Reply
Go Back   TexasBowhunter.com Community Discussion Forums > Topics > Around the Campfire
 
Thread Tools Display Modes
Old 05-31-2017, 04:11 PM   #1
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default Anyone Ever Deal With Epilepsy/ Seizures in Children?

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






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.

Last edited by mev002; 05-31-2017 at 04:28 PM.
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:18 PM   #2
bowhuntertex
Pope & Young
 
bowhuntertex's Avatar
 
Join Date: Oct 2006
Location: Wimberley
Hunt In: Where ever the wind takes me......
Default

I went to high school with a kid who had these types of seizures. They seem to lessen the older he got. I will pray for your beautiful baby girl that something can be done to help her.
bowhuntertex is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:24 PM   #3
El Forajido
Ten Point
 
El Forajido's Avatar
 
Join Date: Jan 2015
Location: Cypress,TX
Hunt In: Any Tree stand in Texas ✭
Default

We're gonna be praying for your precious daughter Kiley. And we ask our Good Lord to please put his healing Hands on her
El Forajido is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:27 PM   #4
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

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






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.[/QUOTE]






Sent from my iPhone using Tapatalk
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:31 PM   #5
cosmiccowboy
Pope & Young
 
cosmiccowboy's Avatar
 
Join Date: Jan 2007
Location: San Antonio hunt Medina/Atascosa
Default

You should read this article

http://www.nationalreview.com/articl...R5PM%20Actives
cosmiccowboy is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:36 PM   #6
txhunter90
Eight Point
 
txhunter90's Avatar
 
Join Date: Aug 2016
Default

I remember my sister having them alot when we were younger. Almost biting her tounge off multiple times, mom would catch alot of them and prevent the tongue biting. She had them alot and they tried alot of different medicine. As she got older they got better and I am assuming with the medicine as well. She eventually "grew' out of it as the doctors said. It will get better, seemed like it took forever though.
txhunter90 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 04:37 PM   #7
Honker
Eight Point
 
Honker's Avatar
 
Join Date: Dec 2014
Location: Katy, TX
Hunt In: where the wild things are
Default

I feel your pain brother. One of our children has seizure disorder, but has been seizure free for several years while being under the care of a wonderful pediatric neurologist.

Please call and get an appointment for Dr. Carlos Rivera with the Blue Bird Circle Clinic Of Child Neurology in the Houston Med Center. The office number is (832) 822-5046.

It can takes month to get an appointment, but Dr. Rivera and his staff are the most compassionate medical professionals we've encountered. Ask to speak to his Admin Asst and then explain your circumstances.

Prayers to you and your family.
Honker is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:08 PM   #8
MadHatter
Ten Point
 
MadHatter's Avatar
 
Join Date: Feb 2014
Default

I would look at CBD oils. They are doing some amazing things with them in Colorado, especially with children. This is fact, not pseudo science.
MadHatter is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:25 PM   #9
jlinville
Ten Point
 
jlinville's Avatar
 
Join Date: Sep 2012
Location: Tyler
Hunt In: Cherokee Co.
Default

PM sent!
jlinville is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:33 PM   #10
quarterback
Pope & Young
 
quarterback's Avatar
 
Join Date: Oct 2007
Location: Sunnyvale
Hunt In: San Saba
Default

That was hard to watch. She is so beautiful, so innocent. It is such a shame to have to see this wonderful child have to deal with seizures.

Two of my brothers have had to deal with seizures and rely on medicine to control them. While I cannot offer any medical remedies I can tell you that they seem to diminish as the person grows older. May be a combination of the right medicines and the body's ability to somehow correct itself...I don't know.

I offer prayers and encouragement to you and your wife. This is a controllable situation.
quarterback is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:44 PM   #11
J. Colwell
Ten Point
 
J. Colwell's Avatar
 
Join Date: Jan 2011
Location: NE Texas
Hunt In: Red River, Lamar, Delta and The H
Default

I'm very sorry as I did read your post and looked at the pictures but chose not watch the video. She is a beautiful little precious girl and I pray for her, you and your wife and the doctors who are treating her.


