Infantile Spasms. My heart drops directly into my stomach when I say that term out loud. I often avoid saying the actual words out of fear that speaking it will bring them back into our life. I have endless amounts of emotion in regards to this diagnosis.

     On January 17, 2017, I noticed Conner having some very subtle eye and mouth movements. I grew more concerned and decided to video it which I believe resulted in a quicker diagnosis. If you see something concerning video it (see below)! I sent the video to a few of my trusted medical friends. They agreed that it was concerning and encouraged me to call Conner's neurologist and pediatrician. We were scheduled for an EEG the following day, but thanks to the advice and encouragement from one of Conner's biggest fans (Conner’s neonatologist), Conner ended up getting admitted that night. A video monitored EEG confirmed my biggest fear - epilepsy in one of the worst forms. Hypsarrhythmia is the chaotic waveform that appears in conjunction with infantile spasms. It is a rare diagnosis as the resident following Conner while inpatient was not even sure what hypsarrhythmia was or what it meant.

     Infantile Spasms can be mistaken for a baby being startled or lacking head control at times (head drops). It often goes undiagnosed for a time which allows the spasms to cause more and more damage to the child. It can be devastating…and the journey gets more difficult.

     Researching infantile spasms was nothing short of depressing. I'd encourage you to read minimal information on the internet about infantile spasms. I found an  Infantile Spasms Community Discussion Group  on facebook that was helpful for me. I was able to learn more about the diagnosis, find some positive stories and reassurance that we weren't the only ones going through this. Focus the research on where to seek treatment (seek treatment as quickly as possible) and research the treatment options so you know more about them and have your thoughts on what is the best option for your child. Go to your child's neurologist with any and all questions you can think of - for me, the more prepared I feel, the easier it is to handle a new diagnosis.

     Treatment options for Infantile Spasms are a gamble. As with many medications, the options available can cause significant damage in other aspects. On top of that, there is not one medication that is guaranteed to work to treat the spasms. After a long discussion with Conner's epileptologist, we decided to pursue adrenocorticotropic hormone (ACTH). This medication is injected into the child's muscle. One of the bigger concerns with ACTH is that it can cause hypertension. Naturally Conner already had hypertension due to only having one functioning kidney. We decided to roll the dice in hopes that we could increase Conner's hypertension medication to help, if needed. Conner has an amazing nephrologist that saw him weekly (sometimes more often if his blood pressure BP was increasing) and she carefully monitored and adjusted his medication. Before ACTH started, Conner had plenty of room to increase his BP medication, which was another reason we felt comfortable selecting ACTH as the treatment over some other options presented to us. 

     I am forever grateful that the 2 weeks of ACTH injections with a 6 week wean of oral Prednisolone has worked for Conner so far. Conner has multiple EEGs a year and each time it takes a big toll on us because we often worry that we've been missing something and the results will be negative. Conner's EEG will never be "normal," but I keep a very close eye on him and we take comfort in seeing him make progress both physically and intellectually. 

     What I was not prepared for was everything else that came with ACTH and prednisolone. The first being that I was tasked with giving Conner the injections daily for two weeks. It was a big hurdle that I had to get over because my son needed these injections if I wanted him to have any chance at a quality life. The second biggest change was Conner's eating - his appetite increased significantly and feeding him became fun instead of stressful. However, as quickly as Conner's feeding improved, it declined just as fast. We struggled to get 300-500ml in Conner each day (Should have been getting 700-800ml). Somehow he remained hydrated and maintained his weight through our struggles. No one could tell me exactly why his eating declined at an alarming rate, but I have my theories.   The last thing I couldn't fully prepare myself for was the moon face that comes with the use of high dose steroids. Conner gained about two pounds while on steroids and I swear 99% of that was in his face. Conner's face ballooned up over night, or so it seemed. His face eventually returned to normal - he made a very cute chunky baby, but I prefer our skinny Con-man any day of the week! 

     Often times you become so focused on what is happening at that very moment that you don't think about or care about the consequences. Even knowing what I know now, I would have still picked the same treatment plan we did. Our goal was to stop the spasms as quickly as possible because we knew what kind of permanent damage could and would be caused by the spasms not being controlled. 

     As a special needs parent, you’re often faced with major medical decisions. We manage by listening to professionals, talking with those around us and researching…so much research. I am often reminded that I know Conner the best – which has given me the confidence to make such big decisions that come with major potential side effects.