I just returned from cleaning up Joshua's grave. Two hours of wiping down marble, weeding, mulching and planting. The entire time tears were streaming as I went through my constant "if only" questions. Sigh, this has been such a long journey.... and yet.... it is only the beginning.
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It's a Boy!
In 1998, we were blessed with a sweet little baby boy who completed our family of 5. He joined 2 older sisters and was a joy to us all. Life went on beautifully for us and we were very content until the week before Christmas 2006, when we received a diagnosis of partial frontal lobe epilepsy with gelastic seizures following some "issues" Josh had begun to show in the weeks preceeding.
What is going on?
Joshua would be fine one minute and then it was as though someone turned off his switch. He would freeze in place for 10 seconds, the switch would be switched back on, he would give a little giggle, and he was back to normal. At first, these giggle freezes would occur several times a day. Anti-seizure medicine worked beautifully and for 19 months he was seizure free. When he began to have the giggle seizures again it was following a growth spurt and an dosage adjustment kept us seizure free for several months.
We faithfully took him for his MRIs, EEGs, made sure he took his seizure meds, and awaited puberty. We were told he was a marginal epileptic who would likely outgrow this when puberty set in, so Joshua spent the next 3 years checking for any telltale sign of puberty, and was thrilled when those first dark hairs began to appear.
We were very careful with Josh around water, didn't allow him to ski, and made him a great sideline football fan instead of player. In fact, I remember laughing at his attempts to try to convince the doctor to let him play football.. Josh assured us he could play....no problem! The doctor's answer remained a resounding NO.
Our first Gran Mal
In June 2009, shortly upon our return to the US, Joshua suffered his first gran mal seizure. We were unprepared since the doctors had initially told us Josh would never have a full blown gran mal seizures. It lasted 45 minutes, was absolutely terrifying to watch and resulted in an ambulance ride to the hospital as a precaution. Josh was very cranky but had no memory of the episode. A second grand mal struck the next morning but we were prepared this time and medicine stopped the seizure immediately.
Over the next several months life went back to "normal." We visited our new Neurologist faithfully, had EEGs which continually showed no unusual brain activity. We even completed a 48 hour "take home" version where the probes were attached to numerous areas of Joshua's scalp, and a "black box" attached to a fanny pack around Joshua's waist recorded brain activity over the next 48 hours. It gets tricky because they wrap your head in gauze like brain surgery and you can't play for 48 hours. Josh was such a good sport...we put a stocking hat on over his bulky gauzed head and off to visit friends he went. No big deal. That test also came back with inconclusive results.
Joshua's prognosis gradually changed as he began to show signs of possible epilepsy in the right side in addition to the left side of his brain, and our hopes of outgrowing it were becoming less of a reality. Josh even began to talk about having brain surgery in the hopes of overcoming this terrible thing that ruled his world. Still he kept his spirits up and continued to live life as a very happy outgoing kid.
A strange week
The week before his death, Josh called us on his cell phone and asked us to come help him in his room just upstairs. A strange request, but we ran upstairs to see what was wrong. He seemed to be having a strange seizure that somehow seemed to paralyze him yet allowed him to talk to us and call for help. We weren't even sure it was a seizure at first, but once we administered his meds, he came out of it instantly. He recovered quickly, but we kept him home from school that Monday. By Tuesday, he was his normal self, and Thursday we were off to the lab to draw blood to check his anti epileptic med levels since we suspected it was time to adjust his dosages. As we had seen before, growth spurts were often the times when he would have an "episode" after months of stability.
The Friday before Thanksgiving he seemed extremely carefree and happy. He was a healthy laughing 12 year old boy who was goofing around with us just before bed and after bed time we know he secretly texted his best friend past midnight.
He wanted to help me stain our backyard fence that Saturday morning so as I baked cinnamon rolls, tidied up the house a bit, I wondered where he was. He was usually an early riser and it was nearly 9:00 am. I went up to check on him and remember how odd it was to find his bedroom door was closed. We always kept it open so we could hear him at night.
The moment I opened the door I knew instantly something was wrong. There was a feeling in the air. I went to Josh and found him face down unresponsive. I must have let out a scream since both girls came running in as I rushed for a phone and dialed 911. The 911 operator told me to perform CPR so I moved him to the floor. There was still some warmth to him so I suddenly had hope. I won't go into it but I know his airway was not impeded and suffocation was not the issue. I remember performing CPR begging God to not take him, while my older daughter stayed on the phone with 911 and my younger daughter went to the door for the EMTs' arrival.
