Friday, July 19, 2013

Florida Wrap-Up

I am feeling a bit drowned in medical stuff again.  It seems the feeling comes with the territory and I know that the feeling comes a goes, but it is still not fun when your in the middle of it. 

First up is easy.  Ayden Jane has a sore at the corner of her mouth.  Mckenna used to get them all the time!  Luckily, AJ does not have any desire to pick at it so we were just letting it heal and not thinking to much of it.  When we saw Dr. Miller she took one look and asked if Ayden Jane had it long.  Of course, I was quick to let her know it was not caused by the lovely skin picking habit of many PWS kiddos, but that had nothing to do with where she was going.  She said that those sores are a sign of zinc deficiency.  Crazy.  I used to have AJ on a zinc supplement and had just ordered some more because I was working through all the supplements I had used in the past.  I started it today (the sore has been there about 2 weeks) so we will see!

Next up, carnitine.  I am still at a dose of 1000 mg/day of CF and 500 mg/day of acetylcarnitine.  Dr. Miller is happy with that dose (yea me, I can do math).  I thought that AJ was beginning to smell a bit fishy which can happen if you take a bit too much carnitine, but Wed. we realized that AJ had a raging UTI.  I am keeping the dose up and waiting to see ....  I don't mind a bit of a fishy kid in the summer when we are swimming and playing, but I don't want to send a stinky kid to school.  The added energy is about to exhaust me, but how can I be frustrated with my PWS kiddo being too full of energy and have no need for snacks.

Dr. Miller brought up the idea of a prebiotic to go with AJ's probiotic.  Way too soon for me to know what I want to do with that thought yet, but it will keep me busy a while.  As far as I can tell, a prebiotic is basically food for the probiotic so it seems like it would be a good idea but I am sure it is more complicated than that.... It always is.

Lastly, Wednesday we met Jen (PT) at Mr. Alan's (Orthotist) office to put together a 'derotational strap'.  What is that you ask?  Basically, we still have trouble with Ayden Jane's right leg wanting to internally rotate at the hip.  AJ she has stretched some ligaments ect. over time by sitting in a poor position with that leg.  It even accentuates her scoliosis when she gets back in the bad habit.  The idea with the strap is to hold her in proper position so her muscles get used to working that way.  For us, we have been wearing it when we walk the dogs.  So that means however long it takes us to walk 2 miles every day.  I have to say that the kid is again amazing.  She just takes the added hardware and extra work in stride.

Dr. Miller wants me to check in by email in a month with dosages, hts and wts and a quick report.  We may then look to play a bit more and see if ribose does anything for her now since it really seemed to help when she was little.


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