I looked back at the blog and realized we never put on there
what has happened in our life since Jaron was diagnosed with a rare form of
epilepsy, known as Doose. Below is explanation of what has happened over the past 8 months
In March, Jaron got sick. He started running a fever and had
a febrile seizure (a benign seizure caused by fever). Since he was already
diagnosed with mild form of epilepsy, I knew being sick can cause extra seizures and didn’t
worry about. He went the rest of week with no issues. However, a week after he
got sick, our life changed. On March 10th, I was holding Jaron on
the couch before leaving for church, when he had a tonic clonic (commonly known
as a grand mal). Thinking it was from him being sick again, I didn’t worry, but
decided to keep him home to monitor him. After the first tonic clonic I laid
him back in bed. He slept for 2 hours. When he woke up, he had another tonic clonic
seizure. This time I called his neurologist and we were told to take Jaron to
hospital to see if there was anything seriously wrong with hims. While in the
emergency room, Jaron was not acting himself. He wouldn’t eat or drink
anything. He was super fussy and nothing made him feel better. It was like he
was confused about where he was at and who was with him. His brain was not
functioning right. After spending all afternoon in the emergency room they
decided to admit Jaron for observation.
When we got to his room we talked with the pediatrician. She
basically thought we were over reacting. After all, he is a kid with epilepsy
who is sick. Of course he would be having seizures. While talking with her Jaron fell asleep on a
chair. By now it was 7pm. It had been a long day, so I laid him in bed and put
myself to bed. Jason went home to take care of Josiah and to sleep. At 8:30,
Jaron awoke again and had his 3rd tonic clonic. The pediatrician
decided 3 tonic clonics in one day was not a good thing, so she called up to
Doernbecher Children’s Hospital to ask their neurologists what to do. Jaron was
given a medication through IV.
The next day we went home. We took it easy and we all slept
a lot. Tuesday morning Jason went in to check on Jaron. A few minutes after
being with Jaron, Jason runs into our bedroom with Jaron in his arms. “I think
he is having more seizures.” I looked at Jaron. He wasn’t shaking or twitching.
He looked fine. “Why do you think he had a seizure?” I asked. “Because when he
was sitting in bed, his face went blank and he fell over. Like he passed out
for a moment.”
Unfortunately, Jason was right. That “drop” would be the
first of hundreds of drop seizures Jaron would have. Over the next 2 months
Jaron’s drop seizures increased. He also would have absence seizures where he
would space out in mid sentence. We added a new medicine which would help for a
time, but then the seizure count would go up again. The neurologist we were
seeing seemed too busy to take the time to help us. As we watched our son fall
and hurt himself with not a lot of help from the neurologist, I decided to do
my own research. I learned about a syndrome, called Doose Syndrome. It is a
rare and hard to control epilepsy. It fit all the characteristics of what was
happening to Jaron. In my research, I learned the ketogenic diet was the most
effective way to treat the syndrome when 2 medicines had already been used and
were unsuccessful. The ketogenic diet is a high fat, adequate protein, and low
carb diet. It causes the body to enter
into a state of ketosis, where the body uses ketones to feed the brain rather
than glucose from carbs. For unknown reason, this often helps in controling
epilepsy. The hard part about this diet is that all Jaron’s food would have
calculated to a certain fat to protein/carb ratio. His food would also weigh to
the tenth of gram. In other words, it was going to a lot of work. I told Jason what I had found
and we began preparing the family for the strict changes in Jaron’s diet. We
contacted Jaron’s primary care doctor and asked her to make a referral for
Jaron up to Doernbecher Children’s Hospital. We wanted to see Dr. Wray, head of
the ketogenic diet clinic. We were told 3-4 weeks to wait, which is really fast
in the pediatric neurology world. Often it can take months to get in. We were
content to wait knowing we had a direction. While we waited we found out there
was another family in the area whose daughter was on the diet for her epilepsy.
On May 4th, I went over to their house to talk with them about what
to expect and how to get started. Upon leaving their house, Jason called and
said Jaron was having a drop seizure every 2 minutes. He had over a hundred so
far that day. We decided enough was enough and headed to the emergency room.
The doctor there agreed Jaron needed help and needed it now, so he transferred us
to Doernbecher the next day. At Doernecher, the doctors confirmed what I
already knew. Jaron has Doose Sydrome and the ketogenic diet was a good
treatment plan for him. We were at Doernbecher for 5 days as we started Jaron
the his new diet and learned how to calculate his food.
I would like to say Jaron responded immediately to the diet,
but that wasn’t the case. While his seizures did go down from 100+ to 40/ day
Jaron was still hurting himself. During this time Jaron put his front teeth through his bottom lip
several times, he always had bruises on his face, and we made him wear a
helmet. 3 months later after tweaking the diet and medicine we started seeing
seizure free days. It was the longest 3 months of my life. Jaron had his last drop seizure on August 13.
He went two months seizure free. Now he goes 2 weeks seizure free and then has
2 or 3 tonic clonics around 6am in the morning. But we haven't seen a drop seizure in 3 months. While we would like Jaron to be
completely seizure free, we are grateful that he is no longer falling and
hurting himself and is living a normal life now.
Since Jaron is on a diet that can have serious side effects
if not monitored, Jaron has to see the neurologist every 3 months to make sure
his body is handling the diet okay. We have another appointment in December and
we will discuss other options to get Jaron completely seizure free.
As I wrote earlier, Doose Sydrome is hard to treat.
Sometimes treatment works for awhile then quits working. We ask that you
continue to pray for our little guy, that he can be seizure free. If we can get
total seizure freedom for 3 years he can go off his diet and medicine and be
seizure for the rest of his life.
Thank you to all our friends and family for their love,
prayers, and support during this stressful time. We couldn’t do it without you.
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