A while ago my son had a bad cycle of seizures. There was one that happened while I was at the grocery store. ‘Buddy’ was home with Beatrice a friend/babysitter/med student (we Love her). I was just about done shopping. I was talking with the cashier as he began to check out my items, when my phone rang. It was Beatrice. 'Buddy' was seizing. She had called 911, and was administering the second dose of Diastat to rescue him from the seizure. It finally stopped at 15 min.
I apologized, left my groceries on the counter, and ran to the car. We ended up in the hospital overnight.
A couple days later on a Saturday, I tried again. My husband was home with ‘Buddy’ and my sister came with me to the store. She drove. As we came down the hill to the store I felt my pulse quicken. My throat thickened and swallowing became a conscious effort. My head felt buzzy. I took a deep breath and laughed. My sister asked me what was so funny. My answer was PTSD. I was laughing because I was really glad I had written a blog about it. Doing so made me aware of it. My awareness allowed me to take a deep breath and take control of my body back.
It was a very odd trip through the store. Every time I reached up to an item I had the same dialogue in my head; “I need eggs. No, you got eggs. No, you put eggs in a cart, but they did not go home with you.” “I need cream. No, you got cream. No, you put cream in a cart, but it did not go home with you.” It took so long to make my way through the store because of all this back and forth triple checking. I was so glad my sister was there to help me laugh about it. I think it would have been very scary to manage alone.
Then, half way through the store, a woman accidentally walked off with my cart. Internally I completely panicked. “NO! Don’t make me go through all this again!!! I can’t do it!!!!” I managed to calmly say “Hey, that one is mine.” But I wonder if the terror registered in my eyes, because she was profoundly apologetic. Again, so glad my sister was right there so I could tell her about my panic and disable it with laughter. I got through the trip and restocked my fridge, but honestly, I held off as long as I could before going back. I even thought about having it delivered. I didn’t. I worked my way through instead.
I do find the story interesting though. I enjoy telling it and marveling at the way a persons body can sometimes take control...or try to.
I am walking with my son. It is early evening and the night air is cool and soothing on a fussy boy. He has gotten so good at walking. He holds my hand and turns his body this way and that to direct our motion. He is so close to walking on his own. Often I only offer one hand, just to let him know he can do it.
He has had his bottle on the deck and my dinner is waiting inside. We walk together through the door and I feel him turn to go back out, or so I thought. I look down and his head is thrown back, his eyes a distant stare. “Crap! Seizure!” I yell. My husband races the diaper bag to me. He pulls out the diastat, while I set the timer on my phone. We whip down his shorts and diaper to administer the diastat. Then turn on my phones video so I can show his neuro team the seizure. 1 min 30 sec.
He has only had one seizure in two years, and he is outgrowing his dose of diastat. We know we may need a second dose. He often needed a second dose even when the dose is right. On top of that we are visiting family out in the country, two hours and a ferry ride from home, from our hospital…watch for blueing. “Breath baby, mommy and daddy are right here. You just keep breathing.” Sometimes his diaphragm seizes with the rest of him and his oxygen levels drop. All of this is racing through our minds. Some of it we say, some of it we just know. The clock on my Iphone spins out time in slow motion as my son flies through his seizure in a superman pose.
Around 6 min, his pose shifts. At first I am relieved. I think he is coming out of it. Then I am terrified. It is intensifying. His expression makes me think of a death mask. “call 911!” I yell out. I can’t remember if we have seen this before. We are so isolated. What if he needs more than we can give? I almost give in to panic as my husband gives the second dose of diastat. We need to shut this down. There is no phone to call 911. That brings me back. There are things I have to do. I flip my phone from video to phone and call 911. “4 year old child with intractable seizures, some blueing please come quick!” Flip phone back to timer, 7 min
Once the paramedics come they are going to want to take him somewhere. I need to pack. We are here for the weekend and we are spread out. I make sure my husband is settled with my son. I tell him what my intention is, and I begin to throw things into bags. I run to the little guest cabin and hear the sirens, so I run past out to the highway. Everyone misses the turn off. There is no time for them to miss it. I flag them down and run them inside. We are approaching 15 min the seizure is loosening, but his eyes are still non responsive. I leave my husband to manage the paramedics and run to pack. My mother in law and a couple friends join in within a half an hour we have packed and loaded what it took me 4 hours to pack the day before.
I go back inside, the seizure stopped at 15 min. The paramedics are listening to his breathing to make sure he did not aspirate. We discuss the route home and how to negotiate ferry lines on Memorial Day weekend. We thank them and load “Buddy” into the car. The crisis is ebbing now. We still need to get home. I sit in the back holding his head in his carseat so he can breathe fully, and we drive in silence. Adrenaline is slowly coursing through our system. Some of it draining out and some of it going for a second round because we dared to think about the events of the last hour, the last 4 years, or God forbid the future.
