“This journey has not been an easy one. I had a healthy pregnancy, my ultrasounds were always normal, delivery could not have gone any smoother. We welcomed a beautiful 7lb, 22″ long, baby girl on April 21, 2016, a Thursday. We first noticed a weird movement she did when she was 5 months. It looked as if she was doing a stomach crunch. Both arms and legs would come together in the air, followed by screaming and crying. This would go on for hours. It was heart breaking to watch, and frustrating to not know what was happening. We took her to 2 separate doctors and were told, ‘It’s just gas. Change her to soy milk,’ and, ‘It’ll pass. Her stomach probably can’t process the formula.’ It wasn’t until her dad decided to Google ‘spasms,’ that we began to gain insight into this nightmare. Pages and pages of information with the words ‘Infantile Spasms’ showed up, along with videos of other babies doing the same movement Salma was doing. We finally knew what it was! We called her pediatrician the following morning and got seen the same day. She then told us cases like ours were very rare. Physicians would only see a case like this maybe 3 times in their entire career. She then made us an appointment to see a neurologist in a week. There was no way we were waiting that long.
We knew this was something that needed to be treated ASAP. We took it upon ourselves to take her to the Emergency Room. Once again, we were told it was her stomach and that they would do an X-ray just to ‘double check.’ After showing them videos and pushing to get an EEG done, we were up in a room within an hour of being there. Salma got buds put on her head so they could run a 24-hour EEG test, which shows the brain waves signals try to ‘catch’ the spasms on the screen. The next morning the neurologist walked in and had us sit down to go over the results. I clearly remember this moment. I was holding Salma, waiting for the Neurologist to just tell us what it was. Sure enough, ‘It is Infantile Spasms. We’ll start an aggressive treatment of a steroid called Prednisolone. We’ll see how she does and talk about what’s to come and see if we can wean her off it eventually if spasms are controlled.’ I held her a little harder, with tears streaming down my face. I looked at her little face and promised her she would be fine. We were going to fight this together, as a family, and we would overcome this.
Unfortunately, Prednisolone did not work for us. At the time of weaning her off, the spasms came back. Due to this being a steroid, it is not a medication we could just stop giving her. We had to continue the dosage until she was weaned off completely. It was so frustrating to give her a medication we knew wasn’t doing anything for her. We regrouped with the Neuro 3 weeks after treatment had started. She then suggested ACTH. This by far, in my opinion, was the worst! ACTH is a steroid treatment we had to inject in her legs twice a day. It was so hard to be the hand that hurts your own child. I remember her dad always saying, ‘I’m so sorry baby,’ before giving her the shots. Once again, another failed steroid treatment. This particular one caused Salma at 8 months, to be wearing a size 2T because of how swollen she got. She was always hungry, had trouble breathing and was not able to sit on her own, let alone sleep on her back. She was miserable. I felt like my baby girl was fading away. She stopped smiling, would rarely laugh, and was not doing all the cute things babies at this age were doing. While other moms were bragging about what their babies were doing, the joys of having a new baby were being taken away from me. Salma wasn’t doing anything. In a sense, my baby was somewhat, just there.
Once again, we regrouped with the Neuro who suggested Sabril. It was at this point we were becoming upset at the fact that it just seemed like she was testing things out on our daughter. When we expressed our concern, she said, ‘You know, I am learning about this as I go with you guys. So we’re all learning together. Everything you tell me, I Google it, and discuss with my colleagues.’ It was at this exact moment, something in me snapped and told her that is not something any parent wants to hear and asked her to start the paperwork for a second opinion at another hospital in the Los Angeles area that I had heard had a Children Neurologist. How could we have missed the fact she was a General Neurologist and had no idea what to do?! She was using our daughter for her own research. I was furious! After a few minutes of going back and forth, we told her we needed the referral done within 48 hours – We received it in less than 24 hours.
