Medication is a tough topic that’s always widely discussed, especially for disabled children like Félip. We wanted to write this blog post to share our opinion on the subject.

Advocating for your child

People often seem to think that Félip’s doctors make all the decisions. They think that doctors are constantly changing his medication or introducing new ones. That simply is not true.

To be able to provide Félip with the best care and treatments, we all act as a team. Everyone recognizes that we, his parents, are the ones that know him best. His doctors and specialists advise us and guide us with their expertise. We trust his team and have confidence in their experience and knowledge. However, at the end of the day, we make the final decisions on everything relating to his care and treatment. It’s up to us to understand and weigh the pros and cons of each medication, treatment, therapy and/or intervention. It’s a lot of hard work to constantly stay on top of all of his medical information and absorb new information as we keep going on this journey with him; but we do think that it’s necessary. If we want to be able to make decisions for our disabled son we need to be informed. We shouldn’t have to convince his doctors and specialists that we know what we’re doing.

That’s what advocating for your child boils down to in our eyes. We’re not doctors or nurses, but we are Félip’s parents. We have ownership of all medication changes that have and will occur. We wouldn’t have it any other way. We don’t want to have anybody else to blame but ourselves if something were to happen.

Early Days

In the beginning, when Félip first started having seizures and stayed in hospital for a little over 2 months (read Our Story if you haven’t already) we were really overwhelmed. We were still trying to process and accept what was going on as well as the reality of what was to come. We did our best advocating for him but looking back we do feel like we could’ve done more and things could have possibly been better. We went through a lot of different medication very quickly in the beginning. We would add new ones without having the time to remove earlier ones. It was hectic. Doctors were scrambling to try to find something that would work and would reduce his seizures.

Even if we think that things could have been better during that time we don’t blame the doctors or feel like they did a poor job. They were acting with the best of their knowledge to try and find potentially life saving treatments for our son; we’ll forever be grateful for it.

Drugs drugs drugs

In an ideal world Félip wouldn’t need any medication at all. We’re really hopeful that we’ll be able to keep simplifying them in the future. We hate having to give him these harsh drugs that usually have a long list of potential side effects. No parent likes to do it. But, the medication he’s had in the past and the ones he’s currently on could be saving his life. There’s a good chance that the only reason he’s still with us today is because of his medication. It comes back to balancing the pros and cons. If a medication has bad side effects but cuts his seizure frequency in half, we have to weigh that information. It’s not a simple task since every seizure has a potential to be deadly.

Many kids and adults with epilepsy can have their seizures well controlled with just a single medication. We’d imagine those people appreciate that drug and our modern medical system. Drugs aren’t all bad.

Medical Marijuana

Medical marijuana is a very actively discussed topic. For disabled and seizure afflicted kids like Félip, marijuana oils are what everyone’s talking about. CBD oil being the most common one. Although, some parents report better results from almost pure THC oils.

We’ve done some research, talked to other parents and even attended an event relating to marijuana oils and kids with seizures. And here’s how we would sum up our current opinion: Not yet.

There’s barely any research available on the short and long term effects of giving medical marijuana to kids of Félip’s age. Everyone’s probably heard or read of the stories coming out of the Unites States about Charlotte’s Web and/or other similar stories about kids having their seizures cured by using CBD oils. What’s not widely known or broadcasted on the news is the stories of children winding up in hospital and even some reported deaths from marijuana oil usage. The problem is that without sufficient research, parents are left on their own. They have to figure out the dosage by themselves and keep a very close eye on their child, not knowing what to expect. Furthermore, in many cases we’ve heard from other parents that it just doesn’t work for their child.

We get the feeling that people often think medical marijuana is a better alternative since it’s “natural”. Note that nothing changes the fact that it is still a drug. For it to be safe for children in an oil form it still has to be chemically processed in a lab with the utter most care and precision. What we do agree with is the fact that marijuana oils in some cases could be a better medication for seizure control than other commercially available drugs. But the fact is we can’t confirm that, it’s dependent on trial and error where your child becomes the guinea pig. And even then, you still wouldn’t know what to expect after some time for long term use effects.

With all the medication that Félip’s been on so far and future ones we might try (not that there’s much left) we know what to expect. They’ve been researched and tested in depth and we have documented dosage information available per age group.

That being said, we are actively looking into marijuana oils and are very hopeful. We’ve found a vendor and we’ve talked to Félip’s team about the steps required to get a prescription for it. We want to be ready to move ahead with it when we decide the time has come.

As always… Love. Laugh. Repeat.