Evelyne was presented at another international conference earlier in the month. The conference had the unconventional title "deformity downunder". There were specialists from a few other countries including the US and New Zealand. Evelyne's 2 x spinal surgeons were present and outlined her case for the participants. Like the last conference, they presented her case on powerpoint, then gave specialists the opportunity to come forward and examine her.
Yet again Evelyne was amazing, and dealt with the experience very well. She did everything they asked and charmed them all with comments like "there's a lot of doctors here" as she looked around the room of about 30. About 10 doctors examined her this time, crowding round. It is a strange experience, to see her on display as they crowd to check her out, yet valuing their expert advice on her case. There was a discussion on her current brace and its effectiveness and a discussion from the US specialists of the style in comparison to some braces used in the US. We then left the room and left them to discuss further.
This week we received the followup phone call from her specialist informing us of their conclusions. Overall they are very happy with her current brace. The plan is to make some slight adjustments at our next clinic in June. Thankfully there was no talk of surgery for the immediate future.
As I have had little experience so far with issues of knees, I asked another mum to write of her son's experience.
Tarron is 14 and was diagnosed at birth with Beals, he has been very fortunate and has not developed scoliosis thus far. He has all other characteristics of beals, but the issue we are dealing with now are his loose patella (knee caps).
Tarron has always had knee contractures but they really started to give him problems when he was about 10/11 years old. His knees started to dislocate very easily, some times more severe than others. This is very painful for him and sometimes would take him out for almost a month. When his knee dislocates, fluid builds up, so his knee become very painful and hard to move, the first week or so he cannot bend his knee. We have to use a splint and crutches until he becomes mobile again and can bear some weight.
We now use bilateral knee braces, and thankfully, we have not had any major issues in the past two years. This is just a temporary fix until he has surgery. He has dislocated his knees with the braces, but to a milder degree. Tarron is a very active 14 year old, and with the help of the braces, he can ride his bmx, run, or play any type of physical sports. They are the security blanket he needs, in order be a typical 14 year old.
Tarron's patella's are almost two inches above where they should be, they are also very loose and he can move them at will. A boy knees will fuse properly together around the age of 17 years old. Tarron has always been taller and his body seems to mature faster than other boys his age, which is probably why his knees are ready for surgery now. He is set to have surgery within the next two years as we have to wait for our doctor to fit him in. The surgeries will take place approximately 6 months apart. We have a surgeon who is one of the best in the area, and one of the only doctors in our area who will deal with this particular knee issue.