Sent from my iPhone using Tapatalk
J. Colwell is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:46 PM   #12
Lightning48
Six Point
 
Lightning48's Avatar
 
Join Date: Mar 2016
Location: Ft. Worth,Texas
Hunt In: Jones County
Default

Quote:
Originally Posted by MadHatter View Post
I would look at CBD oils. They are doing some amazing things with them in Colorado, especially with children. This is fact, not pseudo science.
THIS^^^^^^^^^

Also research Dr. Sanjay Gupta.
Lightning48 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 05:47 PM   #13
topshot
Ten Point
 
topshot's Avatar
 
Join Date: Sep 2014
Location: West Fort Worth
Hunt In: Public land
Default

first of all, she is beautiful. i have a 3 yo daughter and cannot imagine the sadness and pain you must feel watching her go through that trauma. i will pray for you all and hope for full recovery on her part.
topshot is offline   Reply With Quote Back To The Top
Old 05-31-2017, 06:34 PM   #14
Killer
Ten Point
 
Killer's Avatar
 
Join Date: Sep 2013
Location: Powderly, TX
Hunt In: God's green earth
Default

What a beautiful child!

Dear Lord please help this little girl, lay your healing hand on her!
Killer is online now   Reply With Quote Back To The Top
Old 05-31-2017, 06:42 PM   #15
db@100
Eight Point
 
db@100's Avatar
 
Join Date: Sep 2009
Default

I know your pain very well brother! When my son was about the same age, he had them. We went through the Life Flight trips and everything else several times The meds were finally able to control his. We also watched what he ate and didn't let him get over heated. He was unable to have anything with "Red Dye 40" That stuff is in dang near anything that is red! He spend 5 days in TCH in a coma, so I really do know your pain. His were all 20 years ago. Now his son is going through the same thing. All I can tell you is very closely watch her body temp and if she even starts to spike a fever, cool her down with damp a cloth or something. Pay close attention to what she eats. They may be brought on by diet, video games, flashing lights, any number of things can make their brain short circuit.
I'll be praying for you and your angel.
db@100 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 06:56 PM   #16
Artos
Pope & Young
 
Artos's Avatar
 
Join Date: Nov 2007
Location: Deep South TX
Hunt In: Deep South TX
Default

We have been dealing with it for 16 years...has she actually been diagnosed with epilepsy??

That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.

Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.

NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.

All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.


If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.

best of luck & God bless...stay positive & have faith.

Paul
<><
Artos is offline   Reply With Quote Back To The Top
Old 05-31-2017, 07:11 PM   #17
mjhaverkamp
Pope & Young
 
Join Date: Jun 2008
Location: Southlake, Texas
Hunt In: Cooke, Wilbarger, Foard Counties
Default

I could not watch the video, my son had the same deal when he was young, he is 21 now and i don't think he has had a seizure in maybe 12 years, he is autistic but not too bad, my prayers are with you, your daughter is precious.
mjhaverkamp is offline   Reply With Quote Back To The Top
Old 05-31-2017, 07:16 PM   #18
krausejmk
Ten Point
 
krausejmk's Avatar
 
Join Date: Oct 2009
Location: Cypress
Hunt In: Victoria, Tx
Default

Prayers sent for your beautiful little girl
krausejmk is offline   Reply With Quote Back To The Top
Old 05-31-2017, 07:21 PM   #19
Big C
Six Point
 
Big C's Avatar
 
Join Date: Oct 2014
Location: Robert Lee
Hunt In: Nolan, Coke, Fisher Counties
Default

Praying for you and that precious little girl. My nephew has epilepsy been on meds for a couple years now and he was finally able to get off the meds.
Big C is online now   Reply With Quote Back To The Top
Old 05-31-2017, 07:59 PM   #20
RascalArms
Pope & Young
 
RascalArms's Avatar
 
Join Date: Mar 2013
Location: Forney, TX
Hunt In: Schleicher County
Default

Prayers for little Kiley and the entire family. God Bless our babies....she is indeed precious sir.
RascalArms is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:07 PM   #21
Sticks&Strings
Pope & Young
 
Sticks&Strings's Avatar
 
Join Date: Oct 2006
Location: Magnolia, TX/ Kinney& sometimes Leon
Default

That poor baby. Prayers sent. Ill ask my sister who she used for her son. He never had gran-mal seizures but he has seizures and took medication. But last year at the age of 9, he finally got off all meds. It was a long road and may not be gone forever, but for now he is seizure free. Hopefully yall can cure your sweet little girl's.

