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ewmoda

HELP perthes' disease, my friends daughter has it

11

Posts

EW NEWBIE

Latest post on 05 February 2011 - 12:37

My friend's daughter was recently diagnosed with a very rare disease called perthes' diseasehttp://www.patient.co.uk/health/Perthes'-Disease.htm , she is 8 years old and needs physiotherapy and MRI regularly, it is really a hard time for my friend especially that a week before they discovered their daughter's illness she and her husband were fired from their jobs, her husband is a school principle and she is a teacher, so they are jobless and without insurance, have to take care of their three children. I need advice and guidance from anyone who knows how can i help this family and whom to contact and if anyone knows any organisation that helps children with such disease.

thanks
<em>edited by Dodi.G on 05/02/2011</em>

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123

Posts

EW NEWBIE

Latest post on 06 February 2011 - 21:09

DH had Perthes when he was a kid which was surgically treated, diagnosed by x-ray. (First symptom was actually knee pain due to the change in gait.) Had to wear a spica cast after first surgery, and then had a second surgery to move metalwork. After that the best therapy was swimming and cycling, as they bear minimal weight. Didn't do any sport for 3/4 years after, but he has made a good recovery since and ended up playing hockey for his uni and played football every week. Still gets the odd flair up, but nothing a quick steroid injection hasn't fixed! Things have moved on since then no doubt, so I'm sure that less invasive methods are probably more successful these days!

15

Posts

EW NEWBIE

Latest post on 06 February 2011 - 15:52

i wrote it down thanks :) math 78 thank you so much, it is great to hear from someone who is facing the same situation, I would like to pass your e-mail to my friend please. Hi, it's ******** Please let me know when you have written it down, so I can remove it from this site. Thanks

11

Posts

EW NEWBIE

Latest post on 06 February 2011 - 15:19

i wrote it down thanks :) math 78 thank you so much, it is great to hear from someone who is facing the same situation, I would like to pass your e-mail to my friend please. Hi, it's *********** Please let me know when you have written it down, so I can remove it from this site. Thanks <em>edited by Dodi.G on 06/02/2011</em>

15

Posts

EW NEWBIE

Latest post on 06 February 2011 - 15:15

math 78 thank you so much, it is great to hear from someone who is facing the same situation, I would like to pass your e-mail to my friend please. Hi, it's ******* Please let me know when you have written it down, so I can remove it from this site. Thanks <em>edited by math78 on 06/02/2011</em>

11

Posts

EW NEWBIE

Latest post on 06 February 2011 - 15:13

math 78 thank you so much, it is great to hear from someone who is facing the same situation, I would like to pass your e-mail to my friend please.

gleekfamily24043

481

Posts

EW EXPLORER

Latest post on 06 February 2011 - 15:11

Shriners Hospitals in the US treat children up to 18 for free. There are about 15 orthopedic hospitals throughout the US and they do treat Perthes disease. They also provide free transportation to and from appointments. That's a great suggestion! I know they accept patients on a "need" basis...but it sure couldn't hurt to look into applying.

15

Posts

EW NEWBIE

Latest post on 06 February 2011 - 15:02

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. edited by Clairehdp on 06/02/2011 My DS aged 7 was diagnosed with Perthes disease last summer. We have been to see numerous doctors and found Dr. Sinclair by far the best. He is really good and knows what he's talking about. My DS so far has check ups every three months, where he will have an x-ray to check on the progress. Last time he was told we had to get a full leg lenght brace that he now wears at night. He did also have one MRI scan, but as Dr. Sinclair said, there really is no need for the MRI's as they are not as clear as the xrays. This disease is something that I do know a fair bit about before my DS got it, as my little brother had it when he grew up. So I've seen how it progresses during the years. The main thing about it, is that the affected child still needs to be moving the leg/hip but without high impact. The best thing is swimming and bike riding. OP, let me know if your friend needs anyone to talk to and I'll pass on my email. Math78, my friend asked me to post this to you; Math sorry to hear of your DS diagnosis but leg braces went out with the ark and i would urge you strongly to get your son seen in the UK (if a brit or have insurance). Every 3 months x rays are the norm which is what i passed on to the OP, not MRI's. Whilst the disease is in an active stage reduced activity (but still activity, swimming is great) and painkillers are the norm, dependant on the damage to the femoral head , surgery may or may not be required, please do not get this done here. It is highly specialised surgery and however much someone here may tell you they can do it it's not worth the risk and they can't. Children travel all over the world to the NOC and i have spent the last 10 years in and out of there, no way would i see anyone here. Please wearing leg braces is WRONG for so many cases please get a second opinion abroad. Just do a google and you will see what i am saying is correct, if you understand how the disease works you will know that wearing a leg brace is only used for very specific cases and very rarely now. edited by tally-ho on 06/02/2011 Thanks for the input, always good to hear others opinions. All our medical check ups here gets sent straight to London (for various reasons). Our specialist then tells us his opinion. So far he has agreed with everything Dr. Sinclair has done. Believe, when the diagnosis was made, my first reaction was to go home to the UK. But as we are fortunate to (thanks to modern day technology!) have second opinions from the UK, I can honestly say we are very happy with Dr. Sinclair. With regards to leg braces, my DS only wears them at night. I know that they are not used that often anymore. But in our case, the doc felt is was the way to go. Again, this has been approved by the specialist in London who in fact helped sort the brace out. Again though, always good to hear different opinions, especially since there isn't any findings yet of who and why some children get Perthes.

