Wheelchair (for my child) or not? Wheelchairs for kids

[Enigma]

Having had a long discussion with my daughters phisio today i have come away feeling like she has suddenly changed from simply a child with a condition to a disabled child. And the emotional effects have hit me harder than i expected.

We spoke at length about what Beth can and can not do, what happens when she tries to do too much and what i can do about it.
I expected to be met with disbelief or even dismissal about how little Beth can walk before her legs start giving out on her and she falls over constantly. Instead i was met with the one thing i do not want for my baby girl. The suggestion that, as Beth is now too big and too heavy (although not overweight for her height) for a pushchair the main option would be to use a wheelchair.
The phisio also agreed with my applying for DLA for Beth and also suggested having her registered as disabled so that the school could access what they will need to support her particuarly if formal lessons begin to cause problems with her hands and arms, also to look into alternatives for her toileting problems if we do not solve them before september. Also to start looking at the affects a full day at school will have on her when morning nursery leaves her shaking and exhausted.

Looking at a total view of how her 'abilities' will affect her at full time school and what she will need in place i can see why and the need for formal recognition of her condition. But for some reason i can't get over the thought that my happy little madam is disabled, and the ultimate sign to everyone out there, that she needs a wheelchair.
I don't know why this is affecting me so much, but it is.
Its my baby, and she should be up and running around and climbing and falling and she can't. While it was just me saying it i could live under the delusion that it was only temporary, that she would grow out of it. Now its real, and i have to accept that she is not going to be able to join in at school, in the playground. I am not going to stop her doing anything she thinks she can, but i know that it will impact her, and i just want to protect her from that. And i can't.
The question over the wheelchair is more about managing a new baby and a wheelchair, and also the implications of how people will react to her and the fact that she does not need it all the time. I know that when i stop being this over hormonal pregnant mess i will be able to think what to do, but for now its just too much.

[Retro]

Hi Enigma,

It is difficult to come to terms with having a child with problems (I have an Autistic son). Just give yourself time to get used to the idea, it won't feel awful forever.

As for the wheelchair suggestion, get in touch with an Occupational Therapist you may end up with a big pushchair instead of a wheelchair for now.

Take care,

Lindsey

[Alison C]

Hello

I will write later this week re help available at school.

Anyhow I thought I should write to say that the HMS Children Clinic team at Gt Ormond Street Hospital (GOSH) are really keen to promote no use of wheelchairs. Could your physio ring Sue Maillard, Specialist Physio in Rheumatology for advice? Sue has developed a fab exercise programme for children with HMS which does strengthen etc. Many of us here are able to get referrals to GOSH and are seen as outpts and sometimes inpts for physio.

IF you do need a wheelchair, the wheelchair services are used to supplying wheelchairs/buggies for childen and babies.

Will write more later.
Cheerio
Alison

[cazz]

I did a long reply last night but my stupid internet went down before it was submitted so here goes take two!

My 10 year old was unable to go out without a wheelchair for the best part of 2 years due to ME. We got one after trying to go to Chester Zoo only to have her in tears before getting out of the car park. We borrowed one there and realised what a difference it made, it gave her and us some freedom to get out of the house again. That too is a condition which you can't see, people often look well and others find it v hard to understand. Some people in the family made v awful remarks about her getting one but I took the view that it was best for my daughter at the time and I would do my best for her no matter what anyone else thought. I know totally how you feel though, many is the time that I would end up in tears just seeing her friends doing normal things like walking to school (as she has missed most of the last 4 years of school).

My daughter does also have HMS and had it prior to the ME. I have to say that you need to be careful not to become overreliant on a wheelchair if you do get one. Lauren had one for different reasons but the effect of being so inactive with the ME has been that she has lost out on 2 years opportunity to build up muscle which has meant that her HMS has become much worse and she is constantly dislocating all over on a daily basis. She is just starting more intensive physio to build up her muscle tone to try to stop the frequent dislocations.

I hope this helps a bit.
Carol-Anne

[Enigma]

Thank you, all.
I have woken in a better frame of mind on the whole issue and i do understand the concerns about becoming over reliant on a chair of any kind for her.
Not being a driver at the moment is a huge restriction as to what we can do as a family given that Beth needs frequent rests and to be able to take her time over getting anywhere. One of the benefits of having something for her is that we will be able to get out to the bigger parks that are further away, and that will encourage her to be up and running about more. Also the whole issue of wanting to get her into ballet lessons, which again means traveling, will be made easier.
For me the best solution will be to get driving which will give us that freedom without a chair for her to become lazy with.

