Anyone Ever Deal With Epilepsy/ Seizures in Children?

[kingranch]

Cbd oil

My friend is a pharmacist here in austin and has some of the purest stuff available. It's def worth looking into.

Other options are surgical resection of the temporal lobe to cut the area where they originate ...sounds crazy but it works

[UncleBubba]

Anyone Ever Deal With Epilepsy/ Seizures in Children?

I'm sorry to see this and will be praying for your family. I have a really close friend, almost a brother, that starting having seizures around 18 years old. I stayed with him in the hospital over night multiple times while he was having a study done to find out where they started. It's now been 10+ years since he had the surgery to remove the area on the brain causing them. Up until a couple years ago he was taking two meds, one very expensive, to make sure he didn't have anymore. He is now on one med and hasn't had a seizure since the surgery. There is hope and I pray they find the cause.

[sailor]

Prayers sent for your beautiful little girl

Please, Lord......

[Hogmauler]

Our son suffered with epilepsy for 16 years. It culminated with him having three grand mal seizures. We went to hospital and got m r I. They finally saw something. We took him to the epilepsy center in the Med Center where they reduced his meds to a point of having a seizure, then mapped the location. We were at a point where his meds were maxed out and he was still having break through seizures. He doesn't breath when seizing so his brain was injured over and over again. Anyway, we made the decision to have brain surgery. They removed a two by two cube from his left temporal lobe. 2days later he went home. Hasn't had a seizure since. Fell free to contact me if you like. Signed: Been there, done that, got the T shirt. And yes, epilepsy is horrible, heartbreaking, and literally rattles your family to the core. Hold on to God, pray, and stay strong.

[Smithwr]

Poor thing, you can tell it wears her out physically. I dont have any experiance but I do offer prayers.

[Poppy]

Prayer sent

[Buckwheat]

Man brother. That brought tears to my eyes. My daughter had seizers about that age. Her mom walked in her bedroom one morning and she was slumped over on the bed. Bubbles coming out her mouth and blue lipped. She had checked on her about 15 min before. So no telling how Long she had actually been that way. Her mom scooped her up and put her in the car(she is a nurse) cause she wasn't waiting on the ambulance. She drove her to the hospital. We're she countinued to seize off and on for the next hr and a half. By the time I got the message and to the hospital she was sedated and not having them any more. They ran test on her that night and the next morning. She had another one that next morning while being tested. She was put on meds for next few years haveing only one more after that day. Now she is off the meds and hasn't had one since.

My heart breaks for your little angle. May God be with the doctor , your little girl, you and your wife. May he heal her body.
My prayers will continue for y'all.

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[BGlegal1]

We have been dealing with this for 17 years. My daughter was diagnosed with juvenile myoclonic epilepsy when she was 13. Her seizures look pretty much like the video. Can't say enough good things about the Bluebird Clinic, Dr. Bob Zeller & Dr. Carlos Rivera. I know up close and personal that there is no more helpless feeling in the world than holding your child as a seizure runs its course. The good news is that the overwhelming majority of people diagnosed with epilepsy achieve good seizure control on medication once the right med or combo of meds and dosage is found. Getting there can be trying, though. Not true for everybody, but my daughter will be on meds for the rest of her life. While she has had some challenges, she did graduate college and has been married for a little over a year. Although we live with the possibility every day, she hasn't had a seizure in almost 10 years. I know what y'all are going through. Will be praying for your family. If you feel the need to talk to somebody that's been there, PM me, I'll be happy to visit with you any time.

[mev002]

Also about the bills and worrying. I know how you feel brotha. We still owe and it don't bother me a bit . Just try and relax and you can only do what you can do. We didn't have insurance on her at the time and 4 grand an MRI. And 5000 neurologist visits adds up. We pay 50 bucks a month. At first they would hound on us and I would just tell them I'm paying all I can after a while they will quit calling and cash those 50$ checks without a problem.

I hear you man. What sucks is we are billed by 10 different companies and all want their money now of coarse. Insurance is a joke, they have paid for a lot, but I still owe almost a years salary worth... We've started paying a little here and there, but a single income for a family of 4 gets stretched thin quick.

Our son suffered with epilepsy for 16 years. It culminated with him having three grand mal seizures. We went to hospital and got m r I. They finally saw something. We took him to the epilepsy center in the Med Center where they reduced his meds to a point of having a seizure, then mapped the location. We were at a point where his meds were maxed out and he was still having break through seizures. He doesn't breath when seizing so his brain was injured over and over again. Anyway, we made the decision to have brain surgery. They removed a two by two cube from his left temporal lobe. 2days later he went home. Hasn't had a seizure since. Fell free to contact me if you like. Signed: Been there, done that, got the T shirt. And yes, epilepsy is horrible, heartbreaking, and literally rattles your family to the core. Hold on to God, pray, and stay strong.

Man, that is scary. I have heard of the surgical fix, but that scares the hell out of me to think about. Glad it worked out for your son. I hope we don't have to go down that road.

