Our daughter, Gabriella Noelle, was born on December 27, 2012. She was 19 3/4″ long, she weighed 8 lbs., 2 oz., and, by all accounts, she was a healthy baby girl. We took Gabby home from the hospital, and we spent the next several months staring at her and watching her do all the things that a “normal” infant does.
I distinctly remember Gabby’s 5-month check-up with her pediatrician. It was on or around May 27, and I remember reviewing the checklist the pediatrician’s office gives parents to see how Gabby was progressing. I was excited to see that she was ahead of schedule on most of her developmental milestones. As parents, you’re always careful not to take anything – particularly your child’s health – for granted. But Gabby was doing just fine. She’d had no problems at all up to that point, and had only even had one little cold. We were pleased to be watching our little baby learn and grow so well.
A few days later, on Sunday morning, June 2, 2013, Gabby woke up around 7:15. She was, as usual in the mornings, ready to eat. I got up with her, took her to the living room, and began feeding her a bottle. As she lay there in my lap gobbling up her bottle of milk, I noticed something a little odd. Every few seconds, without missing a beat on her bottle, Gabby would stretch her arms out to her side. It looked to me like she just had a little chill go down her spine, or like the little “startle” reflexes that babies do while they’re sleeping. It did not look at all like anything I should worry about. Still, she did it six or seven times that morning, and I guess my mind told me to remember it. Later that afternoon, my wife Missi was feeding Gabby another bottle, and she noticed the same exact thing. She mentioned it to me almost in passing, and neither of us thought it was anything serious.
The next morning, I called Gabby’s pediatrician because she’d had a small sniffle over the weekend. It wasn’t a big deal, but, like I said, she’d hardly been sick up to that point, so we figured we would take her in just in case. While Gabby and I were in the waiting room, she did the thing with her arms again. This was, as best I could tell, the third time in two days that she had done it. It only lasted 30 seconds or so, so, once again, I didn’t really worry. I got Gabby back to see the doctor, and he examined her for a cold. Her nose was no longer running, she didn’t have a cough, so she was OK. He asked if I had any other concerns, and I mentioned the arm stretches. At this point, I didn’t even know if I should call them reflexes, stretches, “tics”, or what? I only mentioned them because I was there. They hadn’t alarmed either my wife or me enough that we would have taken her to the doctor for just them.
When I described the movements to Gabby’s pediatrician, he asked me several questions about their frequency, their duration, and their effect on Gabby. I did my best to describe them, but without seeing them for himself, he said he couldn’t really diagnose them. I still wasn’t too concerned, so I took Gabby home. Later that afternoon, Gabby started having the spasms again. This time, my phone was close enough that I could reach it, so I grabbed it and started recording. Here is the video I recorded:
Once again, the spasms didn’t last very long, and, once again, they didn’t seem to bother Gabby at all. They seemed so benign, but still…this was happening too often to be “nothing”. I didn’t think they were anything serious, but I still wanted to show the doctor what what happening. I called the pediatrician’s office and told the nurse that I had a video, and the doctor told me to bring it in. I got back to the doctor’s office and two of the pediatricians had a chance to see the video. They agreed that it could be just a minor reflex, but they also mentioned that it could be something called infantile spasms (IS). They went on to tell me how rare IS was, but recommended having an EEG to rule them out. They scheduled the EEG at East Tennessee Children’s Hospital here in Knoxville, but the soonest they could get Gabby in was on June 13 (ten days away).
Missi got home from work just a few minutes after Gabby and I returned home from the doctor’s office. I told her about the “arm movements” and about the scheduled EEG. Of the two of us, Missi is most definitely the “worrier”. Still, I decided I would do what I always tell her not to do: I decided to Google “infantile spasms”. I had no idea just how much our lives were about to change.
The first link that appeared was for a website created by a family with a child with infantile spasms (much like this site). I started reading their story, and almost immediately backed out of the site to go find something more optimistic. I clicked the next link, which was for the Child Neurology Foundation. This link gave me some good information without a personal testimonial, but it was still not the information I’d hoped to find. I decided to keep trying to find something that was going to tell me, “It’s OK. Gabby will be fine. These little arm movements are no more threatening than they appear. Relax.” But the next link led me to another family’s story of their child’s struggle with IS . There was one thing that I couldn’t help but notice that every link had in common. Everything I learned about infantile spasms in those few minutes told me this: If you believe your child has IS, have an EEG done immediately and begin treatment as soon as possible. As I sat there remembering that Gabby had an appointment for an EEG in just ten days, suddenly ten days seemed like ten years.
