Two weeks into Ketogenic diet update

Hazel has been on her new Keto diet for two weeks by noon tomorrow. She is complying with the diet like a little champ. She is eating all the food prepared for her and taking her heavy whipping cream or cream plus oil just as she would her regular bottle. We have gotten into a routine of preparing all her meals, snack (jello and cream) and free food (3 olives) over the weekend to have it ready at four hour intervals. There is no time for weighing out every single item to hit the 3:1 ratio before every single meal. Instead, the preparation is the key to some normalcy. Some items have to be defrosted halfway through the week to keep them fresh, but we are getting the hang of things.

We only wish we would start to see even some decrease in seizures for Hazel. It is typical to not see full results until one month to 10 weeks, but thus far we have not seen positive results. In fact, some of her seizures have presented differently and are worrisome. We have been told that as she grows her seizure presentation can change, but nevertheless upsetting. Today, after several days for 12+ seizures we are increasing one of the medications she remains on, Onfi from 1.5 ml to 2.0 mil. Not a huge jump, but hoping this basically calms her brain until we can have this latest intervention of the diet to work.

Hazel will have a long day at the Clinic on Monday December 16 with a 2-hour EEG and appointments with both her Keto doctor and dietician and usual epileptologist. We will look at her whole picture at this point and go from there. In the meantime we will daily continue to stick to this Keto diet for Hazel, her meds, vitamins, urine testing, and blood glucose monitoring until we get results we are praying for or we need to move to the next option.

Hazel is continuing with her speech and occupational therapies. She seems to enjoy them and we call it her “work”. She is also starting physical therapy next week where they feel they can help her balance and safety issues with the large amount of falling she has daily. She is now wearing some compression clothing that is sort of like a bathing suit or leotard under her clothes. This provides stability for some children and helps control or organize the large amount of input their little minds are receiving. We are trying this out and it seems to be beneficial right now. Hazel also enjoys sitting at a little desk with a tray for her play or “work” during speech therapy. We recently learned that our county will be lending one to us for Hazel’s use. We are excited and think it will provide a nice safe place for her to explore toys, as she does in therapy.

As we gear-up for Thanksgiving we are thankful for blessings like this of getting a desk from the county, for having our family visit us from near and far to help us, for our many friends that have been providing amazing meals to us so we can focus on Hazel and our other kids won’t starve, and all the prayers, concern, and support we receive from all who care about us and Hazel. It matters, we feel it, and it is what we try to fill our minds with as we have high hopes and positivity for Hazel.