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

Hi everyday sending an un-mumsnet hug back :)

The realisation sometimes is so overpowering. I must admit I was in tears too when we got her hand splint.

It's great that your dd is proud of all her padaptions. It's probably all she is talking about. Here's hoping she can have more independence for herself.

*adaptions:)

EVERYDAY. I can totally relate to what you are saying. My DD is nearly three. We had an occupational therapist out to our house a few weeks ago. We too are getting handrails for our stairs. We are also getting some type of potty chair for toilet training as we don't have a downstairs toilet but apparently as my DD has special needs we can apply for a grant to get one which is good. I know that this is all in my DD's best interests but as you say it is a permanent reminder that my DD does have a very real and permanent disability. It is just so hard sometimes.

Sorry EVERYDAY but I am not quite sure exactly your DD is affected. My DD is now walking. Great you might think but it's not how a "normal" child would walk. For example this morning we were at church. Our church is very casual and they wanted to get up and walk about. My DD is one of twins. Her sister got up and walked about effortlessly. My other DD got up and yes she does walk but walks awkard. She tends to walk inward, her balance is not good and she has the tendency to fall often. She does want to walk and I don't want to hold her back but I just felt that people were looking at her. I know she can't help how she is and we can't do anymore than what we are doing for her but I do have the tendency to beat myself up about it. I just thought at this stage at nearly three she would be further on than she is. She has both piedros and afos. I just thought that once she started walking that would be it. I didn't bank on the balance and falling issues. It's just getting harder for us as she is getting older.

Hey Albaba. I'm just delighted that our DD2 is walking. We were not given much hope in the early years. Yes she is unstable and falls easily and most definitely cannot run/jog. But she can do little jumps and walks with stiffness but some stability both holding hands (more stable) and independently. And she tires easily.

DD2 has asymetric bilateral spastic CP. So she's affected with stiffness on both sides of her body, but affected more on one side (the right) than the other. And affected in both her upper and lower limbs. She cannot turn her palms face up, but she can hold a beaker (palms facing).

We too have had a couple of items from the OT on loan, but it's like drip feeding. At the moment the OT is concentrating on getting the schooling piece sorted for September (DD2 going into nursery setting in primary school), so the OT's not going to be back in our home for a little while. So we went out and bought the adaptions that we thought would be useful - handrails, steps and the like.

I just wish that wheelchair services waiting list was not so ridiculously protracted. We've been waiting for an appointment for just over 6 months now :( I'm considering just going and buying a Mac Major as situation is coming dire.

We're also considering head protection. Does anyone else use this to protect during falls? Any recommendations or advice would be welcome :)

Hi everyone, i havent posted for a while - hope you are all doing ok.

My daughter is now proper four point crawling, im so pleased, and in the last few weeks she has become so fast at it. She loves us chasing her round the room.

Our physio said the next steps are to get her standing, then side-stepping.
We have peidros and a basic stander. How long did everyone's child have their stander for? Should we be pushing to get a walker?

I think its her left leg holding her back, she doesnt put full weight on it, and it turns outwards slightly, so it rolls over a bit. She also toe curls on both feet. Her consultant thought that her achilles tendon might be tight on that left foot, but they are going to take another look in October.

Our physio has left on maternity leave, so we are awaiting to be allocated a new one.

Any tips on anything i can do to practice standing, apart from using the stander religiously? Our sofa is too tall for her at the moment.

Also, has anyone started potty training before their child is verbal? My daughters understanding seems pretty good, but words are coming slowly.

Redfox, ask to get serial casting for both feet, it means 4-6 weeks in casts but it worked a charm for my dd

Congrats on the crawling , clever little girl x

Also we have a weaker leg than the other , we used a foam mat under the stronger leg so it encouraged dd to weight bare more on the other leg. We never had a stander but we would do activities with her stood in her gaters using the foam Mats After 7-10 days try 2 mats under stronger leg. We used the garden square mats that you put under a paddling pool. It's really progressed her development we've gone from nothing to walking in about 4 months x

Redfox DD2 has just turned 3. Routinely uses one-word 'sentences' but this has recently increased upto 3 words: 'my turn', 'daddy says no', 'more please', 'me walk' type thing.

