My dd (aged 6, nearly 7) has a number of health conditions which each on their own are minor but together makes for a complicated picture and a large number of hospital trips. In terms of education she's spot on, in fact in some subjects better than her peers. She's like any other 6 year old girl until it comes to the medications and therapies that make sure she's like any other child in her class.
She has severe migraine and takes medication 3 times a day to control them. Us and the school teacher administer this. She's excellent taking it but it must be done, not be missed and given its nature only an adult can draw up the dosage and give it to her. We see the consultant every 6 months regarding this.
She has mild to moderate hearing loss but isn't aided as she's doing very well without aids so we've all decided at the moment to just monitor which is done at 6 monthly appointments.
She has problems with her feet, ankles and hips meaning that walking more than about 10 minutes (so to school) is painful but she does it no complaints and she runs around like others but stops much sooner and often sits and reads in the playground at school instead of the mental charging around her peers do. She has specialist supports in special boots which have made a world of difference. She does 30mins of physio morning and night and school do some of the exercises in their wake up and shake routine.
She also has central precocious puberty currently untreated although is about to be treated. This has resulted in some behaviour problems as you would get with any teenager (but obviously she's not a teenager so she's not got their mental and emotional capacity to reason etc). We've been told the behaviour and emotional issues will go once treatment is commenced. The treatment requires her to attend the regional childrens hospital every 8 - 10 weeks for a slow release hormone capsule to be injected under local anesthetic. She must also attend the endocrine clinic there 3 monthly for monitoring of her response to the treatment and have annual scans and tests to ensure that things are still ok. This is at this level of attendance for the next 5 years.
Because of the number of issues she now has a general paed whose job it appears to be just to keep everything co-ordinated. They are 6 monthly appointments.
All these amount to a minimum of 15 - 20 hospital appointments per year which is clearly WAY above anything a child without these conditions has to endure. Jeez, I've just worked that out, thats 1 every 2.5 weeks and the hospital car park costs a small fortune! OK, now I'm worrying myself, how do I hold down a job? How does she miss that much school (the hospitals involve are all over 30 mins away so each appointment is half a day missed)?
I've waffled, gone of the point of my thread as well and scared myself about practicalities LOL! Anyway, is there any point applying for DLA (I'm wondering if she would qualify for low rate care)?
Well done if you've got this far!