Sent from my SAMSUNG-SM-N920A using Tapatalk
Sticks&Strings is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:20 PM   #22
pondboss
Eight Point
 
pondboss's Avatar
 
Join Date: Oct 2007
Location: Belton, Texas
Hunt In: Concho County & Pongola Region, KwaZulu-Natal S.A.
Default

What beautiful little girl. Our prayers go up for her and you family.
pondboss is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:26 PM   #23
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

Quote:
Originally Posted by Honker View Post
I feel your pain brother. One of our children has seizure disorder, but has been seizure free for several years while being under the care of a wonderful pediatric neurologist.



Please call and get an appointment for Dr. Carlos Rivera with the Blue Bird Circle Clinic Of Child Neurology in the Houston Med Center. The office number is (832) 822-5046.



It can takes month to get an appointment, but Dr. Rivera and his staff are the most compassionate medical professionals we've encountered. Ask to speak to his Admin Asst and then explain your circumstances.



Prayers to you and your family.


Thanks for the info. Our doctors are affiliated with the bluebird circle of clinics as well. We were going downtown, but moved to the woodlands location because it was closer. Matter of fact, I just checked her doctors number and it is the same clinic. We are seeing Dr. king at the moment though.


Sent from my iPhone using Tapatalk
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:27 PM   #24
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

Quote:
Originally Posted by db@100 View Post
I know your pain very well brother! When my son was about the same age, he had them. We went through the Life Flight trips and everything else several times The meds were finally able to control his. We also watched what he ate and didn't let him get over heated. He was unable to have anything with "Red Dye 40" That stuff is in dang near anything that is red! He spend 5 days in TCH in a coma, so I really do know your pain. His were all 20 years ago. Now his son is going through the same thing. All I can tell you is very closely watch her body temp and if she even starts to spike a fever, cool her down with damp a cloth or something. Pay close attention to what she eats. They may be brought on by diet, video games, flashing lights, any number of things can make their brain short circuit.

I'll be praying for you and your angel.


Sounds like you know exactly what I'm dealing with. Thank goodness he go over it. I hope and pray both my daughter and your grandson get over it as well. Thanks for the info.


Sent from my iPhone using Tapatalk
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:31 PM   #25
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

Quote:
Originally Posted by Artos View Post
We have been dealing with it for 16 years...has she actually been diagnosed with epilepsy??



That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.



Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.



NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.



All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.





If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.



best of luck & God bless...stay positive & have faith.



Paul

<><


Yea Artos, she was officially diagnosed with epilepsy back in February.

Sounds like your family has had a very rough ride as well. Hate to hear it, but glad your daughter is still here with you and doing much better.

We are definitely open to anything at this point. We don't know enough about the disease to rule anything out just yet. All we can do is have faith our doctors start her in the right direction for now.

I'll send you a PM. Like I said, any info we can use we are open to.

Thanks man.


Sent from my iPhone using Tapatalk
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:34 PM   #26
jruss
Ten Point
 
jruss's Avatar
 
Join Date: Mar 2013
Location: nortex
Hunt In: sook/nortex
Default

Yes Chloe started getting them around two. Had them sometimes 2 0r 3 times a day tell she was 4. And then they just stopped. Praise the Lord! Countless trips to children's med. Up all night crying oh my gosh it was the most awful thing to watch. Truly heart felt prayers to you and your family. She is 11 now and doing really well. Pm me if you need to talk.
jruss is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:35 PM   #27
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

I appreciate everyone's prayers and well wishes.

I really appreciate the PMs and other stories you folks have about your family's situations. It does make me feel a little better knowing she has a really good chance of beating this thing.

Here she is a few minutes ago. She is starting to feel a little more like herself now.




