Ayden Jane was a bit grumpy by the time we got to talk to Dr. Clark, but that did not keep her from doing great. She grew a HUGE amount since our last visit in Feb. She measured 41". Her height percentile has gone up to 80th which I would guess places her about where she would be if she were non PWS. The other 3 kids were 85th and above percentile kids. As for weight, she weighed in at 37 1/2 pounds. That places her around the 60th percentile for weight. Her BMI was (15?) and places her around the 45th percentile. I'd say pretty awesome for a kid with PWS!
She asked about her motor skills and it was exciting to be able to say she swims, rides a bike, swings by herself...
Speech is great in the vocabulary portion, but we talked about some of the articulation issues and the occasional stuttering. Things that the impending return to speech will hopefully get back in line.
I described the sensory piece we still definitely see...
We talked fine motor and the challenges ahead with handwriting, cutting...
We talked about whether or not to check IGF 1 levels and decided it was not necessary now, but to call her and let her know when I felt it was time. I usually 'see' the need to bump gh in Ayden Jane when it is time. Dr. Clark explained the importance of bone age. I assumed they checked it to be sure gh is dosed correctly. I asked her about it (it was done in April and AJ's was perfect) and learned that part of the trouble with added weight is that it can cause the bones to age early and therefore close the growth plates sooner. This, of course, results in stopping the growth early.
We talked about the iron and the B12 and the other supplements and what I think I see from them.
She asked why I thought AJ was doing so great. Did I think it was the diet, the supplements, therapies, something else... In the end, I am thinking it is all of the above. There is benefit from each piece that we are doing. Then there is the genetics underlying all of these things. So, I would say that Ayden Jane has a genetic make up that would likely have been very lean and athletic and high metabolism (that is my body type). Add on top of that giving her foods that her body is good at using and the supplement support. Add the iron and B12 to smooth out some of the neurology and she gets pretty close to typical development. The amazing thing to me is how tenuous the balance can be at times. Lack of exercise and she is crazy, the wrong food and she is spacey, lack of supplements and the "PWS pause" comes back and she just cannot think or react quickly.... Stop therapy like speech this summer and we slide backwards. The list goes on.
I have to say, I love how much the current package is helping her but I sure hope that some of the incredible research out there will make it a whole lot easier to maintain that balance and give us a little wiggle room.
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