Poorly diagnosed condition

hi did you mean royal national stanmore i think mr nejad is a star .

my son doesnt have a social life either i think they worry about trips falls and being knocked over as my son was originally

the leg lenght can be dealt with r n o h take our sons trainers and raise the sole on them if you are offered this black is best as white shows to much yes i would like to keep in touch it gets very depressing as a parent i feel i should have been more alert i know others feel like this to

we need a support group i am going to write to my local hospital and see

if i can drum up some supprt

i am from guildford surrey

look forward to hearing from you again

i hope all goes well with his scan

Hi there, yes, I do mean the Royal National in Stanmore. I am pretty sure our consultant said he may refer him to Mr Nejad so hopefully he will.

We are from Essex, not far from Chelmsford. We've been up to A&E today as since our son's operation in April to have his screws removed his scar has not healed properly. We've taken him back and forward to our doctors and last week a nurse pulled a very long stitch out from his scar but last night I found another one poking out! That's why the scar cannot heal because the stitches are not disolving - so it's another course of anti-biotics! He does have insoles for his shows but as he has been back on crutches they are not really helping him.

Thanks for the good luck wishes with the scan - I will let you know how he gets on, I doubt we will hear anything straight away, we will probably have to wait for the appointment with the consultant which I think will be 2 weeks after the scan.

So have they said when your son will be able to have his hip replacement? Although we know it is major surgery we are all for it if it means that our son can be pain free and able to walk properly - do you feel the same? The sooner the better I think.

All the best to you and Jordan.

hi ,they have said jordan can have it any time as his hip so bad

even after valgus osteotamy mr nejad did .I just wish our local hospital

had refered him straight after accident .Jordan is in a great deal pain today and his knee is hurting as well so am keeping an eye on him

he got his new car two weeks ago as is now 17 my ex driving it for now

we found a car with seats at near to hip height helped mind you without

dla and mobility allowance we would have not been able to afford it

at stanmore they put new soles on bottom of shoes as this does away with leg length differance but he is still aware of people around him when out he gets embarresed other than that he is now a realy happy go lucky

person

i just cant believe we are not told about s u f e as our children approach 11 or 12

our world has changed so much sorry i am having a bad day today

Poor boy (I know he is 17 but he's still a boy (dont tell him that!) and your boy too), sounds like he has been through so much and to get better which hopefully they both will soon just takes so much, it's definately not a quick fix, it's a terrible thing seeing your child in pain and so limited as to what they can do. It does really take it's toll, I am always worring and just really concerned about his future and you're right, although thankfully it is very rare, there could at least be some information for parents when children reach 10 or 11 then if the signs were there people are more likely to realise something is wrong much earlier. Through no fault of our own they are suffering a lot more than they would have done if it was picked up early.

I know how you feel though you've been going through it a lot longer than us.

hi, our boys have a lot in common sadly ,we did have a bad time with jordan in october 2007 he was so depressed he walked out into the garden and i heard a scream and the dog barking as i looked out in the garden nothing could have prepared me for the sight of my son covered in blood crying he was sorry he had put his head through a glass window

intending to pull down on his neck i didnt see it coming he was moody and fed up reclusive indeed depressed he felt like our local hospital had given

up on him .He is so much better now no depression i was worried a couple weeks ago he put in for performing arts diploma at college i can only describe the person that did his interview as not nice she said no as he wouldnt be able to do dance ,we were originally told it be no problem but he doesnt want me to complain we are going to try college in woking

Ibelieve our boys will be better people with all they are going through

you make sure you look after your health as well i ignored a cold in may 2007 ende up in int care with pleurosy and double pneumonia they coulnt find a bug in my system so they said it was all the stress .

Jordan has decided to go for the new hip after we have been to ireland to see family in august so should be december as waing list normally 3 months ay royal national .

mr nejad is a jem i am going to ask him if he would provide some sort of help if manage to set up support group for others as i have seen both sides of this jordans and then a few children that have had pins put in and all ok so there is light at the end of a very very long dark tunnel.

when is your sons scan sorry i dont know his name ,and i am having a qiute night as jordan has actualy gone to a very good friends house and i know he is ok as they are aware of his condition.

hope you have a good weekend

Hello again, just thought I'd update my daughters experience.

It's just over a year that her SUFE really became a problem (after nearly a year of misdiagnoses) when her chronic slip became acute and she had emergency surgery and a pin placed in her hip (as in my previous post). Unfortunately it had to be fixed in a not-so -good position and made her foot stick out at an angle.

In my previous post I'd said her other hip had started getting the same symptoms and we went back to her surgeon who promptly put a pin in that hip in case the same was happening to that hip. So two operations in three weeks, which meant she wasn't allowed to weight bear on either leg for a while. We had three weeks of hell with her in a wheelchair and unable to use the stairs....camp bed downstairs, commode :oops: and no bath or shower! Horrible for a twelve year old girl. The saving grace was hydrotherapy at the physio department when she could have a proper shower and hair wash

Her wounds didn't heal very well and instead of a thin line, she's got quite big scars.