Sent from my iPhone using Tapatalk
mev002 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:42 PM   #28
gatt40
Ten Point
 
Join Date: May 2010
Location: Corpus Christi, Texas
Hunt In: San Patricio, Mountain Home & wherever
Default

Prayers to you all. Cannot imagine your pain. Don't know much about these things but have known people that have dealt with this and also know some that grew out of them. Such a beautiful child. It breaks my heart. I'm sure this is extremely difficult for you, but be strong for her. God bless all of you and I pray the doctors can find the right medications to control her condition.
gatt40 is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:43 PM   #29
jruss
Ten Point
 
jruss's Avatar
 
Join Date: Mar 2013
Location: nortex
Hunt In: sook/nortex
Default

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.
jruss is offline   Reply With Quote Back To The Top
Old 05-31-2017, 08:57 PM   #30
jruss
Ten Point
 
jruss's Avatar
 
Join Date: Mar 2013
Location: nortex
Hunt In: sook/nortex
Default

Showed my wife your post she is praying also. And wanted me to tell you that the video reminded her so much of Chloe's episode's. Trileptol is what helped her out.run it by your doc see if it may help your baby.
jruss is offline   Reply With Quote Back To The Top
Old 05-31-2017, 09:41 PM   #31
kingranch
Ten Point
 
kingranch's Avatar
 
Join Date: Dec 2010
Location: austin
Default

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
kingranch is offline   Reply With Quote Back To The Top
Old 05-31-2017, 09:55 PM   #32
UncleBubba
Pope & Young
 
UncleBubba's Avatar
 
Join Date: Aug 2012
Location: NE Texas
Hunt In: Dickens, Hunt, and Red River Co.
Default 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.

Last edited by UncleBubba; 05-31-2017 at 09:57 PM.
UncleBubba is offline   Reply With Quote Back To The Top
Old 05-31-2017, 09:56 PM   #33
sailor
Pope & Young
 
sailor's Avatar
 
Join Date: Jun 2008
Location: Texas
Hunt In: Texas
Default

Quote:
Originally Posted by krausejmk View Post
Prayers sent for your beautiful little girl

Please, Lord......
sailor is offline   Reply With Quote Back To The Top
Old 06-01-2017, 06:05 AM   #34
Hogmauler
Ten Point
 
Join Date: Dec 2009
Location: College Station
Hunt In: Texas
Default

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.
Hogmauler is offline   Reply With Quote Back To The Top
Old 06-01-2017, 06:25 AM   #35
Smithwr
Ten Point
 
Smithwr's Avatar
 
Join Date: Feb 2014
Location: Midlothian TX
Hunt In: Vernon TX
Default

Poor thing, you can tell it wears her out physically. I dont have any experiance but I do offer prayers.
Smithwr is offline   Reply With Quote Back To The Top
Old 06-01-2017, 06:40 AM   #36
Poppy
Ten Point
 
Poppy's Avatar
 
Join Date: Feb 2007
Location: Fort Worth,TX
Hunt In: Brown,Clay&Eastland Co.
Default

Prayer sent
Poppy is offline   Reply With Quote Back To The Top
Old 06-01-2017, 07:08 AM   #37
Buckwheat
Pope & Young
 
Buckwheat's Avatar
 
Join Date: Oct 2010
Location: Clifton,Tx
Hunt In: Bosque County
Default

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
Buckwheat is offline   Reply With Quote Back To The Top
Old 06-01-2017, 07:38 AM   #38
BGlegal1
Four Point
 
Join Date: Mar 2009
Location: Spring, Texas
Hunt In: Liberty County, Polk County
Default

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.
BGlegal1 is offline   Reply With Quote Back To The Top
Old 06-01-2017, 08:48 AM   #39
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

Quote:
Originally Posted by jruss View Post
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.

Quote:
Originally Posted by Hogmauler View Post
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.

Quote:
Originally Posted by Buckwheat View Post
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.

