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ewmoda

HELP perthes' disease, my friends daughter has it

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2958

Posts

EW EXPERT

Latest post on 06 February 2011 - 08:50

How do they think they can stay here with no jobs anyway. I would be out of here as soon as possible - save on the costs here - get the children into a government funded school so they can save their money to pay for whatever care their child needs. Staying in Dubai and fundraising for others to pay seems a very very odd way of dealing with their situation when the best care ever is not here in Dubai. I would leave with my family in a heartbeat if this happended to us.

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EW EXPERT

Latest post on 06 February 2011 - 07:13

I really don't mean to sound harsh but if both parents are out of work, would it not be best to concentrate their funds and their efforts into relocating back to the states and finding work their? Am sorry but the UAE is not the best place to be when you have a sick child and no work. The UAE does not have good tertiary care, the local population is not really large enough to warrant specialist care in many areas of medicine and most locals who get sick are treated outside the country. Seriously this family really do need to relocate to a place where their daughter can get the medical treatment she needs. As you can see from replies to this thread, their seems to be only one Dr who has experience with this disease......

2958

Posts

EW EXPERT

Latest post on 06 February 2011 - 07:00

My little girl saw Dr Marc Sinclair at Medcare - he is lovely. She had an injury that puzzled everyone and one of the things he thought it might be and tested for was Perthes - he explained it to me - I have never heard of it before - it wasn't that and she was treated well and recovered well but hers was not a big problem - I think if I was in the same shoes as these friends I would absolutely take this development as the time to leave Dubai and go to the US. You say the husband is American so surely he knows that the best chance for his little one is to get her treatment in one of the many specialist units in the US. those of us with kids would surely do the same..... Edited to add that she did not have to have an mri - just an xray and she had an ultra sound too to help diagnose why she was limping so badly. <em>edited by Clairehdp on 06/02/2011</em>

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EW NEWBIE

Latest post on 05 February 2011 - 20:38

my daughter doesn't have Perthes but she had hip dysplacia. Ask ur friends to ring up Dr Marc Sinclair at Medcare.. i know he also does charity work thorugh is charity little wings.. i am sure if they told him their situation he might to some pro bono work.. or at least give advise.. thanks for the info, i checked this doctor's profile and he is a specialist in perthes' disease :) <em>edited by Dodi.G on 05/02/2011</em>

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Posts

EW NEWBIE

Latest post on 05 February 2011 - 20:35

Dodi, i have just spoken to my close friend who has a child with Perthes and the information you have been given is not correct, the child does not need an MRI or Physio regulary. The child needs to see a specialist and have x rays and possibly surgery to correct the angles of the femur. There are no Peadiatric orthopeadic surgeons in Dubai who are specialists in this field or can be trusted re advice. So they need to get back to their home country and seek specialist treatment there, do you know where their home country is? In the mean time their DD needs non weight bearing exercise, ie can do swimming & cycling, and pain killers when in pain. An MRI is useless unless done by a team of specialists as is physio. I suggest they leave Dubai and find a country where their child can be treated. There are specialist centres in the US and UK. http://www.noc.nhs.uk/ edited by tally-ho on 05/02/2011 Hi There, (The above it correct) I HAVE PERTHES, it was undected when I was young. I am 33 years old and have had no treatment, it could have been treated when I was younger to correct the problem but it wasn't and therefore I have lived with it for the past 20 odd years. I have now had 2 children and its worse than ever, I walk with a limp, if i walk any distance its painfull, it really has been a hinder on my life. I would strongly suggest that this is looked at otherwise the poor girl will suffer with it. I have limited range with my right leg also and if I sit in particular positions it gets very painful and feels as thou its pop out of its socket although it actually stuck bone on bone and I have to wriggle around to get it back to normal, its VERY painfull. My opitions now are painkillers!!! Not an opition if you ask me or a hip replacement! Just to add the most poingnant moment for me was a few years ago when I was back home, I was walking to the pub a friend saw me while in the car (didn't know it was me from the back) and commented " Look at that poor old lady hobbling up the hill) I was only 30!!!! And just to add, this disease basically is bone eroding bone it only gets worse and worse as the rub together more and more pain, its not something that gets better and yes if not treated ever, I can certainly imagine you would become cripple! Sorry to tell you that but as I have it just thought I'd share. edited by JShepherd on 05/02/2011 thank you for you sharing, and I am sorry to hear about your situation, i know how hard it is to be a physically challenged person, I am an amputee, and that's what motivates me to try my best to help anyone who is physically challenged, and my friends they are doing their best to help their daughter they are planning a fund-raising event to help cover the treatment, unfortunately in the time being they can't go outside the country for financial reasons they are putting all their efforts and money to help their daughter. Accordingly to the info I have, the doctor is doing a good job treating her.

