Because I have a five-year-old daughter who has such severe seizures, our medication protocol must be the very best. But I have to be honest, drugs scare me. There are so many side effects. I wish I could have the magic pill. The one that would cure my daughter Remy with zero side effects and we could just live happily ever after. 

Having to decide as parents whether to give our kids drugs or not are impossible decisions. We don’t know the right medications to give our kids, we wish we didn’t have to give them any at all, but we do. How do we make these impossible decisions? If you are struggling with making decisions about your health plan, just know that you are not alone. I am going to share my experience and some tips on how to find more peace when it comes to drugs. 

How I Had To Learn About Drugs 

Remy has a rare genetic disorder called pcdh19. It causes her to have drug-resistant seizures. She has them every week or two. Since nine months old, she’s been having seizures on a weekly to bi-weekly basis. 

When I was pregnant with Remy, I thought one day I would have to have conversations with her about how to resist peer pressure and things that could lead her down a bad path. But when she was born and started having seizures, and developmental delays, and autism, I wasn’t trying to script a conversation on not taking drugs, now I had to script the conversation on why she has to take drugs. The ones that keep you alive.

I share two different stories about the crazy side effects of two different drugs that we tried with Remy when she was really little. Our first experience witnessing what a drug could do to Remy was eye-opening. She acted crazy and seemed completely out of control. The second drug altered her behavior drastically, made her almost completely unresponsive, and it caused her to have a really long seizure that lasted a few days. These experiences really taught me about the power that drugs can have. 

What You Should Do Before You Try a Drug 

Anytime someone tells me I should try a different drug, I always question if it’s worth it. It’s so easy to add one, but it’s very hard to take away. My problem for so long was that I didn’t know the right questions to ask. 

You need to know what you are willing to tolerate. What are you willing to see your child go through for the potential of change? You need to have a line. Some side effects can change our kids. Sometimes we think we should give it to them because it’s something we are supposed to do, but if it’s making your child’s behavior become out of control, should you be accepting that? Is the true quality of life having your child miserable?

Find a doctor who knows what they are talking about. When you don’t have a lot of information about why your child is seizing or whatever else they are dealing with, it really easy to put all of your faith in your doctor. And you should. But the more important thing is that you can trust your doctor. Use your instinct or inner sense when you are talking to a neurologist or specialist, and if they are not solid with their answers or aren’t really answering your questions, then they are not the right doctor for you. 

Ask your doctor A LOT of questions. Things like what are the common side effects? You can always look this up online but it’s good to ask them because they might have a more accurate version based on experience. Other questions include, How do you deal with the side effects? Is there is anything action beyond just taking the medication? How long till it starts working? 

How To Prepare For a New Drug 

Ask yourself, what is the worst and best case scenario? It is good to prepare yourself for the best and worst thing that can happen so you know how to respond and to determine if the possible result is worth it. 

Do your research, but BE CAREFUL. We all know the scary things you can find on google and WebMD. When you are looking at medication, it’s good to have basic knowledge about it, but you can’t rely on everything that you read. 

 Just relax. I stress so much about medication and drugs, but I know I am probably not the only one. What I learned is that nothing has to be forever. It’s okay to try some different things. You’ll know when you have the right plan. You can’t predict the right plan unless you try it. 

How Remy Is Doing Now 

A couple of months ago, we switched neurologists. He suggested we try a new medication. I’ve always been afraid of this medication because of the symptoms of loss of appetite, kidney stones, and dehydration. However, we decided to give it a try. Remy’s been on it for two months. She almost went a month without having seizures, and then she had a cluster. But, as of last Thursday, Remy has been ONE MONTH seizure-free. It’s been the longest stretch that she has ever gone. She may have one today or tomorrow, but I still want to celebrate the times when she doesn’t. If you really appreciate it when your child is seizure-free, you will be able to use the happy moments to help get through the hard times. 

Important Takeaways

  1. Find a doctor who knows what they are talking about and someone that you can trust. It’s so important to be able to trust your doctor when he is recommending new medications and treatments for your child. Make sure they are capable and willing to answer all of the questions that you have. 
  2. You need to know what you are willing to tolerate in your child’s drug side effects. What are you willing to see your child go through for the potential of change? You need to have a line. 
  3. Don’t lose faith. Just because one drug doesn’t work doesn’t mean they all won’t. Sometimes it takes a few tries to find something that works for your child, and that’s okay. 
  4. Make sure to ask a lot of questions. The more the better. If your doctor can answer all of your questions, this will be extremely helpful in your decision about whether to implement a new drug or to remove an old one. The more informed you are, the more prepared you are for whatever will happen when you make a decision. 
  5. Just relax. I stress so much about medication and drugs, but I know I am probably not the only one. What I learned is that nothing has to be forever. It’s okay to try some different things. You’ll know when you have the right plan. You can’t predict the right plan unless you try it. 

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