Our son Spencer was born in 2008 as a full term healthy bundle of joy weighing in at 9 pounds 2 ounces. Everything was perfect as Spencer completed our family as our fourth son. Spencer has 3 older brothers. Around six weeks old we noticed Spencer having a repetitive motion looking up to his left and moving his arm back and forth. After becoming concerned, we took him to the ER and he was diagnosed with partial seizures and started on phenobarbital right away. Once on the medication the seizures stopped, but Spencer always seemed lethargic. He slept all the time and didn’t want to eat. He wouldn’t gain weight and had been characterized by doctors as “Failure to Thrive.”
About two weeks later Spencer started something new, little clusters where it seems his eyes would roll and they would start watering, also his whole body would tense up for a few seconds at a time. We called the doctor immediately and they admitted him back to the hospital for a 24hr video EEG. That determined Spencer had Infantile Spasms.
Our life was immediately turned up side down. All the information given to us regarding Infantile spasms was heart breaking. The statistics we knew Spencer was up against were deflating. The most important thing the doctors said was the spasms had be stopped as soon as possible. Each spasm cluster can cause significant damage to the brain. Many tests were done to try and find the underlying condition related his Infantile Spasms. No underlying condition was found, so he is considered to have cryptogenic infantile spasms.
He was started on Keppra while we waited for approval for ACTH, the treatment known to be most successful for IS. Spencer started ACTH after a few weeks and was having some seizure relief. One of the benefits for Spencer being on ACTH was the weight gain. He started thriving! Eating, Eating and Eating, He couldn’t get enough! Due to a side effect of high blood pressure Spencer had to be taken off ACTH. He was admitted back to the hospital to stabilize his blood pressure. We were back to square one!
The doctors gave us options for his next treatment choice, either the Ketogenic Diet or Sabril (which was still not available in the US, at the time). We decided to order the Sabril from Canada and in the mean time we would start the Keto diet. We were not expecting the diet to work, but we were willing to try anything to save our little boy. The ketogenic diet worked! He started having spasm relief right away! After a month of fine tuning his ratio, Spencer was finally spasm free! He stayed on the Keto diet for a total of two years and in that time he was weaned off of all the other seizure medications. Spencer had an EEG confirming his hypsarrhythmia was gone and also had a clean MRI!
There are so many unknowns that come along with an Infantile Spams diagnosis. You don’t know if your child will walk, if they will talk, if they will even survive past the age 5, if they will ever have seizure freedom, or what their life will hold for them. Spencer has been through a lot in his 5 1/2 years of life and we are so proud to be his parents! He has accomplished so much and is beating the odds everyday. We are happy to share that Spencer has been seizure/spasm free for 5 years.
He started walking in the past year and is starting to say new words everyday. Spencer is in Pre-Kindergarten in a Special needs classroom. We have a wonderful team of teachers, aides, and different therapists helping Spencer gain more and more skills.
Each year since Spencer’s diagnosis, we have taken part of the NORCAL Epilepsy Stroll as Spencer SuperHeroes. We do the walk each year to not only raise money for the foundation and the great work they do, but also to raise awareness for the various types of Epilepsy and the struggles that so many families deal with on a daily basis. Our goal has been to grow and have more people each year. So far we have met our goal, making our team the biggest for the last two years in a row.
We are so proud of our team! It is an honor to have such great friends and family helping support Spencer and his journey with Epilepsy! Spencer is our Superhero!