So guys… After a terrifying day of drop seizures last week, we went in for a new EEG for Ben and got the clarity (for better or worse) we had been hoping for. Ben was diagnosed with a rare form of epilepsy called MAE or Doose. This type of epilepsy can be difficult to treat, but we are hopeful.
We started him on medication over the weekend, something we had resisted all this time because of the seriousness of the side effects. His seizures are particularly stressful because they are drop seizures and thrust his body to the floor, usually hitting his head. We have been really lucky so far; he has only been outside once when he fell, and gotten one bloody nose. But of course the risk of serious injury is high and we have to watch him closely. (I have been hovering over him for a year now and it’s done a number on my nervous system.)
Our greatest hope is that the medication will stop the seizures, that the side effects will be minimal/manageable and he will be able to resume normal kid-like activities. I know it’s going to break our hearts to tell him he can’t do jungle gym, monkey bars, bicycling, etc. (things he LOVES, ugh) until he is seizure free for a while and his EEG looks different. Our next hope is that he will grow out of it and it won’t be a lifelong illness.
I’m trying really hard to trust this, to trust all of it. You know how years later you can look back and see how all the pieces fit together? even the hard ones? How nothing is wasted, how it all makes sense later and it’s futile to resist it… In fact, when you’ve done everything you possibly can, it’s best to surrender to it, even when it sucks.
There is a way that parenthood grows your capacity to hold so much more than you ever thought you could. My capacity to hold chaos, fear, joy and uncertainty is so much bigger and deeper than ever. And at best, I feel stronger and more hearty somehow, like this new dimension to our life is calling on us to be even better versions of ourselves. Even in the midst of uncertainty I can see one thing clearly: That this is all part of Ben’s story. And it will be a wonderful story because he is a truly magical boy. And I know he is held by something big and divine.
We are digesting this new information slowly and would appreciate any encouraging and loving thoughts you might want to send our way. If you have hopeful stories (only happy ones please!) we welcome those too.
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I’ve got no stories, but lots of love, which I am sending your way
I find comfort in having a game plan. So, hopefully with this new treatment plan you will be working towards healing… I wish you all the best with your sweet boy.
Much love and hopeful thought sent your way. I know little of epilepsy, but we’re dealing with two boys with chronic heart conditions, so I know a little about worries and heartbreak… Someone told me that it’s important to remember what you can do about the situation (watch him, make sure he takes his meds, etc) and then let go of the rest. Not that it’s always easy. Ben is beautiful – I hope the meds work as well as they can!
I do indeed know someone who grew out of epilepsy. She took the medication for a couple years and then noticed the medication was making her really lethargic. It was because the epilepsy had run its course.
Thank you for posting this. I was struggling with a small gloom this morning but thanks to this post, I realized my own capacity for strength, grace, and surrender.
xo
Holding you all in my heart. I know this is a challenging time and you have the right attitude. I think, more than anything, being a parent makes you brave. Because it is such a vulnerable state – our hearts dancing in little bodies outside our own. I am sorry for any struggle you feel. I would suggest to feel it, and not resist it. Just like you wrote. That is the easiest way to move forward and open your mind for tomorrow. It tends to come in waves (stress). One day you are managing it all with a smile and the next you can’t stop crying. We have all had a journey like this of some sort. So much love sent to precious Ben and especially his Mama.
Love, Paige
that you already see that ben is held by something big and divine is so wonderful. i didn’t have that when my little one was first born, 99 days in the hospital for the first 99 days of his life. now, a big strong 6 year old, i can see, like you described, the “meaning” of it all, the pieces most def. fit. but during it? well, a wee bit challenging!
i’m sending you lots of love, lots of *nodding head, yes, yes, it’s hard but it’s all good* waves of goodness and of course many hugs (and i have never met you andrea, but please know these hugs are full of love not smothering-ness! lol!)
you are held.
Just so beautiful … indeed, our capacity is pushed larger with every thing like this (or smaller) that happens. The fact that you can see and lean into that even when it’s hard speaks volumes about who you are. Lucky, lucky Ben. Sending you all much love. xo
Wow. A scary but also relieving diagnosis- now you know what you’re dealing with. My nephew started having seizures at a very young age and went on meds. When he was 9ish, they took him off the meds and he hasn’t had a seizure since. He’s 13 now and a healthy, quirky teen.
My husband developed seizures when he was 18. He hasn’t had a grand mal in a decade and only a couple minor episodes. He’s also finally got on a medication with minimal side-effects and is doing great.
That’s not to say we haven’t had our share of difficulties but it is possible to live a regular life with epilepsy.
You have a beautiful boy. Thank you for being such a good, thoughtful mama.
Lots of love. And clarity is good. Wishing you guys strength as you start working towards solutions. Love!!
Andrea, I am sending a warm hug to each member of your lovely family. I love your thoughtful wisdom and acceptance of this challenge.
I don’t have a personal story to share, but thought that this boy’s story might encourage you:
http://www2.massgeneral.org/childhoodepilepsy/families/evan.htm
All the best,
Paula
Hi Andrea, wishing you and your family all the very best.
{{hugs & kisses}}
Miriam
(Australia)
In some ways it is very comforting to get an answer. And I am sure it will be difficult to accept this new normal. But you are such a giving person over the internet and as a mother that I am sure you will work through this and grow beautifully.
I do have a story! My grandmother has this form of epilepsy. She was diagnosed with it over 40 years ago, and once her medication was straightened out (I believe that took a few attempts), her seizures completely disappeared. I believe she has had two in 40 years, both at very stressful times with easily identifiable causes. The disease has had almost no effect on her life. I wish you the same for Ben.
