From Bad to Worse

Yesterday Bug had an EEG and followup doctor appointment with her neuro right after. The EEG went well and she slept at the right time to get a clear reading.

When we saw Dr. Coleman, her pediatric neurologist, he looked solemn and said that he had bad news.

He proceeded to tell  Michael and I that Bug's background has changed and is no longer normal. Instead, it is spiking even when she is not seizing and there is also some slowing in activity. And now the spike activity is happening on both hemispheres rather than just the right side like previous EEGs.

He said that this is noticeable with Infantile Spasms but that her seizures don't physical appear to be Infantile Spasms. Her neuro told us that she is experiencing spasm seizures. This is when she has her head drops and includes the seizures when she opens her eyes, makes wide arm movements and smacks her lips while blinking and opening eyes wide.

The treatment for these spasm seizures is to wean her off of Trileptal within the next 10 days because it does nothing for this seizure type. It is not hurting but it isn't helping. During that time we have increased her diet ratio from 3:1 to 3.5:1 (more fat and less carb). The Ketogenic Diet has shown great success is reducing spasm seizures for so many kids so we are focusing on getting her ketone levels really high again with more fat in the meals. Her ketones have been moderately high for the last few weeks but are only occasionally at their highest anymore.

We will give the 3.5:1 ratio 1 full week and if she is still having the spasm seizures we will go up to a 4:1 ratio (if her body is tolerating the diet, that is). And if she continues to have the spasms after 1 week on 4:1 then we will wean her off the diet and start a new treatment.

The new treatment options are this:

Sabril: Medical name is Vigabatrin. It is a short term medicine that Rayleigh would take every day for 2-3 months. It is specifically for spasms. Sabril can cause liver problems, irritability, sleep issues, and there is a more common effect of visual impairment. It is known to decrease her peripheral vision slightly. Like I said, she would take this medicine for 2-3 months (while continuing Clobazam) and then she would be weaned off the medicine and Clobazam would be the maintenance medicine. Supposedly whatever results she gains while on Sabril will remain when she is weaned off the medicine and stay on Clobazam.

ACTH: This is a steroid. It would a shot, that Michael and I would give her daily for 4-8 weeks. She would be on the steriod and Clobazam at the same time. It is similar to Sabril in that they are both short term but should produce long term results. The ACTH is known to significantly suppress the immune system so the neuro has already advised that if/when we go down this route that we should keep Bug in as much as possible during that time. The steroid also has side effects of causing high blood sugar levels, irritability, and sleep issues. The steroid requires a hospital stay to start so they can show us how to do the shots and monitor her levels to make sure that Bug's body is handling the steroid alright.

Rayleigh will have another EEG in 2 weeks if the spasms start to look controlled by the diet or 4 weeks if we need to start one of the treatment options.

Her neuro said that is completely up to Michael and I as to whether we'd prefer to try the medicine or the steroid start.

The worst part of this visit with the neuro was not this information though. The worst part, was that the neuro told us that Bug will always be developmentally delayed. There is an extremely high chance that she will never catch up. There is a slight possibility that she may still sit up, still talk and even may walk in her future. Chances of her talking before age 4 are very very slim and chances of her sitting or trying to walk won't improve until 5-8 years old. Michael and I were just devastated. Yesterday was a very hard day for both of us. The only thing that cheered us up all day was that Bug kept giggling. Like she was trying to tell Mommy & Daddy to be happy and that everything will be fine.

We are in a much better place with all of this today. I don't know why this happened to our baby girl but we will NEVER stop loving her and we do not love her any less than we did before. She is an amazing little girl and just a ball of love. Bug is a joy to be around.

Tomorrow is Christmas and we will focus on making this a wonderful holiday for our baby Bug. We will shower her with gifts from Santa to entertain her and hopefully help with her development and intrigue her to want to play!

Merry Christmas to all! May God bless your family during this holiday season :)