Recently, I had a warrior mama email me who just received the diagnosis of infantile spasms (IS) for her son. She already knew about her child’s brain injury, but he had remained seizure-free for a while. However, due to her diligence, she knew IS when she saw it and took him to the hospital where he was treated with frontline medication immediately.
Then, she did what any parent would do in her situation (I did it, too). I went to Google and began reading anything and everything there was to know about infantile spasms.
This led me into a very dark place. A place with big, scary words like “catastrophic epilepsy,” “mental retardation,” and a variety of others I won’t mention. Maybe you’ve been there, too. It spiraled me further and further into this pit of despair, where I felt like I had lost my baby forever. Not to mention, at this same time, your child is being treated with an extremely high dose of steroids, so you see your happy, beautiful child become grumpy, mad, and sometimes unrecognizable (they will gain a great deal of weight in a very short amount of time).
I’m not here to negate the seriousness of this form of epilepsy. It is VERY serious and if untreated, can have lasting impacts. If you think your child may have IS, stop reading this blog post now and take them to the nearest children’s hospital or emergency room (I’ll be adding another blog post about how to spot IS later).
However, I want to give some advice to those who recently received the IS diagnosis. This is by no means a medical journal, and I am not a doctor. I have not had any medical training. The advice I’m offering is just from a Mom trying to help other parents navigate the extremely difficult place you’ve just been thrown into with no warning (because I see you and have been there). Please, please follow the advice of your doctors, neurologists, epileptologists, specialists, and possibly, surgical teams, and don’t use this post as a guide for your child’s treatments. I am a big believer in trusting the people who went to school for these things!
But, from one mama to another:
This is NOT a death sentence. I realize that right now, your greatest fear may be losing your baby. If you caught this early, and your child is on frontline meds (either ACTH or Prednisone/Sabril) then have hope about the possibility of recovery. Give your baby lots of snuggles, kiss them when they are whimpering in the middle of the night, and know this is a SHORT term pain for a long term gain. Get through the frontline treatment and then re-assess with your medical team. Don’t start worrying about the next treatment or how your baby will be in a year from now. Don’t think about surgery yet – just get through this first phase of frontline treatments. Focus on today. At one point, my dad said, “You have to take this hour by hour, maybe even minute by minute.” Take your child’s treatment ONE step at a time.
Stop Googling. I mean it. Stop. I remember trying to read through medical journals and decipher every single word it said. The thing is – during the times that many of these journals were published, many kids with IS were left untreated for long periods of time. Today, there are a variety of options available for children with IS and you have plenty of doors still left to open to – quite literally – save your child’s brain. Every child’s injury is different, their brains are different, their doctor’s choice of medications and dosages are different – and we have to trust the experts that they know what they are doing. So stop reading about the babies online from 20 years ago – that is not YOUR baby. Your team of neurological experts will decide what is best for your child because every situation is unique.
Steroids suck, big time. Our child grew out of the next two sizes of clothes. He woke up screaming in the middle of the night. Your child may not , but there’s a pretty decent chance there will be some adverse effects of the medicine. I remember Alex did not sleep well, and I went through my entire deep freezer of pumped milk and had to start supplementing with formula. I was a zombie at work and barely able to stay awake. It happens. Find ways to bring joy to your child during this time – he needs to see you smiling. And for the love of all things holy, please alternate taking naps with your spouse or significant other, or get a trustworthy caregiver or parent to come stay with your child for a few hours so you can sleep.
Breathe. I am here to tell you – it will get easier. It will get better. With treatments in place, there is a good chance your baby will smile again and come back to you. I can’t tell you how many times I heard the words “cautiously optimistic” and “I wish we had a crystal ball, but we don’t.” It’s natural to think about the future and begin worrying about every little thing. But the doctors can’t see into the future, and neither can you. You can worry yourself sick about their future, but it won’t be productive. Take a step back and breathe for a moment. Do what is in your power, right now, at this very moment. The rest will come.
Know that there is HOPE. A year ago, we began weaning steroids. I look at my son now, nearly nine months seizure-free, and he absolutely amazes me. He has had to fight harder to do things that “typical” kids do, and it takes him longer to do them, but he’s smart, goofy, playful and most of all, he’s developing. At 17 months, he’s scooting all over the place, waving hi and bye, blowing kisses, and walking with support on his AFOs. He loves being outside, touching the grass and sand and playing in the leaves, and he loves swinging at the park. Honestly, a year ago, I had no idea this is the life he’d be living now. Children are resilient, and your child is no different. They will bring you so much joy, and you will be SO proud of them.
So please, don’t give up hope after you received the infantile spasms diagnosis. Your baby needs you. I know that you feel like right now, this will last forever, but I promise – it won’t. There are always new medications on the horizon, new doctors experimenting with different treatments, and surgeons out there perfecting their craft.
You WILL survive this, and there is hope. So much hope. Hang onto that.
“Yes, my soul, find rest in God; my hope comes from Him.” -Psalm 62:5
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