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 Ã‚Â£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.