The paramedics arrived quickly and worked on him for however long it took me to run to my room to throw on a pair of jeans for the ambulance ride to the hospital. As I ran back towards his room they met me in the hallway and uttered those dreaded words "we're sorry he's gone". My world was changed forever.
In those early days, months and now year since I heard those words I have played in my mind thousands of times what I could have done differently. Consultations with the neurologist and research has led me to realize Joshua died from SUDEP. Sadly, he fits the profile of a high percentage of SUDEP victims who were otherwise healthy epileptic boys between the ages of 12-15. His seizures had been greatly controlled but he did have one within days of his death.
SUDEP does not have a cure.
Let me say now, there is no cure for SUDEP at this time. In one medical case I read there were 15 hospitalized epileptics who suffered cardiac/respiratory arrest during seizure. 12 of the 15 died with trained medical personnel working to save them right there in the hospital. 3 of the 15 were revived but sustained devastating irreversible brain damage.
Those who have seen or experienced seizures can attest to how the brain must be absolutely going haywire. Epileptics lose control, lose their bearings, and often suffer memory loss. So it is understandable that the brain could mess up the signaling to the heart to keep beating, and to the lungs to keep breathing. However, many subject matter experts believe the neurons in the brain get crossed sending signals which lead to cardiac arrest/respiratory arrest and instant death.
There were signs of seizure when we found Joshua so we know he had seized. When it happened and for how long we don't know. What kind of seizure he experienced is also unknown as to our knowledge Josh only had 4 gran mal seizures during the entire time since his diagnosis. He had been using multiple anti-epileptic medications (layering) to control his seizures, and had good results over the four years of living with epilepsy.
Yet in a heartbeat he was gone.
If only:
What I wish we would have done differently.....
1. I wish I had been made aware by the doctors of the possibility of death outside of drowning, or driving while seizing. SUDEP was never even brought to our attention by any of the neurologists or other physicians.
2. I wish I had been more proactive overall by insisting Josh get rid of that fan which made the baby monitor useless. He would have cried and carried on but too bad. sigh.
3. I wish we had made someone sleep in his room with him or in our room on another bed every night.
4. I wish I had been more educated in the medicines used for epilepsy. They are very strong medications and accepting the recommendation of a specialist should have led me to become more educated in epileptic medications.
5. I wish I had taken it more seriously and realized it was more than a nuisance we hoped Josh would outgrow.
6. I wish I had been more adamant with the doctor that week. We had been through this before and Pediatric Neurologists are very rare so most of my communication was done via emails which were responded to promptly even when the office phone was busy.
7. I wish I had researched all help devices out there and outfitted our home, Joshua's bed room, and even Joshua with everything possible even if not fully tested yet.
Here's a website that can share more details on these devices and more.
http://www.dannydid.org/sudep/devices-technology/
8. I wish I had checked on him as soon as I woke up that morning as when he had the seizures they seemed to occur as he was waking up in the morning. That Saturday morning, I just wanted to let him sleep in as he was a growing boy.
9. I wish I had my son with me here and now.
All indicators and medical specialists I have spoken with share that when SUDEP appears there is not much we can do but I would like to have been given the chance to prove them wrong.
Several families have shared with me how your lives are impacted by epilepsy. Sadly, some of those stories are from those trying to live with life after SUDEP. It has been 16 months into our journey and it just felt like it was time that I shared our story and those things I wish someone had told me 5 1/2 years ago when Joshua was diagnosed with epilepsy. Please know this blog is my personal opinion only. There are many reputable resources on epilepsy available today for those of you facing epilepsy head on...and I suggest you keep educating yourselves. Here are three sites that I regularly turn to:
The National Epilepsy Foundation www.epilepsyfoundation.org which leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Our family initially planned to walk as 5 Newmans to raise money for research, no we walk in memory of one sweet and ornery boy to raise epilepsy awareness and research funds.
50,000 epileptics will die this year
50,000 people die from epilepsy every year in unlimited circumstances but of those, 3,000-5,000 will die of SUDEP. It may seem like a small number but try telling that to the family that finds their child unresponsive on a normal unassuming Saturday morning in suburban life. If there is a way to prevent it, why not try?
