Guest Blogger Molly Wiechmann stops by to share her recent experience at a local hospital with her daughter. Molly can be found at the blog Eat Drink & DIY.
My daughter has a genetic form of epilepsy. PCDH-19 to be exact. She had her first seizure four days after she turned 2. For all the craziness and struggles we have had with her epilepsy, I’m thankful that for those first two years of her life we didn’t feel the need to tip-toe around with her. We knew she had a few delays (speech and balance/coordination) but we didn’t have the burden of twice a day medications and worrying about any changes in her sleep. She was healthy and happy, and we were none the wiser.
Fast forward to where we are now. She just turned 4, and she is currently on three different seizure preventative medicines that don’t always work. This weekend was one of the mornings the meds didn’t work. Fortunately (unfortunately), with our daughter, we only ever have to worry about her seizures starting when she is first waking up in the morning. That means she has never had a seizure in the middle afternoon while playing on the playground, which is the fortunate part for us. I am never concerned about her after she wakes up for the day, and for that I am grateful. This last year she has shown us a very set pattern of how her day goes once she does have a “breakthrough” and wakes up seizing.
Girls with PCDH-19 “cluster” when they have seizures, meaning they have several in one day and need medical intervention to stop them. PCDH-19 is a rare form of epilepsy and it’s estimated that only 15,000-30,000 females have it in the US. That is only 0.000046- 0.000092 % of the population. While we were at the hospital this last weekend, we struggled to get her first resident and on-call doctor on board with a medication we were suggesting to stop her seizure cluster cycle. She had been given the medication back in May and from what we remembered, it had worked.
Finally, we were listened to when a shift change happened and a female resident strode into our daughter’s room and introduced herself at 8 pm. Within a half an hour of the start of the new resident’s shift, my daughter was given the medication we had been requesting for over 4 hours. The new female resident took the time to read my little girl’s chart to find the drug from May, talk to the on-call doctor, and get the medication approved. Guess what? It worked! My daughter stopped her seizure cluster after the medication we had been pushing for was given.
The biggest problem last weekend was the standard care to be provided in the epilepsy unit was not the best fit for my daughter. Staff is given rules and guidelines on how to treat patients. These protocols keep care consistent and safe and work well for most patients. As the staff we encountered this past weekend hadn’t treated my daughter before, they didn’t have a context of her and her particular genetic disorder. I did. I knew that a different doctor had tried a medicine in May and I had remembered it working. I knew that continuing the treatment course they had set was not going to make her stop. Next time, I will be requesting (demanding) that same drug from the minute we get to the ER because I know the name of it now and dates it was used.
Knowledge and experience are powerful in getting your voice heard. I may not have a medical degree but I have experienced every one of her seizures with her. I know what it takes to treat her. The moral of this whole story is don’t stop advocating for your child. Whether they have medical issues or developmental delays, you know them best. It is important to keep pushing even though those around you that are “in charge” may not be listening. Find someone who will listen. The health and well-being of your child should not come down to not being heard and listened to.
The last two years have been quite the learning experience for our family. Besides being a strong advocate for your child, the other piece of advice I’d like to instill in you is to be prepared for emergencies. I never expected this to be my life. No one ever expects their child to have complex needs. After frantically trying to leave for the ER a few times, we now have an “Emergency Go Bag” ready and in my car. Please feel free to read about our “Emergency Go Bag” here on my Blog at Eat, Drink & DIY. We have found that by having a bag ready makes our emergencies less stressful. (If that’s even a thing?) We have my daughter’s favorite sippy cup, toothbrushes, and change of clothes ready and in a backpack stashed in my car. With the bag already packed, taking off for the hospital can be done quickly and efficiently, and we know that we will have everything we need when we get there.
Stay strong for your little ones! You know what’s best!