38

Posts

EW NEWBIE

Latest post on 06 February 2011 - 14:54

Shriners Hospitals in the US treat children up to 18 for free. There are about 15 orthopedic hospitals throughout the US and they do treat Perthes disease. They also provide free transportation to and from appointments.

gleekfamily24043

481

Posts

EW EXPLORER

Latest post on 06 February 2011 - 14:18

If they no longer have medical insurance in the US what kind of medical treatment is available to them over there? Public healthcare only exists for moderate-to-low income households (CHIP) and low-to-no income households (Medicaid). Chip is run by the different states, so the requirements and procedures to get approved are different. But with CHIP or Medicaid, she can probably be seen at a specialist children's hospital (ie Children's Hospital of Los Angeles). Unfortunately, I *think* there is a waiting period for eligibility -- I believe you have to establish your residency in the state/county for 6 months before you can apply. I don't think an existing condition has any affect on your application, I think it mainly has to do with a) your combined income and b) your residency. If moving back is even a remote possibility, she should contact the state agency wherever she plans to go and find out for sure what the requirements and coverage possibilities are. Good luck to OP's friend... Edited to say: I don't think it's a bad idea to research all possibilities, even if the most likely is to stay here and get treated. It's best to know ALL your options before making a decision like this. Tough situation... <em>edited by gleekfamily on 06/02/2011</em>

927

Posts

EW GURU

Latest post on 06 February 2011 - 14:16

There is a lot I could say but I will limit it to this: Not everyone will require the same treatment, a lot will depend on the age of the child, whether under 5 or older and the severity of the disease - whether there has been damage to the femoral head or not, what type of surgery(there are several), if any. is possible. For some cases braces are still used. Even with a parent who is an expert in their own child's illness one cannot take their expereince and apply it to all children with the same disease. There are many variables with this serious disease. The family need to take the advice of the the specialist who has examined the child clinically. And a specialist who is that, a specialist who has seen and treated hundreds of cases with a team of POS who can combine their knowledge and do the best for every child based on experience and expertise. Agreed; but are you saying with 100% absolute certainty based on your OWN experience (rather than someone else's) that the diagnosis and treatment they will receive here is incorrect? Otherwise how does it help this family? They need to go with the treatment they have been given here by the clinical expert who is available to them - until such time that they are in a postion to seek another opinion elsewhere should they choose to. Nothing else will help them at the moment. Ignoring the clinical opinion and treatment option they have been given in favor of a secondhand experience will not. <em>edited by Genie on 06/02/2011</em>

123

Posts

EW NEWBIE

Latest post on 06 February 2011 - 14:04

If they no longer have medical insurance in the US what kind of medical treatment is available to them over there?

648

Posts

EW GURU

Latest post on 06 February 2011 - 14:01

There is a lot I could say but I will limit it to this: Not everyone will require the same treatment, a lot will depend on the age of the child, whether under 5 or older and the severity of the disease - whether there has been damage to the femoral head or not, what type of surgery(there are several), if any. is possible. For some cases braces are still used. Even with a parent who is an expert in their own child's illness one cannot take their expereince and apply it to all children with the same disease. There are many variables with this serious disease. The family need to take the advice of the the specialist who has examined the child clinically. And a specialist who is that, a specialist who has seen and treated hundreds of cases with a team of POS who can combine their knowledge and do the best for every child based on experience and expertise.

