Thursday, May 30, 2013

So what did we learn at Shriner's?

Last week, we had our first official consult with anyone who really might be able to answer questions for us regarding Zeke's hands.  Children's Hospital in Omaha, for all of their talents, was way out of their realm in terms of orthopedics so we had a short 5-10 minute visit with the pediatric orthopedist there and instead accepted a referral to Shriner's in Minneapolis.

We met with the hand specialist.  Highlights from our first visit include:

1.  Zeke's unique head shape being assessed not as an indicator of lying flat for too long or genetics but as craniostenosis, which occurs when the joints in the skull fuse prematurely.  We will be having a CT scan at some point to see exactly what is going on there and if this is something to be concerned about or not.

2.  The doctor was unsure as to the actual cause of the differences in Zeke's hand.  His right hand, the doctor described as a terminal amputation.  The doctor indicated that that arm was indeed shorter (which I have thought but wasn't certain) and that the portion of the hand that is there is smaller than the other hand.  He did not think it was amniotic banding because there is not a presence of tapering on the bones in his left hand.

3.  The doctor wanted us to look at the possibility of doing a toe to finger transfer for Zeke's left hand.  The surgery would involve removing his second toe and using it to length his pointer finger as well as to create a third finger on that hand.  This would give him a tripod type grip which the doctor felt would increase the functionality of that hand as the type of tasks required of Zeke increase in complexity as he gets older.  We really don't have strong feelings one way or another and are hoping we can find some other families who have done a similar surgery (or contemplated it) to share their experiences.

4.  The doctor recommended exploring a prosthetic for Zeke's right hand.  What this might look like, we really have idea.  From a complete hand to an assistive device that would aide in performing specific tasks, until we meet with the limb deficiency doctor and the prosthetic department, we won't have a good idea of the options.  Most of what I have heard is that people who have congenital differences of their upper limbs usually prefer to not use prosthetics and would rather use the body they have been given.  However, after posing some questions to other families who have children with limb differences, I did gets some good perspective on this.  Most agreed that this was true of their child.  Things that were brought up that I had not though of were that at a younger age, a child might be more receptive to learning to use the prosthetic.  The young age makes the therapy seem more like play and the kids are less set in their ways regarding trying something new.  Using the prosthetic is an experience that is helpful for the child, even if in the end they decide not to use it.  At some point in life, the child may decide to go back and use a prosthetic and having the initial experience of working with the prosthetic might be helpful in that situation.  Lastly, if your child breaks their "good" arm, if there is a prosthetic available, even if it isn't a first choice, it beats being completely limbless.  One mom also suggested that occupational therapy at school could be set up to do a ay with prosthetics and a day without, with each day presenting the same task just learning to do it two different ways.

5.  We will be revisiting Shriner's in the late fall/early winter to meet again with the hand specialist to discuss more about a potential surgery and to meet with a limb deficiency doctor and the prosthetic team.  In general, there wasn't huge rush to get started on making a final decision regarding surgery or prosthetics.  In terms of what we are doing here at home, we decided to wait until Zeke turns 3 to get our local school district involved.  At 3, the district itself can write an IEP for Zeke (related to occupational therapy) versus having to have an outside provider work on the IEP.  We don't exactly know how the services will shape up in terms of OT but there are several options regarding preschool and having services provided on the preschool campus.


Kathy C. said...

Are all these things part of a syndrome? We were told for 11 years that Jasmine had EEC syndrome. Then they did a genetic test and said she doesn't have it. But I find it hard to believe that all these birth anamolies she had just occured randomly.

kayder1996 said...

No syndrome that we're aware of. I did ask on a limb differences group if anyone there had the skull issues combined with the limb differences but no one did (thinking maybe that was indicative of a syndrome). Don't know if genetic testing is in our future or not. In Jasmine's case, I just from looking at her needs, I took would have thought EEC. (We looked at a little boy with EEC so we are somewhat familiar with it.) Interesting that they said it's not that.