for what it is or has anyone taken legal action?

My dd 3 has cp affecting lower limbs only. As far as we were concerned we were taking a perfectly 'normal' healthy baby home. Nothing was noticed when she was in neo-natal. It was only after missing her milestones and a MRI scan at 21 months that we found out she had cp. Most days I have accepted it and the constant round of appointments we have for her and all the extra work we have to put in with her.

We made a complaint to the hospital and they have came back with a long winded response and saying that were sorry and they deeply regretted what had happened but that doesn't change anything does it? We strongly believe that she should have been delivered earlier than she was and wasn't because of being passed round different Consultants and no neo-natal beds being available.

I just feel cheated out of what should have been. Simply things like a walk in the park or going to the shops we couldn't do. She can walk short distances but couldn't do very far. She is in nursery and her being the only child that can't join in really hurts. I think as she is getting older it is more noticeable that she is actually disabled and not just a late starter.

I just worry for her and for us and what the future holds.

Thanks Albaba.

[Summerdaydreams]

Albaba . We have not taken action against the hospital. And we wont be, Our daughter has CP because she was very prem. it was not picked up on in NICU, because it cant always be, but like you it became obvious once milestones were missed. Prematurity is one of the main causes of CP.

It is utter crap that we have 'not got away it' but I am now at a place 3 years down the line, particularly the last 3 months or so,where I accept that this is the card we have been dealt. Other than dd arriving on her due date, I really don't think there was anything different that could have been done to change our fate. It has taken a long while to get there, but I am now of the mind set, that things could be a hell of a lot worse. The future is a worry but I try not to think too far ahead, live in the moment and I believe that we have coped so far, so will will cope then whatever is chucked at us.

Was there a particular incident that you feel has contributed dd's CP? Because if there was neglect/poor practice on their part and you feel you are being fobbed do not give up fighting. Have you contacted PALs?

[Everydayaschoolday]

Hi Albaba.

In our circumstances, I think sometimes stuff just happens and sometimes there just isn't any blame. There is nothing that I could pinpoint that would have mitigated against the traumatic birth we endured. It's not a matter 'accepting the situation for what it is', if I had gone for compensation, I would have been wrongly accusing all the wonderful staff who saved DD2's life. But those are our circumstances, and I appreciate we've all had different experiences.

I can go into detail, but I've got previous for war and peace accounts lol

[BabsUnited]

It has crossed my mind Albaba but I don't think we will. When DS was born there were a few moments (not sure how long it actually was) where the doctor couldn't get the intubator in to DS. She had one go, didn't get it right then succeeded on the second try. I have wondered whether that caused the brain damage. DS also rolled off the sofa after he'd been home 3 weeks (so would have still been 37 weeks gestation) which I berate myself for on a daily basis (although how on earth I was meant to know that a baby not even full term could roll ). I don't know what it was, but I know prematurity is an overwhelming factor in CP. So am clinging on to the fact he got the damage in utero or shortly during/after labour by some means that wasn't human-related.

But I don't know for definite that the way they handled the labour wasn't correct - he was my first. But I do think that in order to try and move on I've had to accept that things are the way they are. I can hunt for blame as much as I like but ultimately it doesn't matter. If medical negligence was more obvious or more clear cut then I might take a different view, but in our shoes, I don't think it would help.

Saying all that, I did have a meeting with my consultant before Christmas where I had asked to go over last time in order to prevent having another prem birth in the future (we are thinking of TTC this year). The consultant who delivered DS was there and she looked shocked when I said he had CP. I didn't go in expecting an apology or in any way accusatory as what has happened has happened. But she was very reassuring that in my next pregnancy they would go above and beyond to reassure me and to help me reach a good gestation and a good birth.

Sorry, am rambling a bit now (cava on a wednesday, never a good idea, hic) but in our circumstances I wouldn't consider really making a complaint or taking it further. I don't really know if what happened could be considered negligent but I would rather channel my energies into his therapy and everything else we have to deal with, which is frankly enough at the moment.

