hello, i am new here, dd8 diagnosed with ongoing hip problem and i am just getting my head round our new 'life' iyswim

[piratecat]

hi, I am a regular, but new to special needs.
Just wanted to pop in and say, I am feeling a bit down and am having to come to terms with a problem she has in her hip.

It took weeks to diagnose, with a stay in hosp, trips to a+E, when she was in terrible pain. Lot's of scathing attitudes form hosp staff and even my own formally lovely gp. All becuase it's somehting they did not know, and becuase it comes and goes and they only had mydescriptions to go by.

Anyway. It's been a bit of a tough journey. Dd has been of school for 6 weeks now. She has iliotibial band syndrome, which is snapping hip. She has always had a dodgy hip, and walks intoeing on the right side. Over time this has now evolved inot this severe pain that comes and goes and has no pattern whatsoever. I have no practical rl support, so find myself stuck indoors with her. We can't plan anyhting, and i am trying to stop getting emotional when i htink she is going to have a good day but then it turns out to be shit day.

We are waiting for a follow up apointment with the orthopedic man in 2 weeks. Physio is ok, but she's in too much pain to do any of the stretches we have been told to do. Orthotics are going to reasses her next week with a view, i guess to shoes/insoles or anyhting that may help.

I am going to go tomorrow, my first visit to her, since diagnosis to discuss stronger pain relief. Bit nervous about that tbh.

Mayb elongterm dd will have steroid injections, not sure, but she can't live like this tbh.

anyway, here i am and i would really appreciate any info or input or expereince form you mums and dads.

thatnks so much

xx

sorry, i am going to go to gp 2morro, to discuss stronger pain releif.

piratecat don't be too hard on the GP. They honestly don't have experience of lots of these things, and only go on what they see.

DD1 was diagnosed with a virus when she fell over twice in one morning at preschool in June 2008. By September preschool had developmental concerns, and then at the end of September she started falling over again. That time I insisted that there 'must be something going on....' Fortunately, that GP took me seriously, sent us to the hospital.

DD1 has a brain malformation which was causing drop attacks - Epilepsy.

Back to you, though, you will need to become the expert on your DD, and practice putting some hard-soled boots on for stamping your feet. It is the only way. You can do it gently but persistently, or just give a good old stomp that means business, but you will have to stamp your feet.

I kept talking about behavioural issues with the Paed, he kept saying 'I don't see it in clinic', so I said 'see her at preschool', he said 'i don't have time'. He made the mistake of saying 'bring me a video'. When I took 40 minutes of footage of her at the side of a road, refusing to walk and getting in danger, he said "I suppose I only have myself to blame...."

You may be already doing this, but if you keep a diary of her pain levels, events prior to pain, etc. it will help because they can't fob you off.

hello lou, i am glad to see that your doc took you seriously. How is your every day life affected? My ex dh had epilepsy so I nkow how difficult it is to live with.

I was very frustrated yes all thru the process. It also stems from being a lone parent i guess, and feeling so unsupported and as though they thought i was losing it.I have written two lengthy emails to the school head, who is normally a great person, but up till this morning hadn't heard a jot back form him.

I rang again tpday and said look we need to communicate.

Have just looked online about DLA, and rung for a claim pack, tho i am not sure what that will all entail.

Sorry to hear your dd is in pain. Hope you get that sorted really soon. Second what lou said, educate yourself and advocate endlessly.

How old is she? WOuld HV be any use or is she too old? Is there a school nurse? Probably displaying my ignorance but isn't iliotibial band to do with the knee rather than the hip? Get together a list of questions for the ortho consultant and keep asking till you get answers you're happy with.

And always try to take care of yourself, even if it's just a long hot shower.

hi, the iliotibial band runs from the hip to the knee. it's a fibrous muscle layer.

most people with this syndrome get it form sprts injury, but is can appear rarely as hip pain.

It's over her hip and top of the femur, the fibrous bits are really tough but somehow are catching, and thereis tightness in her limb. might even be a bursitis forming there, but atm mri has shown no fluid.

Head at school is going to speak to the school nurse. Also going to speak to his highers.

tbh I feel like pulling her out of school to take the presure off.

just had a visit from the Education Welfare Officer, which tbh, was quite a relief. Just being able to tell her what the score is, and showing her I am not being a lax parent.

What was good, was her telling me there is another child aged about 15 with a similar problem to my dd, in the local secondary school. Just nice to know iyswim, as i have found little online reffering to this problem in children.

Glad you're making progress.

mexican waves back!

No advice or experience but just wanted to wish you good luck with the GP appointment tomorrow.

thankyou ohmeohmy, and coppertop.