Hey all and welcome to the final installation of this three-part series depicting my daughter's diagnosis and treatment of Infantile Spasms. In Part One I discussed my daughter's initial diagnosis, hospitalization and recommended treatment of this very rare form of epilepsy. In Part Two I discussed how seeing a chiropractor changed my daughter's life for the better and included an interview with the doctor herself. I feel my daughter's story needs to be told and that it's part of my responsibility as a parent to help other parents who might be going through the same things we went through. I'm glad this series has reached so many people and that it's getting the word out there about Infantile Spasms and the many ways we can treat ailments.In this final installment, I'll be discussing the importance of being an advocate for your children. If you've read the other installations, you know that we were fortunate to get answers so quickly and begin treatment before my daughter had any physical or developmental regression. This, unlike the other small percentages my daughter fell into, was not by chance or by luck. It was because I pushed. And kept pushing until I got answers.
Being Loud
When you become a parent, you inherit more than the task of keeping your child alive. As if that isn't hard enough, to begin with. You're biggest job as a parent (you know, besides all the endless worrying) is to give your child a voice when they have none. It's your job to notice all the little things that aren't normal and make a fuss about it until you get an answer. I don't know how many times I'd go into a doctor's appointment with my "Is This Normal" list. You know what I'm talking about. We've all done it. And that's our job; making sure they're Ok, that we're doing it right.
This is why it is so important to stand up and say something when you know something isn't right. You know your child better than anyone. You see them day in, and day out, you're up in the middle of the night when they can't sleep or are sick. So, when something is happening with your kid that you know is not normal, start making some noise. This is your job and your good at it. Use your parental intuition and get your kid the help they need.
True Stories
I'm going to tell you exactly how me being a major bitch (sorry for the crassness) is the main reason my daughter got diagnosed so quickly. I cannot tell you how many times her neuro team and epileptologists told me I did a good job getting her in so quickly. It was easier said than done. The seizures were happening for a few days before I decided to call the emergency line at the doctor's office. Google had only gotten me so far, and my gut instinct was telling me something was wrong.
Her doctor sounded concerned and wanted me to go to the ER, so I went. Nothing (of course) happened while we were there and they were giving me the runaround. I had no video of the episodes, and they didn't sound like seizures, there wasn't anything they could do for me. So they gave me a referral for a neuro consultation and sent me packing.
I sat at home for a few hours and decided to call the neuro clinic myself. I didn't want to wait for them to call me. This is a legitimate summary of how that conversation went:
Receptionist (R): "I see that you have a referral (which took thirty minutes to procure) and the soonest I can get you an appointment will be in two weeks."Me (M): "That's not going to work for me."
R: "It's standard that we give a waiting period between the ER visit so you can further document any happenings and see your PCP." (which is usually standard after an ER visit)
M: "I don't really care what standard procedure is, you're getting my daughter an appointment for Monday." (it was a Friday).
R:...
M:...
R: "I have an opening on Monday at 8:30."
M: "We'll be there. Thank you."
Most people will tell you I am very friendly, pleasant, and very rarely get snippy with people on the phone. There is a time for being nice and patient, but this was not one of those times. I was not waiting two damn weeks.
I was thrilled I got with the doctor I did. She was young, attentive, and once she saw the video I had taken of my daughter's seizures, she was immediate in her actions. She got us in for an EEG on Wednesday morning.
That first EEG was a nightmare. My daughter screamed through the entire thing, and they wouldn't let me hold her or nurse her. So she laid on the hospital bed and wailed. Once we finally got through the test the administrating nurse told me they would call me with results in one to two weeks. My heart fell. Two weeks? I went home and cried. And the second I got myself together my daughter had a seizure. I picked up the phone and called the Neurology department at the hospital.
M: "Yes, I would like someone to read the results of my daughter's EEG, she had it this morning."
R: "Yes, someone will call you with the results in another week or two."
M: "No, I need my results today. I can't wait that long."
I was put on hold. And I have to give props to this specific nurse because she did just that. She got one of the doctors in that clinic to read her results (they were inconclusive because of all the screaming). They scheduled my daughter for an overnight EEG (even at that point her neuro team was suspecting IS. This type of epilepsy is best diagnosed while the patient is asleep.) two weeks away. They told me not to worry, that everything would be fine, to keep track of any more episodes and we would reconvene soon.
I breathed easier. We were getting somewhere. Then a week later, that very first doctor I met with gave me a follow-up call. She asked how my daughter was and said she read the EEG results. I told her she had one (seizure) a day. She got very quiet on the phone and suddenly told me she would call me back.
Panic.
Within twenty minutes, she called me back and told me they were expecting my daughter at the hospital. We needed to bring her in immediately for an overnight EEG. I explained we already had one scheduled. She knew. She had conferred with the neuro team at the hospital, and they all agreed answers were needed now.
So, it went from me pushing and being rude to them telling me, "Yes, we believe you. Let's get answers."
If I hadn't been loud and pushy and rude, it would've been at least another month (or longer!) before I would've gotten answers. If I had waited the "standard amount of time" and followed all of their "procedures," who knows how it would've turned out for my daughter. I will never regret being loud on behalf of my daughter.
Struggling As A Parent
Sometimes, when our kids are sick, hospitalized, in treatment, we focus so hard on being strong and stoic, that we forget to be human. It's hard having a sick kid. It's hard seeing them with needles coming out of them, watching people hold them down to administer medicine, waiting for test results in the waiting room instead of holding their hand through it.
You feel useless. Up until this point, you have always had the answers. You know what they like to eat, how to soothe them, put them to bed the right way, hold them just so and suddenly, you're not the expert. Someone who doesn't even know your kid is now telling you all these terrible things that you're supposed to digest and accept. This is a new reality.
And it's not fair. What I would've given for it to be me in that hospital bed, for me to take those steroid shots every day for six weeks, for me to have had those seizures. I would have given anything to spare her. She was only five months old. She didn't deserve any of that. She hadn't been in my life that long and these doctors were telling me she might have a tumor, need brain surgery, or chemo; that she might not ever call me "Mama" or walk. She might not have a life.
There is a time for strength. When you get handed this horrific news, you have to be strong for your kid. You have to swallow it down and say, "Ok. So how are you going to fix this?" Because that's what we do. We're gonna make it right. There is a time to be human. I cried every night I was in that hospital with my baby in my arms, thinking I did something wrong. This was all my fault, and it wasn't fair. None of it was fair. I cried every day for six weeks through that steroid treatment, because she was so miserable and I hated myself for not being able to take some of that pain away. And if you think I have been strong and stoic while writing this series (almost a year later) you are sorely mistaken. Reliving this part of my daughter's life is painful. And I think it will always be painful to remember.
For month's after my daughter's ACTH treatment I left the dosing calendar up where I could see it. When it was a rough day, and the kids were driving me crazy, I would look at it and give myself a pep talk. I'd say, "Remember how bad it was? This is nothing. It could have been so much worse. Love them. Cherish them. They're healthy. They're alive." And that's the takeaway, isn't it? I'm grateful. Always grateful.
Thank you for reading this series. I hope that I've helped other families, like mine, that needed answers and support, but couldn't find any. And to all parents out there, remember to keep speaking up, keep being loud. This is your kid. Get the answers. Don't stop until someone listens to you. I'd like to also say thanks to all the teams at Children's Mercy Hospital in Kansas City. Every branch of that hospital we have interacted with has been fantastic. Thanks again, everyone. Please like and share. Until next time.
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