Just turned 4
Posted , 2 users are following.
My son was diagnosed with perthes disease two weeks after his forth birthday that was eight months ago. My son was always falling and having a pain his knee. I was told that a lot of children just keep falling for no ,reason, and the pain in his knee was just growing pains. It all came to a head the day after his birthday he was crying in so much pain and could not walk I brought him to the doctor who said is was growing pains. I was not happy with what the doctor said, so I took him to the hospital. The hospital took an x-ray of below the knee and told me that his leg was broken. They put a cast on and told us to come back in one week. When we went back the next week we were told by a different doctor that his leg was not broken, he did not know what was wrong with my son but to come back and see him in three weeks time. The next day my son was still very bad so I brought him back to the hospital and saw the doctor we seen the first time. This doctor did not even look at my child he said his leg was broken and it had healed. I left the hospital knowing that something was not right with my child and thinking the worst. I put my child into the car and took him to another hospital. At the other hospital I was told to bring my son back to the hospital that we were at before as they had the x-ray of his leg, they also told me that my sons leg was very week. I just took him back to the GP the next day. The GP sent my boy back to the hospital for more test, we finely found out he has perthes. We were told the perthes was very severe and he has a lot of scaring on his pelvis. We were told not to let him have heavyi impact on his leg which we are finding very hard to do. Our problim is no matter how much rest my child gets he is always falling. Only yesterday my sons leg give way and he fell and split his head open. My child needs some support to help him walk. I have talked about this with his consultant who only wants to see him every three months because he has got good range of movement. Could anyone advise us as what ot do. Thinkyou
0 likes, 3 replies
Lucyx
Posted
Being female meant my outlook was supposedly not great. I was in a wheelchair until i was 8 and then gradually weaned off crutches until by the time i was 11 i barely used them. I find it strange that you have not been advised what to do to help your son walk. Obviously i was too small for a wheelchair when i was 4,as is your son. My parents started off with a special buggy for me (this was organised for us by the perthes association). we were allowed to use this for free until i was 5/6 when i got to heavy to be pushed in it!Then we had great trouble with the nhs trying to get a chair so again the perthes association helped us out. I also was lent a trike which was great for allowing me to join in playing with my friends, and a walking frame (like an elderly persons one but smaller) which was good for places without disabled access.
the only help i actually got from the nhs in the end was some crutches.
I did find it hard not being able to join in with games, particularly at infants school when classes were much more physical.
In my case is took many years of bed rest. But the theory that boys recover better than girls is not always the case!
My bilateral perthes does not stop me doing anything now.
I was finally discharged last year. I am now very sporty, even given my late start. I represent my school in tennis,squash,netball,hockey and canoeing, as well as playing club hockey and tennis and intercounty tennis.
I hope this gives you some help or hope!
Best wishes xx
Guest
Posted
Really sorry to hear about your experience with your son.
I was diagnosed with Perthies at the age of 7, originally my mother was informed it was Growing Pains (No Such Thing Everybody), long story short it started with Knee problems for me, kept falling and found it very painful. Eventually I was admitted to hospital and put on traction for 6 weeks, then wore the old Calipers for 2 years. By the time I was 11 (in and out of hospital) it was agreed that I could carry on with a normal life, and to be checked every 5 years. I was informed that by the age of 40 I would would probably be Wheelchair bound. I have managed very well as I am 43 now, but i must say my hip is now starting to lock regular and is very painful, and am currently going through the motions for a New Hip.
My message and advice I can give is, You must chase at every opportunity to ensure your son is getting the correct treatment, You have done really well so far and a big WELL DONE for that but I have to admit I am a little concerned that he has been sent away stating for him to watch any heavy impacts.
He should not be putting any weight on his leg at all as it could risk further damage to the socket if not treated.
All the best and I hope things turn for the better for you and your Son
Shaun
Guest
Posted
Just wanted to say having re-read my previous message, dont worry too much about the issue of putting weight on his leg, I am no real expert, Please understand, I am sure the doctors have it under control, im only saying to chase any issues that arise, please dont read it in the wrong context, and please dont restrict your son from any activity.
All the Best
Shaun