How long before orthotics start to work?

[Noitsnotteatimeyet]

Dd (13) was fitted with orthotic insoles just over six weeks ago. She's been in a lot of pain with her hips, knees and ankles since last summer - she'll also complain of pain in her wrists, elbows and shoulders although this is not as frequent or severe as the pain in her lower limbs. She's had to stop running (cross-country and athletics), most school sports like netball and hockey and swimming competitively as that was all exacerbating the pain and as she's normal very sporty that's been hard. She's had several days when she's had to miss school as she's been in too much pain. Her blood tests were fine and an MRI ruled out cartilage tears etc but found she'd torn the quadratus femoris muscle deep inside the hip. She's seen a paediatric orthopaedic specialist who thinks the pain's caused by hypermobility, worsened by a growth spurt. Dd is very tall and slim with an arm span greater than her height.

Dd's on painkillers, has regular physio and uses a hot water bottle but is starting to feel this is never going to get better- we first went to the GP back in September. She had high hopes the insoles would help but she's had them for six weeks now and there been no improvement as yet - how long should we give it?

Sorry I have no wise words about the orthotics but it might be worth asking to be referred to a paediatric rheumatologist. DD (16) suffered a hideous year in 2015 with unexplained joint pain. It varied from moderate, manageable pain to severe attacks where she was confined to bed. Although not madly sporty, she was fit and super active; it was just the most frustrating time for her. All her bloods were fine - her inflammatory markers never seemed to be raised - but she looked bloody ill. At the end of the year, we saw a rheumatologist who diagnosed Ehlers Danlos Type 3 (she presents with classic hyper mobility symptoms; he thinks she is having inflammatory episodes which flare up with hormonal changes). We tried steroids (prednisolone) with not a lot of improvement and she has just started a course of Amityrptiline, which has been shown to prove effective in the treatment of neuropathic pain. She also does loads of Pilates (run by a physio for a small group of girls with similar symptoms) and this has proved really helpful. She often uses physio tape and splints to support whichever joint is playing up the most. It does tend to vary - at the moment she's having knee trouble. A few weeks ago it was hips, before that her thumbs kept dislocating. Our two girls do sound like they have are going through similar physical challenges. Do PM me if you want to chat further. Good Luck

Mother of another hypermobility syndrome/Ehlers Danlos syndrome teenager here. Orthotics didn't have much influence on pain levels as far as my ds could tell. He doesn't use them now as he fell out of the system (locally it's geared up for young children and he's 16) but he walks quite oddly and I think this throws his body out of alignment which won't help pain issues. So I suppose what I'm saying is that orthotics probably won't relieve pain but not using them may make things worse in future.

I'm trying to get my ds back into some sort of nhs specialist provision. Support for hypermobility syndrome can be patchy and may be treated by different specialists in different areas. In some it's GP support. Is the paediatric orthopaedic person going to keep on seeing your dd?

Thank you, both of you!

She is being seen every few months by the paediatric orthopaedic team but we've seen a different person every time. I rather get the feeling that as she doesn't have anything they can easily 'fix' they're not so interested in her - one of the surgeons we saw suggested it was psychosomatic and that dd was avoiding activities and school because something had happened to put her off

I suspect you're right about the orthotics not necessarily relieving pain but it being worse if she doesn't use them

I suppose we're both slowly coming to the realisation that this could go on for a long long time

We're back to the physio next week who is lovely and very encouraging

And ifancyagreencard I will PM you later thanks

Oh the "you're only doing this to get out of school" line. Been there, got the T-shirt! This condition can be incredibly painful and young people with it often have to push themselves very hard to get anywhere at all.

When ds was 10, and prior to diagnosis, he had a physio who accused him of putting it on as she'd seen him on a good day and then on a really bad one and couldn't understand why he was so different. We'd also seen an orthopaedic surgeon who'd said there was nothing wrong as his bones were fine! Then we saw a paediatrician and an orthopaedic surgeon with experience of paediatric cases and they both said no child could put on the strange walk that ds had. In fact that orthopaedic surgeon was so worried about ds's strange gait that he ordered an emergency MRI - which was fine.

So the trouble is not enough doctors, including specialists, seem to know much about it. It might be worth trying to get in with Rheumatology as ifancy suggested as they should know more about hypermobility syndrome and as far as I know, it's not really a feature of orthopaedic surgeon's work.

Yup, the first rheumatologist we saw (didn't bloody see him again) suggested taking up sport and some anti depressants. For a girl who, until this struck, was never at home because of some activity or another!
Anyway, I don't want to speak too soon but we are three weeks into a low dose regime of amitryptiline and I can see real improvements. Of course, it's always possible she's in a "Flare Down, not Up" and its a coincidence. But it's worth hoping it's had an effect.

What is the inside of the shoe like?

My DD's orthotics were uncomfortable and she really didn't see the point wearing them but we got an emergency appointment with a podiatrist and they said that her shoes had (unusually) a high internal arch that didn't compliment her orthotics.

We had to buy new shoes without any contours inside and use the orthotics to provide the arch support.

She now finds them much more supportive and they do help with her hypermobility although she only notices this if she swaps to shoes she can't wear orthotics inside.

There's a few support groups on Facebook for those with hypermobility and Ehlers-Danlos. They may be able to help you a little more.

We're going back to the orthotics department as the physio checked her insoles and realised the left one isn't giving enough support so her knees are still knocking together...

Fingers crossed that helps a bit

The paediatric ortho surgeon is baffled - she saw dd this week and has asked for her to be referred to a rheumatologist

The orthotics weren't holding her feet in place properly so she's now had some custom ones made and will get them in a couple of weeks

The ortho is baffled as dd's a bit hypermobile and a bit out of alignment but not so much as to cause the amount of pain she's feeling and even things like swimming are painful. It's unlikely to be simply caused by a growth spurt (which was the original theory) as its now been going on for too long but there's nothing significant coming up in her blood tests

Dd is getting quite depressed about this now as it seems never-ending

with physio I would expect to see an improvement after 2 weeks or so.
but with all the other painful areas I would second referral to rheimatologist.
does she sometimes have fever without obvious other illness?
has the ortho done bloods or images?
has osteomyelitis been excluded?

there is a kind of osteomyelitis that doesn't show in bloods (but in x-rays). it's called crmo

Thanks blue - she's had hip X-Rays which were clear and an MRI of her right hip (which is where this all started) which just showed tears in her quadratus femoris muscle. Her blood tests haven't shown anything obvious. She's been having physio since September and has been doing the exercises virtually every day - her core strength has improved (although it was already pretty good from all the exercise she was doing) but there's been no real change in the pain. She has the occasional fever but not frequently so I doubt it's osteomyelitis. I don't know how long we're going to have to wait for the rheumatology referral so it's very hard to keep dd feeling positive