At her post-op review with her surgeon he referred her to Mr Najid at Stanmore. If there is anything good about this whole experience it was that luck was on our side and the surgeon on duty when she was an emergency was Mr Najids Registrar at Stanmore, so had had expert training!

Fast forward to last March, after seeing Mr Najid as my daughter was still limping, on painkillers regularly every day and a foot stuck out to the side, and no physical excercise for nearly 2 years (and consequent weight-gain). He found she only had 30degrees of rotaion in her hip and brought her in for an osteoplasty.

He had to remove the pin and take a chunk of bone away as it was stopping her hip movement.

At her last check up she has now got full range of movments, 90degrees rotation and is walking normally. She is now doing PE and games, using her trampoline and is 'normal' :D Mr Najid is a star!

So it seems we have a fairly happy ending, but still expect osteo-arthritis in that hip at some point. I can't tell you how lovely it is to see her just doing normal activities, running, dancing etc.

This condition really needs more publicity doesn't it? The condition is linked to overweight children, which is a problem on the increase, but no one seems to be aware of it.

I made a complaint towards my hospital about the misdiagnoses and they have now changed practice and know what to look for in other children.

Good Luck with your boys Jaquii and mjane, and hope you have a good outcome too.

hi, nice to hear your daughter is doing so well,my son only got refered to mr nejad because his registrar had come to guildford to work with mr coates . :

i have read about over weight children having this problem ,but jordan was average but he did have a fall in may of the same year resulting in

broken metatasel in right foot ,so he was load bearing on left leg 4 a while and this is the hip that went so it may have brought it on i dont know never will either :? .

i hope all continues to go well for her jacqui

Hi Jacqui (and Juggler),

Our son (Mason)'s scan is on Thursday this week. I took him to my sisters this weekend which he enjoyed but last night his hip was going into spasms and clicking loads. That's been happening for about 3 weeks now so the scan cannot come soon enough. I'll let you know what happens. His second op scar has not healed well, he is on yet another course of anti-biotics at the moment. The first one healed really well and was nice and neat but not this one

Mason is average too, weight wise (though he has put on a bit of weight now because of not being able to go out on his bike), so it can affect anyone, not just obese children but there is definately more of a risk.

Mason has had really bad days where he has got really down about the whole thing and it's really hard to accept that we can't do anything about it, just be as supportive as possible. Touch wood, he's not yet been as bad as Jordan obviously felt that time, I feel so sorry for them but things can only get better for them. With Jordan's hip replacement in December, hopefully he will finally be able to do things normal children and young adults take for granted.

That's really good news about your daughter Juggler, there is light at the end of the tunnel! It must be the best feeling to see her doing normal things and she must feel fantastic too :D

All the best to you both, chat soon, M

hi all

sorry not on this week our daughter 30th birthday on sat and she got engaged busy busy .We all had a lovelely night jordan was up and dancing as best as he can until 1am sunday now he knows he is getting new hip he seems so much happier

Mjane how did scan go or have you got to wait for results as we did

it is frustrating :? for us so god knows how they feel :cry:

any of you interested in support group please pm me as i need to show interest to warrant support to start group off

i also think it would be good for the kids to have contacts as well someone going through it as well who will understand maybe even set a site up for them on facebook as i know most use it to contact friends but we could oversee it make sure keep it safe

this was jordans idea

i am doing some research into setting up a website as well so we have our own space

hope to hear from you all soon jacqui

My daughter had her follow-up appointment on Monday at Stanmore. They were really pleased with her, but want to keep an eye on her until she stops growing, so yearly appointment until she's about 16 :D

She has set up a group for SUFE sufferers on Facebook; I'm not an expert on these things, so I'm not sure how you find it. There must be a search facility for groups maybe?

I don't know if you need any personal info such as her name etc, but I know she'd love some response to the group.

I'll keep checking on here to see if you have any problems accessing it; I'm a bit cagey about posting personal stuff on t'internet IYSWIM

hi juggler

i will get jordan to check face book he has just gone off to meet his friend and collect his gcse certificates from college he wont stay out long as he gets so much pain but the hip replacement should sort that out we hope .

i think it will be good for our children to share there experiences and follow each others progress .

i am working hard on trying to set up a site i have an it consultant who is a friend of my daughter he is going to give me a hand when he is off work in august i will let you know if we are successfull

i think it may help our children to meet and i may ask at stanmore if we can do this there maybe twice a year ,not just the children but us the parents as well wht do you think of that idea let me know jacqui

sorry it was city and guilds not gcse

If you type in SUFE into the search box on facebook it's on the last page (9 or 10).

It's very exclusive....only 4 members so far, and that includes me and my daughter and a friend lol!

Sorry, should have said, look in 'groups' not people :roll:

sorry not been on my cousin only 45 collapsed and died monday so

i be on again later in week x jacqui