Our son

"Our son looks like a normal, happy, healthy boy. While he is almost always happy and smiling... he's not very healthy..."

November 2009-

I was at work when the phone rang, it was Candice, she was crying and very scared... Philippe was acting weird. His jaw was shaking in a very weird way, his eyes were stuck staring to the left, and his arms and legs were stiff. She said she was picking me up to take him to the hospital. I could not believe what was going on, I couldn't believe this was happening. A few minutes later I got in the car and while she was driving I gave him a blessing. We drove to the clinic (hoping it wasn't a big deal) as fast as we could and while we were waiting for them to take us in he had another 'episode'. We didn't stay there for more than 10 minutes before they sent us to the Emergency Room. They said they would even call them and pre-register us so we could go right in when we got there. At that point, we knew this was a big deal. That was the first of many hospital visits.

For several months, the doctors didn't know what was going on, and didn't have any answers. Later Philippe was diagnosed with both seizures and infantile spasms. He was prescribed a seizure medication but it didn't seem to help him, it only made him sleepy most of the day, lethargic, grumpy, and spaced out. The giggles and squeals of joy soon went away and he was just a very quiet baby. His condition and the fact that he was on medication started affecting his development and we started noticing he wasn't reaching his milestones. We would see how other babies around would start playing with toys, babbling, or crawling, but our little Philippe wasn't. So many times we told ourselves that it was just a matter of time for him to start doing this things... but instead, it was going backwards, he wasn't using his hands anymore. His arms just hung to his sides as if they weren't even there.

I think this is when we heard one of the worst things we could ever hear. We got a call from his doctor and he was VERY worried. We went to his office and he told us about the possibility of Philippe having a Lysosomal Disease. We didn't get much at the moment of what this meant, some sort of disease in which the enzymes in the body can't process nutrients and other things. But one thing did stand out... A LOT... life expectancy was no more than 4 years of age, but most kids die by 2.

So many times we found ourselves crying while driving, in the shower, in our prayers. We went to Primary Children's Hospital in Salt Lake City, where he's had numerous EEG's and MRI's. We fasted. We prayed. Lots of blood work was done as well as a Spinal Tap, and sent to Minnesota, Ohio, and Philadelphia to special teams of doctors and scientist that would test for certain things and basically look for red flags. We would have to wait for three weeks before hearing anything. The results came back negative, he didn't have this disease, but those days were very hard and our prayers along with the ones from our friends and family gave us comfort.

We switched medications, and a month later Philippe started a new (extremely expensive) treatment that was made by a private company out in Florida. Scientists have found a way to synthetically create a chemical used in the brain. It was a steroid based medication and basically Candice would give him a shot in his leg every day for 3 weeks, and then every other day for 3 more weeks. The steroids made him gain a lot of weight during that time, but they stopped the spasms and the seizures. He was so much more responsive, HE WAS USING HIS HANDS AGAIN!!! He could stay in the sitting position if we propped him up.

Once at church we were asked to speak during sacrament, in her talk Candice said...
"our son looks like a normal, happy, healthy boy. While he is almost always happy and smiling... he's not very healthy. Most kids his age can run around and say a few words, and he can't do any of that. He can't sit up by himself, he can't use his hands or arms. And he doesn't know even one word.

Please enjoy your children for the blessing that they are. Never yell at them or complain about them! I hear parents get mad because their kids are running around making messes, getting into everything, and writing all over the walls. I WISH my kid could run around and pull all my dishes out of the cupboards. I wish he could use his hands and color all over the wall. I wouldn't even get mad when I washed it all off. I would probably be smiling because I'm so proud of him."

We finished his treatment with the shots, and it cured him of his infantile spasms, but he was still having "break through seizures", meaning he would seize despite the high dose of daily medication. At this point we met the doctors and decided we would start the Ketogenic diet. Before we could even start it we had to do a lot of research. We read a long book about the diet, seizures, neurology, the way the brain and body work. We also had to record all food and what amount he ate for 3 days. And fill out some papers about all foods he likes, doesn't like, or is allergic to. Then we were given some 'sample menu' of the diet and tried it out for 3 days to see if he would even eat the food.

After we did all of this, about a month later in September we were finally admitted into Primary's to start the diet. Candice stayed with him in the hospital, while I stayed in Logan to keep working.

At the hospital, they had to take blood and urine samples every 4 hours around the clock. On his diet he eats 6 times a day, each at a specific time. All of his food has to be measured on a high-tech scale where each percent of a gram is measured. His dietitian made a meal plan for us, so all we have to do is measure out his food and give it to him, but it's a lot of work. To get the diet started, Candice and Philippe stayed in the hospital 4 days, then they got to come home. Philippe had a bit of a rough start on the diet, so we had to take him to the hospital here in Logan quite a bit to get his blood drawn for a couple weeks.

Philippe has been on the diet 2 months now, and he's doing great. His seizures have decreased. He's more alert and focused, and his speech and development have improved dramatically. He can sit up all by himself now! And he can push himself up onto his hands and knees. Our physical therapist says within 6 months he will be able to either walk or crawl (or maybe both). This is huge, considering when we started his occupational therapy in March he couldn't even use his hands. Candice works with him every day, and he has physical, speech, and occupational therapy several times a week. Now he's grabbing toys, feeding himself, using his arms to push into sitting position.

There is a small downside to his diet, we can't eat in front of him anymore. We have to eat during his nap time or when he's in another room. Candice and I hide in the kitchen to steal a little snack. Good thing he can't walk yet, because if he sees us eating and we don't share he gets mad! But we can't share with him because if he breaks his diet he's almost guaranteed to have a seizure.

Yesterday Philippe turned a year and a half! The doctors still don't know why he has seizures. EEG's, MRI's, urine, and blood work always come back normal. Maybe we'll never know. Strangely enough, the "seizures of unknown origin" are easiest to treat, especially with the Ketogenic diet. After a year of worrying and wondering, we don't care where they're coming from. As long as the diet suppresses his seizures, and he continues to improve in his development. He's supposed to continue this diet for 2 years, and if it works, he should be cured for the rest of his life. Through everything we've grown stronger as a family, and our love has increased immensely, especially for our amazing little boy. Philippe is the best son we could have asked for!

He is AWESOME!!!


Philippe watching Mickey Mouse Clubhouse

On the way to Church

Ready for Game Day

Philippe and Candice on the swing in Cancun
(with his cousin Emilie and uncle Michel)


He giggles every time he sees this picture


He loves spaghetti


"I love my mommy"


All ready for bedtime


In one of the walkers from therapy