I rushed back down the hall to our living room. Missi was on the couch with Gabby in her lap, and Gabby was smiling and looking like she didn’t have a care in the world. If I based our next move on her appearance, we would have sat there and had a normal Monday night. She looked so…”normal”. She didn’t look sick. She didn’t look scared. She didn’t look like she had anything wrong with her at all. I almost stopped and sat down so I would avoid scaring Missi, but at that moment I didn’t care about scaring her. I grabbed my shoes and my keys and told Missi to get Gabby’s bag. I did my best not to sound “frantic”, but I doubt I pulled it off. Missi was asking me what I’d read, but I was just trying to get downstairs and on the road as quickly as possible. I told her that we had to go to the emergency room, and that Gabby needed an EEG that night. Before that afternoon’s visit to the pediatrician, I can honestly say that I had no idea what an EEG even was. I’d heard of it, but probably only on “E.R.” or “House”. But at that moment, I knew that it was critical that we get our little girl to Children’s Hospital.
We rushed downtown to the hospital, and I dropped Missi and Gabby off at the ER door. I parked and ran inside. I was terrified. By the time I’d told Missi about IS, I know she was scared to death as well. It was still so unbelievable that anything could be wrong. Gabriella wasn’t crying, she wasn’t whining, she wasn’t doing anything differently from any other 5-month-old baby. Even as we were frantically explaining to the hospital staff why we were there, they seemed to all be looking at us like we were crazy. They were kind, and they treated us professionally, but they all kept looking at Gabby then looking back at us as if they were thinking, “There’s clearly nothing wrong with your child.” But, if any of them were thinking anything like that, they certainly didn’t say so. They checked us in quickly, then got us back to see a doctor within a few minutes.
We told the E.R. doc about our past two days, then we showed her the video of the spasms. She said that she was familiar with infantile spasms, and ordered an EEG that night. Here’s where Missi and I started learning that many medical professionals just are not that knowledgeable about IS. While we were in the exam room waiting for the EEG, Gabby started having the spasms again. There was a nurse in the room at the time, and she didn’t even notice them. When we pointed out the actual spasms as they were happening, she still didn’t recognize that there was anything wrong. Over the course of the next five days, we would learn that one of the main reasons that IS gets missed or misdiagnosed is because it is such a rare condition that many pediatricians, nurses, technicians and other hospital staff are just not familiar with it.
After waiting for a couple of hours, they came and took Gabby back for the EEG. If the situation didn’t seem real enough for us yet, it was certainly about to. Like I said, I didn’t really know what an EEG was before that day. It is an electroencephalogram, and it essentially detects electrical activity in a person’s brain. To get the data, a tech places several (probably 20 or so) small discs all over the patient’s head. For an adult, this would be a nuisance. For a 5-month-old little girl, it was one of the saddest things I’d ever seen. The hospital staff at Children’s were great, and we became all too aware that they see and treat small children every single day. For Gabby’s part, she was a trooper. Even though she had no clue what was going on, she was too young to really be scared. Still, for us, it was such a helpless feeling to see our little girl, who had seemed perfectly fine less than 48 hours earlier (and still seemed fine then), with all these wires running from her head to a machine.
The techs hooked everything up and conducted the EEG. It took about 45 minutes for them to get the information they needed, then we went back to the exam room. The doctor also ordered an MRI, which, in comparison to the EEG, seemed like a walk in the park. After all of the tests were conducted, we were checked in to a room. The E.R. doctor agreed that it could be infantile spasms, but we would know for sure in the morning when the neurologist reviewed the EEG results. We got as comfortable as we could in a hospital room, and spent the night praying that Gabby would be OK.