Man brother. That brought tears to my eyes. My daughter had seizers about that age. Her mom walked in her bedroom one morning and she was slumped over on the bed. Bubbles coming out her mouth and blue lipped. She had checked on her about 15 min before. So no telling how Long she had actually been that way. Her mom scooped her up and put her in the car(she is a nurse) cause she wasn't waiting on the ambulance. She drove her to the hospital. We're she countinued to seize off and on for the next hr and a half. By the time I got the message and to the hospital she was sedated and not having them any more. They ran test on her that night and the next morning. She had another one that next morning while being tested. She was put on meds for next few years haveing only one more after that day. Now she is off the meds and hasn't had one since.

My heart breaks for your little angle. May God be with the doctor , your little girl, you and your wife. May he heal her body.
My prayers will continue for y'all.

Sent from my XT1585 using Tapatalk

It is a frightening site to walk in and see your kid like that. Our daughter started turning blue the very first seizure she had. We had no idea what was happening. What was worse it too 18 minutes for an ambulance to arrive, even though we live about 2 miles from the hospital. I have been very fortunate to have been there for every single seizure she has had ( that we know of ) and been able to take care of her as soon as it starts and monitor her breathing. Glad your girl is over this mess now. I appreciate the prayers.

We have been dealing with this for 17 years. My daughter was diagnosed with juvenile myoclonic epilepsy when she was 13. Her seizures look pretty much like the video. Can't say enough good things about the Bluebird Clinic, Dr. Bob Zeller & Dr. Carlos Rivera. I know up close and personal that there is no more helpless feeling in the world than holding your child as a seizure runs its course. The good news is that the overwhelming majority of people diagnosed with epilepsy achieve good seizure control on medication once the right med or combo of meds and dosage is found. Getting there can be trying, though. Not true for everybody, but my daughter will be on meds for the rest of her life. While she has had some challenges, she did graduate college and has been married for a little over a year. Although we live with the possibility every day, she hasn't had a seizure in almost 10 years. I know what y'all are going through. Will be praying for your family. If you feel the need to talk to somebody that's been there, PM me, I'll be happy to visit with you any time.

Thanks bud. I will pray for yours as well. I hope she can continue to prosper without another more seizures.

[Lawhorn]

Hate reading threads like this. I will send up a prayer for your little girl. God bless you and yours. May God lay his healing hands on your little one


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[dcbrown]

Prayers going up for ya'll!

[Chase This!]

At TCH, you are seeing the best docs in the world. Has she had any genetic testing?

[mev002]

At TCH, you are seeing the best docs in the world. Has she had any genetic testing?

No genetic testing yet. But they do suspect it is genetic. Several people in my family have Epilepsy or seizures of some sort.

[sotx]

My daughter Kiley, will be 2 in September, has been dealing with epileptic seizures since this past December. She was officially diagnosed with epilepsy in February. She is now on a twice daily medication to help control them, which in the last month we have had to increase the dosage twice.



In the past 6 months she has had at least 20 seizures. Anywhere from 2 minutes long to almost 10 minutes long. Typically when she has them she gets into a cycle where she has multiple throughout the day.



In the Past 48 hours she has had 5 seizures. Fortunately we have been able to avoid going to the hospital, she is home today, with no seizures in almost 24 hours. Been sleeping all day though.



So far she has had to spend 6 nights in the hospital, 2 ambulance rides, and 1 helicopter ride.



I've never been more scared of anything than the first time I saw her have a seizure and being told she has to be put on a breathing machine and life-flighted to downtown Houston. I've been really rather quiet about the whole situation, because most people I try not to worry other folks about my "our family" issues. But it is definitely starting to takes its toll... Between the complete unknown of how long or bad this condition can be for her, the HUGE medical bills that insurance won't cover, taking days off from work to be with her at the hospital, you name it... it's pretty dang stressful. (sorry, just a little bit of venting)



Her doctors at Texas Children's take good care of her when she is there, but unfortunately no one can give us much information on what causes these seizures. Just when we think we know what might trigger them, like being ill, she has one out of the blue while perfectly healthy. Which for that matter, other than these seizures she is a really healthy baby, and for that I am thankful. Just wish we could get this mess under control. Anyone dealt with this before? I know every situation is different, but good information can anyone share?



For those who have met my daughter, knows she is a handful. she has tons of energy and usually really playful and full of smiles. It sucks to see her hurt.











I was able to record a video of her during one of her seizures yesterday, it's hard to watch, but it's what she has to deal with.

http://youtu.be/e_kPQzQyV0Q

May 30, 2017 - YouTube



Anyways for those of you that have some knowledge on this situation any info or reassurance you can give me I would appreciate. If nothing a simple prayer would be appreciated.

My youngest who is now 18 years old has Drivet Syndrome Look it up. Also look at the or talk with your doctor about Ketogenic Diet. The diet massively decreased her seizures from 20 or 50 seizures a day to 1 and sometimes none. It worked for about 5 years, At 18 years old she has one a month roughly. Praying for you guys.

[Chase This!]

No genetic testing yet. But they do suspect it is genetic. Several people in my family have Epilepsy or seizures of some sort.

It could help with a more defenitive diagnosis. Genetic tests rarely lead to a therapy, but it happens. Your best bet is to have a panel of seizure genes run. This is likely to be covered by insurance. Exome sequencing would be the best test, but expensive and not covered by insurance. I can be of assistance with genetics when the time comes. Just shoot me a PM and I'll do all I can to help.

Brandon