Milo's Story
This is the story of our journey….told through a mother’s eyes, and made possible by the caring people at Children’s.
My name is Kim Lawson, wife of Erik, and mommy to Sam (6) and Milo (4 1/2). Three and a half years ago, life was going well and our lives were following a “normal” trajectory with two sweet boys that filled our house with non-stop laughter. My youngest son, Milo, turned one on May 27th, 2007.…the day was a perfect celebration. Shortly after his party, we visited the pediatrician for his 1-year appointment, which included the neccessary vaccinations, and Milo received a clean bill of health. But within a week after this routine check up, Milo did something strange…something I had never seen him do before.
Milo was sitting on the living room floor,holding his beloved blankie. I think we were watching the Wiggles. Milo was very sitting very still, which was my first clue that something was unusual since he was normally pretty animated when watching the Wiggles. This is when I noticed the odd look on his face…it looked emotionless and blank, his eyes then started to water, and then all of a sudden both of his arms went out to his sides, like he was trying to catch his balance. His arms came down, and then he did it again. This whole strange episode lasted about 20 seconds. He seemed fine, so I got up to grab his bottle from the kitchen, and when I returned a few seconds later, Milo was lying face down on the floor. I ran over to him in a state of panic, screamed his name as I picked him up, and then Milo slowly opened his eyes. He then put his blankie back in his mouth and slowly started to close his eyes. It was after all, his normal nap time.
I called my husband at work to tell him what had just happened, but it was so hard to describe and all I could say was, Milo just did something really weird and then he went to sleep. Over the next week or so, I saw Milo do this a few more times, and I began to notice a pattern. It was always when he was tired or just getting up from a nap.
My gut told me I shouldn’t ignore it. I always have my camera on me, so I started recording this strange behavior in order to seek help.
I couldn’t let another day go by, and I took Milo and the video recordings to our pediatrician.
Within a few seconds of watching the video, he said gravely, “It looks like Infantile Spasms, but I’m not 100% sure, so we need to send Milo to Children’s for an EEG on his brain.”
I thought, OK, a spasm, no big deal. Look at his older brother, he is a complete spaz! But as we were leaving, the pediatrician said, “I’m so sorry.”
I thought, ‘Why are you sorry? It’s a spasm, right?! That doesn’t sound life threatening.’
Later that day, I called Children’s to make the EEG appointment.
Little did I know, this phone call was just the beginning of our long journey with Children’s Hospital.
When I googled “Infantile Spasms”, I was shocked and horrified by what I was reading. “Ninety percent mental retardation, never able to walk or talk”, etc….I could not find one story with a happy ending. No wonder the pediatrician had said “I’m so sorry.” But I tried to remain positive with the hope that maybe our doctor had guessed wrong and everything was going to be fine.
The days preceding this EEG appointment were full of fear, anxiety, and sleepless nights. The descriptions of the symptoms and other families’ stories ran incessantly through my mind like a ticker tape I couldn’t turn off.
The hour that Milo was in the EEG exam room was the longest hour of my life. When the testing was over, Milo had pink goo all over his head from the wires that were fused onto his white hair. My parents were with us and we all prayed together in one of those little exam rooms through the pink doors in the Whale building, awaiting the test results. I wanted to hear anything other than “infantile spasms”. Then the head of neurology walked in the exam room and when he started to speak, my stomach immediately sank. As dread overwhelmed me, I braced myself.
The doctor started to explain, “Milo’s EEG results came back positive for hypsarrythmia…meaning chaotic brain waves….or Infantile Spasms.” Everything after that devastating sentence was a blur. I felt like I was having an out of body experience and thrown into the worst possible nightmare. How can this be?
The doctor went on to explain, “This is a rare form of epilepsy and a very difficult syndrome to treat. This type of chaotic brain activity can contribute to developmental delays in a young human brain. Children with infantile spasms represent one of the greatest challenges in pediatric neurology.”
