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My two year old has cerebral palsy and will have walking problems

dean656dean656 Member Posts: 6
Hi all. Just signed up today. Looking for some help/support with my son. He is two. Was born 28 weeks and suffered brain damage. Has cerebral palsy (mild) but will have problems with walking. Can anyone help with anything. Nhs are so slow and I'm really worried for him. Not sure what to do for him. Any advice would be really appreciated. 
Thanks 

Replies

  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Dean, My daughter is also two and has CP. You did not say if your son has started physiotherapy yet. I say this because with CP the earlier they start physio the better, I cannot stress how important it is to get him started with physio. If he has not yet started then I would advise you get a G.P. appointment asap and have him referred and get your Health Visitor on the case to try push the referral through as it does take a while even when the referral has been made, the waiting lists do depend on the area you live in. Also ask for a referral to a Community Consultant Paediatrician because they know much more about C.P. than your G.P. and you will need reports from them in the future for most things housing/schooling ect. and a report from them carry much more weight than from a G.P.
    Your son has the right to all these things but don't wait for them to offer, unfortunately you do have to fight for everything. Some areas you have to fight more than others but it is always a fight.
    In the meantime try taking him swimming, my daughter does not weight bare at all and rarely moves her legs but when she is in the pool she kicks like mad and moves her legs more in 20 mins swimming than she would in a whole year otherwise. I do have to be careful which pool I take her to because if the water is cold she just ceases up and her whole body is in a permenant spasm and she can't move at all, the warmer the water the better.
    Also in Manchester the Donkey Sanctuary run assisted therapy sessions for children with additional needs. It is technically free they just ask for a contribution if you have it, the sessions are 20mins long which is long enough especially for two yearolds. This is great for improving balance and trunk/leg strength. Maybe there is a scheme like this in your area.
    I hope you get some help/therapy for your son soon and if I can advise/support you with anything else please just ask. This is a great community to be a part of as everyone is so kind and helpful.
                         Good luck Zeezee

  • dean656dean656 Member Posts: 6
    Hi zeezee. 
    Thanks for your response. 
    Yes we have started physio. We do all the stretches and excersis every day. He does swimming to. Still waiting on his splints to be sorted. Docs have said about surgery and Botox in the future. Think we're doing all we can at the mo. Just thought I'd see if anyone knew of anything else that could be done.  Reading your reply though had made me realise we are doing as much as can do for him. How is your daughter getting on with standing and pulling her self up 
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Dean
    It does sound like you are doing everything you can, and you have to be careful not to over do it and turn the excercises into a chore, finding that balance between keeping the excercises fun and wanting to do more in the hope that your son will walk quicker is really hard. You could look into hydrotherapy but I was told to wait until Ziyal has been using her splints for a while first. She got her splints a week and half ago so is still getting used to them but already she is happier to be on her feet than before the splints so hopefully I will be able to get her upright soon. She does use a standing frame and loves it. Also Ziyal did used to stand while I held her but she had a growth spurt and her feet started turning inwards and she wouldn't put her heels down no matter how much physio I did, that was why she now has splints, so hopefully she will be more comfortable standing now because her legs are very strong and with the splints addressing her foot position I am hoping she will progress quickly now and the early signs are really good in just a week and half she has started allowing me to put her on her feet for a few seconds at a time. fingers crossed eh!
    Where is your son up to? does he stand or pull himself up and is he sitting or crawling yet?
  • Katie_GKatie_G Member Posts: 14
    Hi Both,

    My son is almost 2. He has CP and he cant weight bare i do all the same stuff as you guys but what are these splints and can you're children sit up by themself? 