That’s quite a bit to absorb and adapt to. I’m thinking of you and praying for you and your family…
I appreciate how you have thoughtfully shared this portion of Ben’s story. As difficult as it may be to wrap your head around all of this new information, you’ll do it and handle it, because that’s what mom’s do-it is clear that you are a good and loving mother! I hope that the medication works well for him so that he can resume all of the things that he loves to do. Sending love and hugs your way!
Just remember, life never throws anything your way that you can’t handle. Cherish the small bits and do one wonderful thing everyday – in the end you’ll only remember the good parts. xo
Sending you love and healing thoughts Andrea. Ben is teaching you so much, isn’t he? What a courageous soul! xo
Being a mama does make your heart so much bigger and wilder.. with all the pain and beauty that comes with children. I wish you all the best possible outcome.
The Green Girl of Wisconsin’s son is seizure free after a few years of medication! (http://melissawestemeier.blogspot.com/2011/02/praises.html)
Her son is well, and, I do believe, had few, if any, complications while he was medicated.
I know what it’s like to finally turn toward medication for a child when it finally appears that nothing else will make a difference. It’s good to take a breath and realize that Ben is missing a chemical that most of us have (which keeps us seizure free) and you’ll supply it.
It will be a great relief to live without the fear of him being injured, I’m sure.
I send hugs and good thoughts as you travel this path.
Lots of love to you and your family. Since biking and jungle gymming are out, maybe take him to a music store and let him pick any instrument he wants? Or a children’s cooking class? There are so many other fun ways to redirect that energy. Fingers crossed.
sending love to your family and Ben!
((((((((Andrea)))))))) (((((((((Ben))))))))
Andrea,
Having answers is definitely better than not knowing.
Ben has such a wonderful spirit, whether he grows out of it or learns to make it play nice, I am sure that he will not let it hinder him from doing what he wants and needs to do.
My dad has narcolepsy… the doctors think that it was probably caused by a high fever when he was 12 and had the measles. He spent a lot of tortuous years with no medication and no one understanding why he would fall asleep. Ultimately the lack of understanding by his teachers and peers caused him to drop out of high school. Through it all, however, my dad had little angels that looked out for him and took care of him at school because they knew he was a good person.
Ultimately though he found the way to make the most of his talents. After trying medication for a few years, he decided that he didn’t like the way the side effects made him behave. When I was 5 or so he stopped taking medication and learned how to anticipate when he would need extra sleep so he could be somewhere safe to take a nap. He will be 78 this year, he drove as part of his job for over 40 years and only ever had one accident where no one was hurt.
There are things that we cannot make go away, but we can certainly learn how to make them not ruin our lives.
I have an infinite faith in you and your lovely family using your light and your love to make this more than bearable for all of you.
I am sending you all the biggest hug and a ton of love!
Anna
Our daughter’s issue is very different than Ben’s.
But there are many things we have in common:
* a diagnosis helps a lot.
* hope helps even more.
* it is hard to explain to them that there are things they can no longer do but they understand so much more than we think they will
* it is great to help them find new ways to enjoy the lives they have and then sit back and watch them take control over their own lives
* even the toughest times, the most vigilant, uncertain, hovering moments teach beautiful, powerful, life-affirming lessons
* gratitude goes a really long way in helping you to make your way through this maze of parenting
* Ben’s story, like our precious Kristiana’s story, WILL be big and divine and wonder-filled, often times even in the midst of chaos and uncertainty
* digesting all of this new information takes a while and sometimes you will feel like you are chewing the same cud over and over again
* eventually, you find new patterns of life and love and rest and peace and grace and growth – and you are amazed at how strong you are and how brave your child can be
* and in the midst of all of it, there remains that sense of wonder related to being a parent, to being the mother of that child, and to knowing that there are great lessons to be learned and much love to be shared on this new stage of your life journey
Andrea, you are not alone, dear woman. I wish you peace. Deep, deep peace.
Andrea, sending you and your family prayers and healing energy. My friend has a little girl with epilepsy and it has been an intense journey. They did find a solution and she’s stopped having the seizures. They put her on a “ketogenic” diet and it worked without the meds. Not sure what it all entails, but wanted to share with you in case it sparked an interest. Not wanting to add to the overwhelm but share an instance of hope. Hugs to you and sweet Ben.
i started having seizures at 19, had them for about 6 years, haven’t had any since but am still medicated. It came at *exactly * the right time, i was making so many foolish decisions and I really had to buckle down and take care of myself. Those years were tough, and I still think about it every day, but I know I would not be where I am with a wonderful 3 year old girl and loving husband. It stopped me in my tracks…a good thing. Lots of love to you and yours.
Sending you love and peace and clarity. Hugs to your beautiful Ben.
Warmest, warmest thoughts to you and your family. I received a difficult and dismaying diagnosis in January but here’s a couple of things I’m learning along the way that I hope are helpful:
-the diagnosis can be scary and can launch you into a grief cycle. Be gentle with yourself. It’s hard but I remember Martha Beck’s words of wisdom about how true grief, when honoured properly, is bittersweet and cleansing.
-despite the obviously crappy aspects of a hard diagnosis, there are parts of it that are incredibly enabling rather than just constraining (as you’re learning with regards to medication etc, the possibility that Ben might outgrow this with age and so on)
-daily gratitude lists go a long, long way in helping one to appreciate the nuance and beauty of your life situation when all you want to do is say ‘why me/us/him?’
-a good counsellor/life coach are essential
-it’s perfectly okay to ask loved ones to simply *listen* if they have a tendency to jump in and offer advice; if listening is what you need more of. it ain’t rude. it’s just stating your needs.
That’s about all I can think of. I think you already know this stuff already, but anyway, there it is. Thinking of you guys.