We arrive at the ferry, get pushed to the front for medical reasons, and get home quickly. Thankfully. And he sleeps. My little puddle of son, my “Buddy” sleeps for the next 12 hours. We do too. We know we will need it, because to anatomy of a seizure does not end with the seizure. In some ways it begins there. “Buddy’s little body just ran a marathon in 15 min. Every single muscle in his body was clenched as hard as possible for 15 min straight.
Day one post seizure he wakes and seems okay, tired but happy. Every time I am lulled into thinking we are done. Then it is time to eat and he won’t. He bit his tongue and it hurts. I struggle to get enough food into him. Mid-day, the exhaustion catches up to him. The muscles start to ache. He want to pull to a stand and can’t. Worse, he does not understand why. This is when the whining and crying begin. He is so frustrated and tired and confused and probably scared. I do my best to comfort him, to give him Tylenol and Naproxen to manage the aches. I rub his muscles with arnica. I hold him. He sleeps, a lot.
Day two it really hits. He wants so badly to get back to life. He wants to stand at the sink and play in the water and ‘help’ with the dishes, but he is not so stable on his feet. He cannot hold on with just one hand anymore. He has to be careful. Almost falling scares him as much as falling. He wants to play not nap, and is mad that his body won’t do it.
This pattern continues like ripples on a pond, until it dissipates a week to a week and a half later…unless he seizes again. This week we have had 4. There have been times in his life when he had up to 15 of these in one day. No wonder the little guy could not pick up a toy and bring it to his mouth. He was exhausted.
I have never been much of a church goer, but I am praying, every day and with great earnest. I really need there to be someone who can help, because I feel so helpless. My mother told me she is praying to her mom. Granma was a feisty woman who took no guff. She worked in the church and was a firm believer. My mother said she figured if anyone could get things done up there it was Granma Marg.
Please God, help my little boy. Granma, if he is busy, can you make sure he hears? I don’t want to watch my sweet, shiny little boy disappear.
I read an article a couple weeks ago, and it really hit home. It was about PTSD in kids and families with cancer. My blog has been quiet this winter, because I have been struggling. That seizure threw me for a loop. It threw my husband for a loop. We both had flashbacks of seizures, ER trips, tests, a listless baby boy, fighting for hope in the face of hopeless test results.
“Buddy” is doing great. He is so close to walking. He is starting to notice the world around him more and more. His communication is developing. I should be sky high with excitement. But that damn seizure scared me to death. I don’t want to lose him. I don’t know what I would do without that smile. I want him to survive and thrive and blow everyone’s mind with all he accomplishes. I want so desperately to be a happy carefree family playing at the park, laughing together. I do not want to know how close death is at every turn…but I do, and I must find a way to reconcile that. I have to somehow find a space in my life for death, so that I can truly enjoy today, this moment. I don’t know how. I wish I did. Denial doesn’t seem to be a long term answer. I guess I will have to search for a better one.
We have been working our way back onto stable ground. It really is true what they say: “The first step to solving a problem is identifying it.” I knew I was off. I knew the whole house was off, but until I read that article, I didn’t know where to start to fix it.
Unfortunately, I cannot find that original article, but I did look up symptoms of PTSD symptoms at http://www.ptsd.va.gov/public/PTSD-overview/basics/symptoms_of_ptsd.asp
- Reliving the event (also called re-experiencing symptoms)
Avoiding situations that remind you of the event
- There are certain sounds that ‘Buddy’ makes, movements, positions, and expressions, which send my heart racing. As a family, we have to be careful how we respond to shows we watch. Exclaiming almost anything out loud can often trigger the other person and send them running to see what the problem is.
Negative changes in beliefs and feelings
- Seizures are definitely that elephant in the room. Sometimes it feels like a herd of elephants. Every decision is impacted by the unknown that seizures have brought into our lives.
Feeling keyed up (also called hyperarousal)
- It is so hard to feel safe. I love ‘Buddy’ with all my heart, but I do so knowing that friend’s children have passed away from SUDEP, or Sudden Unexplained Death In Epilepsy. Not knowing what the cause of ‘Buddy’s’ seizures is means we have no way of knowing, for good or bad, where our road may lead.
- Sleep is a struggle, and not always because of ‘Buddy’ waking. And no cold or illness is just a cold, or just an earache. Too many times they have led to something worse. We went into the doc recently and I asked about ‘Buddy’ hitting himself in the head. It turns out it was an earache, but at the time there was a subtle inference to how complicated he is, and that we should be on the lookout for something bigger. She was afraid that some new kind of seizure happening. Instead he was just trying to show us where it hurt.