He was throwing so much information at us that I could barely keep up. But I can tell you this….AT THAT MOMENT, OUR LIVES CHANGED FOREVER, and when we walked out of that little exam room that hot July afternoon, we began our new “normal”.
The non-stop laughter that filled our lives to this point suddenly came to a halt and was replaced with devastation and shock. I wanted to scream, cry, and hold my sweet Milo. I wanted to reassure him that everything was going to be OK, and I really wanted to believe my own words, but I was starting to feel the doubt that crept in. So, I prayed like I have never prayed before. “I will do anything, God, please take care of my baby.”
The head of neurology explained to us that the normal protocol for this condition was an immediate four day minimum stay at Children’s, and we would be coached on how to administer a daily shot of medicine, as first line defense for his diagnosis.
My first thought to this was: on top of everything else I have to inject a needle into my son’s body? An MRI was also scheduled, we packed our bags, said good-bye to Sam and his sitter-- and Milo was admitted. Luckily, the MRI did not show anything structurally abnormal with his brain. But this also meant that the onset of these seizures remained a mystery since no underlying cause could be identified. In the next days within the cold corridors of the unkown, Milo endured many exams- along with a lot of poking and prodding. We were then released from the hospital and sent back out into the world that was still moving on, even though our lives had just seemed to hit a brick wall.
In the next several weeks, Erik and I (without the assistance of medical staff) had to administer this shot, a steroid called ACTH, into Milo’s leg every morning before Erik left for work. And with every injection, we hoped that the medication would stop these awful seizures. I would hold Milo down, while Erik quickly rammed the long needle into the fat of his thigh. Our older son, Sam, who was three and half at the time, would also help in this daily ritual by distracting Milo with funny faces and songs.
I can’t even describe the level of stress we were experiencing during this time. Starting out every day by giving my son a shot just didn’t even seem fair. The only positive was that Milo was only thirteen months old at the time so he wouldn’t remember any of this.
Family and friends were supportive during this period, what I refer to as “hell”. Flowers, home cooked meals, and phone calls galore…all of which meant so much, yet could really do so little for my sweet baby. With every seizure, I held Milo in my arms, rocked him quietly, and hoped that the seizure wasn’t doing irreparable damage to his brain.
Milo was on a myriad medications, along with the steroid injection. To keep it all straight, we had a really fancy color-coded spreadsheet taped to the kitchen wall.
To add to the hardship, his immune system was compromised and he developed high blood pressure. On top of weekly blood pressure checks, Milo’s regular visits to Children’s now included appointments with neurologists, audiologists, psychologists, ophthalmologists, Speech and Occupational therapists, as well as more EEGs and really fun trips to the blood lab, where it took three people to hold him down.
To put this into perspective we were at Children’s at least once a day, and these appointments would last anywhere from one to four hours. This equates to a part-time job.
After 15 weeks on all of this medication, Milo had swelled up in size, almost unrecognizable, and the worst part was that he was still having the seizures. The neurologist decided to slowly wean him off of the steroid and switch to a medication that at the time was not FDA approved and only available through Canadian sources. The good news was that it was a fraction of the cost of the ACTH, and it was in a powder form. No more ramming a big ass needle into Milo’s thigh!
On day two of this experimental drug, the seizures stopped.
An EEG was performed and this time it came back clear of hypsarrythmia. And just to confirm this good news, Milo reluctantly kept all these wires fused to his head for a 24-hour overnight EEG test. It also came back clear of hysarrythmia. That was best phone call I have ever received in the middle of grocery shopping at Trader Joes!
During the 15 weeks Milo was having these seizures, we really don’t know how much of an impact they had on his developing brain, and there is no current technology that can translate the effect that this will have on him.
But we do know that at age 13 months, Milo stopped progressing developmentally and even regressed a little. It was crucial that we begin early intervention and we met with a social worker at Children’s to gather up all the resources we could find for Milo. This included the beginning of our weekly visits to Josie, a speech pathologist at Children’s.