Andrea, your perspective in light of such challenging news is inspirational. I pray that you will find strength, even during your darkest moments….peace within your soul (and Ben’s too)…and that grace and love will be a part of your day, everyday.
“Even in the midst of uncertainty I can see one thing clearly: That this is all part of Ben’s story. And it will be a wonderful story because he is a truly magical boy.”
That is so beautiful and really moving. Your story, and how you are holding it, reminds me of several things that happened this weekend.
I went to a Zen gathering for the first time. I wasn’t too excited about Zen because it seems so austere: “this is your life- we’re all going to die- we lose everything- face it- now, don’t you feel better?”
But it turned out to be lovely and very comforting. John Tarrant led the gathering. He told this koan: Mr. Ping was walking accross the bridge carrying sticks. He fell. His daughter threw herself on the ground next to him. “What are you doing?” he asked. “I’m helping daddy!” She said.
Then we meditated on that for 40 minutes! 🙂
Afterwards, Mr. Tarrant talked about the koan. He said he thought it was comic that she threw herself down, and empathetic. He talked about how we think mistakes, like falling in the dirt, are a wrong part of life to be corrected, but really, they are part of the fabric of life. His daughter was willing to really be with him in the reality of falling- not trying to get away from it.
He talked about how we are all in this reality that is MUCH bigger than we are. Reality is like this background music that we all share. We can’t change the music, but we *can* notice it and dance to it.
He talked about the spontaneity of the daughter who threw herself down on the ground, and brought that idea around to the idea of just being with people rather than trying to manage their emotions. I could relate that to comedy improv- if you try to be funny, it doesn’t work- you just have to honestly be yourself in the moment and you WILL be funny! 🙂 Just like the daughter was herself in the moment and actually was kind.
All of the things he said really resonated with me. They helped me feel calmer about some of the sad things that have happened in my family.
I hope you find it comforting as well. Sending good wishes for Magical Ben.
Even in the midst of something so difficult, you still offer us the gift of your (considerable) insight. Thank you.
I recently read that every difficult situation brings danger and fear, but also opportunity. I’m sure that this will bring an opportunity for you and for Ben, even if you can’t see it now. Sending all my best wishes.
Taking the Dreamlab course and feeling very much connected to you and grateful for you these days. Thank you for your courage to reveal what’s true. I will try to respond in kind in my own life, in honor of you. Sending big love.
Andrea, I don’t really know what to say. But I admire you and I trust that you already have everything you need (internal and external) to meet this challenge for your boy. Big hugs…
HOORAY FOR A DIAGNOSIS! Finally! Hooray for it being an early childhood disease, which he will outgrow! Hooray for a mama who has an end in sight (sort of) for this thing! And hooray for Ben, who has a name for the scariness!
There was a kid in my elementary school with MAE. He wore a bright red helmet until he stopped having seizures. I was wicked jealous of his helmet. He always had new stickers on it. Okay, realizing that I’m still jealous of that helmet…26 years later.
I was talking with some immunology students at my school the other day about the ketogenic diet, and one of them mentioned that it was being used at Johns Hopkins to control seizure disorders. Maybe something to look into for Ben?
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/epilepsy/about_us/ketogenic_diet.html
Maybe not, too. Just a thought.
Finally, I want to say that I am really proud of you and Matt and Ben (and Nico, although he hasn’t really paid his dues yet so I’m admittedly less proud of him) for the way you’ve been handling this thing. To express your strength and vulnerability so inspiringly through your fear has been such a gift to all of us. Talk about grace!
If you want any scholarly journal articles about MAE, let me know. I have access to most journals online and can email you whatever you’re looking for.
wishing you the best and knowing just a part of your strength from having read your blog over the past year-plus….You are a strong, beautiful woman and Ben is an amazing person.
Oh yes, a magical boy with a magical mama.
This might be totally tangential, but there are helper dogs who sense seizures ahead of time. I have no idea how they do it, but they do.
xoxo
you are showing us all the way to trust and faith.
thank you for being brave so we to can be brave Andrea.
And your magical boys has the sweetest eyes ever, no doubt he his held by sthg bigger and he knows it.
Am headed now to the first CTI summit in florida… am very excited and hopeful for what it will bring for the world.
I will send you special coactive healing vibes 😉
xoxox
love. big love. universal love.
sending them to you and ben and your whole family.
xo,
s
G’evening,
I found your blog some time ago, and was impressed/inspired enough to bookmark it. Checking in tonight, I found your post on drop seizures.
My daughter, Megan, now 13, has cerebral palsy and 6 different kinds of seizures, including drop. We think she has developed a new type of seizure, so going back in for new testing, but I will tell you that, having walked this walk for so long, it’s frightening, scary, and I didn’t want medication for her. I didn’t want one more thing to be “different” for her. I didn’t want… oh, hell, I didn’t want any of this for her.
But, here we are, a decade plus later, and her seizures are better. Controlled. She still has small ones. She still has them when she is sick or overheated or exhausted or D) all of the above at the same time. She has this new one that may be a seizure or it may just be a behavior, but we’re still here.
It’s hard to talk to people who haven’t walked through this (or collapsed and shook through this), but if you ever need, you’ve got one more family rooting for you in your corner. Please feel free to email any time you want. I’ll, of course, keep reading, and sending you our best.
Namaste,
Kimberly
Oh, and darn it, hit send too soon – the Marvelous Miss Megan is on her second seizure dog, Jake. His presence in her life has meant more comfort and peace for me, and increased her “coolness” status at the local school immensely. If you would like to know more about service dogs for seizures (either response or alert), would be happy to share.
Namaste.