Sticky Wicket36659

1511

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EW EXPERT

Latest post on 05 February 2011 - 17:16

i don't disagree with her opinion but h&ll, her attitude in this whole matter is totally odd :\: Oh really, sorry i don't see that at all thought she was very helpful and concise, the written word can do that.

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EW NEWBIE

Latest post on 05 February 2011 - 17:14

i don't disagree with her opinion but h&ll, her attitude in this whole matter is totally odd :\:

Sticky Wicket36659

1511

Posts

EW EXPERT

Latest post on 05 February 2011 - 17:11

tally FFS!!!! As a parent who had a child misdiagnosed here by a well recommended surgeon (whose name appears on here all the time!) i have to agree with Tally-ho ho on this, some areas of orthopeadics are very specialist and you have to accept not available in the UAE. I wish the family well, was this from DIS by any chance?

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EW NEWBIE

Latest post on 05 February 2011 - 17:08

tally FFS!!!!

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EW GURU

Latest post on 05 February 2011 - 17:01

my daughter doesn't have Perthes but she had hip dysplacia. Ask ur friends to ring up Dr Marc Sinclair at Medcare.. i know he also does charity work thorugh is charity little wings.. i am sure if they told him their situation he might to some pro bono work.. or at least give advise.. It may seem like a helpful thing to recommend this, but it's not if you understood about Perthes and just how specialist this field is.

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EW NEWBIE

Latest post on 05 February 2011 - 16:50

my daughter doesn't have Perthes but she had hip dysplacia. Ask ur friends to ring up Dr Marc Sinclair at Medcare.. i know he also does charity work thorugh is charity little wings.. i am sure if they told him their situation he might to some pro bono work.. or at least give advise..

1414

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EW OLDHAND

Latest post on 05 February 2011 - 16:40

Dodi, i have just spoken to my close friend who has a child with Perthes and the information you have been given is not correct, the child does not need an MRI or Physio regulary. The child needs to see a specialist and have x rays and possibly surgery to correct the angles of the femur. There are no Peadiatric orthopeadic surgeons in Dubai who are specialists in this field or can be trusted re advice. So they need to get back to their home country and seek specialist treatment there, do you know where their home country is? In the mean time their DD needs non weight bearing exercise, ie can do swimming & cycling, and pain killers when in pain. An MRI is useless unless done by a team of specialists as is physio. I suggest they leave Dubai and find a country where their child can be treated. There are specialist centres in the US and UK. http://www.noc.nhs.uk/ edited by tally-ho on 05/02/2011 Hi There, (The above it correct) I HAVE PERTHES, it was undected when I was young. I am 33 years old and have had no treatment, it could have been treated when I was younger to correct the problem but it wasn't and therefore I have lived with it for the past 20 odd years. I have now had 2 children and its worse than ever, I walk with a limp, if i walk any distance its painfull, it really has been a hinder on my life. I would strongly suggest that this is looked at otherwise the poor girl will suffer with it. I have limited range with my right leg also and if I sit in particular positions it gets very painful and feels as thou its pop out of its socket although it actually stuck bone on bone and I have to wriggle around to get it back to normal, its VERY painfull. My opitions now are painkillers!!! Not an opition if you ask me or a hip replacement! Just to add the most poingnant moment for me was a few years ago when I was back home, I was walking to the pub a friend saw me while in the car (didn't know it was me from the back) and commented " Look at that poor old lady hobbling up the hill) I was only 30!!!! And just to add, this disease basically is bone eroding bone it only gets worse and worse as the rub together more and more pain, its not something that gets better and yes if not treated ever, I can certainly imagine you would become cripple! Sorry to tell you that but as I have it just thought I'd share. <em>edited by JShepherd on 05/02/2011</em>

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EW GURU

Latest post on 05 February 2011 - 13:46

Have they seeked second opinion yet? They can only do that out of the UAE!

