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today is a big day for our son jordan we are off to RNOH...

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Guest
Guest

today is a big day for our son jordan we are off to RNOH in stanmore

to see mr nejad to find out if he will walk again in near future

jordan suffered an undiagnosed sufe we were told he was getting growing

pains .He fell at school in nov 2005 they left him two hours in agony

we arrived and made them call an ambulance

he suffered a total slip broke femurel head through the growth line it was pinned two days later and again in april 2006 this is when they discovered avaculer necrosis .Jordan went into a wheelchair in may 2006

we have been told various things can happen ,re alignment if enough of bone is alive ,stay as he is for ten years ,WEwant SO DOES HE the realignment to get him back on his feet ,

Mr Nejad operated on him in november took the pin out as he felt it was doing more damage than good

we have had to move home as our home was unadaptable,we now have stairlift , ramp .Just getting these things is a fight i get so tired and upset i want him to be independent , we are waiting to have a wetroom put in as cannot use a bath

As a family it has devasted us i get angry i still believe that two hour delay in treatment may have affected the outcome.

I found there is no supprt net work IS ANY ONE INTERESTED PARENTS AND

TEENAGERS ALIKE I WOULD LIKE TO START A SUPPORT GROUP FOR PATIENTS AND FAMILYS

MY SONS FRIENDS ARE FANTASTIC this makes such a difference they take it in turns to open doors,help him get lunch etc

I LOOK BACK TO NOV 2005 HE HAS BEEN IN HOSPITAL A TOTAL OF 11 TIMES

I HAVE GIVEN UPWORK AS A FASHION STORE MANAGER TO MUCH PRESSURE

HE HAS ALSO HAD KIDNEY STONES

BUT AS I SAID IN BEGINNING TODAY IS A BIG DAY

FINGERS CROSSED IWILL POST HOW WE GET ON TOMORROW

[i:e57670215a]This message was automatically imported from the original Patient Experience[/i:e57670215a]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    i too would be interested in a support group . There is just such little information about s. u.f.e . Its strange that some gps and hospital workers dont diagnose this condition easily.

    I too gave up work because of my daughter she had a bilateral slip shes had reallignment on one leg and will be having the left leg done approximately may time this year.I am so sorry to hear your son is suffering. I also had to move house as we were in between moving to yorkshire and were living in a small rented house after selling ours.I know how tiring it all become , please email me if you want to talk some more.

    [i:d22ce083ba]This message was automatically imported from the original Patient Experience[/i:d22ce083ba]

  • Guest
    Guest

    Posted

    yeh a suppot group would help alot. I am one on the first to wright on here so when i was going through having SUFE i often felt alone. My parents were always there 4 me and friends to, but however no-one can understand what you are going through so it is nice to talk to other people who no what your going through. My local hospitial were useless and still are to be honest, they just have no idea!!! My surgeon Mr nejad! same as your son! is amazing! he is my hero! Im so sad to here that your son isnt doing so good! and hope that everythink may turn out well for him. smile Thanks sooo much xxxxxxx

    [i:ace47dc215]This message was automatically imported from the original Patient Experience[/i:ace47dc215]

  • jacqui119
    jacqui119

    Posted

    HI THANX FOR REPLYING HIS VALGUS OSTEOTOMY WORKED HE IS NOW OUT OF WHEELCHAIR AND DOING REALY WELL SORRY TAKEN SO LONG TO REPLY I HAVE BEEN IN HOSPITAL MYSELF FOR 4 AND1/2 WEEKS ININT CARE DOUBLE PNEUMONIA AND PLEUROSY !! LIFE IT DEALS ITS CARD SO UNFAIRLY
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