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Tips and advice on Perthes

My son was diagnosed in July 08 he is 8 years old.

Here are some tips and advice for others when you are first told you or your child have the syndrome.

The Redcross will supply a paediatric wheelchair and crutches for a small donation when they are returned. They are not great chairs but for immediate need will do.

Join the Perthes Association - They are great and supplied a cool wheelchair. Wrote and sent the cheque with a deposit of £25 on the Tuesday recieved the wheelchair the following day!

Get in touch with your local Council - Occupational therapist will come round your house and assess it and supply things which will be useful.

As our toilet is upstairs I have put a camping toilet downstairs for my son to use which saves the up and down the stairs.

Apply for your Blue Badge through the council you should not have to wait for the disability living allowance, which you should apply for also.

Where forms are concerned put as much information as possible in them but there are stupid questions like how many times a day does you child go to the toilet and how long does it take!

The school will need to assessed by the special education team and the Occupational therapist to see if any alterations need doing. The school will benefit as all schools should be wheelchair friendly anyway. Make sure the school does a fire alarm test and that your child has wheelchair access out of the school. The local fire brigade can assist in this.

Get a spare set of crutches to stay at school it makes life in the morning easier.

Be warned that an child in a wheelchair is lethal and no matter how many times you tell them it is not only dangerous for them but is also dangerous for others if they are whizzing about they do not listen!

My son on his return to school from the summer hlidays was like the pied piper and had hoards of children chasing him in his chair we soon had to stop that as he was lethal.

My sons school have been excellent with everything and each day my son chooses two buddies to help him during the day. P.E. is also fine as he does join in when he is in his chair as he can still catch and throw. He goes to school on days when he has P.E. in jogging bottoms and T-Shirt as he is unable to get changed at school.

I hope this has helped.

12 Replies

  • Guest Guest

    Thank you. That was so helpful. My son is not in cast but has been told to be an inactive as possible and so i lift him upstairs to bed, to his room etc. It has been suggested that if it gets too hard to restrict him willingly that i should get a wheelchair as it would help to go shopping etc. He is nearly 5 and i dont always like putting him in a pram.

  • Guest Guest

    Last year our son who was 4 at the time was told he had perthes in his left hip. We were glad that we had a name with what was wrong with him and that it was not life therting. For a very long time we had and still have to carry our son up and down the stirs as his leg would always give way. We were told by our GP that we could get DLA for our son, so we applied and got turned down.I went to see my GP agane and he told us to appeal it because my child shoud be getting it. We did appeal and had to go through a pannol were we heard of the good report our GP give and a very shocking report from his consalnt that my child was very clumsery and his leg giving way had nothing to do with the perthes. We were agane turned down. My son has split his head open 3 times and got it glued because his leg keeps giving way. Our GP got us a very nice OT to help us get a toilet downstirs for my son. That did not help ether and the only thing she could do was put an exter stir rale. She was not happy with our consulant because she could see how bad his leg was. She told me if she was his mother she would go for a second appoine which we have and we are waiting to see the new conselant. I feel so let down for my son. I know he was entiled to the DLA and so many people out there get it and dont need it

    • sarah20165 sarah20165 Guest

      Hi My name is Sarah after reading what you wrote I thought I would get in touch. My daughter is 9 and was dignosed with pethes disease at the beginning of This year in April, I applied for child dla in may and was refused, I appealed it and was refused again. So it got took to a panel and it was therefor refused again. I know my daughter should b entitled to child dla. If u would like please contact me. It wouldn't be nice to chat to someone who has went threw the same.

      Look forward to hearing from you

      Sarah.

    • catherine63141 catherine63141 sarah20165

      Hi Sarah

      My daughter is also 9 and may have perthes (we are awaiting results from X-ray) my daughter just suddenly deleveoped a limp, complained of pain/clicking in her hip and pain down her leg and knee, since then she is also complaining of tingling in her feet and stiff toes.., does this link with perthes?

      Reading about perthes sounds pretty scary, what treatment is your daughter receiving?