I would say this if you are an epileptic, or know someone who is an epileptic. Live life to the fullest, educate yourself, and take your meds. I know they can be a real drag with ugly side effects for some of you, but keep trying. We changed medicines and adjusted dosages multiple times to find what worked best for us.
Epilepsy has brought me to places I could never imagine, including advocating for those living with epilepsy and more research. This I do for my Joshie, my sweet and Ornery One!
Hugs,
Sherri
In 1998, we were blessed with a sweet little baby boy who completed our family of 5. He joined 2 older sisters and was a joy to us all. Life went on beautifully for us and we were very content until the week before Christmas 2006, when we received a diagnosis of partial frontal lobe epilepsy with gelastic seizures following some "issues" Josh had begun to show in the weeks preceeding.
What is going on?
Joshua would be fine one minute and then it was as though someone turned off his switch. He would freeze in place for 10 seconds, the switch would be switched back on, he would give a little giggle, and he was back to normal. At first, these giggle freezes would occur several times a day. Anti-seizure medicine worked beautifully and for 19 months he was seizure free. When he began to have the giggle seizures again it was following a growth spurt and an dosage adjustment kept us seizure free for several months.
We faithfully took him for his MRIs, EEGs, made sure he took his seizure meds, and awaited puberty. We were told he was a marginal epileptic who would likely outgrow this when puberty set in, so Joshua spent the next 3 years checking for any telltale sign of puberty, and was thrilled when those first dark hairs began to appear.
We were very careful with Josh around water, didn't allow him to ski, and made him a great sideline football fan instead of player. In fact, I remember laughing at his attempts to try to convince the doctor to let him play football.. Josh assured us he could play....no problem! The doctor's answer remained a resounding NO.
Our first Gran Mal
In June 2009, shortly upon our return to the US, Joshua suffered his first gran mal seizure. We were unprepared since the doctors had initially told us Josh would never have a full blown gran mal seizures. It lasted 45 minutes, was absolutely terrifying to watch and resulted in an ambulance ride to the hospital as a precaution. Josh was very cranky but had no memory of the episode. A second grand mal struck the next morning but we were prepared this time and medicine stopped the seizure immediately.
Over the next several months life went back to "normal." We visited our new Neurologist faithfully, had EEGs which continually showed no unusual brain activity. We even completed a 48 hour "take home" version where the probes were attached to numerous areas of Joshua's scalp, and a "black box" attached to a fanny pack around Joshua's waist recorded brain activity over the next 48 hours. It gets tricky because they wrap your head in gauze like brain surgery and you can't play for 48 hours. Josh was such a good sport...we put a stocking hat on over his bulky gauzed head and off to visit friends he went. No big deal. That test also came back with inconclusive results.
Joshua's prognosis gradually changed as he began to show signs of possible epilepsy in the right side in addition to the left side of his brain, and our hopes of outgrowing it were becoming less of a reality. Josh even began to talk about having brain surgery in the hopes of overcoming this terrible thing that ruled his world. Still he kept his spirits up and continued to live life as a very happy outgoing kid.
A strange week
The week before his death, Josh called us on his cell phone and asked us to come help him in his room just upstairs. A strange request, but we ran upstairs to see what was wrong. He seemed to be having a strange seizure that somehow seemed to paralyze him yet allowed him to talk to us and call for help. We weren't even sure it was a seizure at first, but once we administered his meds, he came out of it instantly. He recovered quickly, but we kept him home from school that Monday. By Tuesday, he was his normal self, and Thursday we were off to the lab to draw blood to check his anti epileptic med levels since we suspected it was time to adjust his dosages. As we had seen before, growth spurts were often the times when he would have an "episode" after months of stability.
The Friday before Thanksgiving he seemed extremely carefree and happy. He was a healthy laughing 12 year old boy who was goofing around with us just before bed and after bed time we know he secretly texted his best friend past midnight.
He wanted to help me stain our backyard fence that Saturday morning so as I baked cinnamon rolls, tidied up the house a bit, I wondered where he was. He was usually an early riser and it was nearly 9:00 am. I went up to check on him and remember how odd it was to find his bedroom door was closed. We always kept it open so we could hear him at night.
The moment I opened the door I knew instantly something was wrong. There was a feeling in the air. I went to Josh and found him face down unresponsive. I must have let out a scream since both girls came running in as I rushed for a phone and dialed 911. The 911 operator told me to perform CPR so I moved him to the floor. There was still some warmth to him so I suddenly had hope. I won't go into it but I know his airway was not impeded and suffocation was not the issue. I remember performing CPR begging God to not take him, while my older daughter stayed on the phone with 911 and my younger daughter went to the door for the EMTs' arrival.