It is still difficult to adjust to the fact that something i have lived with and adapted to is causing so many problems to my baby. I know i will get used to it, its just bad timing i suppose

[nonyanomemory]

I wonder if it would be possible to go to Great Ormond Street as Alison suggests. Not only would they provide great rehabilitative services but they could also give good quality advice about pacing etc.

When my children were little I didn't drive and it was really limiting, so I do understand. Driving now even though I hate it but thats another story, does give more freedom. Mine are teenagers now and honestly the older they get the more lifts and transportation they need. So being pro-active and getting the driving sorted could well make a great deal of difference. Even going swimming etc. wouldn't be as complicated or tiring, for all of you.

I completely empathise with your thoughts on being the mother of a child with a medical condition. I would say though that children are amazingly resilient and have the ability to shine despite sometimes complex medical problems. Keep up the positive attitude and it will pass on to your little one. Easier some days than others I know. I have one child with epilepsy and dsypraxia and another with ehlers danlos. I have said this before somewhere in this section but in the early days I did used to feel guilty about passing on the eds until I spoke with my husband who has the gene for the particular epilepsy in the family. He helped me to understand that our children are special and that we must focus on that so that they learn that despite their individual disabilities - life is good and our family is unique because of our genes It really helped. I always worried that my children wouldn't be able to do the same as others so with the help of my family it was a great joy to me to see my son surfing, windsurfing and skiing! Falling off a lot and with me worrying like mad about exhaustion, seizures etc. but doing it.

I do so understand it is a lot to take on board in these early days, but truly the uniqueness of your own child is a blessing, she will shine and with support and great inner strength brought about by necessity so will you.

nonya

[Flexiblefriend]

Hi I'm sorry to hear how this news has hit you. Whatever you decide about the wheelchair I really think you ought to apply for DLA. My oldest child gets this and it is a god send it allows you to do things with them that you may not normally be able to afford. Having filled out the forms in I know they can be quite daunting and they make you realise how much extra stuff we do for our kids. BUT the benefits are great, Harry now goes horse riding with the money as this is a sport he doesnit need to reley on his legs for. Heill never be an athelete but he enjoys the freedom horse riding gives him. Maybe there something your chiold would like to do

Flexiblefriend

[Enigma]

Horse riding is an interesting one. I was once advised that impact sport/excercise might make things worse as it jolts the joints. However i am lucky enough to live just over the road from a riding school for disabled children (as well as about two farms and lots of open fields )

I was offered the loan of a childrens wheelchair from a friend that collects equipment no longer needed for taking out to third world contries (he has no trip planned for a while so the loan does not impact this) and she has taken really well to it. Suprisingly to me she is actually walking more than she would have with the pram. I think it is because she can get in and out of it herself. All round town she would show off her special chair to anyone that listened.
I have found it easy to accept now that i can see the effect it has had on her, and its far easier to manipulate than the pram was. She is in a better mood far more often and has not complained of the pains in her back in the past few days.
I am due to see her phisio in two weeks time so i will talk to her then about getting a chair that is the right size for Beth then.
Now to figure out how to manage a wheelchair and pram for the baby

[hannah]

I'm glad to here that the 'try out' seems to be going well and beth is doing well with it, and let us know how you get on with the physio.
Sorry I don't have any good suggestions for pushing a buggy at the same time.

Hannah

[jcwilson]