We have recently cracked toilet training and it took about a week and a half (same as her NT sister, although DD2 trained later (3YO) than her sis did (2YO)). We too believe her understanding is in line with her NT peers (so does SaLT), just delayed speech. She showed positive signs of understanding the need to go feeling, and understood when she wee'd and pooped. She asks for the bathroom/indicates need by simply 'toilet'. We are dry day and night now :)

Thanks everyone for your advice :-)

Bedsheets4knickers - what does the serial casting do? Should i be asking physio or consultant?
I am tempted to pay for a private physio appointment just to get some advice while we are waiting for a new NHS physio. There is a private physio in my area who has worked at 'BrainWave' so I'm thinking she sounds a good option.

Also, when you put the foam mat underneath, was she bare feet or wearing piedros?

everydayaschoolday - thankyou, thats really encouraging. My daughter isnt 2 until October, so i probably wont start yet, but ive started asking her when she has pooped (i can tell when she is doing it, so i ask her afterwards) and she nods yes.
Her babbling has increased up a notch this week, very noticeably, so i am hoping its the start of a few new words. The most common ones are 'hiya','dad','daddy','baby','mum','mummy','go','gone','done'. She has tried to say 'bottle' recently and she has said 'clap','cat' in the past. 'Hiya' is now turning into 'hello' or 'harro' lol

For my daughter the serial casting got her foot and tendons used to stretching to a 90 degree angle she was rigid pointy toes. They slowly stretched the tendon over a 6 week period then held it in place by the casting. It's like 24 hours constant physio but very gentle.

Our consultant wouldn't see us until after we had done the casting but the physio arranged it all. I think physio can go ahead and do it . Although I'm not sure a private one could authorise it as it would have to come from the people who her notes were with. Private could say wether it would benefit or not. We did about 2 months of private physio . If you can afford it then go for it x

Hello all, not updated for yonks but I need some advice please!

Our paed is really keen to give Botox a go, after Baclofen doing sod all and AFOs not being the brilliant thing we thought they might be. I'd just come to terms with the idea of Botox (I must say, the leaflet that read "side effects: fatality" did NOT help) and was chatting with our physio today who casually mentioned it would also involve casting for weeks. We have gait clinic next week, but our paed anticipates bilateral treatment on gastrocnemius, adductors and hamstrings and our physio thought that might involve full legs casts up to hips. It has thrown me all over again. Partly the sheer bloody unfairness of CP but also, how the flip will poor DD and I manage if she is cast for up to a mont?! We live in an upstairs flat and although I have supportive friends and family, don't actually get any physical help as family are far away. DD is hyper-aware of everything but her understanding is not quite "there" always (also undergoing ASD assessment) and she has huge anxieties around procedures so it was agreed Botox would be under GA. I'm just having an evening at a loss of how to explain it all to DD and make it all bearable for her....if 4 weeks seems ages to me, it must be a lifetime to under 5s! Please give experiences.....

Albaba I can sympathise about the walking-but-funny-gait thing. DD has been walking independantly (nearly 4yo) for a little under a year, but her gait is all over the place. Most days I just take it for granted she has this skill mastered now, but every now and then see her different her gait is from peers, and it hurts. I recommend biscuits and more biscuits

amy sorry I don't have any experience of Botox so can't really be of any help. All I can say is I completely 'get' the whole unfairness of this damn CP.
How did you get on at gait clinic? are you any further forward with deciding how to approach it with dd??

Today, I am pissed off with myself. The summer has been really good, I feel dd's language is coming on and although still hard work, comparing to last summer things have been much easier, we have had lots of fun.
Today we went back to swimming lessons and I managed just to make it to the car after her lesson before bursting into tears! And here I am sat here still crying

I have been fine for many weeks, and even this morning but seeing all her little swimming pals jumping in, running across the wobble board, toddling around in the changing room has just sunk me right down. I am angry at myself, because dd loves her lessons, she runs across the wobble board with her stiff legs being held, she thinks she can do it, and thats the most important thing isnt it?
So, I am pissed off with myself for letting this same old stuff upset me. why after so long, does the same thing get to me? Crying isn't going to change things, so Now I just want to stuff my face and that's no good because I am trying to be healthy

Summerdaydreams - so sorry to hear you have had a rough day. I think we are always gonna have days like this, maybe they will become a bit less frequent as they get older - i dont know.
All i can say is stay strong, tomorrow is a new day, you can only look onwards and upwards, otherwise the further we fall - if you see what i mean.
I know its easy for me to say, and dont get me wrong, i have some really tough days - more so when i see other kids and what they are doing, and not knowing the future is a really difficult thing.
I am always thinking to myself will DD ever walk? But she has mastered sitting, and now four point crawling - so I'm hopeful and its just a waiting game i suppose

But sending big hugs, and i hope you have a better weekend xx

redfox your words really really helped.
Today has been a much better day . I have smiled with such pride two or three times today, when seeing dd playing with her Peppa figures, talking to them and seeing how she now continually gets herself up lying to sitting. Both are new skills and all sending her in the right direction.

