please anyone who can help us my son aged 8 has klinefelters and just 3 weeks ago i was told he has perthes disease

Posted , 7 users are following.

please please can some one help to get some answers in the understanding of klinefelters ,

my son was diagnosed with this when he was only 3 and now a few weeks ago i was told he has perthes disease also .............

i feel so lost as there has never been any support offered to me and been a single parent its really hard to take it all in with no support

thankyou in advance to anyone who can help me x

0 likes, 10 replies

Report / Delete

10 Replies

  • Posted

    Hello

    Sorry to hear of your news, I don’t know much about perthes disease other then what I have just looked up, if I was you I would not worry about Klinefelters so much other than your son may have learning difficulties

    With Klinefelters you have all the time in the world to get use to the idea, it’s a bit odd finding out as early as three though, why and how would they know, normally it’s when a boy reaches puberty things are noticed

    Concentrate on the perthes disease and make sure he is getting plenty of iron in his diet to help build blood cells and maybe put him on child does of aspirins help to keep the blood flowing, I’m not a doctor so check with your doctor about that

    Web definitions

    1. Legg–Calvé–Perthes Disease is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur called the femoral head. Due to the lack of blood flow, the bone dies and stops growing. ...

    This may help https://www.tsrhc.org/Perthes-Disease

    Report / Delete Reply
  • Posted

    Perthes disease is not related to being XXY, or having any other condition. Apparently it has an unknown cause, is readily treatable, and although painful will not cause permanent damage. I've never heard of it before, you will probably know more than us. I expect you have already found information about Perthes disease on Patient UK, that's where I got much of mine from.

    What other difficulties does your son have related to his genetics, which I presume is XXY?

    Report / Delete Reply
  • Posted

    Hi Fiona,

    You may be interested in asking questions in one of several support groups which have appeared on Facebook?

    You will find other parents in similar situations and also XXY people who can share their experiences.

    Here is one example https://www.facebook.com/groups/109124499125136/

    Report / Delete Reply
  • Posted

    Sorry I do not know much about this condition and it does not seem to be directly related to KS at all. https://patient.info/health/Perthes'-Disease.htm

    Feel free to bitch about it if you want to kiss some @

    Report / Delete Reply
  • Posted

    Erm sorry KICK not KISS
    Report / Delete Reply
  • Posted

    I tried to reply to this, but mine had a link to a great Facebook Group that you will get answers from other parents in similar situations, and also us men with KS.

    Go on Facebook, and search for "KLINEFELTER SYNDROME" - you'll find loads of groups.

    Good luck.

    Report / Delete Reply
  • Posted

    I disagree, I don't think you'll find any parents of XXY boys who also have Perthes disease. It's not a disease associated with XXY or KS, and I've never heard of it before in any other context. It's a brand new disease to me, and I've been studying XXY since I was 17, I'm now 56. It's easy to find all manner of reports on XXY and KS, you'd be amazed with how many diseases are associated with XXY, KS being the symptoms of just 1 of them. So as I've not heard of it being associated with XXY or KS, chances are nobody else has. Your son is unique.
    Report / Delete Reply
  • Posted

    Oh and my page on Facebook is easily the best in the known universe, just search for New Zealand Sex Chromosome Society, which will also be found on Twitter, YouTube, and it's very own web page.

    There must be someone out there who has a boy with Perthes disease, and I'm sure you'll track that person down with the right search in the right place.

    Report / Delete Reply
  • Posted

    Hi Fiona,

    I have Klinefelters too, I was diagnosed aged 15 (33 now), I've never heard of Perthes disease and its most certainly not connected to KS (or XXY).

    Assuming your in the UK, I suggest the best line of support for you is the KSA or Klinefelter Syndrome Association, they are very helpful for parents and boys and run yearly events where parents go to a conference and all the boys get taken on a trip or do outdoor pursuits, all fully supervised of course.

    http://www.ksa-uk.net/

    I wrote some stuff for BBC Health some years ago via the KSA on the topic, they will be able to offer you support as a parent.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up