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

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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 all. The 'why can't i walk' question is on our ds' mind too. So far I'm trying simple explanations about tight muscles and messages getting lost/confused between his head and legs. He seems happy with that for now.
Unlike some of you I think I'm getting to the stage I want to push for getting a wheelchair. Ds can't walk at all, but could self propel a wheelchair,so it would give him much more freedom. A swifty buggy is just seeming wrong for him at 5 especially as he knows he can move his stander which has wheelchair type wheels.
Lovely to hear little whereonthestair is enjoying cycling! We have a local group that will loan adapted trikes for day trips etc. I can't wait for ds to learn to corner slowly so he doesn't tip the trike over and then it'll be time for his daddy to chase him along the seafront!

Thanks babs that's reassuring. I will start letting the relevant people know We are in London too and moving to just outside, so I was hoping to keep her under our big London Hospital for the less frequent clinics and seeing if we can do physio/child development locally, will see if that is possible.

holiday you say your little one can't walk, mine cannot either nor crawl, she has been given a Kaye walker (awaiting a hip support to make her safer) but getting her competent with that is Not going to happen overnight, can I ask, what your DC used or was given to help with mobility at nursery/pre school. Dd is starting to miss out now the weather is turning brighter at exploring the nursery gardens??

I saw the firefly scoot and thought that might be useful??

Hi everyone,

Hope you are all ok. Just a quick update.
Chloe is doing ok. She's 2.5 but still not able to stand or walk. She went through a period recently of not wanting to stand at a table/bench - but she would happily go in her stander. I'm not sure if its a growth spurt or she has just lost her confidence.
We are awaiting a stander for nursery as she is there 3 days a week. At home we have the Leckey Totstander, but it has no wheels/tray or bowl so probably wouldnt be suitable to have the same at nursery.
If anyone have any ideas on what would be suitable, i'll be grateful as i may look at getting a second hand one for nursery as the wait from OT will be long.

We are getting a TomCat Tiger Trike for her and have been lucky enough to get funding from a local charity, so she should receive it mid-May. I'm hoping this will help to strengthen her legs during the summer.

Summerdays - we have the Firefly Scoot. It is amazing. I had hoped to take it into nursery so Chloe could use it in the garden, but its far too heavy to carry or put on the buggy. She is reluctant to use it at home at the moment as she finds she can crawl faster :-(

She is going up to the next room soon in nursery and i am worried she is going to be left behind or get squashed as she only crawls. She has a walker at home, but like you said - its a long and hard journey to get her competent enough to use it at nursery/shops etc

Speech is still delayed at the moment too. She was on track until about 2 years old, but its very slow getting new words. She babbles constantly though and chats away to herself and even sings. I just cant understand 80% of it! I'm hoping it comes with time, fingers crossed. She is under SaLT - they have been observing her play.

Thanks redfox was going to avoid the scoot in the hope that she would be more mobile on her feet but I think this might be the interim option for the time being.

Keep positive with regards to your dd's speech, your little girl sound very similar to my dd at that age, if not a lot more advanced than mine and today at 3 yrs my dd is talking in a way I never would have thought possible, she constantly repeats words back and her vocabulary is expanding by the day. She is still delayed compare to her peers and pronunciation is sometimes a bit off but improving over time and she forming sentences and even starting to relay little stories. Keep positive.

Hi Red. Our OT got us this standing frame for DD2. We moved n sickly from it to a Kaye Walker. www.quest88.com/therapy-mobility/upi-multi-standing-frame/

sorry typo there - 'We moved on quickly'

Summerday I was avoiding the Scoot for the same reason - but we went to the "Kidz in the Middle" exhibition we tried it out and was amazed how she knew what to do straight away! If you are on Facebook or WhatApps, then PM me and i can send you a video if you like.

Thankyou for the advice regarding speech, it feels like its taking forever! I just want her to say a sentence to us rather than "door" or "baby".
She usually says "Uh Oh" but yesterday she said "Oh No" for the first time. Couldnt get her to repeat it though!

Everyday - thankyou - i'll look at that stander, looks ideal.