All of this leaves us roiling. Some days are fine. I can watch him and be filled with amazement at his accomplishments. Other days I am terrified. Will he be okay? Will I have the strength to keep up the fight? Will we as a family? There are sooo many rabbit holes I can fall down. I work very hard to stay in the present, and see all the amazing small steps. Like yesterday ‘Buddy’ was holding Daddy’s hand on the right, and my hand on the left, as we walked together through the park, when a child rolled passed on a Razor. ‘Buddy’ was fascinated. He could not take his eyes off her. He saw her! He was thinking through what she was doing and digesting it, you could just tell. I told him, “You can do that too one day. First you need to figure out walking, then we can work out the Razor.” We all have to have hope, and goals.
‘Buddy’ had a seizure last Friday. It wasn’t his worst, and it was his first in a long time. I know that. I am thankful for that. I also know there are many kiddos who have bigger struggles. I feel for them, and I greatly appreciate every gain ‘Buddy’ makes. But after 2 years it was a harsh reminder. I try hard not to think too much about the future. But the future is part of hope and hope is needed to survive, so it is a delicate balance. Friday we were once again reminded that there are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.
The seizure was 10 min long. It stopped 6 min after being given Diastat. His diaphragm also seized so he was not breathing. He turned quite blue. I was home alone. I did all the right stuff, but was not as efficient as I used to be when this happened 2-3 times a day most days. Thank God it has not been 2-3 times a day…but you see, that is my fear. Everyone says one seizure in 2 years is pretty good. Focus on all he is doing, all he can do. I am, but it is hard work, because the other side of that is “Do you remember his history? Do you remember how quickly he can tank? Do you remember when he was so tired from seizing that he could not hold his head in order to keep his airway open?...We do. And if that happens again…think of all he could lose.” That is what brings me to tears, that and the not knowing why it happened.
We have had a hard month. Nutrica, the company that makes his formula, changed their recipe. We were days away from starting to wean ‘Buddy’ from the diet when we had to switch to the new formula. It was three days after Christmas, and the new formula had a completely different flavor profile. ‘Buddy’ would have none of it. (I will go into all this deeper on another post.) So we have been struggling to get him eating solid foods, homemade Keto Egg Nog, anything. I have been running around town trading new Ketocal, for old with parents whose keto-kids have feeding tubes. With all that craziness, his Keto Levels were still normal. Even though we started reducing a month ago, his levels were still normal. I almost wish they weren’t. If they were off because I made a mistake, there would be something I could fix. But there isn’t.
One of the incredibly hard things about having a medically complicated child is the powerlessness. What do you do when even the doctors say “I don’t know. Let’s hope it doesn’t happen again, but let us know if it does.” I have had to wrestle with my son’s mortality before. I am very clear that his time is out of my control. I can live with that because I know I have done everything in my power to make his time here, fun, full of love and the best it could possibly be, but I have to feel like I am doing Something, or I start to lose my mind. So I create plan Bs.
My plan B this time is CBD, medical marijuana. I am finding out everything I can about how it works, how we get it, where and what kind to get, because if our house of cards starts to fall I want a stronger glue to put it back together. And our house could fall. We have 6-9 months of formula available. I am trying to find more. During the seizure ‘Buddy’ bit his tongue and does not want to eat. We have to start over again trying solid foods. This will take more formula. The doctors want to slow his wean to 12 months instead of 9. This will take more formula. So even if there are no more seizures we Have to get ‘Buddy’ eating solid foods or he will run out of food and possible need a Gtube. If he has more seizures, we will definitely run out of formula and probably need a Gtube.
I am often told to think positively, not to dwell on the negative, but I have to run through these scenarios so that I am ready for them. I run the best case. I run the worst case. Then I create contingency plans. Only then can I breathe. For me to find hope, I need a plan. It is a delicate balance. There are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.
(Thankfully, he is a very strong boy and is recovering well from this seizure.)
So, the whole idea of the Ketogenic diet is to gain seizure control and eventually get med free.
When we first started the diet, and it was working, we weaned ‘Buddy’ off Phenobarbitol, and Zonisamide, two very nasty but necessary seizure meds. They saved his life, but left him wiped out. The ideal way to wean meds on the diet is for the child to grow out of them. As the child gains weigh the dose to weight ratio shifts until the med level is no longer medicinal. If the diet is working you are golden, if not, you get break through seizures. It is a process rife with hope and fear.