The paramedics arrived quickly and worked on him for however long it took me to run to my room to throw on a pair of jeans for the ambulance ride to the hospital. As I ran back towards his room they met me in the hallway and uttered those dreaded words "we're sorry he's gone". My world was changed forever.
In those early days, months and now year since I heard those words I have played in my mind thousands of times what I could have done differently. Consultations with the neurologist and research has led me to realize Joshua died from SUDEP. Sadly, he fits the profile of a high percentage of SUDEP victims who were otherwise healthy epileptic boys between the ages of 12-15. His seizures had been greatly controlled but he did have one within days of his death.
SUDEP does not have a cure.
Let me say now, there is no cure for SUDEP at this time. In one medical case I read there were 15 hospitalized epileptics who suffered cardiac/respiratory arrest during seizure. 12 of the 15 died with trained medical personnel working to save them right there in the hospital. 3 of the 15 were revived but sustained devastating irreversible brain damage.
Those who have seen or experienced seizures can attest to how the brain must be absolutely going haywire. Epileptics lose control, lose their bearings, and often suffer memory loss. So it is understandable that the brain could mess up the signaling to the heart to keep beating, and to the lungs to keep breathing. However, many subject matter experts believe the neurons in the brain get crossed sending signals which lead to cardiac arrest/respiratory arrest and instant death.
There were signs of seizure when we found Joshua so we know he had seized. When it happened and for how long we don't know. What kind of seizure he experienced is also unknown as to our knowledge Josh only had 4 gran mal seizures during the entire time since his diagnosis. He had been using multiple anti-epileptic medications (layering) to control his seizures, and had good results over the four years of living with epilepsy.
Yet in a heartbeat he was gone.
If only:
What I wish we would have done differently.....
1. I wish I had been made aware by the doctors of the possibility of death outside of drowning, or driving while seizing. SUDEP was never even brought to our attention by any of the neurologists or other physicians.
2. I wish I had been more proactive overall by insisting Josh get rid of that fan which made the baby monitor useless. He would have cried and carried on but too bad. sigh.
3. I wish we had made someone sleep in his room with him or in our room on another bed every night.
4. I wish I had been more educated in the medicines used for epilepsy. They are very strong medications and accepting the recommendation of a specialist should have led me to become more educated in epileptic medications.
5. I wish I had taken it more seriously and realized it was more than a nuisance we hoped Josh would outgrow.
6. I wish I had been more adamant with the doctor that week. We had been through this before and Pediatric Neurologists are very rare so most of my communication was done via emails which were responded to promptly even when the office phone was busy.
7. I wish I had researched all help devices out there and outfitted our home, Joshua's bed room, and even Joshua with everything possible even if not fully tested yet.
Here's a website that can share more details on these devices and more.
http://www.dannydid.org/sudep/devices-technology/
8. I wish I had checked on him as soon as I woke up that morning as when he had the seizures they seemed to occur as he was waking up in the morning. That Saturday morning, I just wanted to let him sleep in as he was a growing boy.
9. I wish I had my son with me here and now.
All indicators and medical specialists I have spoken with share that when SUDEP appears there is not much we can do but I would like to have been given the chance to prove them wrong.
Several families have shared with me how your lives are impacted by epilepsy. Sadly, some of those stories are from those trying to live with life after SUDEP. It has been 16 months into our journey and it just felt like it was time that I shared our story and those things I wish someone had told me 5 1/2 years ago when Joshua was diagnosed with epilepsy. Please know this blog is my personal opinion only. There are many reputable resources on epilepsy available today for those of you facing epilepsy head on...and I suggest you keep educating yourselves. Here are three sites that I regularly turn to:
The National Epilepsy Foundation www.epilepsyfoundation.org which leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Our family initially planned to walk as 5 Newmans to raise money for research, no we walk in memory of one sweet and ornery boy to raise epilepsy awareness and research funds.
Danny Did Foundation www.dannydid.org which raises awareness of SUDEP, and raises money to provide seizure detection and prediction devices that may assist in preventing deaths caused by seizures. Danny Did Foundation is our partner in our upcoming Annual Joshua Newman 5K on November 24, 2012. Funds raised will provided seizure devices for those who are unable to buy them themselves.
