March 2, 2010

Letter to Bertrand's Neurologist

Hi Neurologist,

When I spoke with Keto Nurse about Bertrand's labs last Thursday, she said she wasn't comfortable with Bertrand's liver values to raise his ratio to 4:1. However, Bertrand has had significantly higher liver values in the past--before the diet. And, he had low glucose because the lab took almost three hours to get someone from IV team to draw Bertrand's blood, so he was missing his afternoon snack. I don't like the sensation of treading water with Bertrand's treatment if there is *any* way in which we could be helping him. If we're still going with the EEG on March 26th, I would like your support to try the 4:1 diet beforehand. The urine strips we use to test Bertrand's ketones also test glucose, so I will closely monitor both.

That said, if we've gone as far as you think we can go with the diet (having to remain at a 3.5:1 ratio), we would like to try a steroid treatment. You know how nutty I am about researching all things with Bertrand. :) I've spoken with 5 different moms whose kids used steroids to treat MAE. The most popular arrangement seems to be a 5 day course of solu-medrol IV, followed with a prednisolone titer at home. (They've said that the body has to turn the prednisone into prednisolone by function of the liver, so prednisolone would work better for Bertrand.) After that, three of the kids went on the ketogenic diet for maintenance and to avoid going back on AEDs. One of the kids who did the treatment last year and didn't do keto afterward just had to go back in this week for a second round of solu-medrol.

In regard to steroids, speaking with both Bertrand's Pediatrician and Orthopaedist, Bertrand's bones don't seem to be a long-term concern. However, there is some additional blood work his Pediatrician recommended as a sanity check.

We understand that treatment has to balance many aspects of an individual's well-being. In Bertrand's case, we feel his cognitive development is crucial to his well-being, and as such, very much worth pursuing.

Thank you :)
Cristina & Matthew Might


  1. You two are such incredible parents to Bertrand. You're intelligent, you ask questions, you research... lucky, lucky B!

  2. Well said! Your points for going to 4:1 make complete sense. It's a fairly common ratio - it's not like you're asking to go to 5:1, so it seems reasonable to give it a go before steroids.

    Also, have you tried the Precision Xtra kit? It tests glucose AND ketones in the blood, which is much more accurate than urine and gives a better idea of what's going on in the brain. You can just get it at your pharmacy, I believe. We had a prescription written for it, but I'm not sure it was necessary. It's been really helpful on several occasions when Collin was acting a certain way and I was afraid that the urine stick wasn't correct since it's more of a delayed reading.

  3. "I don't like the sensation of treading water with Bertrand's treatment if there is *any* way in which we could be helping him."

    So well put. I have sent many an email of the same nature to my son's own team. Someone told me I'd make a good mother lioness and I think the same is true for you.