Asking for Diagnosis

[trekster]

Thankfully my son is not HMS madmum. Well he has a few wobbles, but nothing like Stacey. Thankfully!!!! Stacey's allergic to nothing, but has everything wobbling. She said her elbows don't, but she could feel them slipping when she was non weight bearing on the crutches.

Day 3 in hospital now and they've started her on Tar treatment, which was earlier than they thought, so hopefully she won't be in as long as they thought. Her skin is looking much better already, although still a long way to go.

It's amazing the amount of medications that have lactose in them. As a baby he was prescribed vitamins by a dietician, as you've probably already guessed, they had lactose in them

I've been really lucky myself given that it's only my knees that are wobbly

i found hidden gluten in fish oils once it was causing problems with my co ordination and i was walking into things more.

[mazza111]

Unbelievable the hidden things in food. Things you expect, like flavourings are fine, like using lactose or whey for crisp flavourings we got used to. But them in medications that have to be taken Poor wee man is on toilet the whole time he gets a course of antibiotics.

Well, went to visit Stacey on Saturday and tonight, her skin's looking much much better. Thankfully. They are talking about discharging her towards the end of the week if she continues with this level of improvement. So will call and try to get an appointment for her GP tomorrow, hopefully get one in the next couple of weeks.

[madmum]

As my son is lactose intolerant when he has needed antibiotics he has had the sugar form of medicine available. Try asking gp or chemist to check and order that instead. Hope your daughter is doing ok,it took time for my son to get confidence after a foot injury. His physio has worked hard and finally he is walking better. He injured his in october.

[mazza111]

I hear you madmum. I thought Stacey would have been referred for physio tbh. But the orthapod just said, wean yourself off the airboot and you're discharged. Was a bit of a shock after 4 n half months in cast to say the least, but this is the same doctor who said she'd grow out of having mobile joints . She's started taking my advice and walking to the loo with her shoes on. Even tried to walk out to the lift and out for a smoke without the cast and using her crutches, but she's still got a lot of pain in the ankle where it broke. Will probably have to take her back to the fracture clinic when she gets out to get it checked. She was born with 2 ankle bones fused in each leg too, don't know if that's what's causing it to take so long to heal or what it is. Just know she can't go on much longer like this. She's 21 and walking about like a wee old woman.

Feel like I'm never away from hospitals atm. Luckily we live across the road from the main one. Unluckily we live a good 20 minutes drive away from the one she's in getting her skin done.

Called to get appointment for her GP this morning. All booked up for the next fortnight, have to call back on Thursday morning.

Just feels like we're getting no where fast with anything. And going backwards in some instances. Chin up and carry on the battle eh?

[madmum]

Personally I would ask for a second opinion orthopaedic as the one she has seen sounds a twit. I did it with my son after 5 years of being told he had no problems and it was the best thing I did. Through them he got to his rheumy and orthotist who have diagnosed his problems. His shin bones were twisting and due to that and hms his kneecap slipped 5 times a day. He has had set backs but is improving. I am 45 and only diagnosed hms last year. As you can see I have many problems including now a useless wrist but keep going. My problems started just before 21 and have got worse. I am a stubborn mare and have not given in,years ago I was told I would not walk but do with a crutch(not two due to the wrist). You are being a great mum. Sending hugs to you all. If I can help in any way please feel free to let me know.

[mazza111]

Aww thanks madmum. Just calling her GP to get an appointment as I'm typing this. Keeping her in hospital for another week. Her legs haven't cleared up as much as they would have liked....


And as I'm writing this, got GP on 3rd April and hospital have said she may get out on Monday, but to go to local hospital for light treatment.

Funny how much things can change in a few minutes isn't it. So roll on 3rd April and we'll take it from there. Will probably take her back over to fracture clinic when she gets out on Monday (If) just to get that leg checked, still seems to have too much pain in it for it to be healing.

[madmum]

Hope your daughter continues to heal. Do not ask the gp but insist she is referred to a rheumatologist who understands hms. Please give our love,sending you supportive hugs.

[mazza111]

Aye that's the hope that we'll get a referral on 3rd April. I just wish I had wrote down what that doctor said when she was 8. Guess I was in denial back then.

[mazza111]

Quick update. Out of hospital last Saturday another dislocation of left knee on Thursday. Didn't want to go to hospital again, so strapped it up waiting for GP appointment next week. Can understand not wanting to go back to hospital after spending a fortnight in there... but... better to have it strapped correctly. Had to physically pull it back into place this time. Roll on April 3rd

[madmum]

I know the feeling,my son has had a bad 2 days. Yesterday and today he slipped his kneecap. Today it took hours to get back and he has been in agony. Would not go to local casualty as they are useless and we are suing the hospital. Doctor no good and shut anyway. Had to come home at 2pm from school. I am struggling myself so of little help. He is now complaining of sacroiliac pain on the left. He has physio on 12th april,really need this looking at. Hope your daughter feels better soon. Good luck with gp.

[littlekitty]

Hello,

I hope that your daughter gets the help she needs and that she feel better.

[trekster]

madmum can you claim carers allowance for looking after your son? Im not sure if my knees fully dislocate but they certainly sublux.
My sister wont take me seriously though, i can feel my knees pressing on the tendon below them as it goes numb or becomes painful.
im hoping muscular skeletal can help me on the 13th.

Good luck mazza

[mazza111]

Bit the bullet and went to A&E tonight. Full leg brace and told she'll grow out of it This was after the doctor had examined the wrong leg tho

[trekster]

The doctor is an idiot, needs some information on 'the hypermobile child'. Could your support group supply them with information?
Theres been some success in Bristol with leaflet distribution at hospitals.

[madmum]

Definately an idiot dr, your daughter is an adult! Drs are often like that,one said of my son he injured his foot playing football when he got accidently pushed over by a girl. On the subject of carers allowance my son was turned down for dla saying he did not need enough care so unlikely to get carers allowance. I am on disability myself.