Hi,
Having been is your place for several years feeling isolated and having Sylvia in a pushchiar as that is what I was advised by an ignorant local physio,and having people stare at my wonderful and bright child who was up until this winter in one and is now nine.and feeling so lonely and a prisoner in my own home.
May I plead with you, these children can have a normal life, and with a lot of hard work I promise can be like the other kids.
I agree with the others please try and get under GOSH, SUE MAILLARD is the total best in her field. Enfact if you can find the money ,Go private,
then you will have an assesment and program started for Beth. to work on until you are seen on the NHS, ask for your Dr to make a private refferal,I think I spent around £180 to see her privatly origianlly while awaiting to be seen on the NHS.You should not wait to long to be seen privatly.only a matter of a few weeks.
Also you can go to Portland street withot a refferal it is only a matter of one phone call to them., SUE MAILLARD is no longer there for private appointments,But you might want to ask if there is someone.you could then be seen in a matter of days.
Also if you have not had Beth seen by an Orthotist yet please have a refferal made to see one of them as these kids are nearly always flat footed,and will need supports to put into what they wear on their feet.
Also SUE MAILLARD ,is pro these kids wearing ankle boots at all times as they need so much more support than others, your local physio like mine probably was against that or did not mention it.
If she is in School an Ocupational therapist should be go into it as Beth should be able to sit with her feet flat on the floor,if her hands ache a simple pencil grip will help her greatly,and a slope desk will help also.As well as chunky pens.
As for home this is what I have done that has changed our lives dramatically !!!!!! Sylvia for eating and colouring at the table has a triptrap chair ,it makes her sit ergonomically and her feet are supported at all times.These kids need good stable foot support as if not their hips are pulled and they start to wiggle and are very uncomfortable.
If on the floor dont let her cross her legs ,sit with her knees bent up high with her boddy imbetween like a frog or with her legs on either side of her in a W shape as all these will put strain or her joints, have her sit with her legs stretched out or both to the side of her.
The other thing I have done that has changed travel dramatically is to get a recaro car seat,you can get a foot support to go with it and a lumbar support cushion also all for a reasonable price.We now have quiet happy trips in the car and no wiggling unhappy child.
if you ever travel ,please go Virgin as they are the best and so happy to accomodate you.
I promise you that with lots of work and Physio , Beth can have a normal life.when you get a program for her ,dont listen to her moans and growns, as she will.Tough love is what is needed here, all this will be for her own good ,and she will be getting stronger and stronger.
Sylvia now works with weights on her ankles and has a program we do everyday without fail.
We do have the odd bad days and for those we use a tens machine for the pain.It works so well and she manages the controls herself,Drugs for some reason have little affect on these kids. It is hard for these kids to learn to pace themselves.when they feel good they go go go, But with physio and the right care Beth will learn do pace herself, as Sylvia is learning to do now.
We on the whole now have a much happier and better life, Sylvia runs and plays with her friends , she is on her Bike.She is already learning herself to take short breaks ,as then she aches less .
She is a happier child and I am happier now as I have some freedom from my home.
I promise you !!!!! there really is light at the end of that dark tunnel you are in right now.
Julianne

[jcwilson]

By the way,I also just thought I would mention the toileting problem, is Beth having problems as if she cant wait?
Sylvia has been bladder unstable for ever as I said before she is nine, she has never had a dry night in her life and is on a major drug to help her during the day ,BUT. because of the supperb !!!!! care we have been given at GOSH ,we are now going to at long last see a urologist.
I thought I would mention all this encase Beth is Simular to Sylvia in this way.
PLease as I said before get her Under the right people, as she can have a positive outcome and Not be in that wheel chair or a push chair.
Beth can be running and playing, with you looking on smiling ,I know as I am now doing it.For five years we used that darn push chair.Five years of waste ,when Sylvia could have been doing the right physio program and getting strong.
Best wishes to you all
Julianne

[jcwilson]

ps, I am non driver too, so know that problem too
Julianne

[janey]

Just wanted to add my feelings on wheelchair use. I recognise your feelings re: wheelchair use for our children however I would say that without a wheelchair both Rosie and I would be housebound. Even though I drive, even on her toughest days, it does mean we can leave the house if we want to, and it really helps to boost her morale on those days. She is finally receiving the help and physio input she needs but it is 18 months since her problems first started so she has a bit of catching up to do. On another note, using the wheelchair in crowded places (shops, school etc) helps to protect Rosies' shoulders by not being 'bumped' into.
So all in all, wheelchair use does have it's place in HMS in my opinion, particularly as for some sufferers diagnosis and appropriate help can take some time.
All the very best to you
Janey

[jcwilson]

Yes, that is the problem I had with Sylvia , till Jan when we got her properly sorted, It wore me out not getting out of the house and Sylvia not be able to walk far.I in the end got the special needs mountain buggy.
When you start the physio with her , and get her sorted, dont give in,
As I promise, Sylvia is now walking a 20 minute walk to school and had not be able to walk 5 before.
I am tough on her ,I make her do a hour a day and now that wears us out, we are hoping that the school will take over some of it so a little break can be had.But Sylvia really is a differnt girl.
What I have done is made the pushchair disappear into the back ground.And we have not used it once since Jan.
great Ormond street were so great with her and worked out with her twice a day to get her to the level she is now .And I am so very great!!!! to them as we have a better quality of life now.
You are very much in my thoughts and I hope that your young lady too !!!! will be able to shortly be out of that chair more often if not all the time fingers crossed!!!!!!!
Best wishes to you
Juliannne

[nonyanomemory]

Hi Julianne, I just wanted to say thank you for your uplifting post and also a thank you to the staff at Great Ormond Street.

nonya