Visit to Johns Hopkins

Today we had a keto checkup at Johns Hopkins with Dr Kossoff. We did not get the news we were hoping for. We have not seen the reduction in seizures we had expected since she began the keto diet in February. Lily is still experiencing several small to medium seizures per day. We were hoping that the diet would have reduced the seizures by now. So, Lily is being taken off the diet and will go back to the formula she had been on previously. We will possibly be trying other anti-seizure medicines in the near future.

I am still processing how disappointed I am that this diet did not help Lily more. I have been feeling a number of emotions since our appointment today–anger, sadness, grief, disappointment. Some kids get on this diet and never have a seizure again, and while we weren’t expecting that for Lily, the fact that it didn’t really help at all is discouraging. I feel like we are running out of alternatives to help Lily and I am just gutted over this.

I try to stay positive and hopeful as much as possible, but sometimes things like this just hit me hard and I need time to just sit with the sadness and have a good cry. Just this weekend at church, we sang, “I know breakthrough is coming/by faith, I see a miracle.” At this moment I am struggling with why this was not a breakthrough for Lily. All we want is for some seizure relief and some improvement so we can maybe have a piece of her back, but it does not seem to be in the plans. I just need to process this for a bit.

One really great part of today was we got to see friends we met while we were admitted for the keto changeover in January. Their precious, beautiful son was also transitioning to the keto diet at that time, so we got to spend time with them and share some of our experiences dealing with our children’s needs. They are a special family and I am so glad our paths crossed and that we got to see them again today.

Anyway, thank you for reading. I am sure I will be in a different place with all of this in a few days. Please keep praying for Lily and that whatever we try next for her would be effective.

Thank you for all the support and love for Lily and our family.

5 replies on “Visit to Johns Hopkins”

I am so so sorry. You are an amazing mama. Lily is so beautiful and I enjoy following your journey. My heart breaks for this disappointment. ?

I am praying for peace for you and Todd and Lily. It’s hard to keep going but you do. I am so sorry this is happening. I love you

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