When ‘Buddy’ was weaning from phenol, we were still pretty overwhelmed. I had never looked at the side effects of the meds, because I knew I didn’t have any choice, so why burden myself with extra worries. Because of this, we didn’t realize until after the fact that a side effect of withdrawal from Pheno is insomnia. For 6 months ‘Buddy’ went to sleep at 7 or 8, slept for 4 hours, woke for 3 hours, slept for 3 more and did not nap. A total of 7 hours sleep for a 6 month old baby. I honestly don’t know how we survived. We did swap nights and wear earplugs on off nights but still, it was tough.
Sleep is still tough. We had a glorious stretch of near normal sleep patterns, but not currently. I am writing this at 5am having been up since 2am. This has been the pattern for the last 2 weeks. On a good night I can get him back to sleep in two hours. On a bad night, he is up for the day at 3 or 4 am. I don’t know for sure, but I think we are in withdrawal again. We have not raised med doses (Banzel and Lamictal) in over a year and a half. I am about to take ‘Buddy’ on a trip out of town to visit family, and he is not sleeping well. The shadowy monster in the corner is the threat of seizure. There is not really anything I can do that we don’t already do; keep rescue meds handy, keep a close eye on him. Don’t leave him with anyone who can’t handle a rescue. All I can say is I REALLY hope it doesn’t happen for so many reasons.
Like I said earlier, it is a process rife with hope and fear. Fear of regression in development. Fear for his health, every seizure carries risks of brain damage since they are so long. Fear of social impact, seizures are scary, many people protect themselves by creating distance. And the biggest fear which shall remain unnamed. But it is also a process of hope. ‘Buddy’ is working hard at pressing into his legs to stand. He has recently figured out how to wave hello and goodbye. He is noticing cars, trucks and trains. He is able to push the icon on the phone to activate his favorite video. He is more alert and interactive every day.
If he is able to stay seizure free on the diet without meds, then we are one step closer to being one of the lucky ones. We pray for that every day in a million different ways.
I am always searching for answers. Sometimes I don’t like the answers I get. Like the time someone told me my child might have cerebral palsy. Turned out he does. I took a step back, absorbed the answer, then began asking more questions. That was how I found out that Cerebral palsy is a far broader diagnosis than the kids you see on the telethon. Basically, any physical impairment cause by brain injury, is cerebral palsy. That means anything from a slight limp, to wheel chair bound and unable to speak. It can affect cognition, or not.
Oh, well I knew that already, just not the name. I find it so interesting the emotional roller coaster that comes along with new terms. No wonder Doctors shy away from using them. My heart races, my head spins, my breathing feels thin, my ears ring. Once I calm down and think it through there is always a simple way to manage the new information.
Lately, I am looking into Brain Plasticity. This one does not have the same effect. I am not afraid as I read, I am excited. The latest science on the brains ability to reroute and repair is a lighthouse in a dark storm.
‘Buddy’ has had so many seizures, and so many of them have been close to a half an hour. His oxygen levels have dropped so many times. I do not need a brain scan to know there was damage. Nor do I need one to know he is working past that damage. Still it is very nice to read stories of scientists who are proving what I instinctually know is happening. I recently read The Brain That Changes Itself by Norman Doidge M.D.. In it he walks through a bunch of different scientists’ research and processes as they prove the brain is not machine like as was once thought, but plastic and changing from birth to death.
There are so many amazing stories of recovery. It really is a must read. Stroke victims who gain full recovery, learning disabled children taught to learn, a woman born with a brain injury, Barbara Arrowsmith Young, who self-diagnosed and repaired the damage and now runs a school in Canada! I took notes all through the margins. I stayed up late reading and researching scientists on the internet. Finding out everything I could about where they were and was ‘Buddy’ a candidate for their program. To that end I found out about a conference in Reinbeck, NY at the Omega Institute called Limitless Mind. It felt crazy, but I knew I had to go. Three of the speakers were mentioned in The Brain That Changes Itself Ms. Young being one of them. I knew I needed to talk to her.
I go this week. I don’t know what I will find. I know what I hope I will find. I hope I will find a way to chat with these speakers about ‘Buddy’. I hope that I will learn things from them that I can use daily to help him repair the damage that has been done. I hope that I can carry some of his charm with me and make connections for him, with people who will help him. I want to understand how one heals an injured brain. I want to do everything in my power to help ‘Buddy’ heal.
This is a post that was the inspiration for my blog. I did not have a blog at the time so I posted on FB. It felt right to re post it here. For the record, right now is a good time and the joy outweighs the grief. For that I am thankful.
I don't have a blog, so I thought I would just share this here. Thanks for hearing me out.