      Hopefully I should get my results within the next few days but I'm so nervous my daughter loves gymnastics and dance and I'm dreading telling her she may have to stop

      Catherine

  • Guest Guest

    [b:ceb370fc9b][/b:ceb370fc9b] Did you know there is a forum on the Perthes website? it's easy to join, just go to google and put in Perthes Association and click on contact us, you get a form up and ask for a user name and password. It's worth joining too, for 15 quid you get a lot of info, regular newsletters and free invites to the Christmas Party and stuff.

  • Guest Guest

    Hi - I have found all of this information really useful as my son has just been diagnosed - he is 8 years old and is finding it very difficult to adjust to the idea of being inactive. He has lots of pain at the moment and this is keeping him awake at night.

    I would really like to find out from more and have joined the Perthes Association - just sent the cheque off last week.

    I guess this is just the begining of a rollercoaster ride...

  • Guest Guest

    You should be entitled to the living aspect of DLA but not the carers aspect which I think is a bit off but they conclude that because you care for a child anyway you do not need it!

    I had to appeal and I sent off the doctors report and the OT's report with the appeal

  • jellybean21 jellybean21

    [quote:5bb1b9a9b8=\"Carlie \"]Last year our son who was 4 at the time was told he had perthes in his left hip. We were glad that we had a name with what was wrong with him and that it was not life therting. For a very long time we had and still have to carry our son up and down the stirs as his leg would always give way. We were told by our GP that we could get DLA for our son, so we applied and got turned down.I went to see my GP agane and he told us to appeal it because my child shoud be getting it. We did appeal and had to go through a pannol were we heard of the good report our GP give and a very shocking report from his consalnt that my child was very clumsery and his leg giving way had nothing to do with the perthes. We were agane turned down. My son has split his head open 3 times and got it glued because his leg keeps giving way. Our GP got us a very nice OT to help us get a toilet downstirs for my son. That did not help ether and the only thing she could do was put an exter stir rale. She was not happy with our consulant because she could see how bad his leg was. She told me if she was his mother she would go for a second appoine which we have and we are waiting to see the new conselant. I feel so let down for my son. I know he was entiled to the DLA and so many people out there get it and dont need it[/quote:5bb1b9a9b8][i:5bb1b9a9b8][/i:5bb1b9a9b8]

  • Guest Guest

    [quote:5c05bf5513=\"Carlie \"]Last year our son who was 4 at the time was told he had perthes in his left hip. We were glad that we had a name with what was wrong with him and that it was not life therting. For a very long time we had and still have to carry our son up and down the stirs as his leg would always give way. We were told by our GP that we could get DLA for our son, so we applied and got turned down.I went to see my GP agane and he told us to appeal it because my child shoud be getting it. We did appeal and had to go through a pannol were we heard of the good report our GP give and a very shocking report from his consalnt that my child was very clumsery and his leg giving way had nothing to do with the perthes. We were agane turned down. My son has split his head open 3 times and got it glued because his leg keeps giving way. Our GP got us a very nice OT to help us get a toilet downstirs for my son. That did not help ether and the only thing she could do was put an exter stir rale. She was not happy with our consulant because she could see how bad his leg was. She told me if she was his mother she would go for a second appoine which we have and we are waiting to see the new conselant. I feel so let down for my son. I know he was entiled to the DLA and so many people out there get it and dont need it[/quote:5c05bf5513]

  • kimmy22236 kimmy22236 Guest

    My husband is now 19 years old turning 20 soon, he's had perthes since he was very young. His parents have done nothing to help him and he's currently spending nights in sharp pains, hip pops out of place, his leg gives out and sometimes can't walk, I've noticed people have said something about a DLA, I don't know what that is. And we're seeing a doctor this Friday but they aren't giving us much information on how to help him. He took X-rays and are telling us information we already know. If anyone can tell us what we need to do to help that would be appreciated. I know he'll need surgery but for now how can I help. What positions are more comfortable for them? Or what's safe to take, medication wise. 

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