Ivy's journey with infantile spasms
It was by divine intervention that we determined Ivy was having infantile spasms. Just a day or two before they started, I saw an Instagram post that stuck in my mind, and when we first saw Ivy have spasms, my thought immediately returned to that post.
I was confused about whether an ER kind of response needed or not. My pediatrician assured me that they were rare and it was likely something else, but after seeing my videos she was concerned as well, and we were advised to go to the ER.
It was while I was in the hospital for the EEG that I saw a post from another mom on Instagram who added me to a support group. I was quickly connected with the group and found an amazing support that I didn’t even know I needed.
The videos I had taken and an EEG verified the IS diagnosis, which was so scary, but I was glad to be doing something to help her. We started on high-dose prednisolone immediately. Ivy struggled with the meds (she slept constantly and was despondent and grumpy), and her voracious appetite made her put on weight very quickly. We were told an incorrect dose of meds initially, so her blood pressure went through the roof, and her glucose was high. She started on blood pressure meds and took that until she weaned off the steroids.
Unfortunately, the steroids didn’t work for her, and the spasms continued and even increased some days. It was terribly disheartening, and it was difficult to understand why others were getting better and she still wasn’t.
Throughout all of this, I was able to send messages through the group and ask questions to find others who were experiencing similar things. It was such a comfort and brought me hope on more than one occasion that we would make it through this seemingly endless tunnel.
Finally, at the tail end of her steroid treatment, we got approval through insurance for the new med vigabatrin (which the doctor had recommended all along). We saw one final spasm when Ivy got sick with RSV followed shortly by pneumonia, but we haven’t seen them since.
We got an “almost normal” EEG in February of 2023 and we celebrated with the neurologist as we made a plan to have a follow-up EEG two months later with the hopes of weaning off the vigabatrin at that point.
Ivy's spasms were gone, but she did go on to develop myoclonic seizures.
While this was disappointing, we are so grateful that Ivy hasn’t had a return of the spasms that affect her brain development. We continue to pray that the ongoing seizures will be nothing more than a minor inconvenience in her life. I will also forever be grateful for the support of others who have gone through this journey as well and who gave me hope, comfort, and who have become my friends (even without ever having met them).
This is a journey I would never wish on anyone, but it has shown me how strong my little girl is and that she can overcome anything. Ivy’s journey will be unique and not always a smooth road, but through it all she will always be a light to all who come in contact with her.
Today she is doing amazingly well. Her myoclonic seizures are controlled with meds. She is full of smiles and sass. She’s sitting up, rolling, and army crawling all over. She is a little princess, adored by all of her siblings, and is a light to everyone she meets.
- Michelle