    My son cant sit or crawl, walk. Sittin is getting stronger because of physio and swimming but we seem to just be carrying on until his next MRI scan on the 25th. Both of your stories seem like you have alot more going on than me. Any advice? 
  • dean656dean656 Member Posts: 6
    Morning zeezee
    My son Stan sounds very similar in his progression to your daughter.  He sits up on his own and is constantly pulling him self up on anything he can. He's been crawling for a while now. His left leg doesn't bend though as he is crawling so he looks like a wounded soldier bless him as he getting around the floor. Doesn't stop him though he's very determined. I know what u mean about over doing all the excersis. It does feel like it takes over at times. Stan likes his  standing frame for about 10 minutes. He also did a 6 week hydrotherapy with the nhs. Seemed to help and we are going to look at more. How do u get on with fitting it all in. Stans Mum does most of it as I'm working but I do feel for her having to get out to all this classes , appointments every week.  
  • dean656dean656 Member Posts: 6
    Morning Katie. 
    What really helped Stan with sitting up was  corner chair lent to us from his clinic. He would sit in this for 10-15 minutes 3 times a day. It helped strengthen and keep his spine straight as before this his spine was still curved like a babies is when there born. We are still waiting on his splints to be delivered though but I'm pleased to hear how well zeezee s daughter is doing with them already. U said your waiting on the next MRI scan.  How did it all go for u. As we decided not to go ahead with it for Stan. We spoke about our concerns about the scan with our doctor and he said nothing would change in care for Stan even if the scan showed further damage. So we decided not to have it at this time. 

  • Katie_GKatie_G Member Posts: 14
    Hi Dean,

    Thank you ever so much for getting back to me. Joshua needs to have his MRI to check if his 2 cysts r still the same size and to check the myelination. Has your little one got low myelin and do you think its effected him in anyway?  We have a corner chair which we got off a private physio and josh seems to lean forward alot in it. He also has a standing frame which keeps him quiet and he enjoys being in that. Im just finding it all hard still and being a working mum then i go home and its physio that i do with him or we do messy play etc most days its his care team that are here like SISS, Speach and language and Physiotherapist. 

    What are the splints? Sorry to sound a bit dumb but i havent been told about these. I always do my best but anything that i know will help him im willing to try.

    Stan sounds like a determined little boy its sounds amazing what his achieved to do so far. You and your partner must feel over the moon about his progression. Zeezee

    Thank you for gettin back to me. 
    Katie
  • dean656dean656 Member Posts: 6
    Hi Katie. 
    Sounds like we're at the same point care wise then. Which is reassuring as I was worried because I didn't know wether Stan was getting as much as he could. Which is why I came on this forum to speak to parents in the same situation. Regarding the splints. We were advised at first that Stan would need half leg splints that he could wear under clothes for a few hours a day that would help with controlling his feet from Turning inwards and keep his toes from curling. We
    then got informed that there is a splint that will insert in stans shoes which can be used all the time. Sounds great but been a **** up with the clinic and docs not talking so we've been held up with getting them. On their way soon though hopefully. I don't know about myelin so I couldn't help u about that. 
    We know how u feel about working and trying to do everything were "supposed" 
    to do. Stans mum only works 2 days a week at the mo. We just found it all impossible to do otherwise. How is Joshua in himself. Stans a really happy boy most of the time. Surprisingly really as how hard it is to do normal things for  a baby his age.
    sorry I didn't mean to be funny about the MRI earlier I just presumed it was the same for what Stan was having. Not to up together on all this. Thanks for getting back to me. 
  • Katie_GKatie_G Member Posts: 14
    Hey Dean! 

    Its okay its sometimes a bit daunting talking about scans as i think they are awful specially giving them the medication to send them to sleep i cry my eyes out. Lol then tell myself off and take deep breaths. Joshua is a right character he knows wot he wants and its really weird because i can stand him up and hold him under his arms and say okay josh what do u want to do he can walk towards the toys or his inflatable chair and want to jump on it. Its his upper body where there doesnt seem to be any strength. I am working on his mid-line which his getting brilliant at and his putting stuff towards his mouth but leans his head more towards things. His condition really baffells me sitting him on the edge of my knee he sits up straight wen i hold his hips but again he then flops forward after a bit. I dont have any definate answers only working on CP as they dont know what else to call it. Thats my frustration with the paediatrician he stutters alot because he cant answer my questions purely because he doesnt know. 

    The splints sound brilliant! I hope they help Stan and bring him on a little more. His come such a long way in a short amount of time by the sounds of it so his one determined little man. You and your partner must be proud of yourselves. Your story has actually inspired me to just keep questioning ..maybe josh needs somethin for his core.. Is there somethin he could possibly wear to help!