But to you x

[Holidaybound]

Hi all,
It's been ages since I've posted mostly due to lost password. It's great to hear how the old members are getting on and see some new ones.
DS is now nearly 5 with quad cp. His difficulties are mostly just gross motor now. He crawls, but is a million miles away from any further progress towards walking. He started full time school in sept which went really well with the help of his TA from nursery class.
Albaba -We considered asking the hospital to investigate DS's care at birth, but I don't think having someone to blame would help me or him. Without having it confirmed that DS's brain damage could have been avoided I can mostly keep my bitterness in check. It is a hard choice though, so best wishes for your decision.
I think you were talking about getting a grant for home adaptions, is that a DFG? How are you getting along with it? We've had a first OT visit regarding this as I think DS needs downstairs bed/bathroom. First visit was irritating - DS smiles at everyone and they all say "he doesn't look disabled"! But I've just had a call from the OT again now she's spoken to our physio. The physio confirmed that she does not think DS will progress to manage stairs. It's what we expected her to say, but still sad to hear. It's also good news though as we can hopefully stop faffing and get the facilities he needs to make daily life, toilet training etc much easier.
Babs - all the best if you try for another baby! Our new daughter is 8 weeks old. Consultant led and millions of appointments meant that a similar problem to my first pregnancy was picked up this time and DD was born by c-section with none of the trauma of DS birth. Although the pregnancy etc has meant I've been able to do less physio with DS, he adores his little sister and I really think it's good for him to have a sibling.
Sorry, sorry sorry, such a long message! X

[Everydayaschoolday]

nice to see you again matey. Many congratulations on the arrival of your baby daughter . Jealous of the lovely new baby smell you'll have in your house aww x

Glad your DS is doing well in FT school. DD2 (4 in June) goes FT in Sept 15; she has a statement and 1:1 support so we're not concerned at all - the school is fab (she's there PT (15hrs) in the nursery setting at the moment).

Babs Please be kind to yourself about your little one falling off the sofa. It is remarkably common - it happened to DD1 (NT) as a baby too. It's awful when it happens though . The specialists could tell that DD2's brain damage was caused by asphyxiation, lack of oxygen at birth; I'm sure they would have told you if your Ds's could be linked to physical trauma - I really think it unlikely, more .

[Holidaybound]

Thanks everyday I'm really enjoying having DD, and this time I can see why people like the baby stage.
That's great you've got your DD's statement all sorted and found a good school. The attitude of the staff seems to make so much difference. Will your little one keep the same TA when she goes full time? For full time DS' school split the job between his TA from nursery class, and one of the other TA's he already knew. They have totally opposite personalities and it works perfectly.

[Summerdaydreams]

Congratulations holiday on the birth of DD, what lovely news. Lovely to hear ds is getting on well at school too and your are enjoying your little bundle...

And everday

DD just turned 3 has started pre-school this week, she has 1:1 support, it has been a real fight with LA to get it in her statement which is ridiculous seeing as she can't crawl or walk! Doing settling in period this week and so far so good, and as of next week I leave her, I will have the tissues at the ready...

babs dd tumbled out of Moses basket after dd1 squeezed between it and the bed, and too rolled off the bed at a later date, I often wonder too, could that have been, but in reality, I think it is most certainly their prematurity. Also, A baby rolling very early is also an early indication of CP which would support that.

[RedFox31]

Hi everyone, Happy New Year to you all!

Lovely to hear about everyone's children and new additions!!

Well, a quick update from me. DD is 2yrs3months. Crawling is going really well, still not much interest in pulling up or standing, mainly as she knows her balance is poor, but she is getting noticeably stronger in her lower limbs.
She loves to walk around holding our hands - she has very minimal scissoring, sometimes one foot gets caught in front of the other, but she manages to correct it.
She recently got a R82 crocodile walker, so she is still getting used to that, and we are using it for short spurts each day around the house, and when the weather gets warmer hopefully we will be able to take it to the local park.
We have just started over the last few weeks to teach her to crawl up the stairs and she manages the first few steps all on her own which is fantastic.
We are also getting an Upsee, for use around the house, just to get her upright as much as possible, as she would much rather sit and crawl. She is suffering from constipation too, so the more upright the better in terms of this.
Talking is still slow progress, although she understands everything and has little conversations with us even though i havent a clue what she is saying. We have a referral to speech and language, first appointment in 3 weeks.
Awaiting a referral to othortics, i think our consultant was surprised she hadnt seen anyone yet.

Has anyone been successful with a DFG? We need to look into leveling out front and back gardens, ramp to the front door and out the back door and widening the doorways as she can only just about get the walker through at the moment.

[Everydayaschoolday]

Holidaybound I've asked DD2's TA if she's interested in the FT hours in Sept and she said absolutely :) DD2 is an easy child - outgoing, happy disposition, fiercely independent lol so she's a popular character in class and all the teachers love her. I've been approached by 2 after school club teachers keen to have her in their clubs next september (fantastic inclusive mainstream). Our TA was specially recruited just for DD2, and I had some say in the selection too from the candidates interviewed. So it looks like we're keeping our lovely TA when DD2 goes FT :) Enjoy your baby-stage sofa-snuggles and baby powder smell awwww xx Take care of you too, the baby stage is hard work .

