First psychological issues

When did your little ones start feeling uncomfortable with their feet/hands?

Two weeks ago, we were having lunch and suddenly my daughter asked me: “Am I not wearing socks at my gym recital?” ūüė¶

“Of course, you won’t. All the children are supposed to be barefoot” – I answered without even thinking.

But soon after I understood what the point was…..

She was feeling uneasy about her foot (the first time ever!).

So I asked: “Are you ashamed about your special toes? Your friends have already seen them during the swimming class. Haven’t they? What’s the problem, then? If you have changed your mind about surgery, please, tell us, we will find a solution together.”

But surgery is not a point yet. She does not want to be told about it. She refuses it with all her strength.

What am I supposed to do? Shall I instist or let it go?

What was your experience (for those who postponed surgery) to this regard?


17 Comments (+add yours?)

  1. kelly hopkins
    Jun 04, 2015 @ 11:46:10

    We did partial amputation at 19 mo. But we did full amputation at just b4 5. He was very upset with us. Not speaking being very mean and angry. But he quickly got over it when he got new shoes in the same size!


  2. macrodactyly
    Jun 04, 2015 @ 11:56:48

    The fact is that in our case surgery is not THE option. She can still wear shoes in the same size and, so far, she is not hindered when she walks or runs. At present it is only a cosmetic issue and I can’t understant how much it is affecting her. Moreover I am not at all convinced that surgery would be beneficial in her case and I fear that she is simply adjusting to my point of view (because she fears surgery) rather than having her own.


  3. Michelle and Jonah
    Jun 05, 2015 @ 18:23:24

    My son is now 12 and has had multiple surgeries, starting at 6 mos w amputation of three affected toes as well as many ‘debulking’ and plastic surgeries. He is still wearing shoes that are almost two different sizes. The surgeries were very painful and he has lost many of his summers due to the surgeries. He is old enough now where he will be making the decision as far as further surgeries. I will be involved and guide him but the most recent surgery was a disappointment to say the least. And he remembers every minute of it – the pain, the recovery, Etc. Dr have advised is the soft tissue will continue to grow (at a faster rate) as long as he continues to grow so the surgery may in fact debulk the soft tissue but those results will probably diminish if he’s still growing. IF he decides to have another surgery (which I imagine he will) we probably won’t do it until his late teenage years.
    Where are you all located and what hospital are your kiddos being treated at? We are in Cincinnati and going to Cincinnati Children’s Hospital.
    What surgeries and outcomes have you had?


    • kelly hopkins
      Jun 06, 2015 @ 08:06:17

      We are located in SC and travel to CHOP w dr. Levin. I have heard Dr. Kasser at Boston children’s is the new go to guy as they have a macrodactyly program! Also I got my son into a study at NIH. Where the are testing several genes known to cause overgrowth syndromes when they isolate the gene he will be moved to the treatment study where they are working on something that stops the growth!


      • kelly hopkins
        Jun 06, 2015 @ 08:08:38

        there is a fb group if you are interested

      • Michelle and Jonah
        Jun 09, 2015 @ 14:25:16

        Kelly I am interested in every single thing you said. Can you provide me with info on NIH study as well as the FB page? I would be more than happy to provide my email address….

  4. macrodactyly
    Jun 06, 2015 @ 10:11:43

    this sounds very interesting! Can you keep me updated on the medical treatment they will choose? thanks. Fede


  5. kelly hopkins
    Jun 09, 2015 @ 21:02:11

    Please email me


  6. aniforn
    Jun 10, 2015 @ 00:12:52

    Hi Kelly, I’m Finnora and my son (3,5y) has macrodactyly on his right middle and point fingers. I’m interested about the NIH testing information and also the FB group too. My email address
    As for my son i think we will delay the operation for as long as possible to see how much it grows. Ray amputation for middle finger probably will be the best option unless there is hope to stop the growth. The soft tissue are spreading through the palm and making him hard to grab things with his right hand


  7. kelly hopkins
    Jun 14, 2015 @ 15:46:55

    The Facebook group is sole support macrodactyly group. Everyone is absolutely amazing!


  8. trisha2013
    Nov 06, 2015 @ 06:04:05

    Kelly, I am trying to find the Facebook group you have mentioned but can’t seem locate it. Are you able to point me in the right direction please?


  9. trisha2013
    Nov 08, 2015 @ 12:29:31

    Thanks Kelly. I am interested more in feet though.


  10. Dani
    Aug 20, 2016 @ 02:54:42

    I personally would tell your daughter that everyone has something special about them and she has special toes. It stinks but as she gets older her concerns are probably going to get worse. I used to stand with my “normal foot” over the other toes – frankly I occasionally still do at 39 even though at my age no one is going to be mean. My parents just told me that God made me special and I always just said “I was born with funny toes, guess God wanted me to be special”. Good luck. She’ll be ok!


  11. Andrea
    Oct 10, 2016 @ 15:52:36

    How do I get more information on the FB page? My son is 5 years old and beginning to be more active and play sports. The running and movement is causing some pain and discomfort to the point where he favors the opposite side. Just trying to gather more information before making a decision on next steps.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s