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Just told 6 yr old daughter in the early stages of Perthe's

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Geraldine_Lennon
Geraldine_Lennon

From Northern Ireland

Very confused, my daughter had leg and groin pain in right hip about 3 weeks ago lasted for 2 days, G.P sent her to local hospital for an xray they diagnosed Irritable hip told her to rest and it should go away within two weeks. No pain since attendance at the hospital. Two days before the two weeks was up I recieved an appointment card for the hospitals A & E dept for the next morning got worried was not expecting it. Attended appointment the next morning met with doctor and was told that an orthopedic consultant had taken a second look at the xrays and that my daughter was in the early stages of Perthe's. Was absolutely gutted hadn't heard of it before, the doctor didn't really give me many facts didn't seem to know much. I asked what the long term implications would be and would she end up in a wheel chair, he said no, not to be too worried about it. I was told that she would be passed on to an orthopedic unit in Musgrave Belfast and that they would be in touch with me.

Don't understand my daughter is always on the go, is really sporty. She doesn't fit any of the characteristics of the illness she is one of the tallest in her class has big feet and is of a good build. She loves sports and goes horseriding and dancing, has never complained before or since the intial pain a few weeks ago, she has just been a little paler that usual this last few months. Don't know what to think, would hate to have to wait a few months for an appointment. If anyone knows of a private consultant who deals with this in my area please let me know.

Keep thinking that someone has made a mistake.

Any advice would be greatly appreciated.

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi I also come from Northern Ireland. My son has got perthes disease in his left hip that is very bad. He had just turned 4 when we found out what was wrong with him that would be about a year ago. We go to the Royal for him to be seen every 3 months. My son is also a big child with big feet size 1. He was born well over 10lb. So it could happen to anyone. You need to stop all the sports, swimming, cycling and horse riding is only the best things that can help your childs leg. Did you know that we have the hightes rates of Perthes in the world. I am not happy with my childs consaltent and I have asked the GP to refair my son to a different hospital. I have found out that their is only 3 doctors that deal with perthes here, and to go privet you have to go down south or across the water. I wish you and your child all the very best, and I hope you don,t get our consuland who also works in the hospital that you are going to. All the best Kelly-Ann
  • Guest
    Guest

    Posted

    Hi, my daughter Holly was diagnosed in August 2007 with perthes in the right hip when she was only 4. It has been a constant wait and see game which leaves us none the wiser. She had to go in Musgrave in March 08 for 9 days traction (because her hip had stiffened). We have to keep her off her feet as much as possible (which is practically impossible for a 5 year old) and we find this very hard as Holly feels she is being punished for something, she says she has no pain in her hip although she constantly walks with a limp (some days its worse than others). How we treat it is that she cannot walk anywhere at all, we wheel her in a wheelchair, we try and do things with her that involve her sitting a lot. She is allowed to go swimming as this is non weight baring and we also do physio exercises with her twice a day - and this seems to be working it is keeping her hip mobile and from stiffening - which is very important. (Definately ask the consultant for exercises and start doing them asap). She only gets out on her bike to play - as this is non weight bearing she is allowed - but keeping her on the bike is hard as occassionaly she takes off with the other kids up the street so we are constantly watching her, its so important to not make them feel they are being punished and to get other people to try and include them in things because at the start she just was not allowed out and it broke her heart and ours, I still sent her to GB in her wheelchair etc. sunday school whatever other activities. Ive no idea how Holly's hip will pan out - I go from utter dispair thinking its never going to heal properly to hope, its so up and down going from other people's experiences. DLA is available for some as ive recently just found out, I would try and claim this as the extra money and parking badge would be a big help, especially for swimming etc. Im getting holly set up for swimming lessons as she loves the pool, its something we can both enjoy doing together instead of me seemingly always telling her off for being on her feet. Im clinging to the hope that the consultant says it takes about 2 years for it to heal and be normal - she is almost 1 year down and hear is hoping. I hope this has helped you. God bless.
  • PiperP
    PiperP

    Posted

    Any updates to this?
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