Kimberly
{{{{Ben}}}} … You will be Fine… remember You are LOVED! -)
A man I love dearly named Steve suffered from epilepsy and seizures as a young child and went on to play baseball/football/basketball and be a great golfer too. Please know this too shall pass. …Karen Louisey 🙂 XOXOXO
I have nothing to offer but lots of love, which I am sending to all of you.
sending you all the love you need my dear…xoxoxo
Dear Andrea,
I had Doose Syn. when I was a child, and I’ll be 40 next week. Doose is genetic and indeed difficult to treat and to bear, but Ben will grow out of it and be ok.
Love.
Isa
Sending you big love.
He is a truly magical boy, that is for certain. And though I am sure this is a lot to take in and deal with, answers are good. I’m glad that now you can shift into the next phase of adjusting and adapting, rather than wondering and worrying.
(Though of course you’re a momma, so the worrying never goes away.)
I had some medical issues when I was little–operations and such. The nice thing is that at a young age, the other kids think it’s kind of cool and special.
I know this is a lot, but you all are full of love and hope and your own wisdom. You will find your way through this, of that I am sure.
And you have SO MANY people sending love and light your way. For you and that magical boy of yours.
xox
Andrea and Ben- Sending you all best wishes !!
I came over from Tea & Cookies and I just wanted to wish you all the very best. I’ll be thinking positive thoughts for you all.
you too are being held. sending the you and the whole family a huge love embrace.
From one nerve racked mother to another, I spent the first five years hovering over my daughter hoping to protect her from seizures. She is 20 now. Sweet girl, you are doing all of the right things and little Ben will ALWAYS know that…Love, Light and Strength. XOXO.
Years ago I worked for a pediatric neurologist and I was startled by how many kids came in with different kinds of epilepsy and then heartened by how many truly do just outgrow it. When my middle child was diagnosed with autism, I remember the specialist pointing out that he was at the high-functioning end and that he’d grow up to be one of those people you meet at a party who says something like, “You know, I had autism when I was growing up.” The part of that explanation I had to get past wasn’t that I’d never heard anyone say something like that at a party, but the notion of him even going to a party. Yet he’s gone to a couple middle school dances already, so there are parties in his future!
Ben is magic. You may never know the reasons why all of this is the way it is right now, but I so admire your trust. Ben is already an inspiration to the world — he gets it from his mom. Hugs and loving thoughts to all of you.
I love your words about how “this new dimension of life is calling us to be even better versions of ourselves.” So true of parenthood–always a new challenge.
Ben is certainly a magical boy (look at those old-soul eyes!) and he is blessed with such magical parents too… thinking about you all and wanting to somehow convey how beautiful is this story of yours, and how wonderful it is that you share these glimpses of it with the world. Holding you close in thoughts & prayers.
Sending you and Ben love and good wishes via Tea. I have a Ben too.
Sending you lots of love via Tea. The steel in your spine will get shinier while your heart will grow to hold all the love.
whata wonderful mama you are…ben picked the best mama to be with him…find good stuff to take to help your nervous system…angels on yalls bodies…love to you and ben
Your sweet boy with his sweet smile! I am sending you hope and lots of love and healing thoughts. And appreciating your wisdom even during the hard bits.
Your boy is so beautiful. He reminds me of my son (though my son is much younger – only 3) and it makes me feel like I know him when I see his picture. I can’t write beautifully, but he has a spark in him that shines out for all to see. xxx
What a wonderful, uplifting, stong, encouraging, post during this challenging time! I loved the part most when you said it is part of Ben’s story- so true. Thinking of you bunches during this time when you have answers and a path yet so many unknowns. I couldn’t help but wonder while reading if a helmet of sorts would help protect his head from possible falls so that he can keep participating in some of his favorite activities. Love you guys
My heart goes out to you all and you are so right when you say that Ben is magical, he really has always seemed that way to me. My story isn’t quite the same, but my nephew was born with a “cyst” (for lack of a better term) in the back of his head right at the neck line… my brother was told that his only son needed to avoid all contact type of sports and any activity where his head could be injured. They felt the loss (especially seeing as my brother himself was an all star QB in his days of growing up, it just seemed destined that his boy would be too) but Ryan, today, at 12 years old is happy, normal as can be and very active. The cyst never grew, so over time, they’ve released him from the every 3 month check up and have given them the go ahead to resume all activities… Ryan isn’t much interested in FBall, but he loves pretty much everything else. So who knew what his story would be, but I’m loving to be in the front row each and every day!!
Hang in there and embrace the magic..!
We love you! All four of you, from all (almost) four of us.
I know it is really scary, and it is/will be a process, but trust that it will be ok. My daughter has seizures (age 6) we are also hopeful she will grow out of them. She has been medicated for a year now but it has been quite a process of trial and error. The medication she is on now seems to control her seizures very well….we only see a few now, unfortunately her behavior has become nearly unbearable so we are going to switch medication again. My advice as a mom is to watch for behavior/personality changes. We were not aware of this side affect and it kind of sneaks up on you. Good Luck:) Wishing you all the best.
I got no stories but I am sending peace and love your direction…hang in there. So sorry to hear you have to go through this struggle.
xoxo
This is so much and so hard. I’m sending prayer and positive thoughts from Canada. Have you connected with Dani Shapiro? I believe (though I may be wrong) that her son suffered from seizures. She writes about it in her memoir – Devotion.
Your perspective is truly inspiring.
I had drop epilepsy when I was a child. It was especially scary for my mother as her only brother suffered from grand-mal seizures and she didn’t want me to have to go through that.
I believe I took Dilantin from age 7-12, then we titrated off of it and I was seizure free. I hope your boy’s epilepsy follows the same path.
Oh Andrea…my heart hurts for you and gorgeous Ben. I’m so glad you finally have answers and I’ll be praying that the meds help get everything under control.
