Wednesday 28 August 2013

Home in a Paw Print Cast (#14)

What a day! We left the house at 8.20am and were finally back home at 7.45pm.

Starbaby's new consultant was excellent and really treated him as an individual (rather than just 'a foot') and considered everything that's going on with him in addition to his talipes. She believes (which I had feared) that he has a neurological muscle disorder, and his talipes is part of that as opposed to being isolated. Whenever I raised the possibility with our old consultant/casting nurses that his foot issues might be part of a wider condition my comments were dismissed with a "we need to treat the foot first" comment. It was refreshing to have someone really, properly look at Starbaby and try to understand his issues and how they're linked.

It could mean he needs a different approach to his treatment to the standard Ponseti Method, and perhaps surgery down the line. He's in a cast now (complete with funky paw-print reinforcement to stop him bashing it to pieces on the floor!) and in a few weeks may have one foot splinted rather than the boots and bars which we were expecting. We shall see. It feels strange to think that his treatment might not be following the route we had got our heads around (casts, tenotomy, BnB) and that almost everyone who has a child with fixed talipes experiences. I don't know of anyone whose child's talipes has been deemed to be part of a wider condition and needing different treatment from the off.

Next step, neurologist referral for more investigations and tests (we see Starbaby's paediatrician in the middle of September so will be requesting that then). We could be staring down the barrel of a potentially life-changing diagnosis, but apparently it may take some time (perhaps even years) to get all the answers for our very special boy.

For now, I am incredibly glad I trusted my instincts which were screaming at me that something wasn't right with his treatment in his previous talipes clinic.

Big Sis and Starbaby were both superstars during the 11.5 hours we were out (only the last hour of the journey home contained several stops for calming-down-breastfeeds and a very unhappy little Starbaby at a few points), and it was great to be able to pop in on some very good friends of ours on our way home for a very late lunch and some delicious chocolate-star(baby)-cake.

No comments:

Post a Comment