SUDEP Awarewww.sudepaware.org is a not-for-profit organization, run by volunteers dedicated to raising awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP), with the ultimate goal of finding its cause(s) and prevention.
50,000 epileptics will die this year
50,000 people die from epilepsy every year in unlimited circumstances but of those, 3,000-5,000 will die of SUDEP. It may seem like a small number but try telling that to the family that finds their child unresponsive on a normal unassuming Saturday morning in suburban life. If there is a way to prevent it, why not try?
I would say this if you are an epileptic, or know someone who is an epileptic. Live life to the fullest, educate yourself, and take your meds. I know they can be a real drag with ugly side effects for some of you, but keep trying. We changed medicines and adjusted dosages multiple times to find what worked best for us.
Epilepsy has brought me to places I could never imagine, including advocating for those living with epilepsy and more research. This I do for my Joshie, my sweet and Ornery One!
Hugs,
Sherri
I found this post in searching on frontal lobe seizures and sudep. I think I suffer from the former after recording myself apparently having a seizure at night, unable to breath for around 50 seconds and ending up with a petechial rash around my neck, shoulders and face as a result. This is the 4th instance now which suggests I have a problem. I'm just trying to find out how to even begin to deal with it.
ReplyDeleteI'm very sorry to hear of your loss but please try not to ask "what if" and "if only" because whatever you would have changed you would still have the same thoughts about something else. There will always be something you could do differently and you would replace one set of regrets with another. You're a good person who did the best you were able with the knowledge you had.
Chris
Chris,
DeleteThank you so much for your kind words. It can be so challenging to go through all the what ifs, and I know it will be a lifelong challenge.
After reading your symptoms, I pray you find a caring Neurologist who is able to find a diagnosis and successful treatment for your seizures. I would ask that you get in to see the doctor as soon as possible. Please let me know what you find out.
Hugs!
Sherri
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ReplyDeletethoughts. Great website, stick ωith it!
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Words cannot describe how sorry I am for your loss. My son Larry died of Sudep at the age of 21 on May 19, 2013:
ReplyDeletehttp://the-american-catholic.com/2013/05/19/lawrence-charles-mcclarey-requiescat-in-pace/
Like you I have been trying to spread the word about Sudep:
http://the-american-catholic.com/2013/07/09/patsy-custis-larry-mcclarey-and-sudep/
I was completely ignorant of Sudep prior to my son's death. If I had known anything about it, I think I would have taken his mild seizures, which seemed to be largely under control from his seizure medication, much more seriously.
Donald, I am soooo very sorry for your loss! I hate the fact that so many of us learn about SUDEP AFTER we've lost our loved ones to it. Your words struck so close to home.
DeleteOne of the things that helps me heal is to try to educate others and help provide the bed monitors to give families some peace of mind. Keep spreading the word!!! Hugs!
I'm so sorry for your loss. I too lost my daughter at two. the doctors told me nothing about this or that she could of even died from her seizures. as much as I fought they never would put her on meds. I had finally had enough and made her an appt with a great pediatric neurologist after the Christmas holidays. my mom was watching her that night on December 30. I got a phone call that morning at six am that my daughter was dead. I just wish I had more information about this then as this was in 2002. I still spread awareness about this horrible thing. again I'm sorry for your loss. as I see I am not alone in this journey I'm going through
ReplyDeleteYour story breaks my heart. We had just switched Neuro's too. Our wonderful Neuro had left practice to help veterans, and the new Neuro was not as invested yet. We all need to keep sharing our story. One day it will make a difference!!!
Deletesome days are still really hard others I'm ok it's just I still wonder why didn't I know of any of this and to think I was researching seizures and how to help her and etc and nothing like this ever came up. I'm hoping our stories can help anther parent from having to endure this.
ReplyDeleteIt's so frustrating and heartbreaking living through such loss. Hugs!
DeleteAm Lucas by name,my son alway have seizure every two week in a month,which was affecting his life and he was not going to school properly any more,i have to do all i can to save him,i got the contact of a doctor,who helped me out by giving me the medication which my son took for a week,for a year now he has been doing fine please any body have such issue should contact the Doc on Alegbe3@gmail.com or +2349027116105,to get your self out of that embarrassing illness.
ReplyDeleteMy son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail dr.lawson52@gmail.com.
ReplyDelete