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Hi - I am new to the group. Here's my story as told before: David (who is now 5.5 years old) was born with SYNDACTLY or what is commonly known as webbing of the toes. It is a fairly common condition and also genetic. We were led to believe that the surgery to separate the webbing was fairly simple with little to no risk of complications. We wanted him to be "normal" (don't we all want that for our children?) and so we decided to go through with the surgery. At three months of age, he had his first surgery to separate the webbing between 2 of his toes. He was in a full leg cast for 6 weeks. After the cast came off, he had to wear bandages for a few weeks. Once the bandages came off, everything appeared to be fine. It was a fast few weeks later that we starting noticing some growth on David's toes. Within just a month or two, we knew that something had went wrong. We took David back to his Ortho Ped Surgeon and they explained that he had a condition known as KELOIDS. This was our first experience with keloids or even the first that I had even heard of the word. Of course we got numerous opinions. As you can imagine, this is very painful for David. There is a lot of tension in the keloids and causes it to itch and hurt. When he walks, the doctor said it feels like he has tons of rocks between his toes at all times. They started doing therapy on David and for 3 months straight, he was going into surgery every month; going under anethesia for lasar treatment and cortizone injections. They wanted to try to stunt the keloids from growing. After 3 months and us as parents seeing no improvement, the doctors wanted to do 3 more months of therapy. David was severly tramautized from the surgeries that he had already had. He became very leary of anything new and would SCREAM bloody murder anytime that we took him to any type of doctor. I couldn't even lay him down on his back to change his diaper anywhere other than at the house because he was so scared. (When they use the anethesia mask on a child, the lay him on his back on the bed and hold his shoulders down and hold the mask on their face). We decided not to go through with the other 3 surgeries because we felt that it was doing worse things emotionally to David than it was physically helping. When we got here to Texas, we found a SUPER Ortho Ped Surgeon at Children's Hospital. He first tried a pressure stocking on David to try to get the keloids down but it didn't work. Over the months, his keloids have gone down but they are still there and they still cause him pain. Every night before bed one of us has to rub it for a while so he can get to sleep. David is now 5. We saw several doctors between that first one who could not offer us any solution and now. We finally did another surgery on David 4 months ago with a Pedi Plastic Surgeon. He said that David did not have keloids and that all of those other doctors were wrong. So we did another surgery as he was the only doctor to give us some hope. Now, 4 months later, the keloids are growing back and we realized that he was wrong. Here is our latest update on my blog. If you do a search on my blog under TOES then you will find other posts from the past few months. (I was very emotional last night when I posted the latest entry below so forgive me in advance): http://derncare.wordpress.com/2008/07/13/toe-update/ A friend found this group for me. I wish I knew of other who have been in the same situation - syndactly that was separated and keloids formed. If I can find someone else, maybe they can direct me to someone who can help our son. Anyway, that is why I joined this group. Thank you. Care |
