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Hip Steroid Injection Offered to my 12yr Old DD (With EDSH) for Trochanteric Bursitis - Possible Meralgia Paraesthetica HELP!!(2 Posts)
Are steroid injections, without ultra sound guidance in the hip really the safe miracle cure for DD that a doctor, has told me yesterday - no side effects he said, which I know isn't true & he gave other bad advice that horrified our excellent local chemist as its not suitable for her age - she's small, but looks, talks & acts much older than 12.
I so want the miracle cure for her,I want this nightmare to end for us al but I'm scared & I'm not even sure I am been rational anymore. I've lost all faith in our hospital doctors & we don't even see the same one twice.
I don't know where to start, other than so far its been a year of hell & I am so exhausted & ill myself, that I don't even know if I trust my own instincts anymore
I will try & explain in sequence the relevant bit, I case it gives anyone a clue to the true cause...
DD has Ehlers Danlos Hypermobility. Comes with other symptoms such as gastric problems, POTs, Anxiety, CFS & more, she mostly copes no obvious illness, but she does struggle a lot, she loves school, though misses a lot, but thankfully is bright enough that she catches up easily.
Minor injury during a dance lesson, so minor she didn't even tell the teacher - over extended her left hip & felt sore for a while afterwards. She complained for a few days of slight numbness in back of thigh & aching hip, treat with heat pads & ice etc, but she was still mobile & it seemed to settle after a few days. Though she now says the hip felt like it was popping & snapping after that, but not uncommon with Hypermobility. Lots of her joints do that, mine too.
Soon after DD was then very ill & pretty much bed bound & doubled up with severe stomach pain for about 5 weeks - diagnosed as allergic colitis & a EDS related blockage, trigger by stress (aaaghh, who'd have a perfectionist kid who freaks at any school tests) managed at
She insisted on going straight back to school the day after she was back on her feet. Was told to take it very easy, was very highly strung & anxious (POTs related physical reason) panicked she would be late for school & ran for the bus - She said she felt something snap in her hip & then couldn't walk without severe pain. She rang us & DH picked her up by car with intention of going straight to A&E - she refused as she thought she had a school assessment, so insisted on going in with crutches. She clearly couldn't cope as she was still very weak & unfit from gastric illness, so we weren't surprised that the school called us to pick her up an hour later.
Dreadful time in A&E - very long wait, even though only 3 people there. Clearly didn't understand EDS. Clearly didn't believe she was in as much pain as she was, because she wasn't screaming or crying. Sent us home with minor sprain advice, including telling us to give her Calpol, which she can't take as it makes her very ill - we had already told them this.
Went back to A&E a week later - would have been sooner but DD was hysterical at the idea as she's had too many bad experiences there & always feels disbelieved. 4 hours later - after X-ray ruled out any fracture, Sent away with the same minor sprain advice, no follow up & told to give her Calpol - clearly thought we were making a fuss about nothing. DH was very angry at how many times they asked if she was an only child & did she like school, DD was very upset by this too
I had to insist on seeing a more senior doctor & refused to leave without fracture clinic follow up, which is normal procedure with more serious injuries 2 hours later they came down - long debate with doctor later, she agreed with trauma & orthopaedic follow up, but made it clear it was just to get rid of me - she even wrote this in the letter to our GP
Meanwhile DD cannot walk, is still in severe pain, can't use her crutches safely as she is too weak, cannot sleep for pain, so is a stressy, depressed, anxious mess & has now missed over a whole term at school & no real end in sight. Thankfully her OT helped us get hold of a wheelchair for her, but my own back is shot & she has no real effective pain management, bar Codeine which barely takes the edge of things & is a worry its self. She feels every bump in the pavement, so getting out is hard (& if that wasn't bad enough we have builders working in our house, much longer than intended, ripping out bathrooms & throwing up all sorts of unexpected problems [weeps] )
I could go on, but basically the first T&O doctor we saw was very thorough, we knew from past, that he has good understanding of EDS Hypermobility - he diagnosed suspected Trochanteric Bursitis with the front thigh ligament affected too, said we were doing all the right things already. Follow up to be a week later & there should be some improvement. He also organised physio for her.
No follow up appointment arrived without my chasing it, they had no record of it, but did organise an appointment where we saw a different Doctor who started asking questions as if we had just been seen by A&E & was clearly embarrassed when I said this was a follow up appointment - he admitted first doctors notes were missing & bar the letter from A&E, he had no clue as to what was going on. He did accept my account if the last appointment & thankfully organised the MRI without any further very painful poking & prodding of DD.
MRI clear, X-ray clear. Refered back to GP care without any further help. See GP who agrees it's bad, thinks Bursitis should show on MRI, dies now have first doctors notes, so agrees it's a puzzle, knows DD well, knows she is tough. Is stuck for what to do, but when we ring T&O later, they will see now DD again.
Yet another T&A Doctor yesterday, still doesn't have first doctors notes, insists on poking & proding & causing her pain, says its definitely Trochanteric Bursitis, insist it won't show on an MRI, contradicting other doctors, physio, private sports therapist etc & stuff I've read
& hes insisting he can cure it instantly & have her walking out of there as he did with a boy the week before with the same condition. He doesn't seem to have heard of Ehlers Danlos, had me repeat it 3 times, though he did have a thick, very difficult to understand accent. He insists no side effects to steroid inject bar minimal infection risk - has us wait outside whilst they get the jab that he insists he is very experienced with & can have her walking out of there. I ask nurses for help with info as I'm very worried. He then refuses to do it, making an appointment for the following week - where no dou we will see someone else.
He gives us pain management advise, telling me to get her Voltorol & how to apply it, I ask if it's safe with a kidney infection as she is currently on antiBs for that too. He insists its fine.
I try to buy it for her from our local excellent chemist, know Dd well & is aware of our current problems as we often ask her advice - she is horrified this doctor has given this advice & she can't legally sell it for under 14s & says she would advise against it with a kidney infection anyway.
I'm at my wits end, I've lost all confidence in our hospital with this injury & I feel really scared that this steroid injection could make things worse. I'm not even sure they have the vorrect diagnosis as Meralgia Paraesthetica fits the way DD describes her pain better & fits with her being doubled up with stomach pain for so long
If you have got this far
I made mistakes & missed out important info
Dad felt a twang in her hip, followed by severe sharp stabbing nerve pain, she describes it as feeling like toothache in between the sharp pain of movement. Physio makes it far worse, though she is keeping at it the best she can to avoid more problems.
Yesterday's doctor insists Meralgia Paraesthetica will show on an MRI, so ruled it out, couldn't tell me if injection would make things worse if it wasn't bursitis, couldn't tell me if it was safe with EDS Hypermobile hips.
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