Since we knew we could be at the hospital for a few days, I went home and got some clothes and personal items for all three of us. When I got back, I started doing research on infantile spasms. I found a couple of helpful websites (the one from the Child Neurology Foundation as well as one on epilepsy.com), and tried to learn as much as I could in one night. I believe that the Child Neurology Foundation describes it best, here’s what they write about IS:
Infantile spasms (IS) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. A few children may begin as late as two years. Only about 2,500 children in the US are diagnosed each year with IS. It often has a very subtle appearance so it is difficult for parents to recognize that it is a serious problem. When most people think of a seizure disorder, they may think of someone falling to the ground and having all-over body convulsions. It is very obvious when that happens that there is something wrong. Many people seeing a seizure for the first time are quite scared; while others may think that the person is going to die.
A young child having infantile spasms, on the other hand, may just have little head drops that do not appear to be anything serious. However, it is a much more serious seizure disorder than the generalized convulsion. Not only is it difficult for the parent to realize that this is a seizure disorder, it is also challenging for pediatricians. Infantile spasms are so uncommon that most pediatricians will see only one or two IS cases during all the years of practice. Also IS often looks similar to common disorders such as a normal startle reflex, colic, or reflux. It is very important to recognize that a child has IS as soon as it begins because:
- there are medications that may control the spasms
- the longer the spasms last before they are treated and controlled, the poorer the child may do developmentally
Unfortunately, children who develop IS are at great risk for developmental disability and autism, but some children will do well if they are treated early. Because the spells may be subtle, the diagnosis may be delayed for weeks or months.
While we were trying to remain optimistic, signs seemed to be telling us that Gabby was going to be diagnosed with this rare, terrifying condition. Although Gabby fell asleep not long after we got to the room, she’d had a couple of more clusters of the spasms while we were in the E.R. It was so strange how much more frequent they began to come, and their frequency only increased over the next couple of days.
Missi and I both did our best to get some rest while we had the chance. We knew that the next day would be a long one. We woke up the next morning and did our best to prepare ourselves for whatever news we received. The hospital staff was so helpful in making us feel comfortable, as odd as that may sound. The staff told us that we would be seeing the neurologist, Dr. Gammeltoft, sometime that morning. He came in a little while later, and we got the news we had been dreading all night.
Dr. Gammeltoft was polite, but he got right down to business. He told us that he had reviewed Gabby’s EEG, and that it had shown hypsarrythmia. I had already learned what this was, and he went on to describe it as “chaotic brain wave patterns”. No doubt at that point, Gabby had infantile spasms. No matter how much we’d tried to steel ourselves for this diagnosis, it still hit us hard. Dr. Gammeltoft began explaining treatment options, and he was clear that he wanted to attack the IS as aggressively as possible. This meant that Gabby would received injections of a drug called ACTH twice a day for the next thirty days. With our whole world feeling so shaken at that moment, it wasn’t until a few hours later that we realized that we would be tasked with giving Gabby these injections after the first few days.
ACTH is a drug that treats several conditions, and is known to be one of the most effective for treating infantile spasms. Still, nothing cures IS. Dr. Gammeltoft told us that he was optimistic that one round of ACTH could eliminate Gabby’s spasms, but that the success rate was somewhere around 20%. Plus, even if she responded well to the ACTH, there was a strong possibility that she would eventually relapse and need another round of the drug (or a different treatment altogether). The odds of Gabby responding to the ACTH, ceasing to have spasms, and continuing to develop normally were probably around 10%.
We continued to try to be strong and positive, but these numbers were crushing. We still could not believe that something that looked so harmless could end up preventing Gabby from learning and developing properly. Plus, Gabby continued to be herself, never having any idea that anything was even wrong. We would come to realize what a blessing this was, but at the time it just made the situation seem so unreal. If you are a parent who has a child who has ever faced something like this, you know how we felt. If you don’t, and I say this with all due respect, you just don’t know the fear, confusion, or numbness that comes with this kind of news. Just two days earlier, we fell firmly into the latter category. While we had done our best not to take things like our daughter’s health for granted, we had certainly thought that, barring a random accident, she was destined for a perfectly normal childhood.
We took Dr. Gammeltoft’s advice, and we agreed to have Gabby begin her regimen of ACTH that afternoon. We were so fortunate to even have that opportunity. Since ACTH is so rarely needed, most hospitals don’t stock it. Children’s Hospital happened to have one vial there. Since it is so rare, it is also very expensive. When Dr. Gammeltoft was explaining it to us, he joked that the thirty day supply would cost approximately “as much as a small house”. He actually wasn’t joking. The price for four small vials of the gel was $140,000. When you’re told that a certain drug offers the best, and possibly only, chance to help your child, it really doesn’t matter if it’s $140, $140,000, or $140,000,000. We were going to get the treatment if it meant mortgaging our house, selling everything we had, and eating Ramen noodles for the rest of our lives.