We originally met with Josie for an evaluation and to also get referrals for therapists in our area, and shortly thereafter, Josie phoned us with an extraordinary opportunity… she could work with Milo on a weekly basis.
Before long, Milo became very comfortable visiting Children’s, and in turn everyone at Children’s became familiar with our little tow-headed, enthusiastic and social boy!
I have to allow a few extra minutes before our appointments so Milo can stop and say hi to every “Nemo” fish in every tank within the entire Whale building. Nemo was one of Milo’s first words.
Children’s has become such a part of Milo’s weekly routine, that even when I’m driving on Sandpoint and don’t turn up the Children’s driveway, Milo cries “Jo Jo, Jo Jo!”
It is an understatement to say that Children’s Hospital is like a second home for Milo.
Josie, or “Jo Jo”, has become a part of our family and Milo just adores her. We see Josie more than most of our family members. She has also turned into my personal therapist! I can’t tell you how many times I have cried on her shoulder and how much I appreciate her ongoing support for our family. Josie’s extraordinary care is a part of the reason that I have started my own guild, the Milo Gray Guild for Children’s Hospital.
Sam, our older son, has also become quite familiar with our weekly routine to the hospital and he has become very popular with the volunteers in the Sibling room. If Sam has a choice between going on a play date or going to the Sibling room, he always chooses the Sibling Room.
In the three and half years since the onset of Infantile Spasms, Milo is slowly progressing, but he is still extremely delayed. When an EEG is performed on Milo’s brain, the testing showes that there is a discharge in the frontal lobe area of his brain. Milo is 41/2 and looks like a typical 4 year old, but developmentally he is equivalent to an 18 month old in overall cognitive and communication skills. If you ask him to pick up a ball and throw it to Daddy, he might look at the ball, but he can’t fully understand the command. We have to show him over and over again how to pick up the ball and throw it to Daddy, and then after repetition, he is able to understand what is being asked of him. It took Josie three months just to get Milo to point to what he wanted.
Every single tiny milestone reached is greeted with lots of cheering.
The good news is that he is progressing. He uses sign language to communicate and has many words that he uses consistently. And although he can point or show us what he wants, at the same time he also gets extremely frustrated and will pinch, scratch, kick, bite, or pull hair just out of pure frustration.
Milo has recently been tested for Autism at the Children’s Hospital Autism Center, and we were not surprised to hear that he falls on the spectrum.
I will be honest, raising Milo is a lot of work and it is a part time job taking him to his ongoing weekly therapy appointments and developmental school. At the end of some of my days, I’m exhausted, my nerves are fried, and my arms are covered in scratches and pinch marks.
Milo doesn’t comprehend the danger of running out into a street or wandering off from me, so I keep a 24/7 eye on him.
We even have him sleep with us every night, just in case something happens. If Milo were to get lost, he would not be able to respond to his name.
He is now the lone child at the park declaring his identity with a shiny silver medical bracelet on his tiny little left wrist.
And sadly, since Milo tends to get physically aggressive with other children, especially in over stimulated situations, we stay far away from birthday parties and play dates. It’s just easier not going, than having to explain to other parents why Milo is hitting their child. I hate having to explain that Milo is just trying to communicate and I really do not care for the judgmental looks from other parents, so we stay away.
Unfortunately, Milo had a set-back in his progression about 6 months ago. Since he had been seizure free for almost 2 years, last November the doctors used normal protocol and decided it was a good time to wean him off of the last medication. We were pretty confident that Milo had outgrown these Infantile Spasms, unfortunately, Milo fell out of this normal spectrum.
