End of Day Two

We've made it thorough day two. Ben is doing really well but remains very tired. He has now had a total of 4 very small keto eggnogs and a small amount of no cal, no carb liquids. That's been it since Sunday night. He has +4 (large amt) of ketones in his urine and his blood sugar has been hanging around in the 70's. Which, believe it or not is where we want him. We are basically rewiring him to use fat / ketones as an energy source instead of carbs/sugar So you can see why he's wiped out.

We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.

Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.

When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.

Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.

Please keep us in your thoughts & prayers,

We miss you all and we hope you & yours are doing well.

-Meg