My Son has Fibula hemmophilia

As an adult amputee I can assure you that there is no guarantee for or against phantom pains. Not all amputees experience them and not all amputees experience them as pain. Sometimes a phantom pain can be any false message that seems to be sent from the amputated area. It can be hot/cold sensations, itching, tickling, etc or combinations of senses.

I get some shooting pains (8 to 12 times a year they are bad enough to take over the counter pain medications) and occassionally itching. Through the years since my amputation at age 7, these pains have diminished and they were really only a "problem" the 2 months right after the surgery. Plus they usually alert me to a problem such as skin breakdown that I had not noticed or an ingrown hair (something that amputees sometimes have problems with if they shave their leg for activities like swimming).

While you certainly want to keep phantom pains in mind, as someone who has experienced them, I don't think you should be scared that your child will have them worse if you wait. Especially if you are not looking at waiting until the mid-teen years or later. Plus while I am sure your doctor has some observations, overall medicine does not understand phantom pains.

One benefit to waiting that you might consider is the older child is able to communicate on a level that they know exactly what to expect. I was ready to give up my uncomfortable brace and get a leg that would let me be more comfortable and wear any shoes that I wanted so I could focus on the outcome and not the view the procedure as a loss.

Ultimatley only you know your child well enough to know when it is best for them to manage the stress of the procedure physically, mentally and emotionally.

If the amputation is a symes amputation there should be little or no need for surgical maintenance (called stump revisions). Podiatry online has a graphic article showing the procedure for those who can handle the inside scoop.....I cannot, but my husband finds it fascinating.

Skin infections are mainly an issue when the prosthesis is fit. The prosthetic can always cause skin breakdown as a child grows and especially if the child is really active in hot weather without taking off the prosthetic leg and cleaning off the sweat. The problem is really minor and just involves good hygiene habits and paying attention when taking off the prosthetic leg....looking for red areas and such.

As far as younger children not having phantom pains, I question if they can communicate them and then later in life when they don't remember having a leg....do they mislabel phantom pains as other sensations. As I wrote earlier, right after my amputation I hated the phantom pains, which also presented as burning, tickling or itching. Now they are rare and less severe, plus they often alert me to skin breakdown or an ingrown hair. Sometimes I think the same mental process that lets me have phantom pains also allows me to still have my leg in dreams. A past employee of mine who became blind as an adult, talks about frequently dreaming of driving around town in his car and his seeing eye dog is sitting on the passenger seat beside him. My dreams are similar in that it seems normal to have my leg again and while I certainly don't long for my leg back, it is nice to have it visit at night when I am asleep and there is no pain.