Let me start by saying I love my son. I am very proud of his strength, determination, joy. He is a sweet and wonderful boy who brings joy to all he meets.
Unfortunately, he is also sick. We found out when he was 6 weeks old that he has epilepsy. We spent most of his first year trying to keep him alive. There was very little time for tears. We had to learn about oxygen stats, seizure meds, CPR, ER visits, learning to speak medical jargon to speed services in crisis, feeding tubes. We spent a lot of time on humor websites. We had a choice, laugh or cry and laughing kept our heads clear.
At 5 months we started a special diet to help control seizures. It was working! It also added to our work load. No time to cry. We have to weigh, measure, track, read, create new recipes and test them. Then the ear aches came…and ear tubes…then glasses, and learning about vision therapies to add into his physical, occupational and speech therapies.
My son is almost 3, and he is amazing. He started crawling last month and I nearly cried. He is happy, starting to respond to some simple signs. Most importantly, he has not seized in the last year! (Knock wood) I should be happy, right? I am but, I am sad too. There are so many things he can’t do yet. Walk, talk, eat solid foods, push a button with a single finger, say Mom, say Dad, or recognize how much we mean it when we say I love you. These things scare me, because I have no way of knowing if I will ever see them. I fight hard to believe I will. I have to. But at the same time I grieve.
I grieve the child I thought I would have, the mother I thought I would be. I feel guilty for grieving because he needs me and part of me is distracted by the things I don’t have, I hope to have and may never have: Afternoons teaching my child to bake cookies; Days in the backyard planning our garden and planting seeds together; Making art, teaching him to draw; Walking in the woods; Riding bikes.
Some of these thing I know we can do, or will do…in time, but friends with children his age or younger are already doing them, with ease, and simple joy. They crawl up onto the counter to help mommy cook. Then they walk over to their play kitchens to practice. After a bit they look mommy in the eyes, and offer her make believe coffee. They giggle and laugh and play with their friends. They fight and get mad, cry, ask for hugs and laugh when it makes it all better. I try not to dwell. I try to hear their stories and be happy for them. I try not to be jealous or sad. And sometimes I succeed, but always there is effort. I grieve ease. Ease of joy, ease of play, ease of conversation, ease of tears.
That sounds funny, ease of tears. It is true though. I miss feeling sad, crying for a bit and letting the feeling pass. Now I am afraid to cry. There are too many tears that have been held back. I am not sure if it would be a bit or a torrent.
Now for all you friends and family, who will read this, please don’t try to protect me from your good news. I am happy for you. It is just a bittersweet happiness weighted by my experiences. One day I will be ready to say I am glad for my journey, for all of my luggage, but right now, today…I wish I had a lighter load.
Seems like telling our story is a good place to start. After years of efforts to start our family, Buddy (name changed for his privacy) came into our lives through adoption. He has a lovely birth mother who made a difficult choice for his future and allowed us to become his parents. She did everything right and his birth was healthy. Unfortunately, there are no promises in this world. Six weeks later he had his first seizure. It took only a week to diagnose this in part because we filmed an episode. When the ER docs saw the video they admitted us and rushed a 24hour EEG (pictured here).
It was a horrible 24 hours. He had a seizure within the first couple hours and we were told without a doubt that he had a seizure disorder. It seemed our son was an over achiever, he kept seizing...every hour on the hour some lasting 20 min and requiring rescue meds. By noon the next day we had tried several meds and were in the ICU. This is what our life would be. Watch for a seizure. Stop the seizure. Track the seizure.
We are incredibly lucky that we live near a Children's Hospital and we fell in with some amazing Doctors, nurses, dieticians, and therapists. Without them he may not have survived. Still at 6 months we were running out of options. We decided to try the KetoGenic Diet. This is a high fat diet which somehow changes the chemistry in the brain to help control seizures. For us it worked. It took a while and a bit of futzing with meds, but we are now on our longest break from seizure by far and praying to never see one again.
Since getting a break from the seizures and the meds, Buddy has started to make milestones, slowly and very much at his own pace, but he is making them. Buddy is now able to crawl, laugh, hold his own bottle, do a couple simple signs, and much more. We have challenges ahead to be sure. Because of all of the trauma, Buddy has been left with low tone a form of CP, Cortical Vision Impairment, he does not yet talk or walk. I have faith that he will do all these things, in his own time and in his own way.
During this journey I have been challenged to find ways to transform the world we live in to better receive my son, and to make it easier for him to receive. I have adapted many things from my thoughts and internal landscape to his toys and his external landscape. I plan to use this space to reflect and share on all these changes and challenges. Thank you for taking the time to walk along with us if even just for a bit.