Despite celebrating what we assumed to be the final anti-convulsion pill, it wasn’t meant to be. 4 weeks later I caught a glimpse out of the corner of my eye the subtle movements of the dreaded seizures returning. The very next day, Erik and I both saw him have one and our fears were confirmed. The overwhelming feeling of devastation and dread we experienced 2 years prior resurfaced all over again. Back to his neurologist (who was baffled that these were back) and a return to the testing, poking, prodding, and medication once again. This time around on the medication, Milo developed behavior that was aggressive and it was as if he was crawling out of his skin. Instead of just crying when he was frustrated, he started literally banging his head on everything and clawing up his own face. No matter how short I would trim his nails, he would still manage to scratch his face. Which would lead the outside world to ask “did the cat attack him?”…nope, just self mutilation. Despite this behavior, the good news was that the medication once again controlled the seizures.
I feel we are only beginning to understand the lessons that Milo has been put on this planet to teach us. We are looking beyond the past, the present, and the future and enjoying every moment that we have together. We have learned not to dwell on the nightmare but to recognize this as an opportunity to learn more about ourselves…And all that Milo has taught us…to love, be patient, be kind and be respectful.
Not only has Milo affected our lives, but most who come into contact with him are drawn into his orbit as if he is a bright, shining sun.
Every day is a blessing. Milo is the light in this family and it is an honor to be his mother.
Sam loves his little brother and is fiercely protective of him. Out on the school playground, I overheard Sam explaining like only a five-year-old can to his pre-k buddies, “Milo doesn’t understand, he has a hurt brain.” Milo has taught Sam the importance of empathy towards others and as a mother, I cannot be more proud of Sam.
Erik and I each have our own way of dealing with the everyday struggles of raising our two boys. Erik is a musician and has his own “musical therapy” while I turn my daily struggles into regular status posts on Facebook for my growing list of friends’ amusement. There are so many posts to choose from, it’s hard to narrow down the best. Like: the day Milo used the dishwasher as a diving board or the day he flushed my makeup down the toilet. And then there was the day he decided the living room floor looked like the toilet, meanwhile Sam is singing who let the poop out? Poop poop poop poop!
Like so many others, we feel the compounded anxiety of the economy and our financial situation. If Erik and I had to worry about how we were going to pay for the last 31/2 years of medical bills, I’m not sure our marriage could have endured that stress on top of everything else. I’m not afraid or ashamed to admit that we are one of those fortunate families who have benefited from the uncompensated care fund at Children’s. We have insurance, and actually pretty good insurance. But it doesn't always cover what Milo needs.
Fortunately, we have had the assurance of Children's Hospital to help us cover costs that insurance can't fully cover. Support comes from the Uncompensated Care Fund.
Because we didn’t have to worry about money, we could focus solely on our Milo’s health. For this, we are infinitely appreciative. Seattle Children’s uncompensated care program benefits hundreds or thousands of other “Milo’s” out there.
If I’m ever feeling down or having a difficult day, all I have to do is drive through the parking lot at Children’s Hospital to help put things in perspective. When I see all the vans parked in the garage and I watch how long it takes some families just to make their way to the check-in desk, I’m reminded that we are not the only ones going through this. These families give me the strength to keep moving on.
Prior to Milo getting sick, I always heard the phrase, “We are so lucky to have Children’s hospital in our back yard.” Now that we have spent so much time there, that statement couldn’t be more true. It is the best of the best care for our sick children, and it is a place of hope, strength, and peace.
I would encourage each and every one of you to just go and sit in a check-in area, like Whale 6, and take a look around and just appreciate what is happening at this wonderful place.
Look into the eyes of the children and you will see that hope.
Look into the eyes of the parents and you will see that strength.
Now look into Milo’s eyes, and you will see that peace.
Justin's Story
as told by parents Lyrma and Victor
Justin was born in July 2005. After a rather uneventful pregnancy and a smooth delivery, we brought him home to meet his big sister Clara and to settle in as a family. Being our second child, we thought we had everything covered: diaper changes, feedings every three hours, and all the little baby clothes that are outgrown far too quickly. No problem - we'd been there, done that. Little did we know that Justin had something completely different planned for us.