648

Posts

EW GURU

Latest post on 06 February 2011 - 13:57

Thanks its really interesting, agree about seeing someone in the UK it is a rare condition so you really do need someone who knows there stuff. The thing is when you go somewhere like the NOC you see a TEAM of specialists not just one person specific, they are so specialised in their fields with years of experience, compared to Mr A nother here who says he can cater for a range of conditions as long as your arm!! If you look at the surgery statistics for example a surgeon at the NOC will perform say 300 of one kind per year where as here they may only do 1, everything is in place, surgical teams, orthopeadic nurses, physio's , OT's , you name it it's a one stop shop!

927

Posts

EW GURU

Latest post on 06 February 2011 - 13:43

There is a lot I could say but I will limit it to this: Not everyone will require the same treatment, a lot will depend on the age of the child, whether under 5 or older and the severity of the disease - whether there has been damage to the femoral head or not, what type of surgery(there are several), if any. is possible. For some cases braces are still used. Even with a parent who is an expert in their own child's illness one cannot take their expereince and apply it to all children with the same disease. There are many variables with this serious disease. The family need to take the advice of the the specialist who has examined the child clinically.

1414

Posts

EW OLDHAND

Latest post on 06 February 2011 - 13:39

Thanks its really interesting, agree about seeing someone in the UK it is a rare condition so you really do need someone who knows there stuff.

648

Posts

EW GURU

Latest post on 06 February 2011 - 13:35

Tally-ho just wondering how you know so much about this subject? Do you have Perthes? Just interested as I'd like to investigate for myself into what I can do to improve my mobility. I know what my friend has been through and she is a whizz on all of this having had a child with a grade 4. She swears by the NOC, (link below) maybe see if you can get an appointment for next time you are back in the UK and have some options? She is gets really upset when she sees such threads on here, this really is not the place for specialist orthopeadics in children and adults!

1414

Posts

EW OLDHAND

Latest post on 06 February 2011 - 13:31

Tally-ho just wondering how you know so much about this subject? Do you have Perthes? Just interested as I'd like to investigate for myself into what I can do to improve my mobility.

648

Posts

EW GURU

Latest post on 06 February 2011 - 12:58

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. edited by Clairehdp on 06/02/2011 My DS aged 7 was diagnosed with Perthes disease last summer. We have been to see numerous doctors and found Dr. Sinclair by far the best. He is really good and knows what he's talking about. My DS so far has check ups every three months, where he will have an x-ray to check on the progress. Last time he was told we had to get a full leg lenght brace that he now wears at night. He did also have one MRI scan, but as Dr. Sinclair said, there really is no need for the MRI's as they are not as clear as the xrays. This disease is something that I do know a fair bit about before my DS got it, as my little brother had it when he grew up. So I've seen how it progresses during the years. The main thing about it, is that the affected child still needs to be moving the leg/hip but without high impact. The best thing is swimming and bike riding. OP, let me know if your friend needs anyone to talk to and I'll pass on my email. Math78, my friend asked me to post this to you; Math sorry to hear of your DS diagnosis but leg braces went out with the ark and i would urge you strongly to get your son seen in the UK (if a brit or have insurance). Every 3 months x rays are the norm which is what i passed on to the OP, not MRI's. Whilst the disease is in an active stage reduced activity (but still activity, swimming is great) and painkillers are the norm, dependant on the damage to the femoral head , surgery may or may not be required, please do not get this done here. It is highly specialised surgery and however much someone here may tell you they can do it it's not worth the risk and they can't. Children travel all over the world to the NOC and i have spent the last 10 years in and out of there, no way would i see anyone here. Please wearing leg braces is WRONG for so many cases please get a second opinion abroad. Just do a google and you will see what i am saying is correct, if you understand how the disease works you will know that wearing a leg brace is only used for very specific cases and very rarely now. <em>edited by tally-ho on 06/02/2011</em>

3901

Posts

EW MASTER

Latest post on 06 February 2011 - 12:42

According to the jobs section on here DIA are looking for teachers now - perhaps they could both get jobs quickly here and stay..... I doubt a former head could get employment with in Dubai if there is a case pending, but they could tutor under the radar.[b'> Did a quick google of Heads fired in Dubai but the list is extensive[/b'>! Why ?? Do the parents even know the OP has posted their situation and the world and his wife are now discussing it ?