I also have a child with epilepsy and sometimes it gets tough. What to do? Sometimes just breathe deeply, go for a walk, take a long shower, have a glass of wine 🙂
My husband is a neurologist and he says a lot of children do outgrow this –I will keep my fingers crossed for Ben to be one of them. I do hope years from now you will look back and think of this as something that just made you stronger.
Check CURE.COM and they will give you comfort when you learn how many people are trying to find a cure for this disorder. Best of luck
Wow, that is a lot for you and your sweet family. I know we’ve never met before, but I’m sending courage and peace your way. I hope that this new medication helps and that your son is seizure free soon! What a fortunate boy he is, to have you for his mother – you are modeling for him how to walk through life with peace, how to hold the struggles and the joys together in your hands.
Dear Superhero,
This is going to be long and I’m sorry in advance… This is something I wrote for Epilepsy Moms recently. My son’s story is good and hopeful! I know what you are going through. There is nothing more stressful than wondering when your child is going to have the next seizure and worrying that they will be safe. You will all get through this and statistics are HEAVILY on Ben’s side that he will outgrow his seizures. Most all children will and the fact that he was so young when they began works in his favor! His brain is growing at light speed, changing and adapting at all moments. I wish him healing. I wish you relief from stress. Here is what I wrote for Epilepsy Moms:
My son started having seizures in July 2008, he was almost 2. I
believe because he was weak from a viral illness just a week before and
then had acute exposure to xylene in the California fire season of that
year (I did a TON of research during this time and found that burning
pine forests release a neurotoxin called xylene that is know to cause
seizures in animals. I found some data that put Nathan exposure to
xylene at that fire as “acute”, based on his size and age.), his seizure
activity was triggered.
My family was on a vacation and, the day Nathan began having
seizures, we had been stopped at a roadblock in front of a raging forest
fire on a small forest road in California for 6 hours. We sat in our
car in heavy pine smoke for the entire time. The alternative was a 12
hour detour… 1 1/2 hours after the roadblock opened we reached the
coast and Nathan had his first seizure.
We didn’t know what it was but he had 3 of them before we took him
to the local community hospital. Nathans arms would raise up as if he
was trying to fly, his eyes would roll counter clockwise, he would go
unconscious, rapid breathing, often falling, shaking extremities…
He had multiple seizures every day for 3 months, often 8-25 each
day. At U.C.Davis he received all the usual tests and the seizure focal
point was in his right frontal lobe, as picked up by the EEG. His
seizures were “complex partial with secondary generalization”. He would
become unconscious and often fall during each seizure. Duration of a
typical seizure was about 45 seconds.
He has had 2 negative MRI’s. Both of his EEG’s were abnormal.
Nathan
was immediately put on Kepra which failed. It only made him aggressive,
spitting and hitting at his family, crying much more, etc. He also
stopped taking naps and just would not fall asleep. The pediatric
neurology team in Utah, where we live, added Phenobarbital on top of the
Keppra. It did not work either but, instead, caused DRESS, a
potentially lethal allergic reaction to the drug. Nathan was
hospitalized for treatment with steroids and recovered. It was not
pretty.
After Nathan and I got back from the hospital I put him on a gluten
free diet, zero sugar, lots of meat and fats and fresh fruits and
veggies, also a pro-biotic and a multivitamin . We also started giving
him 2 Nordic Naturals Jr. fish oil capsules every day.
His seizures did not stop and continued multiple times each day and night.
At the end of October 2008 Nathan accidentally got into his fish oil bottle
and ate, to my best estimation, 50 capsules. 2 days later his seizures
stopped completely! I put two and two together and raised his daily
dosage of fish oil from 2 capsules to 12 capsules a day (his
pediatrician said this was safe). We also titrated him off of his
Keppra, doing so in 2.5 months instead of the almost year the
neurologists would have recommended. We kept him gluten/sugar free for
about 6 months and slowly introduced a regular diet because the seizures
had not returned.
Long story short, if Nathan receives daily fish oil (we give him 4
capsules/day now for a total of 2000mg) his is seizure free. In the
summer of 2009 he missed a week of fish oil and it was followed by a day
of seizures (5-7). I loaded him up on fish oil that night and they
stopped. This September, 2010, he had one seizure as I was putting him
to bed. He had been staying up very late and was tired. He had not missed any fish oil to my knowledge. My husband and I are also going through a divorce and the stress level
in Nathans life has been high. Of course I gave him a much higher dose
of fish oil for the next couple of days and he did not have another
seizure.
So, for Nathan, I would say his triggers are:
* Lack of long chain fatty acids in his brain (so we give him fish oil!)
* Lack of sleep
* Emotional stress
* any
viral illness can additionally weaken his system making him more likely
to have seizures if any of the above three are lacking.
We rarely think about seizures any longer. I trust that the fish
oil really is what Nathans brain needs. I read a study about how some
people cannot metabolize long chain fatty acids in their brain and those
people will need ongoing supplementation with fish oil (or other source
of long chain fatty acids). I do think Nathan will continue to be at
risk for further seizure activity.
We thought Nathan had apraxia. During that initial 3 month period in 2008 Nathan stopped talking
for all intents and purposes, saying only “oof”. He now has severe
speech issues and receives speech therapy multiple times a week.They think he has a “severe phonological disorder” instead of apraxia now. He is
making progress though. I can understand much of what he says but he
chooses not to speak very often and most other people cannot understand
him. He is now almost 4 1/2 years old. He also has some fine and gross
motor delay and some dyspraxia.
If you didn’t know about these things you would not really notice
when you met Nathan (expcept perhaps the speech issues!). His
disabilities are mainly subtle. He is a happy and very bright child. As
all of you will know intimately, there are often not a lot of answers
our Doctors can give us. They know so little about the brain. That means
that so much of this, our finding solutions for our children, is in our
own hands.
