February 22, 2010

Super Dad

As you can probably tell from our blog inactivity, the last few weeks have been unusually challenging for Bertrand (and me) due to his broken arm. Today was even tougher than usual, but fortunately for us, we had Super Dad on hand. Matthew really put his Family Medical Leave to work today! He started the day off by preparing Bertrand's keto meals ALL BY HIMSELF and then attending a 3-hour mandatory parent training session at the Carmen B. Pingree Center for Children with Autism (Bertrand's preschool)--during which he took notes. Then Matthew dealt with home repair issues--including buying a new water softener since the old one flooded our basement. After that we headed up to Primary Children's Medical Center (PCMC) where we all met with Bertrand's keto team. And Matthew topped the day off perfectly by "cooking dinner"! (Read: "bought McDonalds". Hey! It still counts!)

Anywho, Bertrand is capable of having at most 3 "seizure free" days in a row at a 3.5:1 ketogenic ratio. This is a fantastic improvement, but we'd like to see him completely seizure free if possible. If the labs which were ordered today look good, then we can go forward with a 4:1 ratio for the next month and see how his EEG looks on March 26th. From there we will know if we have to stop the diet temporarily to try the so-called "beast killer", ACTH. (You may remember hearing about ACTH earlier on our blog as the treatment for Allgrove Syndrome.) However, resorting to ACTH, or even a lesser steroid like prednisone, has been compromised by Bertrand's recent arm break. Steroids weaken bones, (one of our neuro's patients on just prednisone fractured 4 vertabrae) which is not good when bones are already weak. We'll be consulting with B's orthopaedic surgeon regarding the steroid option.

Bottom line: lab tests and blood draws will continue to be an important part of Bertrand's life for a long time to come. So, at the lab this afternoon, Bertrand needed 25 mL of blood drawn and after 4 pokes he had ZERO mL of blood to show for it. We have to return tomorrow afternoon and hope the poor little guy has better luck. Labs that are being drawn include: SCN1A (gene test, results in 6-8 weeks), Iron, (due to restless leg), Vitamin D, Selenium (both due to the ketogenic diet) and Bertrand's usual comprehensive metabolic panel.

1 comment :

  1. I loved the Super Dad posting, specially the dinner menu! Both of your postings are excellent and educational!
    Titi Lili