The team at Children’s Hospital helped us contact the company that produces ACTH, and they were able to send a supply to us overnight. This was crucial, as Gabby needed to begin her treatments that day. She got her first two doses there at the hospitals, where the nurses showed us how to prep Gabby and inject the medicine. I cannot begin to explain how scary it is to know that you have to give your own five month old child injections twice a day. We were just starting to feel like we were decent at changing diapers. Now we were faced with learning to sterilize Gabby’s leg, numb the injection area with lidocaine ointment (I can’t even imagine how much harder it would have been if she’d felt the needle), draw the gel from the vial into the syringe (this was especially nerve-wracking, as the gel was very thick, and we had to learn how to get it just right without even a hint of air bubbles), then make the actual injections into our baby girl. Nothing had prepared us for this, and this was going to become our “New Normal” for the next month.
To the ETCH staff’s credit, they did a wonderful job not only training us to perform the injections but also making us feel comfortable doing them. Gabby stayed in the hospital for three more days of observation, but by the time we went home we actually felt like we knew what we were doing. We also knew that we didn’t have a choice, so that helped. So, with our supplies loaded up, we went home.
Gabby responded well to the ACTH. Within two days of receiving the injections at the hospital, the frequency of her spasms slowed down. After five days of injections, she was not having any spasms at all. Dr. Gammeltoft said she was the first child he had seen with IS who responded so quickly. We felt positively blessed, but we took nothing for granted. We knew that Gabby had a long way to go before any of us would breathe easily. Dr. Gammeltoft kept our expectations realistic. While he was always optimistic, he always kept us prepared for setbacks. He reminded us that delays in development were normal, even if Gabby never regressed and even if the spasms disappeared completely. These are the facts of IS. No one can ever predict how a child will respond to the treatments, and there is no way to give a solid prognosis to a child with these spasms.
For our part, we began this new phase of our life cautiously optimistic but grounded. We took Gabby home, tried to get used to the injections, and we prayed. Those thirty days seemed like they lasted two years. While Gabby’s spasms didn’t come back during that month, she did begin having another type of strange behavior. Sometimes, while Gabby was lying down (usually right before she would drift off to sleep), her eyes would start to roll back in her head. We went back for a follow-up EEG on June 19, and we were so relieved to see that Gabby showed no signs of hypsarrythmia. Still, these little eye rolls were troubling. We didn’t know if this was going to be another rare condition or something benign. Dr. Gammeltoft prescribed Topamax, a drug used primarily for epilepsy and migraine headaches. Within a few days, the eye rolls had stopped, but he wanted to keep her on the Topamax until further notice just to be safe.
Over the next few months, we did our best to get back to “normal” lives. Still, as any parent who has a child with epilepsy knows, nothing ever feels normal again. We knew the chances were good that Gabby’s spasms could come back. We also knew that she could develop other types of seizures. We did our best to relax as much as possible, but I can honestly say that I can’t imagine any parents watching their child as closely as we watched her for the next year. We feared that every single twitch, hiccup, and jerk was some kind of seizure. We made two or three trips to Dr. Gammeltoft’s office because we were worried about things that turned out to be nothing. Thankfully, he and his staff never made us feel like we were crazy for bringing Gabby in for false alarms. They were so incredibly professional and accommodating, and they always helped put our minds at ease.
There were so many lifestyle changes – some small, some big – that we made over those next few months. We never had babysitters, because we could never feel comfortable not having Gabby in our sight. Gabby was so fortunate to respond well to the ACTH, but one of the main side effects is significant weight gain. She became unrecognizable after just a couple of weeks of treatment, so we had to modify her diet. We also learned that Gabby qualified for an early intervention teacher to visit her weekly to check to see if she suffered from any developmental delays. This was something we immediately took advantage of, as we were so worried that she would start to regress like so many children with IS do.