My bigges piece of advice to any parent or anyone with seizures, is
to do your own research!! Read as much as you can, find out what has
worked for others and then try it if possible and see what happens. Do
not have so much faith in your neurologist that you stop looking for
other solutions!! Remember, they do not know very much about the
brain!!! My husband asked the top pediatric neurologist at U.C.Davis
“how does Keppra stop seizures?”. She looked us straight in the eye,
paused for a long time, and said, “We don’t know. All we know is that it
has stopped seizures in animals and now we use it on children.” She
also said, “It’s frightening how much we DON’T know about the brain.”
As a parent, epilepsy is the most frightening thing I have
experienced. I feel for each and every one of you going through this.
Don’t give up! Look for alternative answers and look at it like a very
large and difficult puzzle. If you get enough of the pieces close enough
together some things will begin to be clear in your particular case.
Happy New Year to you all,
Jenny
Salt Lake City, Utah
Just a quick comment – my son had very severe, almost constant, epilepsy as a result of a head injury at nine months. When he was ten my sister found out about the ketogenic diet and I found a dietitian willing to help us try that. He was on the diet for two years and was seizure free the entire time.
Unfortunately (you can’t stay on the diet forever!) his seizures did return but nowhere near as bad as they were pre-diet. If you can find a copy of the movie “First do no Harm” there are testimonials at the end of that from people who recovered completely, after being on this diet.
If you’d like any more information about how we did it, please feel free to contact me.
Best wishes.
I am here from Tea & Cookies sending you positive thoughts and vibes, strength and prayers. I think Ben and you will pull through and from this positive good things will happen. I also think you already are a good person who has helped others besides Tea “BELIEVE” and so you will reap that benefit. More love, strength, and blessings from Palau.
Dear Superhero Family,
What I know in my heart is that you all have everything it takes for you to continue on this path of life. The love and support that surrounds you and holds you will feed you when you are needing it. I am holding you all in the peace and light that is the magic of the universe. My heart and love are yours.
Love,
Jen
I read on Tea – B E L I E V E – I think that is good for all of us. There are special dogs that are trained to recognize when a seizure is coming to get the person down on the ground before it happens where they are safe. They are service dogs so doggie would go everywhere with your child. This might be a consideration.
Sending MUCH MUCH MUCH loving and encouraging thoughts your way, Andrea!!! <3 <3 <3
Ben is absolutely perfect. He is right where he needs to be, with you as parents. You will find your way through this.
Love and grace to you all.
Hello Andrea, I read your post before bed, which turned out not to be for me as I walked the floors with a sick boy, night three. And in some magical way, you were with me all night. As I sent prayers forward for Sam to be ok today, and thought of my own capacity which at times this week has felt so slight and enormous at others, I thought of
You and Ben… Sent prayers for you and yours. And cosmically, your story affected mine and gave me some strength. I will keep sending the love…and so sincerely love this opportunity we all have found in blogging and sharing, to hold one another up. From canada – sending you big light…
He is absolutely adorable and in great hands with you as a parent.
I swiped this quote from a blog you probably know:
“There is no such thing as a complete lack of order, only a design so vast it appears unrepetitive up close.”
You are up so close here. I love that you are looking ahead to a time when the design will reveal itself.
Hang in there; you are indeed a superhero mom, and I admire you!
Dear Andrea,
i am really sorry to hear this. I can imagine how you feel because my brother got epilepsy for years now. And i know, the seizures are really hard and terrible to watch especially for family members… He had one in my car, i was so shocked… But now he takes really good medicine and there was no seizure for two years now (*knock on wood*). 🙂 Poor little Ben, for my brother was this hard too. He was a teenager when it’s started and all this “stay good, healthy and so on…” made him angry, he felt bad after every seizure and he was really hard to handle…
But i am sure, Ben gets all the love he needs and you will learn to live with it…
All my thoughts are with you.
Susanne from Germany
P.S.: sorry again for my terrible english…
My brother and sister in law also have a story about a diagnosis they didn’t want to hear, but I really believe that’s it’s almost a relief to knowing what you’re dealing it. I mean, I have to believe that there’s some kind of grief to hearing something you don’t want to hear, but also a relief to know what you’re dealing with. I do hope for your sake and his that medication isn’t too difficult or stressful on his system or on you, and let’s all cross our fingers that it’s something he grows out of or at least is something that can be managed easily and efficiently. Many good, positive thoughts from me to all of you.
sending much love and positive energy to your beautiful family and especially to dear sweet Ben.
oh sweetie. i am so sorry. what a scary thing for a parent (and child) to go through! 🙁 our daughter had been having seizures (her whole life, she’s 3 now) in her sleep and it wasn’t until we had a sleep study done that the dr’s suspected something was wrong. we kinda put it on the back burner as we were moving across the country. during said move she had a 35 minute seizure in my arms! terrifying.
she is now on tryleptal (since august ’10) and hasn’t had a seizure since. she has also made leaps and bounds in her language development.
we once dropped off a script for her tryleptal and when i went to pick it up the pharmacy said they didn’t carry it anymore. i had given her her last dose that morning and she needed her second dose in just a short time. i literally flipped out and sat in my car sobbing at the thought of her going just one night without her meds!!! luckily our pedi worked her magic & found some. like i said, she had made so much progress since she started the tryleptal that i didn’t want her to miss a single dose. that stuff is liquid gold!
the doctor is currently worried that the cause of her seizures in san filippo syndrome. 🙁 we are devastated, and holding our breath while we wait for more testing…and hoping that it is negative.
i’m rambling. but i understand the feeling of your world crashing in. watching your child’s world crash in. all the unknowns, the blind steps, and bits of hope that you try to cling to. it is so, so hard. i’m sorry that your family has to face this. 🙁
Oh my goodness. I know you must feel so relieved to have a diagnosis and a plan to help Ben. It is so super scary when there is something like this to deal with but you are extraordinarily capable. You are Ben’s mama! Sending you love, and precious Ben, too. That boy is loved!
