My last post provoked more questions so I will answer them here.
1. Epilepsy is a generic name for a disorder. Lennox-Gastaut is the specific type of seizure Larkin has. Kind of like cancer is a name for a disease but there are specific names for types of cancer. Types of seizures are diagnosed by EEG’s which show the spike and wave of a seizure pattern.
2. A seizure pattern in Larkin’s case is best described as chaos and noise. The spike would fire from the back right side of her brain and the left front side of her brain would catch the spike and fire it around the left side and so on. So a constant circular firing (yes this is all technical Momologist terms not Neurologist terms as they are too hard to understand) 😉
3. Larkin’s seizures are always there inside her brain. What we have control of is the clinical side meaning that she doesn’t physically show signs of seizures. Her EEG is cleaned up but we haven’t done one for a year now and we don’t care to. You treat the child not the EEG and as long as we have clinical control she is considered “cured” omg that word makes me laugh because I am sure her EEG is still abnormal. We do know that she seized constantly in her sleep so she didn’t really ever “rest” until we gave her Felbamate.
4. Larkin’s underlying cause of the seizures is Down syndrome however it is not common among children with Down syndrome. Typical kids can have the disorder but it is typically caused by a toxic reaction to the Pertussis vaccine. Other children who have LGS or Infantile Spams usually have some type of injury either by birth, stroke or syndrome. Larkin is further delayed because of the seizures but we hope that over time with control, therapy and drugs her progress with take off.
5. The only children who recover from Infantile Spams are those with Down syndrome. Docs don’t know why. Larkin did not but she is atypical.
6. Felbamate is the drug we give her along with Vigabatrin. She also takes thyroid. Calcium phosphate and a multi-vitamin to support her body while she is on the Ketogenic diet.
7. Ketogenic diets are easy enough. She eats most anything we do except I input all the nutrition information into the computer and weigh out what is acceptable for her to eat. For example this morning she ate 13 grams of watermelon, 20 grams of cottage cheese and 9 grams of chicken and then she drinks 56 grams of heavy whipping cream that I add water to so that is her “milk”. The only food that I haven’t been able to work into the diet is corn. Her diet is heavy on fat and zero sugar. Abnormal cells in the brain can only use sugar for fuel. Abnormal cells cannot convert fat into energy so the idea is to rob them of their fuel source and they will die. No McDonald’s is not on the menu because it is filled with sugar in addition to fat.
8. Chase is doing really well with it all. We as a family are doing well and we have a lot of support. It sounds overwhelming but you get through it and appreciate how fragile life really is. There is always someone who is going through something worse so I fake a smile if I have to because it is what it is and life moves on.
9. Forgot this one when I posted this morning. Vagal nerve stimulator surgery. Last option brain surgery. Don’t ask me to look at it anymore but at least I answered you.
One of the most annoying things for me is the counting, measuring, and weighing. I imagine the diet she is on requires the same type of tedium.
We have lists on the fridge with weights and measures. And of course each brand is slightly different.
My daughter turned to me and said “Do you remember before I had diabetes and I could eat whatever I wanted whenever I wanted?”
Any recommendations on a good scale?
McDonald’s is good for you. Everyone knows that.
Amy you are so humble. It amazes me with all you have to go through. I couldn’t even imagine on top of the many things also managing a strict diet. You are a great parent to both your children and do such a wonderful job with all that you have on your plate. As I said before you are such an inspiration to push people like me to keep up that battle. I admire your strength and your courage to face those that try to bring us down. You go girl!! Please tell Chase Happy Birthday from the Bates family and always take care!!