Does anyone else have a "chronically" ill child? How do you cope?

[weegiemum]

My dd2, age 5, has a chronic hip condition which means she can't be mobile much (5 mins walking per hour!!!)

Its been going on for 18 months, ha satleast another 6, possibly another year to run.

No idea how to deal with it - she is becomig increasingly frustrated, defiant, awkward .. tantrums about going to school (where she uses a wheelchair) and going out with me (in her Major buggy).

I don' twant to bribe her, btu I feel SO sorry for what she is undergoing (while also feeling sorry for myself policing every stet she takes!!!)

Anyone else have a chronically ill child?

[morocco]

ds has a chronic illness but currently under control so we're a bit 'distant' from all the issues it involves. it's massive strain though when he is ill - make sure you look after your own mental health - talk to supportive people, cut out any negativity. do you have people around you who are understanding? is school ok?

[cheesesarnie]

i dont but didnt want to ignore your post!

[weegiemum]

School are very helpful.. Family totallly understand (except MIL, but we have chosen to no longer leave her with MIL as we cant trust her to enforce the restrictions dd2 needs)

She can do anything. B ut is not ^allowed to run, jump, skip, hop, dance, etc or even walk for more than 5 mins in every hour, in order to protest her newly growing regenerated hip bone.

Its driving her, and me, crazy!

[weegiemum]

Also my own mental health is a total mess! I had bad PND after she (and both older sibs) were born. I'm depressed again just now - on HIGH dose tabs and seeing psychiatries every month, not sure how much it is related to dd2's illness, but I know it has affected me going back to work - I can't face it, as I never knwo when school might call - and also just relaxing and enjoying being a SAHM!

[DrCosyTiger]

Hi again Weegiemum,

I wish I had some magic answers for you, but just wanted to post to say we are thinking of you. It must be soooo hard. I guess you just have to congratulate yourself at the end of every day that passes as that's a day closer to when things will get better (and it does sound hopeful that they will). I saw your other post about ideas for sitting down activities - there seemed to be some nice ideas there, maybe they will help a bit? You are doing absolutely brilliantly - try and hang on in there and try if you can to grab a little bit of time for yourself (which I'm sure is difficult with three LOs). Keep talking to people who understand (your DH especially) and keep posting. I just had a quick look at your profile pictures (sorry sounding like a crazy stalker now!) and your DCs look absolutely gorgeous. This will pass, even though it must seem never ending at the moment.

[TheDMshouldbeRivened]

day by day. dd has cerebral palsy and epilepsy. The epilepsy is the scary bit that requires medication and lots of time in hospital.
But 'normal life' seem s a bit distant.

[nightcat]

Concentrate on what she can (not cannot) do and make sure these are enjoyable activities for both of you and you both can look forward to them. You might need to think out-of-the-box here (swimming should be good? or even just soaking in those whirlpool/jacuzzis - but of course not slides), some places to take the buggy to and watch the world go by when she is absorbed in art or fashion, children's theatre shows, etc.
Make sure she also takes vit B complex and some kind of fish oil/vit D and Mg (not just calcium) - this helps to grow the bones and Bs and omega 3/6/9 help with being able to cope.
Hope she is better soon.