Andrea,
I think you know that my oldest daughter is a Type 1 diabetic. We found out when my second daughter was just about three months old.
While I remember the news being devastating and the fear for her absolutely overwhelming, I also remember something, some strength I never realized I possessed took over in me. I seriously thought I would just have a nervous breakdown…new baby and a three year old with a life threatening illness I had to take care of daily.
Yet, I didn’t. I did it…I kept it all going and taken care of. I think it was about a year into it that I realized that I had it mostly under control…my fear, my sadness, my anxiety and my ability to cope with all I had on my plate.
It was then I knew, without a doubt, that motherhood had made it possible. There is some invisible force that enters a woman when she becomes a mom…I liken it to the adrenaline they say one gets in an emergency, where you feel nothing and can lift a car off someone if you must.
It’s a true force…something beyond everything else a person experiences in life.
You will do what you need to for Ben. You will carry it all and mother both your children and do it well (and not on some days). Some days it will be too much, you will feel defeated and panicked and just plan scared to death, but mostly you will feel empowered and capable of doing it.
I’m sorry Ben has this disorder. I can so empathize with watching and worry. When those times hit you hard, just think of all the mother’s who are doing the same thing and pull some strength from us…and the ones before us, who’ve carried children on their backs, walking miles just to get them food or help. Perhaps it is the collected strength and sheer willpower of all the mother’s who’ve come before us that keeps us all going.
You can do it. I know you can.
God bless him, he is beautiful:)
I have no stories (about epilepsy), but am sending you giant heaps of love and support. What a mixed bag of relief it must be to know that there is something you can do for sweet Ben.
Love/warmth/courage/grace (as if you need it:)
My cousin was 12 before diagnosis. She has blackout seizures where she just goes blank from neurological misfirings and overload. Eventually we learned she doesn’t have a part of her brain but rather a water blister in place, for lack of a better description. We resisted the medications then surrendered in desperation. It was the best choice for her. We hold on to the hope that she will outgrow the seizures and perhaps the meds.
Every situation is different but each is threaded together by many sames.
I wish you hope and love and comfort.
I am late to reading this news. Ben, a stranger child to a momma I have never met, manages to hold a special grip on my heart.And every tome you have written about his being sick this past year I have been unexpectedly overcome with grief. He is simply an old soul, with a magic and ancient knowledge that came through in photos even when he was a very small infant. And I just have to believe that all of that wisdom he arrived with will come shining through as you work through this new normal of diagnosis and medication.
No, none of it makes sense or seems fair right now. The timing is shit You have a newborn, another boy child to worry about. Sometimes you just have to say, “This sucks. I didn’t ask for it.” And then, as you wisely said, you let it go. You surrender and let it be. And in time, the why will reveal itself.
So much love radiating from heart for you, dear Matt, tiny Nico, And Sweet, darling Ben.
When I was 2 years old I was diagnosed with epilepsy (sorry, I don’t know what kind it was, all I know is that I had seizures where I fell to the ground and seized, my brother (who was diagnosed at 7) had petit-mal seizures that looked like spacing out. I remember passing out a few times and waking up tired and at home not knowing how I’d gotten there. I remember cherry flavoured medicine and EEGs every 3 months…
And as mysteriously as it showed up, it disappeared… either the medication worked or sometimes children outgrow it, but both my brother and I “outgrew” epilepsy and none of our children show signs of it at all…
So there is hope that sometimes miracles happen and it gets better on its own…
Oh mama. You are always brave, so brave, and so open. I am just holding you four in my heart + Ben in particular. He’s the same age as my oldest…
Andrea, I am just catching up here. I think everything you wrote is so true about how things go, how to take them/ face them, about Ben’s story and about being a parent. Just so true. I am sorry you are all dealing w/ this but trust and have faith that all will be okay. Ben is so safe in your and your husband’s care and trust it will all be alright. I wrote a long while back w/ the info. for a pediatric neurologist, we have some stuff here too but all is okay, you just have to trust your instincts as a mom. *There just are no words for how much we love our children which is what “grows our capacity” (love that) for all that you mentioned. It is an undefinable love a mother has for her children, yet you express it so purely in your pictures and thoughts. Will be sending prayers for your little one and your family. xo L
Coming to you via Tea&Cookies blog and wishing you strength and patience.
Someone told me once, when I was worried about a very young loved one, that kids are more resilient than we think. Perhaps the secret is that they don’t automatically think and anticipate the worst, as we adults do.
Sending you and your family positive vibes and best wishes to your little boy. He will come through it.
love, love, love to all of you.
No stories here either…just sending lots of good & healing thoughts your way.
so proud of ben and you and matt. your love and bravery will get you through. love to you all, c and co. x
more love & hugs to all of you.
sending you all lots of love and healing thoughts xxx
Before I read your post, I looked at Ben’s beautiful face and thought “what a truly lovely boy.” Then I read the post. My heart breaks and yet, I know that this will all be for the best. That little boy will be stronger for this. He will triumph. You all will. It sounds like you’re making the best decisions you can given the information you have at hand. My thoughts are with you all.
Thinking of you with love and strength.
That is the most special photo of Ben – he is adorable!