One common thread throughout Gabby’s diagnosis with IS was that she met so many wonderful, caring people. This was never more apparent than when she was introduced to the people she met through the Tennessee Early Intervention System (TEIS). Gabby initially met with a woman named Jan, who evaluated Gabby’s development and introduced us to her early intervention teacher. Like the staff at Children’s Hospital, Jan was put on this earth to work with children. She helped us feel comfortable, even though we were terrified. Up to that point, Gabby had been ahead of most of her developmental milestones. Now we were faced with a possibility (maybe a probability) that she would start to show delays and maybe even lose some of the skills she had achieved. Jan was wonderful in helping us set expectations and making us feel comfortable.
Once Gabby was evaluated, she was introduced to a woman who would become a part of our family for the next two and a half years. Her early intervention teacher’s name was Angela, and she began visiting with Gabby for an hour a week starting in August. Angela would come to our house and give us progress reports each week. She had had one other experience with a child with IS, so she knew the prognosis. Still, we were relieved each week that Angela would visit and tell us that Gabby was progressing normally. She continued to hit her developmental milestones on or ahead of schedule. She was, by all accounts, a “normal” child. If you didn’t know that she had infantile spasms, you wouldn’t be able to tell by meeting her. Even though Gabby was growing and learning at a normal pace, we believed that Angela helped us through the next phase as much as she helped Gabby. She gave us hope and reassurance that was so critical, and we cannot begin to express how invaluable the services of TEIS were for our family.
While we were encouraged and grateful that Gabriella seemed to be the exception to most of the rules of IS, there was not a day that went by that we did not pray for her continuing health. Each night we thanked God for another day with no spasms, and each night we asked Him for another spasm-free day tomorrow (something that we still do each day, almost five years later). We never got comfortable or complacent, no matter how well Gabby was doing. We were certainly thankful and blessed, but we had read too many stories of children who responded well to the ACTH only to start having spasms again months later. IS had already blindsided us once, we were not going to allow ourselves to take Gabby’s health for granted again.
One of the ways we tried to grounded and humble was by trying to get in touch with other families going through the same thing. Missi joined an Infantile Spasms Support Group on Facebook. This allowed her to talk to parents from both sides of our IS journey: Parents with children who had already come through their battle with IS (some positively, some negatively) and parents who were just beginning their struggle (those first few days of Gabby’s spasms were still so incredibly fresh in our minds). We learned right away that we would not have found the strength to deal with this if we hadn’t read testimonials giving us hope. We wanted to be able to give back somehow, and this was an outlet where we could do that. Missi would communicate with other parents, and I believe (I know) that it helped us as much as we hope it helped them. We also found that we could learn from families who hadn’t had the same positive results that we’d had. A common theme for families whose children had not responded well to IS treatments was that they had been misdiagnosed or that they had learned of IS weeks or months after their children had gotten the spasms. We tried to find ways that we could somehow create awareness about something that was so foreign to even doctors and hospital personnel.
Fast forward to September, 2014. Gabby remained on Topamax for her eye rolls for 14 months, but otherwise she had a positive year. Dr. Gammeltoft had seen her every other month, and she’d had 3-4 more EEGs during that time. The hypsarrythmia never showed back up, and Gabby hadn’t had any more spasms or seizures. He instructed us to wean her off of the Topamax, and she did that without any negative effects. We had every reason to be encouraged, but we continued to be diligent and on guard. We knew that children could relapse up to the age of four or five, so we knew that we could never feel like we were out of the woods. But, we became more comfortable enjoying life, and enjoying watching Gabby grow and develop so wonderfully. Her EI teacher, Angela, would still see Gabby until her third birthday (when children in Tennessee no longer qualify for TEIS), so we were able to get weekly progress reports letting us know that Gabby was developing and learning just like she was before the spasms. Without getting complacent, we certainly knew we were blessed and we wanted to live lives that reflected how thankful we were for those blessings.
At this point, we felt like Gabby had been truly blessed with a miracle. We had spoken to so many doctors, nurses, and other families battling IS, and we knew that we were in a very rare and fortunate group of families who seemed to have weathered these spasms. We began looking for ways that we could help other families who may be just beginning their journey with IS. But, beyond checking the Infantile Spasms Support group on Facebook, we didn’t know what we could do? We weren’t famous or rich, so we didn’t know what outlets we had to spread awareness about IS. We kept imagining how many children could be saved from this condition if only more people knew about it. I did research to see if I could find celebrities or politicians who had children with epilepsy, and I wrote to a couple of them. But I don’t even know if those letters ever actually got into the hands of the people who mattered.