Hey Summer nice to see you again too x. Sorry to hear of your struggle with your LA :( We have been very lucky with all the support we have had (it's been like pushing an open door for us). The SN Children's board is full of similar stories of difficulties, very sad really. I'm glad the nursery settling-in period has gone well this week. Our DD2 really flourished in nursery - at the start there were some tears and clinginess, but honestly, I just get dumped at the door now (kiss goodbye if I'm lucky) as she seeks out her friends lol :) We have seen an exponential improvement is DD2's abilities (walking, balance, fine motor skills, social interaction etc) since attending nursery - it will be so good for your DD. Will be thinking of you next week - you will be fine .

[Everydayaschoolday]

Hi Redfox Happy New Year to you too x

Your DD sounds very much like ours was at that age. DD2 is 3Y 7mths now, so we're a year and a bit ahead of you. DD2 really struggled to crawl but was happy to weight bear, so at your stage, we put toys on the sofa for her to stand and lean against, whilst being occupied. Furniture cruising developed from there :) (slow side-stepping to reach toys). DD2 walked independently long before she could 4 point crawl, so don't feel like to have to encourage development in the typical order .

Again, like you, speech is DD2 weakest skill. But her understanding is spot on. Her speech has only recently started to fall into place - probably since starting nursery in September. We do SaLT too.

For orthotics, we started with being given Peidro boots, but now she just has formed insoles that we put in shoe-shop shoes for her. The Piedro's were a bit heavy and bulky for her to lift her little feet. She gets reviewed every 6 months-ish.

We had a Kaye walker which lasted all of 2 weeks then DD2 decided to go independent lol. She does have a wheelchair though as she tires quickly so we use it for family days out.

Let us know how you get on with the Upsee. It looks like fun :) Sorry I can't help with your Q - I've no experience of that one x

[Ohmygoshohmygosh]

Thanks everday, you dd sounds like she is thriving , I really am sure nursery will bring dd along even further once I have got over the trauma of leaving her. 3 hours every day to myself how, what will I do with myself??

physio is also finally going to introduce a Kaye walker to assist in her independence, which I am excited about.

redfox nice to hear from you again. Hope your speech referral goes well, we found our SALT input really useful and since our last block finished in October, DDs speech has really started to take off. Like your dd has always had amazing understanding, but her words have been slow and pronounciation difficult. but o my god, how her speech has taken off in the last two months, words she couldn't pronounce and thought maybe she never would, have and are getting clearer and clearer. And she is now copying what I say back which isn't always a good thing!!
She is having her own conersations, which is a prelude to proper speech, So keep faith and just as your daughter has gained skills and confidence in crawling, I am sure talking will follow.

[Summerdaydreams]

Oops seemed to have mucked up , had named changed for another topic area section (not wanting to jinx early stages iygwim), then returned to my faithful CP thread and posted before changing name back, so last post was from me summer

[Everydayaschoolday]

You on the there Summer?

[Summerdaydreams]

Haha if only. I am a silly cow

[TheOnlyOliviaMumsnet]

@Albaba

Hi everyone. I see that some people have been asking about DFG for home improvements well I can provide information! We have been assessed and approved for DFG. We had an OT out to the house who discussed our needs and looked around the house at things like how wide our doorframes were and the fact that we had stairs and a high step to get in to the house. Our main problem for us though is that we have no downstairs toilet facilities and our upstairs bathroom is tiny. She took measurements too and as far as I know the case was then discussed by a panel and we have just been told that we have been approved for a full DFG! We have someone coming to the house next week to take measurements and draw up plans of exactly what we need. I feel sad in one way that my dd does need adaptations made to the house to make things easier for her but at the end of the day it is the reality.

Our house is quite boxy. For a 4 bedroom house none of the rooms are big. What we plan to do is a side extension to the house which will be downstairs living and bathroom - toilet and shower room. We also plan to have our kitchen and dining room which are two small rooms knocked in to one.

Also we requested a Disability Social Worker who was really useful. She was out with us during the week and we got more useful information and help out of her in 2 hours than we have got out of most people in the last 2 years! She actually had a child with cp herself so had been through everything herself and knew exactly were we were coming from. Anyway she said that the hardest part was actually being approved for the DFG and we had been. She said that after that things move pretty quickly and we could be looking about a year to completion.

Let me know if anyone has any questions of DFG and I will try my best to help. Thanks Albaba.

Forgive the intrusion: Albaba started a new thread by mistake this post was meant to be here.
Thanks
MNHQ

[Everydayaschoolday]

Hi OliviaMumsnet thanks for passing the message over.