So lovely to hear your dd is 4point crawling, I think that puts her in good stead for walking. Thanks again.

SUMMER. I am really sorry that you had a bad day. I completely get were you are coming from. There have been so many times I have gone over in my head why us?, why my daughter? I think now when we are about the house she can get about relatively ok its just when we are out places with other children that I see that she is miles behind. It has been especially hard to see children a lot younger than her find their feet and are now up toddling about effortlessly.

We are due to start proper swimming lessons with my dd this week. We have been taking her ourselves and she loves the water. It is a class for complete beginners. I think in the water she doesn't feel or look different to other children and it will be good for her physio.

It was my own mother yesterday who didn't quite reduce me to tears but made me really upset by making completely insensitive comments. I think most people in our town can see that she has difficulties and usually make positive comments about how well she is doing and how she is making good progress. We were at an event yesterday and my dd was up walking about. My mother made a comment along the lines of how she was walking really badly inwards and was she always going to be like this? Completely insensitive. Of all people I expected support from my parents. They just don't seem to understand. All their other grandchildren are all "normal" and met all their developmental milestones. I have explained to them that this is long term and that she is going to have difficulties but I think that they think she will just get up and walk and with physio she will just be like a "normal" child.

I had a rant to my dh afterwards. I expect support and understanding from them not negativity and making me feel crap. Having a child with cp has completely changed our lives. It's certainly not want we wanted or expected but it is what we have got. We have put in hundreds of hours of physio with her to get her were she is now. From a baby who couldn't sit unaided to walking independently is an achievement and one that we didn't know that we would ever see. Yes her walking is far from perfect but she is walking and hopefully with more work it can be improved on.

Summerdaydreams - so glad i helped and you had a much better day x

Albaba -it is strange how the people closest to you, still dont seem to understand. We have a similiar issue - normally comments like "she'll get there in the end", "she just had a bad start, she will catch up" - from grandparents too.
My mum has my daughter one day a week, and she knows her issues and limitations, but still keeps questioning me. "Are you putting her in the stander", "Is she wearing her boots" etc etc and because a friend of her's daughter had CP and was walking by age 2, she feels my daughter should be too. I have to let it just go over my head, i do try and explain but can be frustrating sometimes.

I've been reading through some of the older threads, and i can see how far your daughter has come Albaba - i really hope that my daughter can start walking soon - mainly for her own independence, so your posts really give me hope.

In terms of equipment, can i ask what you all got from physio? We have a stander and piedros, not AFOs or splints or a walker as yet.
We have an appointment with the new physio this week - so im going to mention the serial casting, may as well throw it into the conversation.

summerdaydreams how is your daughters speech now? My daughters is still very slow at 22 months.

We just got an appointment through for a 2 year development check. Has anyone else had one of these? I'm not too worried, but i know that she doesnt 'perform' - especially in front of strangers, she will go quiet and probably just cling on to me.

This is a bit late on the subject of shoes covered earlier in the summer but we just found this on p18 are some really funky shoes. We bought the sandals from a brand called Memo, and at £65 they weren't cheap but a snip compared to new Piedros. Can really recommend!

We found swimming, esp in a hydro pool, to be amazing. Over the summer we had 6 weeks of structured hydrotherapy-in those weeks DD's balance and coordination came on so quickly compared to the hours and hours of physio we slog over the year. I keep trying to book swimming lessons to carry on her water confidence and keep being foiled: will get there soon!

REDFOX. Thanks for replying. Yes you are right it is frustrating. Frustrating for us as parents as I'm sure it is for my dd too. She has a twin too so when you have a direct comparison of what she should be like but isn't is very hard.

Anyway what we got from the physio is a standing frame. We used this religiously in the beginning for at least an hour a day. It is supposed to be good for weight bearing. We still have it but don't use it anymore. It feels cruel to use it so we concentrate more on practical things to get her moving like taking her to the swimming pool or getting her outside and walking on uneven surfaces like grass.

We also have a walker which is also never used. When we first got it in the beginning it was a big achievement for her to get from the living room to our dining room for her dinner using the walker which is only a short distance but to us was a big achievement. She now walks it completely unaided.