15

Posts

EW NEWBIE

Latest post on 06 February 2011 - 12:27

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. edited by Clairehdp on 06/02/2011 My DS aged 7 was diagnosed with Perthes disease last summer. We have been to see numerous doctors and found Dr. Sinclair by far the best. He is really good and knows what he's talking about. My DS so far has check ups every three months, where he will have an x-ray to check on the progress. Last time he was told we had to get a full leg lenght brace that he now wears at night. He did also have one MRI scan, but as Dr. Sinclair said, there really is no need for the MRI's as they are not as clear as the xrays. This disease is something that I do know a fair bit about before my DS got it, as my little brother had it when he grew up. So I've seen how it progresses during the years. The main thing about it, is that the affected child still needs to be moving the leg/hip but without high impact. The best thing is swimming and bike riding. OP, let me know if your friend needs anyone to talk to and I'll pass on my email.

Sticky Wicket36659

1511

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:38

According to the jobs section on here DIA are looking for teachers now - perhaps they could both get jobs quickly here and stay..... I doubt a former head could get employment with in Dubai if there is a case pending, but they could tutor under the radar. Did a quick google of Heads fired in Dubai but the list is extensive!

2958

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:36

According to the jobs section on here DIA are looking for teachers now - perhaps they could both get jobs quickly here and stay.....although I agree with Tallyho - they need a 2nd opinion in a specialist unit and Dubai does not have this..... <em>edited by Clairehdp on 06/02/2011</em>

Anonymous (not verified)

0

Posts

EW NEWBIE

Latest post on 06 February 2011 - 10:31

maybe Dodi.G's friend and tally ho's friend can exchange email addresses <em>edited by pentel on 06/02/2011</em>

Sticky Wicket36659

1511

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:15

What happened to them must have been pretty awful but they have skills they could be utilising as teachers and helping to bring in an income.

3901

Posts

EW MASTER

Latest post on 06 February 2011 - 10:14

maybe he has an ongoing dispute ?? Perhaps he's hoping to get his job back ? how long's a piece of string ?? plenty that's "peculiar" about this.... eta - in response to SW <em>edited by Sue62 on 06/02/2011</em>

369

Posts

EW EXPLORER

Latest post on 06 February 2011 - 10:14

tally FFS!!!! HUGE ditto.

2222

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:13

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. I agree Claire this has been happening for a couple of years in Dubai now why are people still being caught out and not prepared? Because it so much easier to expect charity and play the "woe is me" card than actually take responsibility for your life and the situation you are in!!!

Sticky Wicket36659

1511

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:10

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. I agree Claire this has been happening for a couple of years in Dubai now why are people still being caught out and not prepared?

Sticky Wicket36659

1511

Posts

EW EXPERT

Latest post on 06 February 2011 - 10:09

what if they're lumbered with a negative equity property and other debts ?? easy for everyone to say go back to US.. Why do ppl assume that others love and value their children any less than they do ?? If it was us and there was some reason preventing us all moving then i would take the child back to the US on my own and hope the husband could resolve whatever issues are making him stay... BUT if it WAS us then i really have no idea what we would actually do - until you are in these situations you can only suggest how you would like to react, not necessarily how you will... Don't you think it perculiar that they have not asked for the contact details of Tally-ho's friend and questioned the advice given? Don't you think they would want to know more rather than we are seeing a specialist when it has already been stated by some one with experience in this field there is no specialist in the UAE? I'm thinking why is this Head still here.

3901

Posts

EW MASTER

Latest post on 06 February 2011 - 08:57

what if they're lumbered with a negative equity property and other debts ?? easy for everyone to say go back to US.. Why do ppl assume that others love and value their children any less than they do ?? If it was us and there was some reason preventing us all moving then i would take the child back to the US on my own and hope the husband could resolve whatever issues are making him stay... BUT if it WAS us then i really have no idea what we would actually do - until you are in these situations you can only suggest how you would like to react, not necessarily how you will...

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Pictured: Flooded roads from the record-breaking storm that hit Dubai in April 2024.

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Image credit: Joby Aviation.

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