3220

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EW MASTER

Latest post on 05 February 2011 - 13:45

Have they seeked second opinion yet?

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EW NEWBIE

Latest post on 05 February 2011 - 13:42

i agree with you tally-ho but there are people who are honestly trapped here with no way of just getting out or going back home. some people say they are of a certain nationality but have been expats all their lives and also don't even have a home country to go back to ;-) we are such a family. we are trapped here since our property is worth less now than what we paid for it and we have never lived in our passport countries either :( if anyone of us need any specialized treatment we are pretty much buggered. But if your daughter, could potentially be crippled, unable to walk, would you not pack up your bags on go back to your passport country and start a new life there, for the sake of your child? It's a no brainer really. edited by Izzy99 on 05/02/2011 a no brainer? really unless you are in this situation you have no idea. for us, if it was a no-brainer i wouldn't still live in this godforsaken horrible city. don't ever assume you know exactly how and why other people live their lives the way they do. <em>edited by citywoman on 05/02/2011</em>

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EW GURU

Latest post on 05 February 2011 - 13:40

If they are American and can go back to the US without insurance cover they could get some and then get the DD looked at having not mentioned any diagnosis in the UAE. I was just trying to save them some money whilst here. <em>edited by tally-ho on 05/02/2011</em>

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EW GURU

Latest post on 05 February 2011 - 13:38

i agree with you tally-ho but there are people who are honestly trapped here with no way of just getting out or going back home. some people say they are of a certain nationality but have been expats all their lives and also don't even have a home country to go back to ;-) we are such a family. we are trapped here since our property is worth less now than what we paid for it and we have never lived in our passport countries either :( if anyone of us need any specialized treatment we are pretty much buggered. If he was brought in as a Head, the school should be still playing for medical insurance until their visa is cancelled and should be named and shamed for putting a family through all this worry. So many companies have brought families out and then not repatriated when they have decided the employee does not tow the company line! Employment prospects will not be great for them here, so many of the schools are cutting back. Heard of several International schools now not recruiting from abroad, only internally or locally. (sigh) <em>edited by tally-ho on 05/02/2011</em>

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EW EXPERT

Latest post on 05 February 2011 - 13:37

i agree with you tally-ho but there are people who are honestly trapped here with no way of just getting out or going back home. some people say they are of a certain nationality but have been expats all their lives and also don't even have a home country to go back to ;-) we are such a family. we are trapped here since our property is worth less now than what we paid for it and we have never lived in our passport countries either :( if anyone of us need any specialized treatment we are pretty much buggered. But if your daughter, could potentially be crippled, unable to walk, would you not pack up your bags on go back to your passport country and start a new life there, for the sake of your child? It's a no brainer really. <em>edited by Izzy99 on 05/02/2011</em>

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EW NEWBIE

Latest post on 05 February 2011 - 13:32

i agree with you tally-ho but there are people who are honestly trapped here with no way of just getting out or going back home. some people say they are of a certain nationality but have been expats all their lives and also don't even have a home country to go back to ;-) we are such a family. we are trapped here since our property is worth less now than what we paid for it and we have never lived in our passport countries either :( if anyone of us need any specialized treatment we are pretty much buggered.

648

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EW GURU

Latest post on 05 February 2011 - 13:28

tally-ho you are totally out of line here. you might have good intentions but your manner stinks honestly. to tell someone that they need to get their priorities straight when they have just lost their jobs is appalling. i suggest you back off. It might have come across a little hard, for that i apologise, but they have been given great info now and do need to prioritise, with the wrong treatment and advice (even by a doc here) their DD could end up crippled for life. How can they stay here anyway with no jobs? And if they do, their DD will still need to seek specialist treatment out of country, this can help them in planning their next move. edited by tally-ho on 05/02/2011 <em>edited by tally-ho on 05/02/2011</em>

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EW NEWBIE

Latest post on 05 February 2011 - 13:23

tally-ho you are totally out of line here. you might have good intentions but your manner stinks honestly. to tell someone that they need to get their priorities straight when they have just lost their jobs is appalling. i suggest you back off.

648

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EW GURU

Latest post on 05 February 2011 - 13:19

Godd luck to them, they need to leave Dubai and forget being here.

