[sadbear]

Hello everyone, greetings from Canada.<br><br>
I was wondering if anyone had to deal with, or knew anyone that went thru raising a child with isolated macrodactyly.<br>
Our baby daughter (10 months old) was born with both soles of her feet enlarged and 3 toes on each foot enlarged as well. They do not grow at abnormal rate, just staticly enlarged. Me and my wife went thru numerous heartaches and misdiagnosises. Firstly couple of eager genetic doctors declared our daughter had Proteus syndrome, but when they finally realized she lacked all other symptoms they simply said this was macrodactyly.<br>
The condition does not seem to bother our child, she is very happy, active, smiling and loves to huggle <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br>
However, lately she began to experiment walking and standing up, and we have realized that we can not fit any shoes on her. We have more doctor appointments coming up, but I was still wondering if anyone ever heard of the corrective surgeries at such early age, and how did it turn out.<br>
So far noone has been able to tell us anything concrete and it is killing me. One doctor said that noone will perform surgery on her, until she is her teens, possibly later. How will she walk, and what will she wear? I really was hoping she wouldnt have to experience the psychological impact in school.<br><br>
Thank you in advance,<br>
Sad Bear <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">

 

[AuntLavender]

He now has a finger like non opposable missing knuckle thumb and a pinky that is triple jointed on his right hand and all his finger and thumb on his left hand except his middle finger (the ring finger doesn't work but some bone from an amputated finger was put in it so it might grow and provide resistance when he is holding something).<br><br>
He had double hand surgery when he was 18 months old. Before that he had all his fingers and thumbs except the index finger on his left hand was never there. The amputated fingers weren't fingers but nubbins. They had finger nails I had to trim but there was no bone in there. The reason they were removed is so they don't get in the way. On his right hand the surgeon made a cleft so he could grab things better.<br><br>
No one can give us a diagnosis either. "Act of God" yet my insuance company doesn't pay for those! LOL! The geneticist said maybe when he is an adult there will be new tests to determine what he has. I've learned to get used to not knowing.<br><br>
He will need another operation at 5 and then again at 15. We went through the Shriner's for a time but they didn't seem to know what to do. We went to UCLA (we live in Orlando) and saw the Chief of Hand Surgery there to discuss a toe to hand transfer but the doctor said our son was not a candidate.<br><br>
His fingers will always be very short. He is in Occupational Therapy to learn how to hold a pencil and to strengthen his hands. His arms are also weak and he has sensory issues from not having typical hands (and thus getting typical imput from them).<br><br>
Have you gotten a Physical Therapy or Occupational Therapy evaluation? My son can open a bottle of barbeque sauce and almost break the foil seal! Appaently when they are born with it they have an easier time of it rather than if they lost use later in life and had to re-learn things.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
Sincerely,<br>
Debra, homeschooling mom of 4 ages 10 (AS), 9, 7, and almost 4 (HFA, apraxia, dysarthria)

 

[AuntLavender]

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<div>Originally Posted by <strong>sadbear</strong> <a href="/community/forum/post/8073379"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">One doctor said that noone will perform surgery on her, until she is her teens, possibly later.</div>
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We got 4 opinions before my son had hand surgery. We got 2 opinions before he had urology surgery.

 

[Throkmorton]

I know how hard it is to navigate the Canadian health system when you have a child. I'm sorry.<br><br>
Are you seeing someone at a Children's Hospital? Because specialists are in such short supply, it might actually be difficult to find someone to get a second opinion from, unless you ask a different doctor in the same clinic. (we went through this with my dad, and drove 5 hours to get a second opinion that wasn't "do whatever my boss said to do")<br><br>
I do have suggestions on shoes though! For the first 2-3 years, it is recommended that all children wear soft-soled shoes. Padraigs might work <a href="http://www.lindascraftique.com/site/padraig.htm" target="_blank">http://www.lindascraftique.com/site/padraig.htm</a> (they are pretty easy to make custom, if you know someone who can crochet.)<br><br>
You could also try contacting joshoes at <a href="http://www.joshoes.com/store/Default.asp" target="_blank">http://www.joshoes.com/store/Default.asp</a> and explaining the situation. She makes all of her shoes as ordered, and might be able to make you a custom pair.<br><br>
Finally, when your DD does get to the point of needing larger shoes with grips and a bit stiffer soles, you should get in touch with the equipment services people at a children's hospital. Heck, even an Occupational Therapist that deals with kids (likely she will need an OT anyways) They will know where you can get custom shoes made. If you have extended medical it will be covered through work.<br><br>
If you are seeing people at BCCH, I do have a directory and might be able to find the numbers you need to call around.

 

[sadbear]

Thank you very much for everyone that have replied! I am definitely will be ordering soft sole shoes, and getting some of the custom ones made.<br><br>
Throkmorton - We have a pediatrician at Shriners, Children General (geneticist and a orthopedist) and also went to see a doctor at Mcgill Research. (plus our baby pediatrician). We have an appointment coming up at the end of the month, and I will try to pry some answers from them (they even haven't let us see the results of her Xrays that were done right after she was born). I was reading a little more in the internet (sometimes I hate how much information is available) and some people had Syme amputations performed in a situation similar to ours. I almost cried when I read that.. I was hoping that some debulking/ray sectioning would have been sufficient..<br><br>
Thank you again for the invaluable soft shoe tip. This definitely puts me a little more at ease <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
Happier-Sad-Bear <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">

 

[Throkmorton]

Ah, Shriner's is a gret hospital. The likely reason you haven't seen a x-ray is that they haven't seen an x-ray. Most doctors don't get the actual films, just a summary from the radiologist. Don't worry, they are probably not holding out on you.<br><br>
If you have trouble finding custom shoes, private message me. I have a couple people i can ask.