I have spastic diplegia affecting both legs though I am still walking with a wheelchair I use on the really bad days.

As well as a number of other symptons supposedly associated with ageing and cp I have found that one knee wothout warning will become very unstable or swell up or feel like it is going in and out of spasm or sometime all 3 together. I've tried tubigrip for extra support but it doesn't always help.

does anyone else have this problem or any advice apart from the very unhelpful advice I was given recently of maybe I am trying to be too independent and prehapes I should call it a day and look at residential care

I don't have any personal experience but have you tried using one of the neoprene-type supports used to treat sports injuries? It would offer more support than just tubigrip, but it might be too restrictive. As you say, your other piece of advice doesn't sound very helpful

thanks for the advice i may try that instead. Oh the joys of getting old!! I wouldn't mind but I'm only 30!!!

Hi Panther
If an able bodied persons knee started doing that, I dont think they would be treated like you describe. They'd be referred to a physio, assesssed and treated hopefully. I think you should complain, there might be something "normal" wrong with your knee that can be treated (if that makes sense). Doctors don't seem to get that just because you have a disability doesn't mean everything that happens is because of that disability. And since when was it wrong to work hard and achieve stuff in life - other people make themselves ill by overwork, they get treated for their health problems and given advice about stress management etc, they don't get told to consider residential care. OOOH it makes me angry!
End of rant. I don't know how helpful that was to you, but it made me feel better! ;)
astra

Hi Astra

You certainly made me simle nice to meet such a like minded person, my G.P is one of the better ones and has already checked everything out. And he is very quick to remind that just because I have cp doesn't mean other things can't go wrong too. He is also very quick at making me recognise when I'm over doing it and will sign me off work with fatigue on a fairly regular basis and won't take any arguement from me!!

He has now refered me to a psychologist to see if that helps with all the emtional stuff.

The residential care coment didn't come from him if you would like to chat privately email me and I'll tell you.

don't you even think about going into residental care!!! life is more important than that even if you find jobs to do around the home, [they always need doing] or you could even do something volentary it helps you and other peolpe.

there is nothing like your own space even if its two rooms or three in my case i would never go back to my mums as i love my little flat and the space.

my cp somedays is ok but other days i don't know what to do and i have to lay down and i do not like giving in and most days i don't but suffer the day after which is not fun and i hate being in pain but that is life so i am told but i don't like it when people say that either.

well i hope some of this helps.

jazz13

Thanks Jazz13

For your very adament advice of not going in to residential care. I don't plan to do that it was just an example of some of the bad advice I sometimes get given which is no help at all.

Like you my cp can be very painful at times and it does get me down and make me really tired. But I guess we just have to accept and learn to live with it.

And in the meantime try and keep smiling

Take care love panther

I FEEL AS IF I REALLY SHOULD NOT POST ON HERE AS ALL THE CHILDREN SEEM TO BE QUITE BAD WITH CP, AS MY DAUGHTER WAS DIAGNOSED WITH MILD CP AT THE AGE OF 2 ( IT TOOK TWO YEARS OF FIGHTING TO PROVE SOMETHING WAS WRONG) BASICALLY MY DAUGHTER WEARS A SPLINT ON LEFT LEG AND LEFT ARM AND HER LEFT SHOE IS RAISED. TO LOOK AT SHE LOOKS TOTALLY " NORMAL" WHAT EVER THAT MEANS! SINCE BIRTH SHE HAS BEEN DEEMED AS A FUSSY EATER! WHICH I DONT AGREE WITH! SHE NEVER TOOK TO HER BABY MILK DRIBBLES ALOT, SHE IS NOW 6YRS OLD WHEN SHE WAS 1YEAR OLD SHE HAD A SICKNESS BUG WHICH RESULTED IN HER REFUSING MOST FOODS SHE ONLY ATE SAUSAGES AND YORKSHIRE PUDDINGS THAT WAS IT THEN WHEN SHE WAS 5 SHE HAD ANOTHER SICKNESS BUG WHICH RESULTED IN HER REFUSING ALL FOOD FOR A MONTH WHICH RESULTED IN HER BEING SENT TO HOSPITAL( SAD THING IS THAT IT TOOK THIS TO HAPPEN BEFORE THEY REALISED SHE HAD A PROBLEM). THEY DISCHARGED HER AND PUT HER ON MAXIJUL TO PUT CALORIES BACK ON HER AFTER ANOTHER TWO WEEKS SHE STARTED TO EAT WALKERS C/O CRISPS AND HAS ONLY EATEN THIS EVER SINCE, BASICALLY I NEED TO KNOW IF THIS IS NORMAL BEHAVIOUR AND IF IT WILL IMPROVE? I HAVE BEEN TOLD ITS MY FAULT AS I WORRY TO MUCH! WHICH I AM FED UP OF HEARING THEY SAY SHE WILL EAT IF HUNGRY YET SHE HAS PROVED THAT IS NOT THE CASE!SHE HAS SPEECH PROBS AND HARDLY SLEEPS! HELP PLZ

