Two months ago, we were going through a very scary time. We were in the hospital with our youngest daughter, Sadie, who had just been diagnosed with a very rare and catastrophic type of epilepsy called Infantile Spasms. We had a lot of scary unknowns- if and when her development would be affected in any way, how long her seizures would take to respond to treatment, and what kind of side effects the medications she was taking would have on her little body. It’s hard to describe the wave of emotions you go through as a parent when your child is diagnosed with something that could cause lifelong consequences. I went through periods of denial and sadness, but also periods of acceptance and perseverance. She needed me, and I had to let go of fear and anxiety and hold on tightly to faith and find a strength inside of me I didn’t know I had.
A lot of people have come up to me asking if Sadie could just grow out of this. Some have told me that they too had seizures when they were little, and they went away as they got older and now live a perfectly normal life. Infantile Spasms (IS) is a little different. If left uncontrolled, development is largely affected and can be significantly delayed. Some of these babies regress back to a newborn state and have a difficult time catching up. In multiple studies done in babies with IS, overall intellectual and neurodevelopmental outcome is poor. Sadie’s prognosis seemed grim at first. Some babies end up doing 100% okay with absolutely no delay in development. Unfortunately, this happens in only about 10-20% of cases. The spectrum is wide, going from mild mental retardation to severe developmental delay with severe epilepsy. It was very difficult to hold my seemingly normal, healthy baby and think that her little brain could have already been impacted with so much damage.
Now, two months later, we have a little more insight on IS and what Sadie’s prognosis might be. Typically, development is less likely to be severely impacted if there is no found cause for her IS. Fortunately, no cause has been found yet for Sadie. Her MRI was clear along with all the blood work that was done. We are still waiting to hear back from genetics, but her neurologist seems to think that it will come back clear as well.
I’m a science nerd, and have been reading whatever literature I can find to educate myself more on Sadie’s condition. Not many studies have been done on babies with this type of epilepsy, but I was able to find the main factors that can lead to a more favorable developmental outcome. They are:
- cryptogenic cause (no known cause)
- Age of onset of spasms greater than 4 months old
- No partial seizures accompanying the spasms
- early onset of treatment
- early and good response to treatment
What I found above didn’t make me feel any worse about how she would do long-term, but it didn’t make me feel any better either. So far she seems to be in the cryptogenic group. We also started treatment very early and aggressively, and she responded fairly early (within 2 weeks) and the spasms have been controlled so far on the medication she is taking. However, she was very young when her spasms started- only 11 weeks old when we received the diagnosis, and I’m guessing she was having these spasms for at least 3 weeks if not more before I took her to the ER. She was still so little, I thought the seizures she was having were normal, involuntary newborn reflexes! She also had partial seizures with the spasms. It can be easy to focus on the negative, but I’m clinging to the hope that because we got her diagnosed early, before we even started noticing a delay in her development, she will be in the small percentage who develop normally with no return of epileptic spasms.
So far, this baby has been nothing short of a miracle. We left the hospital feeling very discouraged. She was still having multiple, long spasm episodes every day. We would increase her medicine, and she wouldn’t respond. Her follow up EEG was still abnormal after being on medication for two weeks. I felt as if we would get one blow after the other. But Sadie wasn’t discouraged. She wasn’t going to let epilepsy get in her way of crushing milestone after milestone, and she certainly wasn’t going to let it break her spirit.
As soon as we got home from the hospital, she rolled over for the first time. I couldn’t believe it, she was still having multiple spasm episodes per day and yet her development stayed 100% on track. We were told this would not happen. Her personality didn’t change, it got better. She is the happiest baby with the sweetest temperament. She’s taught me so much in her short life, and her strength amazes me every day. I know she doesn’t know any different, but she has every right to be mad with all that she’s been through! She’s faced all of this with a brave smile, and I’m learning through her that no matter what life throws at you, positivity and perseverance will get you through it. Negativity and worry only make things worse.
How is our little miracle baby doing now? Amazing. After two weeks of being on her medication and having long, multiple seizures and spasms every day, they finally stopped. For good. She’s meeting her milestones. She’s fully engaged with us, loves to babble, is fascinated with her big sister (and tries to keep up- so much that she was even attempting to crawl toward her the other day!!), has a strong tone and great head control, and flashes us big gummy grins nonstop. I’m most thankful for the smiles and giggles, some babies regress so much with IS that the smiles stop. With her bubbly personality, I think that would be the hardest for me.
Last week we had a follow up EEG. For the first time, it’s CLEAR. Those chaotic brain patterns have returned to normal. Ecstatic doesn’t even begin to describe the feeling I had when her neurologist read me the results! Her entire medical team was so happy that day, they were grinning from ear to ear. Sadie rocked her physical exam, gave them full eye contact and acted exactly how a four month baby should. They don’t see this often. It was an early Christmas present for all of us.
I’m amazed at the miracle that happened right before our eyes. Specific prayers were given, and specific prayers were answered. Not all babies respond as well to treatment as Sadie has. Most babies (>90%) have obvious developmental delay, most before the spasms even start. Even with her seizures worsening, she was still progressing. She was covered in prayer by so many people, and I’m so grateful. Things should be much worse, and I was fully prepared for that. God has been so good to us.
I’m thankful for so much this holiday season. I’m thankful for our sweet and faithful friends and family, and even for people we’ve never even met, who have been so faithful in lifting our baby girl up in prayer daily. I’m thankful for moms who also have children with epilepsy and have reached out to show me support. I’m thankful for the broken relationships that have been mended out of this. I’m thankful for a supportive husband, who agreed to let me stay at home full-time with the girls- just one week before all of this started. I couldn’t imagine balancing this and work right now. I’m thankful for my precious first born daughter, who is so loving and caring toward her little sister. She has proudly taken on the role of her protector and I’m am blown away with how affectionate she is with her. If Sadie has any problems down the road, I know Carli will be right there beside her, helping her in any way she can.
There are still a lot of scary unknowns. Sadie isn’t in the clear yet. In two months, if we get another clear EEG, we will start to wean her off her medication. This is really scary to think about, because she could very well relapse. Then we start this process all over. We still don’t know how these little seizures could affect her brain long term. There’s still a great possibility that she could have a learning disability or other neurodevelopmental delays down the road. That’s not something we can focus on right now though. We are just taking one day at a time, and enjoying our precious baby girl as much as we can.
My last post I shared a video of Sadie having one of her spasm episodes. Here she is now….happy, healthy, and seizure-free!!!