Hugs
Bx
I was 19 when I had my first seizure, and I turned 21 in the hospital after a second seizure, which is when i was diagnosed with epilepsy. I don’t know anything about the specific condition your son has nor what it is like to be a young child and deal with it. But I can tell you that there was a time in my life when I had accepted that I could not have children and when I had accepted regular seizures as a part of my existence (mine were mostly partial complex). Today I have been seizure free for almost 11 years and I have 2 beautiful children. I am still on medicine, mostly because I am too cautious to live without it, and while I am sleepier than your average person it has not stopped me from doing anything I want to do. For me brain surgery was the answer. If I can answer any questions for you or lend you any support in any way please do not hesitate to email. I wish your son the best.
Having been down this same road 27 years ago with my son, I can tell you his body will adjust to the medication over time. There may be things he can’t do for safety reasons–for now–not forever–it’s just how things are for now. You may want to get a helmet it will help and give you some reassurance. We plastered my son’s with stickers and made it a “cool thing”.
Wherever Ben’s journey takes you–you can do this–you are his mother–stay hopeful. You are blessed.
I had a dream to start my organization, however I did not earn enough amount of money to do it. Thank goodness my close mate recommended to use the loan. Hence I received the commercial loan and made real my old dream.
Hello. And Bye.
I have been thinking about you all day since reading this post. It reminds me of the news 20 minutes after Max was born that he has Down syndrome. The news took me off guard. Shocked me. Even though I knew in my entire being for the entire pregnancy that God or the Universe was going to bring me the exact, perfect child for me and that we weren’t going to have the Amnio because it wouldn’t change anything for us. We felt that we wouldn’t change or terminate the pregnancy no matter who our child was or what issues that child may have. Yet the news was still shocking and took time to digest. And now I know for certain that Max wouldn’t be who he is if he didn’t have Down syndrome. His journey is his own and I am here as a witness to it and to help him live his best life ever. Which of course I don’t really know what HIS best life could be – but I want to nurture whatever he shows me to be his interests and advocate for him and others like him and educate others of the amazing-ness that is Max and others with Ds. I cannot imagine Max any other way. He wouldn’t be Max without Ds although he is not his diagnosis. I do follow him around to make sure he doesn’t hurt himself in certain situations that others his age don’t have issues with. I often don’t feel I’m good enough for this job, I don’t feel I have the attention, the smarts, the motherly instincts, etc…But when I was pregnant I do recall feeling that the universe was giving me the child I was suppose to have. And so why wouldn’t I be in just the right place for my son? The universe surely wouldn’t give me the perfect child if I wasn’t the perfect match for him, insecurities and overwhelm and all.
I send you so much love as you learn more about Ben and learn all about how amazing of a mom you are and how ready you really are to handle this news. I am always here and support you all the way and holding you in my thoughts and heart.
xo
*c
Andrea your little boy is so very beautiful. I just want to somehow let you know that you’re not alone in your fear, worry, or strength and joy. Motherhood is a communion, after all, and mothers all over the world for all sorts of reasons have serious reasons to worry about their kids. I take comfort in knowing we’re together, that we can love, laugh and suffer in communion with each other. I believe there is special strength afforded to mothers and you can reach up and pull it out of the sky when you need it. It’s in the air and we send it to each other in waves of love. When you need to lose it for a little while, do it. Fear is real. Worry is an old friend to be acknowledged. And I also know someone who grew out of epilepsy. I’m holding your family up in my thoughts and prayers.
Wonderful and lovely family! 🙂
I haven’t looked at your website for some time. It seems like yesterday that I ordered two necklaces from you, gave one to my daughter, and kept one for myself. (Both of us have enjoyed wearing them!) I recall your early pictures of Ben as a baby. He has grown into a beautiful boy!
This news re Ben’s health must be very difficult to take in. The bad news you have received. The good is that advances in the understanding and treatment of epilepsy are significant.
I will be thinking of you and yours, and sending good thoughts, hope, and prayers your way.
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Hello good neighbors,
It’s Elisa, AKA Mama de Eli.
Just read your post about being there to protect Ben from falls. I just want you to know that I get the hovering part of it all too well. I spent 6 years hovering over Eli trying to prevent the fractures that befall kids with his rare bone condition. I still have to cope with a lot of anxiety; mine, and now that he is a fully-incarnated, conscious nine-year-old, his anxiety, too. He used to rely on my sense of things, but at age nine, my job is more about supporting him while he processes his own experience. That’s a whole other task that I’ve had to grow into.
Other parts of your experience might be a mystery to me, but I do know the desperate desire to protect your little one, and the incredible attention it demands.
I also know about jungle gyms and explaining to a child how he might have to do things differently.
The challenge has changed me. Humbled me. Strengthened me. And at time exhausted me. I felt misunderstood when other parents would comment on my ‘ability’ to stay home saying things like “It’s nice you can afford to do that.” Afford it??? Eli couldn’t afford to have me do anything else.
This winter has brought two surgeries and an arm cast. It was his 7th fracture in 9 years. Am I doing a good job of protecting him? I think so. But I am just a part of his karma. Who knows how he will be shaped by these experiences. So far, I can say that he is mature and sensitive well beyond his years. He understands feelings very well. He says things like, “I’m just going to sit here for a minute and feel what I feel.” And he’s incredibly perceptive about what I’m feeling, often explaining me better than I can explain myself. He takes charge of doctors and tells them what’s what. During appointments, he does most of the talking, and makes many of the decisions. He has strength that only adversity could produce.
One night in January, Eli and I woke up around midnight in the big bed. He was in a splint, with a painful fracture, waiting for surgery the next morning. I’d been half-sleeping with my arm around him to keep him still. I told him, “I feel so sad when something breaks.” He said, “Mama, everything is fine. You should just relax.”
I have no doubt about your ability to shepherd Ben through this. It seems to me that he chose his parents very very well! My only advice would be to try not to project anxiety in his direction. He will learn enough about fear by himself.
Lots of love to you, beautiful family,
Elisa