In June, 2015, Gabby and I went to West Town Mall for lunch and to walk around. It happened to be the day that East Tennessee Children’s Hospital was holding their annual radiothon. Marc and Kim from Star 102.1 were broadcasting from the mall that day, and there was a silent auction being held. Gabby and I walked around looking at items we (I) might want to try to win when a woman from ETCH approached us. She asked if we had ever had any experience with Children’s Hospital? I shared Gabby’s story with her, and she thanked us for bidding on some of the auction items. Before we left, she came back over and asked if we might be willing to share our story with someone else from ETCH? She said that they published a quarterly magazine for donors (which we were already familiar with), and said that Gabby’s story may be something they would want to publish. I told her that we would be anxious to share Gabby’s experience with IS and with Children’s Hospital, and that I hoped it could be a way that we could generate education and awareness about IS.
A couple of weeks later, I was contacted by a man named Paul Parson from Children’s Hospital. He explained that they wanted to include Gabby’s story in the next issue of the “It’s About Children” magazine. He put me in touch with the person who would be writing the story, and she conducted a short interview with me to get all of the necessary details. She then put me in touch with a photographer, who came to our house and did a photoshoot with Gabby for the magazine. We learned later that she would be the “cover story”, and about a month later we received copies of Gabby’s issue. While we never sought any sort of attention for ourselves, we were so proud that, through Gabby, other families may learn about infantile spasms. I was so excited a few weeks later when a mom from Gabby’s Little Gym class approached me to tell me that she had seen the magazine at her office. She’d recognized Gabby on the cover, so she read the story. Of course, she’d never heard of infantile spasms, so she shared the story with her friends at work and with her family. Before this conversation, we had only greeted each other during our kids’ gym classes. Now I felt like we had maybe made some movement on getting information about IS out there.
Along with their magazine article, Children’s Hospital also put together a video on their website. We felt so honored to be able to share Gabby’s experience to try to reach other families. We truly feel that education and awareness are critical in the treatment of IS, and we know just how important it is to act quickly if a child is having symptoms. I don’t know where we would be if we hadn’t read the testimonials we read the night we took Gabby to the ER. We would have waited ten days for her scheduled EEG, and those ten days absolutely could have been the difference in Gabby coming through this the miraculous way she has or being doomed to a much tougher, challenging life. We can only imagine how families feel who weren’t as fortunate to recognize the symptoms and who later had to watch their little ones struggle with simple tasks. We know how blessed we have been. We hope that, somehow, Gabby’s story can reach more and more people so they may have the same opportunities that we have had.
This past December, Gabby celebrated her 4th birthday. To see her today, you would never know that she had a potentially debilitating condition. She is sharp as a tack with an incredible memory, she is active and playful and super-friendly, and she loves to read, sing, dance, giggle, and be the goofiest little girl in the room. She doesn’t even know she went through this terrifying ordeal. As she gets older, we will tell her more about her epilepsy and her experiences. We hope that she will also see her miracle as a chance to help others. I can already see her as a young volunteer at Children’s Hospital, bringing DVDs and books to families who are staying there. Besides being blessed in her fight with IS, she was blessed with a servant’s heart. We hope to help her cultivate this trait to be the best helper she can be. She loves other people and she loves God, and we are certain that she has gone through this challenge so others may have the same blessings that she has had.
If you made it this far, thank you so much for reading. During our week at Children’s Hospital, we lost count of the people who checked on us and prayed for us. If you don’t believe in the power of prayer, I can tell you that it absolutely works. We believe that it helped Gabby get through her first stages of this challenge, and we are certain that it helped give us strength when we were sure that we had none. It was through our families and friends that we were able to share Gabby’s story initially. It was their sharing her updates on Facebook and their sharing her original YouTube video that helped us reach more people than we had the capacity to reach. It will be through YOU sharing your knowledge of infantile spasms that helps us reach even more. Please feel free to share this website with anyone who may not know about IS. Chances are, it’s 98% of the people you know. We are so grateful for the love and support we have been given over the past four years, and we are so thankful for your help in sharing Gabby’s story to someone who may need it in the future. Thank you for reading, thank you for caring, and thank you for helping.
Gabby's Infantile Spasms Story 