    It is impossible working then fitting everything in but somehow it works we get on with it and to be honest i couldnt be happier aslong as Josh is happy. Just wish he could sit up thats all id like so he can see that the world is alot different when u sit up straight that alone will help him develop more and interact better. His time will come  :-)

    I wish you and your family all the best and thank you sooo.. much for contacting me. Ive appreciated you're time. 

    Many Thanks
    Katie 

  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Katie
    Sorry I am just getting back to you have had a hectic day, (I am not sure there is any other kind lol). It does sound like your little boy is very similar to Ziyal and Stan. As for the splints they are foot and half leg splints, Ziyal's feet turn inwards and her toes curl under when she is standing which makes it uncomfortable for her to stand in her frame. They keep her feet in a position as though she is standing all the time to stretch her hamstrings because the physio excercises are not enough on their own. She has to keep them on for 8 hours a day once she is used to them properly. We are up to six hours at the moment.
    Ziyal cannot sit unaided but she has progressed so much recently, she does have the strength in her torso now but still cannot balance. She did have a corner chair for a while but it was to stretch her hamstrings and she was very restricted in it so hated it and her Goto seat provided the same stretching and is not as bulky so the physio took it back. The chair that helped Ziyal the most is a booster seat similar to a bumbo but for kids up to 4 years old when you take the foam insert out, and that has been better than any chair the physio has brought. She could only sit in it for short peroids at first but now she could sit in it for hours if I let her. It just supports the bottom of her back and because it is very low  on the floor I can put a toy box on each side of her and a little table in front of her and she can pick whatever toy she wants and use the table to either balance the toy or play with toy on it. The extra bit of support and balance it gives without restricting her movement is brilliant and she loves it. I think because it supports her lower back and waist but allows her to move and pick up toys and play properly she does not realise that she is excercising cos she is having fun. It also fastens to a dining chair and is portable so great for dinnertime at home and eating out, it even goes to the childminders with her.
    I hope everything goes well with Joshua's MRI he sounds amazing.
                                          Speak soon Zeezee x

  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Dean
    Well today has been a crazy one and I have not managed to fit everything in. The hospital appointments and physio is really taxing and I always feel guilty that I have not done enough but there are not enough hours in the day, so I know how your wife feels, it is really hard. I am a single parent aswell so I have not had a full nights sleep or a lie in since 22nd March 2014 lol. But on the upside I don't have to make time for, or cook/wash/clean up after a partner either so there are good and bad points if your single or with a partner.
    Its really nice to hear that Stan is so determined and is getting around so well he sounds like a real character. Ziyal is rolling all over and pulling her upper body up to drag things off her table when I am not looking but she is alittle bit lazy and will ask me to do things for her and is really stubborn, she will argue with me trying to make me do things I know she can do rather than do it herself and then laugh and say "I'm naughty" or "I'm cheeky". So to stop myself laughing and doing things for her I have had to start walking out of the room and leaving her to it to try to get her to do things for herself.
    Has Stan had his casting done for his splints yet? I hope he gets them soon as he sounds very much like Ziyal. She used to go in her standing frame in her Peidro boots for an hour everyday and used to cry when it was time to come out, but then she had a massive growth spurt and her hamstrings became impossibly tight and her feet turned inwards and her toes started curling under and she began crying in her frame and didn't want to go in it. Then as soon as she started wearing her splints she loves her frame again. I am conscious not to do too much too soon but she is back up to two half hour sessions a day in her frame and she does let me put her on her feet for a few seconds again. So hopefully when Stan's feet are in a more comfortable position he will enjoy his frame for longer periods of time, he sounds very determined so I think he will.
                            Take care and speak soon Zeezee x
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Katie
    I didn't see your last post before I replied to you for some reason it didn't come up. Anyway Joshua sounds EXACTLY like Ziyal was a few months ago. Down to the sitting up on the end of my knee then flopping down like someone had just cut her in half. It does sound like his core strength. Like I said in my last post the chair I got her worked wonders, I will find out what it is called (I can't remember now) but I did see one in Tesco last week so I know they still stock them its £40-£45 which is a bit steep for a chair but worth every penny. Also lying Joshua on his front encouraging him to lift his head and shoulders off the floor, this strengthens their core muscles, I also use an excercise ball and lie Ziyal on her front on it and the same as on the floor but I move her back and forth so she uses different core muscles. Also swimming is great, the same sort of thing keeping their heads/faces out of the water strengthens their core. even when he is on the end of your knee move your knees from side to side a little so he has to adjust his balance is another good excercise. I do the same side to side motion on the excercise ball with ziyal sat on it and bounce her too. All these helped Ziyal a huge amount and you can easily turn them all into games with silly songs and ziyal loves it. Her physio told me that all these head/shoulders lifting excercises and balancing all strengthen the core muscles and it is the core muscles which enable us to walk, so it is more important at the stage our kids are at to concentrate more on the core muscles than legs because once they can sit up, everything else will come a lot quicker.
    You sound a lot like me, completely desperate to get Joshua sitting up, I feel the same about Ziyal because once she can sit unaided the whole world will be a different place for her. She can now sit with a pillow behind her leaning against the sofa with a toy box on either side, not touching her but close so she can take the toys out and push herself back if she overbalances, or just inbetween my feet/legs with the sofa behind her but not actually touching it all the time and I just touch her a little when she starts to overbalance. I can't wait for the day when I can sit her in the middle of the floor give her a toy and just walk away, instead of messing with chairs, cushions and other support aids.
    I have real problems finding a comfortable chair for Ziyal, because she can sit forwards sometimes but has no sense of danger and when she has fallen before she doesn't have the co-ordination, speed or strength to put her hands out to protect herself, so I can't leave her on the sofa alone for a second cos she thinks it is hilarious trying to roll off and watch me diving across the living room to catch her. Because of this she needs a five point harness unless I can find a deep chair she can't dive out of. I have seen those P-Pod chairs which look great but there is no chance this decade I could afford one. I have thought about a beanbag but am not too sure. Do either you or Dean have any suggestions?
    I hope you and your little man get some answers from the Dr's soon, I had to nag, moan and harass to get a diagnosis for Ziyal. So you are right to keep questioning the Dr's because although Joshua's care may or may not change once you have a diagnosis, You need to know because it is easier to access the services he needs when you have a working diagnosis.
    I hope this info has helped and it is really nice to have found two parents with similar experiences, it will be great for us all to keep in touch.
    Take care Zeezee x
  • Katie_GKatie_G Member Posts: 14
    Hi Zeezee and Dean,