My dd has piedro boots and afos. Afos are meant to be worn 4 - 6 hours a day and piedros the rest of the time. She does seem to walk better while wearing them they give her better control.

We have also had occupational therapy out to the house. We are trying to potty train and we don't have a downstairs toilet so we got a potty chair. We are also supposed to be getting rails for the stairs. My dd can walk both up and down the stairs but at the moment would need someone holding her hand for support.

When we first started out on this journey I didn't realise that progress would be so frustratingly slow. We have put in countless hours at physio along with the work we put in with her at home everyday. My dd does walk but it is far from being perfect but compared to were we started from she has come a long way and we will continue to put the work in with her.

Good luck and please feel free to ask if I can help at all.

Thanks Albaba - she really despises the stander unfortunately. I'm gonna have to get tough and persevere with it though. She doesnt have one at nursery and from January she will be there 3 days a week, so i might have to speak to physio about that.
She loves walking when we are holding her hands - so i do hope we get a walker soon, as i think she will love that.

We keep debating about getting an Upsee to help with the weight bearing - we may still do that.

Have you heard about the grants you can get to make adaptions to your house? Disabled Facilities Grant, they are called. Has anyone looked into these?

Also, as some of you have children that are a bit older - when did you apply for the mobility part of DLA?

Hi everyone. Back in June I posted about needing something like toe clips for my dd's bike, as she has trouble keeping her feet on the pedals.
[everyday] I think you asked for feedback, and just in case anyone else is interested, here it goes:
Since our physio also failed to source child sized toe clips, I decided to follow [bedsheets]' suggestion and got a pair of cheap crocs, which I attached with cable ties in four places, two on either side of each croc (I made the holes with a screw driver).
It works brilliantly!!! Her shoes sit in the doll's seat behind her saddle, and she can pedal to her heart's content without constantly having to re-adjust the position of her feet. She is also finally able to go all the way around with her feet, whereas before she would only ever push down with her left leg (which is her stronger one), then back pedal almost half a cycle until she could push down with her left foot again. She has gained loads of confidence on her bike, can do turns, can get herself unstuck when she's lost momentum and is now working on how to use the brakes. Once she can ride it really confidently and can brake, we'll probably take the crocs off again and see if her feet can cope better without support by then.

Oh, and I do also like the fact that while she is on her bike, no one can tell that she is getting extra support, so no unnecessary attention from other kids or adults

Ooops I obviously STILL haven't memorized which brackets to use when

Jokat Bedsheets - that is a brilliant idea! I wonder if it would work with my daughters Smart Trike....hmmmm
She is a bit too small to reach the pedals yet but by next year she should be able to.

Jokat really pleased the crocs was a winner. Your dd must be pleased as punch at her new found freedom x

hello everyone. My DS (2.4 yrs old) has just been diagnosed with CP and I feel crushed. He was born prematurely, at 30 weeks, and we thought we'd 'got away with it' as it was only until the last 10 months or so he was keeping up developmentally with his peers. Well it's now blatantly obvious that he's not 'just a late walker' - that there is something properly wrong. .

He's been having physio for the last 8 months, he has very low core strength which was causing problems for him sitting up from laying down, and also seems to be affecting his balance. He can now stand on his own for up to a minute but he has to really concentrate, I can't just put him down and expect him to stand, he needs to hold on to something before he can concentrate on standing independently. He has spastic diplegia - just in legs. He can walk, if the temptation is right and he's in the right mood, but no more than 8/10 steps and he is very very unstable.

We live up two flights of stairs and the constant lifting and carrying has made an old back injury of mine flare up so am in pain.

I am feeling very woe-is-me and can't seem to snap out of it. He was only diagnosed on Friday so it's still settling in. To be honest we thought he had it anyway so I wasn't expecting an official diagnosis to floor me quite so much. They have ordered him a kaye walker and he has an appointment with the gait clinic and the orthopaedic team. Our NHS physio shut over the summer so we'd been having a private physio, which we'll keep on even though the NHS sessions have started again.

I have read some of everyone's posts here and strongly relate to the 'this wasn't how we planned it' comments. This is not how I wanted my family to be. DS is our only child, we were planning on TTC soon but now we've had this diagnosis I feel scared. I was given no reason for his early arrival, and what has become apparent as brain damage. I think I need some answers.

I feel so sad for him, not being able to keep up with his friends and I feel guilty for feeling sorry for myself, too. Feel like shit. Has anyone found any support groups or anything? I am in London but don't really know where to start.