648

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EW GURU

Latest post on 05 February 2011 - 13:16

WHO SAID I DIDN'T HEAR THE ADVICE, WHY ARE SO OFFENDED, THANKS FOR THE ADVICE I AM STILL WAITING FOR OTHER SUGGESTIONS, IN ORDER TO TELL MY FRIEND THE OPTIONS SHE HAS, THERE IS NO NEED FOR THIS AGGRESSIVENESS. They have to have the child seen in the US, there are no other options there are NO SPECIALISTS here, there may be Docs who think they are but they arn't!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Did they ever question why the child is having an MRI? Any search on perthes will tell you that is not required and pointless. I have known of several cases being misdiagnosed and treated in Dubai by doctors who think they can cover specialist conditions, luckily the parents have taken their children to the UK for second opinoins and found out the truth!

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EW NEWBIE

Latest post on 05 February 2011 - 13:10

WHO SAID I DIDN'T HEAR THE ADVICE, WHY ARE SO OFFENDED, THANKS FOR THE ADVICE I AM STILL WAITING FOR OTHER SUGGESTIONS, IN ORDER TO TELL MY FRIEND THE OPTIONS SHE HAS, THERE IS NO NEED FOR THIS AGGRESSIVENESS.

648

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EW GURU

Latest post on 05 February 2011 - 13:06

You asked for advice and you don't want to hear it, don't waste your money and cripple the child up for the rest of her life by trusting anyone here!!!. My friends child has spent 10 years in and out of hospitals and had 5 major surgeries, she knows what she is talking about. <em>edited by tally-ho on 05/02/2011</em>

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EW GURU

Latest post on 05 February 2011 - 13:04

Dodi i am telling you there are no doctors in Dubai who can specialise in this disease, an MRI is a diagnostic tool which is not used for Perthes as an X ray or an arthrogram is more than sufficient. Physio is useless untill post surgery as you can not change the problem or help it with physio. Perthes is a bone disease that in most cases self rights, in some cases it needs re constructive surgery. The surgery is better done when a child is younger rather than older and this surgery is not available in Dubai. In the US they have some excellent children's hospitals who will have specialists who know this disease and will be able to advise where this child is in her disease and a course of treatment. Tell them to forget seeing anyone here, its a waste of time and money.

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EW NEWBIE

Latest post on 05 February 2011 - 12:57

Dodi, i have just spoken to my close friend who has a child with Perthes and the information you have been given is not correct, the child does not need an MRI or Physio regulary. The child needs to see a specialist and have x rays and possibly surgery to correct the angles of the femur. There are no Peadiatric orthopeadic surgeons in Dubai who are specialists in this field or can be trusted re advice. So they need to get back to their home country and seek specialist treatment there, do you know where their home country is? In the mean time their DD needs non weight bearing exercise, ie can do swimming & cycling, and pain killers when in pain. An MRI is useless unless done by a team of specialists as is physio. I suggest they leave Dubai and find a country where their child can be treated. There are specialist centres in the US and UK. THEY ARE SEEING A SPECIALIST, HE IS GERMAN, AND THANKS FOR THE ADVICE. http://www.noc.nhs.uk/ edited by tally-ho on 05/02/2011 <em>edited by Dodi.G on 05/02/2011</em>

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EW GURU

Latest post on 05 February 2011 - 12:53

have suggested same to my friend, her husband is american and she is Lebanese, they can't afford to relocate now, especially with three children and still going to school and other life expenses. Well they need to get their priorties right and get back to the US.

648

Posts

EW GURU

Latest post on 05 February 2011 - 12:52

Dodi, i have just spoken to my close friend who has a child with Perthes and the information you have been given is not correct, the child does not need an MRI or Physio regulary. The child needs to see a specialist and have x rays and possibly surgery to correct the angles of the femur. There are no Peadiatric orthopeadic surgeons in Dubai who are specialists in this field or can be trusted re advice. So they need to get back to their home country and seek specialist treatment there, do you know where their home country is? In the mean time their DD needs non weight bearing exercise, ie can do swimming & cycling, and pain killers when in pain. An MRI is useless unless done by a team of specialists as is physio. I suggest they leave Dubai and find a country where their child can be treated. There are specialist centres in the US and UK. http://www.noc.nhs.uk/ <em>edited by tally-ho on 05/02/2011</em>

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Posts

EW NEWBIE

Latest post on 05 February 2011 - 12:52

have suggested same to my friend, her husband is american and she is Lebanese, they can't afford to relocate now, especially with three children and still going to school and other life expenses.

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