    Have you both used the family fund website http://www.familyfund.org.uk? I saw another post from a lady who said this grant helped her pay for alot of equipment and clothes she couldnt afford. I think u can only apply once every 12months from what i have read but please let me know if you have used it and found it useful.

    You can buy beanbag chairs with straps Joshua has a car shaped seat and it has a strap that goes inbetween his legs and around his waist i can pop him in it and know his safe.

    Joshua's new chair is made by the giraffe company its supports his head and gives him a great posture. Theres like a little waist coat he has to pop over him and it goes right down to the floor so we can play or as high as the kitchen side so he can see what im doing. Its very helpful and i got that through physio. We are just waiting on an adapted push chair now. Have any of you got one of those? Same goes for the car seat we have an assessment for a new car seat soon.

    Sorry i have posted so late ive had sucb a busy day and its be so got and tiring. I hope you both had a lovely day with your families. 

    BW
    Katie 
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Katie,
    I am just waiting to hear back from the Family Fund I applied for funding for a Scooot for Ziyal so hopefully she will get it. I did apply when zee was in NICU cos I was breastfeeding but had a c-section so had to get taxis everyday back and forth and they gave me £300 then. I think you can apply for up to £500 every 12 months.
    Ziyal got her Snappi buggy about 2 months ago and it is great she is so comfy in it. it is very heavy though and the accessories are very expensive but a lady on my local market gave me a sunhood from a pram which matched perfectly and a raincover and shopping basket, all for £7 so she saved me well over £100 which is close to what the raincover from the company costs, then when you give the buggy back you are stuck with the accessories.
    I did look at the beanbag chairs with the straps but it was online and I wasn't sure if they were just for young babies but I will look again. I am also going to ask the physio about the Giraffe chair you mentioned as that sounds perfect for Ziyal.
    I did have a lovely day today I went to the Monkey Forest in Stoke with some friends, Ziyal loved it.
    I hope you had a grat day today, speak soon Vicky x
  • dean656dean656 Member Posts: 6
    Hi zeezee and Katie. 
    Hope your both well. Sorry for the late reply. Been so hectic busy lately. Great to hear how well your son and daughter are getting on. So similar to Stan. I'm sure it won't be long till there sitting up. Stan was just the same then as he got stronger he got more confident he just started sitting up. Now he's a right little sod. Lol. How do u get on with physio. Our nhs one has been non existent of late. We do a private  session once a week for 2 hours through a private charity which only costs £22 but just wondered how much your kids got. Still waiting on the splints. His mum is gonna chase them up AGAIN tomorrow. 
    thanks again for your feedback. We will look into what u said. 

