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- เผยแพร่เมื่อ 20 พ.ย. 2024
- This video is intended to help parents with small children suffering from Macrodactyly or other unusual growth patterns. For many years, I have recommended that parents take regular photographs to document growth. Regular photographs are a huge help, but they are much more useful when they are taken on a background of graph paper with a known size, because this allows actual measurements to be approximated when analyzing growth. These photos can help doctors and future researchers to understand growth patterns. They are very helpful, but are not a substitute for regular doctor's visits.
My official looking sheet is just a piece of graph paper with the name of the child, the size of the grid, and the date of the photo labeled. Try to take photos at regular time intervals, such as once per month for young children (under 2) and once per year for older children (over 2), or as recommended by your doctor. Keep the photos somewhere where you can easily add to them over time and will not loose them. I would recommend somewhere like a Facebook account with a private photo album, or some other cloud-based directory.
Good luck.
Thank you so much for this video! My 1 year old son has Macrodactyly. I was having trouble measuring his foot with a blank paper and a ruler. I don’t know if I should amputate it because the doctor said it will be easier instead of reconstructing his toes. I don’t want to make the wrong decisions. If you have any suggestions I would really appreciate it.
I have had my toe removed for this condition. The recovery is very long and it is painful. I had the surgery 17 years ago and it gets easier with time. But on the plus side, I don't have to deal with the pain of the toe pushing out my other toes on my foot and I can comfortably wear (some) shoes now. I would see if the child is in pain and gauge from there. If it doesn't seem to bother him then I would put it off for as long as possible. My surgery was at the beginning of summer at 15 and I barely finished recovering when school let back in. 6 weeks in a soft case followed by 6 weeks in a hard cast. My ankle has never been the same from being in a cast for so long and I lost so much muscle tone that I had to relearn to walk. But in hindsight it was worth it! Just rough as I was going through it
Sorry I haven't been on here for some time. It is always hard to know what to do in cases this difficult. If there is a possibility that an amputation is not needed, it is better not to amputate. However, if the amputation will be needed shortly, it is better to do it as young as possible. This way, your son will not remember the pain and have to re-learn everything. Young children are very adaptable. As they age, adaptation becomes more and more difficult. I wish you wisdom as you consider what to do.
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