Biting Fast

That is how Elizabeth described the pain in her knee the other night. That night was one of the worst; she was crying, gagging and screaming out 'momma they are biting fast'. It was one of the nights where the only way I can get her to settle is to rub her knee until she falls asleep (after motrin, heating pad and rubbing cream).
We did see the Orthopedic surgeon and he had ruled out a knee injury and growing pains as it is localized. The surgeon's input was 'it must be behavioral, she should not be getting that much Motrin' needless to say I was very upset after seeing him if he knew us at all he would realize that this is not behavioural and that I have gone to great lengths to ensure that this does not turn in to a behavior issue.
The reality is Elizabeth has pain that no one can really figure out and no one can really give us options to prevent this pain. Elizabeth is right now out with the neighbourhood kids and her Dad and has been out for a couple of hours which means that tonight she will be in agony. Do I bring her in to avoid her pain getting worse or do I hope that in time she will get stronger and this will get better? I can't see how this can get better as each time she grows it starts up again as she becomes more unstable and hyperextends more. It really is a vicious cycle we want her to be active but at the same time we want her comfortable. Until then we might buy shares of Motrin.

Knees

Elizabeth's poor knees they are causing her so much pain and discomfort. This has been going on for the past year and it comes in spurts but this week has been horrible for her. The pain we think is related to her hyperextending her knees with the most strain on her Rt. knee, when she walks or stands she pops back her knee for stability (as you can see in the picture of her Rt. knee). Certain activities such as bike riding, swimming, walking without AFO's, sitting in the car too long and extended walking really aggravate her pain, we try to be be careful but at the same time she needs to keep active to keep her strength. We have tried so many things to prevent her knee pain; rigid AFO's, AFO's up to her knees, a Benix knee brace, kinesiotaping, heat, Motrin (we are going through a bottle a month), massage and creams. Elizabeth during the day does not complain regularly of the pain but lately she is chewing her fingers and when asked she says her knees hurt, Elizabeth describes her pain as 'a hundred owies biting my knee'. Nighttime is the worst time for Elizabeth, she is up for hours and up frequently in the night writhing and crying. Her sleep lately is so disturbed that she is wetting the bed and during the day she is miserable. During the night we use heat, her Voltaren cream and Motrin and that lasts a couple hours and she is up again. I try not to get in the habit of sleeping with her but on some nights the only way to soothe her is by rubbing her knees. Lately we all have been miserable as we are all very sleep deprived. I talked with her Developmental Pediatrician and she was able to get us an earlier appointment with the new Orthopedic Surgeon as she is very concerned. We will see her Pediatrician for a check up this week as I just want to make sure there is nothing else I have missed and it is not a referred pain. She will also go and see the Orthotist to review her AFO's and see if there is anything else we can do to her AFO's to make her comfortable. We are also starting another block with her PT to work on strengthening to hopefully help her not put as much pressure on her knees. I so worry what it will be like for her when gets older, I see what her dystonia/ataxia/hypotonia (still waiting for a diagnosis) does to her little body now and I cringe to see what it will do to her as she ages. My last thing to try is for her to see a Chiropractor I just need to find some extra time in her busy schedule.