Keep Calm and Have Hope

It has been about six months since I posted and Grant has seen some changes in his world; some very good and some not so good. First and foremost, he has not had a seizure since May (when he started on Onfi). Grant also started school in a special education preschool program and LOVES it. I take him to school every morning and he gets to ride the bus home.  We have even seen Grant make good progress in some areas.

Now, for the not so good. Grant has begun show behavior problems. He has always had a bit of a temper and I am sure his age has had A LOT to do with it. Also, our biggest concern is his impulse control and coping mechanisms. Grant has gotten into the habit of banging his head on anything he can find when gets frustrated. He usually bangs his head on the floor, wall, or door. Lately, he has gotten into the habit of banging his head on the windows in the house. He has broken 5 windows so far doing this. Luckily, he has not hurt himself nor have Emery or Cole been hurt from pieces of glass.

Grant had an appointment with his epileptologist yesterday (1/12) and we left disappointed and frustrated. We were disappointed because we were hoping to have one of his medications (Depakote) reduced. The doctor was very reluctant to do this because Grant was having more than one type of seizure. The Depakote worked for a period on all the seizures. Now, it appears it only works on some. This is the reason he was prescribed Onfi. The doctor also suggested Grant see a pediatric psychiatrist to be evaluated and medicated for ADHD. So, as we were trying to get one medication reduced, there is now the high likelihood he will put on a third. I guess it’s a good news – bad news situation. He hasn't had a seizure in nearly 9 months, but what are the drugs doing to his little body?

I will say, Grant is a solid kid. Ever since he was born, he has been solid. His grandfather calls him Uranium Boy because Grant is so solid. So, if anybody can take this, he can. On the other hand, he has been on some seriously hard drugs since he was 22 months old. While the drugs are stopping the seizures, I can’t help but wonder, what else are they stopping?

Ever since we found out about Grant’s epilepsy and he has been prescribed medications, we have been playing a game of compromise. He was getting as much of a drug he could tolerate. If he couldn't tolerate the side effects past the therapeutic stage and it wasn't working, he was put on a different medication. Trial and error, we know this is causing damage but the upside is greater than the downside, etc. Our question has been where is the quality of life? Yes, he isn't having seizures, but the medication makes his hands shake so bad he can’t use a fork or spoon. Yes, he isn't having seizures, but the medications cause him to stumble because he can’t fully control his body the way he wants. Yes, he isn't having seizures, but his medications make him so dizzy that sometimes he can’t stand up without falling down. Yes, he isn't having seizures, but how much further could his development come if he were able to concentrate.

As Rylea and I watch this, we have to wait. Wait for the drugs to work, wait for his development to catch-up, wait for the little boy we see glimpses of to come out.  Then the question arises how long do we wait? How long can we wait? But we wait and hope.

The medical marijuana bill, also referred to as the cannabis oil bill, in Georgia is called the Haleigh’s Hope Act. It is named after Haleigh Cox. She is a 5 year old girl from Georgia who has Lennox-Gastaut Syndrome and is on such high doses of so many medications she can’t even hold her head up. A slight overdose will actually cause her to stop breathing. She and her mother have moved to Colorado where medical marijuana is legal. She has seen tremendous progress. Their current problem has been trying to wean Haleigh off her current medication.  That should tell you something about the medications that are being used. Haleigh's case is a much more severe case than Grant’s, but the questions of quality of life are the same. So we hope for a better quality of life.

There are so many stories about dramatic turnarounds of children with epilepsy after taking cannabis oil. The Georgia bill came very close to passing last year, but some legislators (one in particular), could not see beyond their own selfishness to help those who suffer like Grant. So we hope it passes this year.

Samuel Johnson once talked about the “triumph of hope over experience.” Of course he was talking about second marriages, but I will overlook that for now.  This quote is very relevant to our situation. We have hope in a medication despite our experience with others. We have hope in the situation despite our experience with past similar situation.  

It is not mistake that so many medical marijuana laws are named Hope of some sort or another. Hope is what keeps families like ours going. Hope is what keeps Rylea and I going. Hope for better days for Grant. Hope for a better days for Cole and Emery. Hope for better days for Rylea and me. Just hope for something better. Some days it is hard to find the hope, some days it is damn near impossible, but we always know it’s there.

At this point, all we can do is have hope. Keep calm and have hope.

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