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
HJC275
Posted
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
XXYGuy
Posted
What other difficulties does your son have related to his genetics, which I presume is XXY?
pauliboo
Posted
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/
SunRisen
Posted
Feel free to bitch about it if you want to kiss some @
SunRisen
Posted
pauliboo
Posted
Go on Facebook, and search for "KLINEFELTER SYNDROME" - you'll find loads of groups.
Good luck.
XXYGuy
Posted
XXYGuy
Posted
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.
tom1635 fiona73286
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.
Emis_Moderator fiona73286
Posted
Sorry for the delay in approving posts but if it helps there are discussions here https://patient.info/forums/discuss/browse/legg-calve-perthes-disease-1327 about perthes.
Regards,
Alan