Hi summer and red, the firefly scoot looks great and I would have loved to try DS in one when he was smaller. DS uses a Todd stander at school and a similar one called a rabbit from r82 at home. These standers have the advantage that he is up at the level of his friends so can interact properly with them. There is also some research that suggests it's better for hip and bone development if a child moves in a stander rather than the more usual static standers. DS doesn't use a walking frame yet as his legs cross too much to get any forward motion. The Todd stander can be used outside so he uses it sometimes at playtime and it also has a tray for drawing or whatever play. The school rave about how much it's improved his independence. Other than that he has an r82 high low chair at school that is usefull for work at tables but I don't like him in that for too long as he cant move in it. His other alternative for getting around is just crawling. I'm constantly amazed he doesn't get squashed by other kids running around the class, but they're great at avoiding him and a band of them tend to be looking out for him. Adults are more likely to trip over him!
I hope everyone else is well and has had a lovely sunny week like us.

Sorry for another post! Summer, have you tried dd on a u scooter by rompa. DS used one as support in the crawling position and it helped massively getting him crawling. He still loves using it to spin around like a mad thing and slide in a superman pose - it's great seeing him have so much fun moving and getting good exercise.

Thanks holiday. I will google the u scooter and the standers you suggest. I have kind of given up on dd crawling. She can get herself from sitting into the 4 point crawling position and even rock back and forth and maintain it whilst stationary, but as soon as she attempts to move forward, she falls flat and ends up pulling herself along the floor flat. Can I ask how old your lo was when he mastered crawling?

On a positive, Dd is getting much stronger/stable standing with her Kaye walker, but stepping is still hard work for her and the more excited she gets, the more her legs cross. So it's very much work in progress... Will remain positive.

The boards been a bit quiet late,y, hope everyone is okay

Hi Summer. Our DD2 walked before she crawled. She found standing supported easier, and this gradually led onto cruising. It was some months later that she started 4 point crawling. This happened between 24-36 months for us.

Hi summer, don't give up hope on crawling, it sounds like she's very nearly there! DS was similar, he could commando crawl for ages, and then just rocked in 4 point position. The u scooter finally gave that little bit of support to increase strength, confidence and finally realise higher was fun. He was just over 3 and a half when he crawled without it. Milestones are precious in our house because they take so very, very long to achieve.

Happy days! The Tomcat trike arrived today . I have one happy DD.

Yay!!!! How is she getting on with it??

Tomcat trike is a huge success!! My thighs, on the other hand, are aching! She's cycled it to school and all sorts and wants to be out on it all the time. It's a great bike, and we're very pleased.

Hi everyone. Just checking in to see how everyone is doing? Thread seems to have quietened down recently.

My dd is now 3.5 and is for going to preschool in September with a statement which is currently work in progress. The nursery were she and her twin go to at present has a preschool unit attached to it. We felt it would be fairer to keep my dd there as she knows the staff, the layout and presumably a lot of the children who are in nursery will transfer to the preschool section. I don't know if it is a cp issue but she doesn't seem to like change to her routine or going places which are unfamiliar?

I read a lot on the internet about cp in particular multiples with cp and I know things could be a lot worse but everyone we know seems to be able to produce nice normal healthy children and I couldn't. Sometimes it gets you down that something which we never expected has completely changed our lives.

My dd is an independent walker which I am grateful for. We have put in so much work with her to get her to were she is now ,independently and through NHS physio which we have now been going to for two years and to think when we first started it would be a solution to all our problems. How naïve was I?

Apparently her main issues are she needs to build up strength and control. Will this come with time or is this is good as it going to get? Spasticity is not an issue with her. She has valgus feet though which roll inwards which I think hold her back. She has both piedro boots and afos. Although she can walk independently she couldn't do big distances and her balance isn't great. For example at nursery another child bumped in to her by accident and because she wasn't expecting it she fell and has a big bump on her forehead. She is a GMFCS Level 2.

I think it is getting harder as she gets older. I hoped by age 3 it wouldn't be obviously noticeable but it is. It's hard when all the other children seem so much more advanced than she is and she can't fully join in with things. I know in preschool they take them out on daytrips and I worry about how she will be able to cope with this. I think with her being a twin and having a direct comparison is so hard. It was the other twin we were worried about all throughout my pregnancy and if anyone would have any problems it would be her but she is completely normal and healthy.