Hi

My daughter is nearly 5 and also has mild cp and i understand what you mean about other posts being about more severe cp , however cp varies so much from person to person that nobody with cp is typical anyway so keep posting!
Your daughters eating doesn't seem normal to me although i am no expert, you just have to trust your mothers instincts. My daughter also has speech problems and because of the difficulty in speaking this has also caused her difficulty eating at times, she gets tired if she has to chew too much, takes forever to get through a meal and we still have to be careful to watch what she eats and her posture at the table as some food could make her choke. I am wondering if the speech problems and the eating problems are connected in your daughter because the same muscles in her mouth are involved. The other thought is that it's psychological and if there is a problem communicating she might not be able to share her fears.
My daughter has had feeding assessments in the past both via her speech therapist and Bobath where they can watch how she eats and moves the food around her mouth. It might be worth a try to at least rule out any physical problems, perhaps she only eats the food she feels confortable managing.
Anyway this is a lot of speculation on my part and i hope you get to the bottom of it.

Debbie

This is not your fault, i was told exactly the same 'don't pressure your daughter to eat she will do this when she is hungry'.
Unfortunatley this was not the case, it resulted in my daughter having to have a mic-key button, this was to put in the nutriants she needed and put on an over night feed.
I decided to make a programme for my daughter and i drew pictures of food on paper plates containing vitamins, protien and carbs ect then i would let her choose which meal she wanted to TRY. I had a reward chart and she got a sticker for each different bit she had tried. MY daughter would only eat spaghetti hoops. Now she eats lots of different foods. My daughter still has the button for medication but no food goes down what so ever now, this has taken about 3.5yrs to do.
You know your child best, Don't ever think that it is your fault, keep going back, ask for a refferal to a speech therapist they can help with the eating side as well as the talking.
My daughter still wakes between 4-5 times a night and when she is ill forget sleep, but believe me this will get better, this is half as many time as in the beginning.

hi there i have mild cp down my left side and i have to wear a day splint and night splint on my leg anyway i have had a problem eating never since last april and my mam and dad were worried so was my uncle malcolm and aunty sharon because in the 7 weeks hoilday i didn't eat alot what so ever i would only have a sandwich a day and this kept me going i love my sleep don't get me wrong but sometimes i wake up and can't get back to sleep hope this helps

jodie

HI Thanks ever so much for replying it was lovely to read what you all put, you are all right as i know i am its just very hard convincing the so called medical experts! We have been to the croft centre in Cambridge for the last 5 weeks as a resident programme, they wanted to do a test to see if this was a phsical problem but after speaking to people back home they decided not! As charlotte is very quite and id say very convincing she nibbles on food whenever one of the staff walks in but spits it out when they have gone, I get the impression that she will go out of her way to please the staff knowing full well that after 6 weeks she will be home again, she is the same when she sees her physio she cries alot as her leg hurts but when physio asks about it she says shes fine, so basically they are all saying she is playing me up over all subjects! maybe she is sometimes but not all the time, the croft centre says she is doing really well as she nibbles food, in 5 weeks i would say she has digested all together 1 bowl of coco pops and 4 sausages maybe its me but that dont seem alot for a 6 year old, the worst part of it is is that she has not lost no more weight! cant figure that at all. As they say she looks fine, i dont know sometimes you just wanna scream..............
thanks again to everyone
hope things work out better for all of us soon
take care
debbie

I have a daughter who is 22 months old who was diagnoses at 8 months with severe quadrapligic cp. I had no problems at birth i was told i'd concieved her like that they said two parts of her brain that controls movement had'nt developed and that she will be severley affected. he also said by looking at the scan pictures she wont beable to walk well me and hubby came out of the room in tears how could he predict what she can or can't do why could'nt he say wait untill she gets older i know they have to tell you the worse. My daughter has very little head control can't sit up or roll but she has the most beautiful smile. is there anyone who the doctor said they wont beable to walk and can now walk i am worrying sick about the future I love on to bits and wont change her for the world but if only she could hold her head up on her own. She also has visual impairment and epilepsy and has poor feedding hope anyone can help.