Two days later we were on our way to see a Child Neurologist. Feeling much better, we walked in with a positive mind set of ‘THIS is where we need to be for treatment.’ We were wrong. The Neuro handled cases based off of genetics. Which by this time, Salma had already had 2 tests done and both had came back clear. The reason for her spasms had yet to be found. He then proceeded to tell us about his friend, Dr. Hussain at UCLA. His exact words were, ‘This is HIS THING. He deals with cases like this all the time. He can definitely help you guys,’ and that he would call him to let him know about Salma. We hadn’t even exited the building before Dr. Hussain called us saying he wanted to see Salma ASAP. We were so relieved. Fast forward 2 days later, there we were at UCLA admitting Salma.
Dr. Hussain knew what he was talking about and gave us the comfort and relief we finally needed to know that our daughter was in great hands. After 2 failed steroid treatments, he decided to start on a high dose of Sabril. I can’t say this worked for Salma, but it did change her completely, for the better! She was still having minor spasms with the medication, but they were not as strong nor as consistent. She was finally able to sleep through the night and the swelling on her was starting to go away. But Sabril on its own didn’t work. We were now on THREE failed steroid treatments! AND at this point THREE genetic testing’s that had all came back clear. I spent my days going back over my pregnancy, what happened? Did I do something? Did I eat something? I was driving myself crazy. I decided to Google search ‘Infantile Spasms’ again, and the first thing that popped up was a page to a woman named Carla Weiler, who has a son with the same condition as Salma, and who are both around the same age. As creepy as it sounds, I took it upon myself to email her. After 3 or 4 emails, she gave me her number to call her with any questions/concerns I had. We were on the phone for over an hour! Going back and forth about our babies and how it started and what medical road we were taking. I finally felt a sense of relief to know we weren’t the only family out there going through this. She then advised me to join Facebook because there was a group of parents with children who have the same condition as Salma.
I was amazed at how many members the group had. Families from different parts of the world, going through the same, if not similar, situation as us. We finally didn’t feel lost nor alone! It’s one thing to have the love and support of family and friends, which we are forever thankful for. But to find a community that understands your fears and concerns, and understands that this journey is not easy, is such an overwhelming feeling. I asked the group questions about treatments their little ones had done. Some replied saying they had failed the same treatments as Salma, others mentioned their little ones were on the Keto diet, while others decided to combine medications. We were now in May 2017, still having minor spasms, still on a treatment that wasn’t working.
When we regrouped with the Neuro we mentioned a combination of Prednisolone WITH Sabril that members in the group had told me about. THIS combo worked! As of May 2, 2017, Salma has not had any spasms (knock on wood), and had a clean EEG in November 2017. However, the MRI and PET Scan did show Salma has slight damage on her left temporal lobe, which we may never know the cause from because it can’t be determined if she suffered trauma in the womb or if it is, in fact, from the spasms happening. There is the chance spasms can return. But we are not focusing on that. We are grateful to have our baby back. She is now 2 1/2 years old. She’s overcome everything they told us she wouldn’t. She’s met milestones we were told she might never reach.
She still has a long road ahead of her as she is currently getting Physical Therapy once a week, Infantile Stimulation once a week and Speech Therapy twice a week. We are currently on a waiting list to see if she qualifies to attend a Head Start School Program, so that she can be around other kids her age. Through all this, Salma has never shown signs of giving up. She has taken every medication we have given her, she pushes through in her therapies even when I can see she doesn’t want to. This little girl is a fighter! I could not be prouder of everything she has accomplished. I’m grateful God picked me to be her mom. She has brought out so many emotions in me. She has shown me to be strong, and that if she’s still fighting to get ahead, I am going to be right there next to her.
This past October I once again turned to Google to find events in the LA area pertaining to the month of November, which is Epilepsy Awareness Month. The first thing that popped up was a 3 day Epilepsy Convention event held at the Disney Hotel, and the best part, IT WAS FREE! I attended the event on the 2nd day and was able to meet amazing people who have loved ones fighting this condition, as well as other neurological conditions. We may never find out the reason as to why this all happened, and I’m at the point where I am OK with not knowing. All that matters is that I have my happy baby back. My life just wouldn’t be complete without her.”
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