Post by Donna Brown on Aug 22, 2007 14:38:47 GMT -5
Alex was born in 1994 and was diagnosed with bi-lateral Perthes at 3 1/2 years of age, when he started getting pain behind his left knee (same initial symptom I had).
The specialist ordered the usual regular xrays at 3 monthly appointments, restrictions, pain meds as needed and rest if he was sore.
There was some question early on as to whether or not he actually had Perthes, so his xrays were sent to a specialist radiographer who confirmed that he did indeed have bi-lateral Perthes.(*see further down for the rest of this!)
He did extremely well and even played soccer during this time. We explained to his coach about the Perthes, so he would only be put out on the field for 5-10 minutes, then given a break. They did figure out that he was an awesome goalie, so he ended up playing whole games in that position when he was able to.
Xrays continued to show damage to his femoral heads - almost like a large cat had clawed great gouges into them.
When he was 7 years old, we were pretty well through Perthes and at this time his younger sister Caitlin was diagnosed (her story is here too).
Specialist decided that he hadn't actually had Perthes, once again, and so xrays were sent back to the specialist radiographer, who this time agreed that Alex had not had Perthes (*). I have always however, been of the philosophy that his presentation of symptoms was classic Perthes, the damage to the femoral heads was not in my imagination (I have copies of the xrays) and we must have just been extremely lucky that he had such a mild case - if it walks like a duck and quacks like a duck, then it must be a duck!!!!!
I would guess that if I didn't know about Perthes, then we would possibly have overlooked his symptoms as muscle strains and/or growing pains and he would have been perfectly fine. The fact that I did know about Perthes meant that he was under a specialist throughout.
It does concern me that if I hadn't known about Perthes - how would I have coped with the screaming with pain that he had night after night? He would be woken by the pain, sobbing his little heart out and I would end up with him cuddled up with me in bed, pain meds given, a heat pack applied and just ride it out until these all took effect.
He will be 13 years old soon. He is taller than me at about 5'6" and well built, but is really a big teddy bear!
We still have the occasional bout of pain behind his knee, but xrays show perfectly normal femoral heads and no other damage. He has a paper run and recently did well in his schools cross country event, although he is not a keen sportsman, particularly not keen on running!
He starts at college next year and is looking at joining their rowing and/or kayaking teams, as that is a passion. We are currently looking to buy either a double kayak for the family, or two single ones, so that we can ensure his safety and also have fun as a family!
The specialist ordered the usual regular xrays at 3 monthly appointments, restrictions, pain meds as needed and rest if he was sore.
There was some question early on as to whether or not he actually had Perthes, so his xrays were sent to a specialist radiographer who confirmed that he did indeed have bi-lateral Perthes.(*see further down for the rest of this!)
He did extremely well and even played soccer during this time. We explained to his coach about the Perthes, so he would only be put out on the field for 5-10 minutes, then given a break. They did figure out that he was an awesome goalie, so he ended up playing whole games in that position when he was able to.
Xrays continued to show damage to his femoral heads - almost like a large cat had clawed great gouges into them.
When he was 7 years old, we were pretty well through Perthes and at this time his younger sister Caitlin was diagnosed (her story is here too).
Specialist decided that he hadn't actually had Perthes, once again, and so xrays were sent back to the specialist radiographer, who this time agreed that Alex had not had Perthes (*). I have always however, been of the philosophy that his presentation of symptoms was classic Perthes, the damage to the femoral heads was not in my imagination (I have copies of the xrays) and we must have just been extremely lucky that he had such a mild case - if it walks like a duck and quacks like a duck, then it must be a duck!!!!!
I would guess that if I didn't know about Perthes, then we would possibly have overlooked his symptoms as muscle strains and/or growing pains and he would have been perfectly fine. The fact that I did know about Perthes meant that he was under a specialist throughout.
It does concern me that if I hadn't known about Perthes - how would I have coped with the screaming with pain that he had night after night? He would be woken by the pain, sobbing his little heart out and I would end up with him cuddled up with me in bed, pain meds given, a heat pack applied and just ride it out until these all took effect.
He will be 13 years old soon. He is taller than me at about 5'6" and well built, but is really a big teddy bear!
We still have the occasional bout of pain behind his knee, but xrays show perfectly normal femoral heads and no other damage. He has a paper run and recently did well in his schools cross country event, although he is not a keen sportsman, particularly not keen on running!
He starts at college next year and is looking at joining their rowing and/or kayaking teams, as that is a passion. We are currently looking to buy either a double kayak for the family, or two single ones, so that we can ensure his safety and also have fun as a family!