My little boy is nearly 4 and cannot walk. I don't think he will ever walk, but it doesn't bother me because he is a very smart and happy child who will do very well in his powered wheelchair when he gets one in September. There are more important things to achieve in life than walking. Sounds strange, because we take it for granted, but that is the reality. Communication and being able to use your hands to gain some form of independence, whether it's eating for yourself or being able to turn the pages of a book, are far more important. It's important to focus on the problems at hand now rather than the problems your child might face in the future. It's not humanely possible to do everything at the same time and children need to work on things one step at the time. If your daughter has poor head control, that's something you can concentrate on for the moment because you need good control to be able to walk. You need to set some realistic short term goals, then you will reap the rewards and be able to set some new goals. Who knows what the future might bring. Everybody thought my little boy would be able to walk, but they were all wrong. It works the other way too.

[quote name='angeleye' date='Jun 26 2006, 10:25 PM' post='5360']
I have a daughter who is 22 months old who was diagnoses at 8 months with severe quadrapligic cp. I had no problems at birth i was told i'd concieved her like that they said two parts of her brain that controls movement had'nt developed and that she will be severley affected. he also said by looking at the scan pictures she wont beable to walk well me and hubby came out of the room in tears how could he predict what she can or can't do why could'nt he say wait untill she gets older i know they have to tell you the worse. My daughter has very little head control can't sit up or roll but she has the most beautiful smile. is there anyone who the doctor said they wont beable to walk and can now walk i am worrying sick about the future I love on to bits and wont change her for the world but if only she could hold her head up on her own. She also has visual impairment and epilepsy and has poor feedding hope anyone can help.
[/quote]

Hello Honey,

I know this has hit you hard and you probably still cant get your head round the news (which might not be a completely true situation). To be honest hun its not great to tell you like that, i personally feel it takes alot to get your head around most things to do with CP. When Reece was diagnosed with Quadleplegic CP I asked the consultant on our 2nd visit after diagnosis if he would walk...she said that a large percentage dont..by that i took it as a NO! the reality of it is nobody really knows for a great deal of time...this is a long road with many twists and turns.

I am sorry I cant give you a 'happy walking story' but my little boys is taking steps within conductive education sessions on a frame. He may not every walk but if he doesnt i should think i will be used to it and so will he. He couldnt roll until he was 2 (he has quadleplegic CP), he can only sit when put into position and scramble crawl..

So stay positive in terms of what you do with your little girl, try not to think negative...over time the situation will get easier to deal with (she might or she might not...you wont really know for a good few years and by that time your fears may have disappeared)

Take care and dont get down xxx

I wish i could tell you they were wrong and it will all work out fine but you just never know.what i do know is the doctor ALWAYS give worst case scenario's.i have loads of stories of premature babies who were not supposed to make it and are here to tell the tale.just try to stay positive and enjoy every moment with your daughter without worrying about the future too much...you can drive yourself crazy.none of us know what the future holds for our kids but stressing ourselves silly will not change the path that has been chosen,which is what i believe.
i have made a website for my daughter Siobhan whom doctors couldn't tell me whether she would walk or not althought they were optimistic.the address www.freewebs.com/siobhantanya .there are link to other miracle kids on there too.
hope you feel a bit better soon and please feel free to talk about whatever is bothering you on the forum, i promise we will try to help as much as possible.
lots of love
evelynxoxo

Hi nevaeh,

I had the procedure to lenghten and release my hamstrings in 1992 when i was younger I am 27 now. As far as a can remember the operation on my hamstrings was designed to improve my mobility and functon that was effected the increased muscle tone, due to tightness. I found that the operation helped my walking and increased my range of movement making it easier to do things like free standing without sticks or stretching my legs,for example as before the opp this was a struggle. You will find that your son my have a lot of physio to maximise the benefit of the operation.

I cannot offer any advice regarding the hip loosening procedure as i never had it done.

It appears that you have some un answered questions that i suggest you ask your sons specalist because you are entitled to ask as many questions as you wish to get the reassurance you need abot the operations proposed.

Andrew

hi im new to this so i hope i get it right my son is ten and has excuse my spelling spasisity in both his legs although it is his right leg that is worse.In a few weeks he is having surgery to release tensoin and tightness in his legs and i would love to know if anyone can tell me the benefits of this also next year he has to have his hips loosen and im worried about this as i dont really understand what this is for if anyone can help it will be appriciated

my son has had his op and has casts on both legs and boy i can see the improvement he can stand better straighten his legs and can walk better with his kaye walker its such an improvement hopefully wont need to have his pelvis pulled back