  • Katie_GKatie_G Member Posts: 14
    Hi Dean, 

    Our lives are full on now but its only for the best our little ones will be grateful when their older. 

    I have a small team that come out to Josh, physio is once ever 3weeks, Speach and language come out one a month, Siss team come out to do the learning development twice a month ready for school. I have a sleep lady that has been out with physio which is apart of a trial twice so far. Time goes that quickly it seems like the appointments are close. YES keep chasing up on those splints and tell them its unacceptable how long you having to wait and speak to a manager. I have always been really on it with equipment if they are slacking i just tell them i will get it myself luckily for me the company for Joshies stuff isnt too far. 

    I went to a private physio and she wanted £50 an hour. I couldnt afford it so complained to Joshies paediatrician and said i need more physio and she comes out now every 3 weeks instead of every 6weeks. I really cant wait too long im so inpatient. As soon as Joshua has his MRI scan on the 25 two weeks later im calling and chasing....honestly i must be a nightmare but i cant help it lol

    I do hope those splints arrive soon.

    Only question id like to ask both of you is how do you find buying toys and stuff. Because josh  
  • Katie_GKatie_G Member Posts: 14
    Sorry finger slipped on the post comment lol

    Because josh has the two cysts on the front of his brain aswell i dont know if its them thats playing with his coordination. He cant bring his hands central so its alot of midline work. His birthday is coming up and sometimes i could cry because i honestly do not know what to buy him.

    Id really like your thoughts and ideas. 

    Thank you
    Katie 
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Katie and Dean, I am really lucky with ziyals physiotherapist she comes every 3wks but will come more if Ziyal needs her and she always calls me straight back. My health visitor/GP and neonatologist are all worse than useless so it was Ziyals physio who did the referrals for audiologist, community paediatrician,eye hospital and anything ziyal has needed, she has even just got a scooot for ziyal from another clients mother so I have just phoned family fund cos I had applied for funding for one, all I have had to do is pay £80 for the extra trunk control belt, so I am running around like a madwoman now toddler proofing my house and making everywhere accessible to Ziyal. I have no doubt she will show me the house is not toddler proof once her little hands can reach everywhere. I can't wait for her to have some independence. Katie I don't know what to say about your little mans birthday I don't know how many times I have stood in toys r us in floods of tears cos they have nothing ziyal can play with, because she can scroll on the pics on my phone I tried her with a tablet cos it only takes one finger to use and with a table she can use it amazingly, my mum bought her a swing cos my dining room is huge but I can't get her into it cos her legs spasm when they touch the cradle. I have a spare bedroom full of useless toys. So I completely sympathize with you ziyals 2nd birthday was miserable for me. If the scooot would be suitable for Joshua maybe you could ask family/friends for firefly vouchers then put rest as its better to get him one expensive thing he will use and enjoy rather than lots of toys that depress you before getting thrown in a spare room. Take care x
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi Katie
    I can't believe I forgot to tell you about the best toy I have ever bought Ziyal last xmas, so she was 21mth old at the time. I got her a ballpool, but because she couldn't sit up I couldn't get her a conventional one so I got a square inflatable paddling pool and filled it with balls. Because it is square and inflatable the corners provide great support when sitting, also its only small so the base inflates too so its not hard for her to sit on, because ziyal has poor co-ordination and her right hand/arm is very weak so she struggles holding a toy and playing with it, i have to hold it while she plays with her left hand so when playing alone she just throws her toys and that is her game so the ballpool was fantastic for her. She has improved immensely since xmas but she still plays in her ballpool but for the first 6 months she was in it all the time. I also used a rubber mat at first to stop her slipping down while playing. When is Joshua two?
    speak soon x
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