At his one month well child check up, we mentioned to our pediatrician that we'd noticed episodes of twitching in Justin's left eye every now and then since he was about a week old. Nothing major, but our doctor recommended that we have him checked out on an EEG just in case. Knowing that Seattle Children's Hospital would be set up with all the special kid-sized equipment we needed, we were lucky enough to get an appointment for the very next day.
Halfway through the test, we were given the news that would change our lives forever. Justin was having clinical seizures and needed to be admitted to the emergency room right away. In a whirlwind of activity, Justin was whisked from the EEG to the ER, then later to the imaging/radiology department for a CT scan and MRI, and finally to the NICU where he would spend the next few nights under observation on anti-seizure medication.
Needless to say, we were shocked to learn that our one month old little boy had epilepsy and our greatest fear was the unknown future that lay ahead of us. That night, however, as parents we steeled our resolve to follow Justin's lead in whatever direction this new journey would take us.
Over the next four months, Justin's condition steadily grew more serious. As we tried different combinations and dosages of medications (including Keppra, Zonegran, Lamictal, Phenobarbital, and ACTH hormone therapy), Justin continued to show increasing signs of infantile spasms, eye twitching, and muscle seizures. Our darkest of nights were spent helplessly holding and consoling our baby son as he suffered through clusters of seizures every 2 to 3 minutes for up to two hours at a time.
When it was clear that medication alone would not be enough to control Justin's epilepsy, our neurologist at Seattle Children's Hospital put us in touch with Dr. Ojemann in the pediatric neurosurgery department. Contemplating brain surgery for a 5 month old baby is not something any parent should ever have to consider, but after hearing the doctor's explanation of Justin's condition (as evidenced by updated MRI brain images) and the surgery options available to us, we knew that this was Justin's best chance.
We opted to perform a partial hemispherectomy. Since most of the seizure activity was originating in the back half of Justin's right brain, this procedure would surgically isolate that tissue in order to keep the electical impulses that were causing the seizures from spreading across the entire brain. But the surgery would stop just short of the motor strip on the right side in an attempt to retain fine muscle coordination on Justin's left side.
We felt confident that we were in the best hands with one of the top neurosurgeons in the country. And we knew that the facilities and nursing staff at Seattle Children's Hospital are the best in the region for this type of specialized care. But one of the best things that put our minds at ease was when the hospital's Family Resource Coordinator put us in touch with another family that had been through very similar circumstances with their son. After a very comforting and genuine telephone conversation hearing their success story first hand, we knew that, come what may, we were making the right decision.
Justin, ever the fighter, made a swift recovery after the surgery. For the next couple of weeks, we didn't see any signs of seizures. For Christmas, he gave us the wonderful gift of a seizure-free day. But the partial hemispherectory was not enough. Over time, the same dreadful patterns set back in, and we knew we had to go back for Justin's second brain surgery within the span of two months.
This operation would complete the disconnection of the right brain (which was producing the seizures) from the left brain (which was healthy). Again, the surgery went flawlessly, and Justin's recovery from the operation was speedy. This time, however, marked the beginning of the real turnaround.
We didn't see any seizure activity in the days following the surgery. Strings of seizure-free days turned into seizure-free weeks, and then months. Under the vigilant care of his pediatric neurologist Dr. Saneto, we were able to slowly wean him off all his seizure medications over the course of the next year and a half. What a happy day it was when we finally gave him his last dose of medication!
Justin is now almost five years old, and he's thriving! Not a single seizure since the second operation. He's walking and talking, he loves to dance and play, and next year he'll be in kindergarten. He's got a great sense of humor, and he's got lots of love to share with everyone.
We are truly blessed to have him in our family.
We're thankful for those who have shared in our journey especially the doctors, faculty and staff at Seattle Children's Hospital, and all who have been involved in Justin's care along the way. Thank you!