Any words of help or advice? Thanks Albaba.

I hope you're feeling better today albaba. I hope your dd continues to improve. If she's mobile now then that is a good start. From what I've researched, a lot of function really relies on trunk strength. Every time she walks or swims or horse rides trunk strength gets better. Comparing with other kids is always so hard. Try watching her on her own when she's doing something she loves and try to see all the things she can do - she is so much more like all other kids than she is different (she wants more cake, more toys, more tv, more mess and no bedtime!).
I was worried about school trips with ds, but after a few teething issues with getting him safely on a coach they take him everywhere now. Will dd have 1-1 help? If so trips should be no problem.

Hi Everyday. The trike sounds great for both you and dd! Ds borrows one sometimes and although he loves it he tends to turn too fast and it tips over. Does dd do this or is it just a boy thing going too fast? Next time we're at the center they're going to try adapting a go cart for him which they insist he won't be able to tip over!

Hi Holidaybound. I echo your comments to Albaba. Hope you see a lot more successes than difficulties soon Albaba xx

Our trike doesn't tip, I'm holding the control handle at the back. DD2 can do short stints of fast pedalling (light jog for me), but cannot sustain it, so probably doesn't get enough momentum to tip it over.

The physio saw the bike at school and she's really pleased with it. An excellent addition to our physio for building strength in DD2 thighs :) So it was worth it :)

The Go-cart sounds great fun! He's a lucky boy! Hope the adaptions work - enjoy! x

Hi everyone

Just wanted to pop in and say hi. Albaba so much of what you said resonates with me. Hope you're feeling more positive today. I loved what Holiday said about watching her on her own doing what she loves, try not to compare although I know this is virtually impossible.

Lots of change for us. We've moved, DS is at a new nursery who seem really supportive and he really enjoys it there. Much more than with his old childminder.

Also I am pregnant again, only 10 ish weeks so no scan yet but having to try and think positively, that chances are I'll have a nice normal term birth. But can't help worrying. Also concerned about the impact it'll have on DS, he is gradually improving with walking but will only walk very short distances with his afos on. I am not sure how I'm going to manage physically with him and either heavily pregnant (fingers crossed) or a newborn/small baby. I probably carry him too much at the moment as cajoling him anywhere takes forever but I need to stop this and make him more mobile.

Have a cervical stitch booked in 2 weeks time which I'm worrying about but hopefully it'll help me get further than 30 weeks like with DS. I know any health problems can happen even with a term birth but I feel if I can avoid another prem birth, the odds will be on our side.

Sorry for the 'me me me' post. Now this thread will be on my threads I'm on again so will make more effort to keep up and join in

Hi Babs Congratulations on your little bean! . How exciting for you guys! Lots of rest and taking care of yourself now whenever you can x

Glad the nursery is working out for your DS. Have you thought of a referral to wheelchair services - they offered us a choice between a wheelchair or a SN buggy. Our DD can walk but tires quickly and needed lots of cajoling. Sounds a lot like your DS; she just got so heavy to carry. We rarely use the wheelchair, but it's there in the car if we're on a family day out, or going into town for shopping. She manages at school fine without it, so you can apply for one even if its just for occasional use.

lately I have having dreams about dd. In 2 of my dreams she had been able to talk in one she has been able to walk and was running around and playing. It kills me inside when I wake up and it's not real. The dreams make the reality seem even worse. I am trying not to lose hope but I feel sad about her lack of progress almost every day.
I don't know what to do
babies who are younger than her are starting to hit their milestones and are starting to refer to dd (nearly 3y) as "baby"

So sorry goneHaywire. Those dreams seem particularly cruel. Am not good with words but you're not alone in feeling sad your child is getting 'overtaken' by younger children, whatever small comfort there is in that. She will be making progress in her own way though - if it's not physical progress she will be processing things and learning something else. Please don't be too disheartened. How old is she now? 2? Lots of time .

Thank you babs.

she'll be 3 next week.... on learning this my friend's daughter said "she can't be the same age as me! she can't talk! " at which point I had to try and explain to her why even thought they're almost the same age they are so different.