Quote:
Originally Posted by BGlegal1 View Post
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.
mev002 is offline   Reply With Quote Back To The Top
Old 06-01-2017, 08:55 AM   #40
Lawhorn
Ten Point
 
Lawhorn's Avatar
 
Join Date: Oct 2011
Location: S.Texas
Hunt In: S.Texas
Default

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


Sent from my iPhone using Tapatalk
Lawhorn is offline   Reply With Quote Back To The Top
Old 06-01-2017, 09:03 AM   #41
dcbrown
Pope & Young
 
dcbrown's Avatar
 
Join Date: Oct 2006
Location: Arlington, TX
Default

Prayers going up for ya'll!
dcbrown is online now   Reply With Quote Back To The Top
Old 06-01-2017, 09:36 AM   #42
Chase This!
Pope & Young
 
Chase This!'s Avatar
 
Join Date: Oct 2010
Location: Off the shelf
Hunt In: Where the big deer roam
Default

At TCH, you are seeing the best docs in the world. Has she had any genetic testing?
Chase This! is offline   Reply With Quote Back To The Top
Old 06-01-2017, 09:40 AM   #43
mev002
Ten Point
 
mev002's Avatar
 
Join Date: Jan 2010
Location: Kingwood
Hunt In: TX
Default

Quote:
Originally Posted by Chase This! View Post
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.
mev002 is offline   Reply With Quote Back To The Top
Old 06-01-2017, 09:44 AM   #44
sotx
Ten Point
 
sotx's Avatar
 
Join Date: Oct 2006
Location: San Antonio, TX
Hunt In: McMullen County
Default

Quote:
Originally Posted by mev002 View Post
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.
sotx is offline   Reply With Quote Back To The Top
Old 06-01-2017, 09:48 AM   #45
Chase This!
Pope & Young
 
Chase This!'s Avatar
 
Join Date: Oct 2010
Location: Off the shelf
Hunt In: Where the big deer roam
Default

Quote:
Originally Posted by mev002 View Post
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
Chase This! is offline   Reply With Quote Back To The Top
Old 06-01-2017, 09:56 AM   #46
Acostades
Ten Point
 
Acostades's Avatar
 
Join Date: Jan 2014
Location: Plano
Hunt In: junction tx
Default

heartbreaking to read. my heart and prayers go out to her and your family. will be praying
Acostades is offline   Reply With Quote Back To The Top
Old 06-01-2017, 10:50 PM   #47
CSIceman
Eight Point
 
CSIceman's Avatar
 
Join Date: Apr 2014
Location: Parker County
Hunt In: The Farm & Tha C
Default

I cannot help as I've never had to experience such episodes with my children. As a father of a 9 year old and a 3.5 year old (both daughters), all I can do is pray for your sweet angel. This hurts my heart for you guys. She's so beautiful; I cannot imagine. Prayers for comfort and answers, my brother.


Sent from my iPhone using Tapatalk
CSIceman is offline   Reply With Quote Back To The Top
Old 06-01-2017, 11:45 PM   #48
TXgringo83
Six Point
 
Join Date: Nov 2014
Location: Bridge City, TX
Hunt In: Trout Creek, TX
Default

First of all she is an absolute doll. I have no medical advice but I offer up prayer for a remedy and cure. Hang in there brother.
TXgringo83 is offline   Reply With Quote Back To The Top
Old 06-02-2017, 12:07 AM   #49
Sleepy
Pope & Young
 
Sleepy's Avatar
 
Join Date: Oct 2010
Location: Tyler, TX
Hunt In: Camp County, Rusk County, Smith County, Kansas
Default

That might have been one of the hardest things I've ever watched and I couldn't watch it all. I have a 2yr old girl myself and I cannot imagine the thoughts and emotions going through your mind and body when your baby girl is going through that mess. Breaks my heart for her and your family. God is good all the time. Prayers for you and yours.
Sleepy is offline   Reply With Quote Back To The Top
Old 06-02-2017, 12:55 AM   #50
Shinesintx
Ten Point
 
Shinesintx's Avatar
 
Join Date: Aug 2013
Location: North of Dallas
Hunt In: South Franklin County
Default

I didn't watch your video. I don't wanna watch your video. I won't because I don't want to relive that New Year's Day morning over 3 and a half years ago. It was a living hell. I thought my son was dying. It's the hardest I've ever payed in my life. During that prayer, my 3 year old son was turning blue. He felt like a rock. I'm being literal here, he felt as though he had turned into a solid object that was not of flesh. The only thing I remember about my prayer was the begging. Please Lord please, over and over. I've never begged so hard in my.

It's funny, when he came out of it, I wept. I wept harder than I could have even imagined. Ya just don't know until you've been there. My prayer then became thank you over and over.

Never been that scared before, not sure I will EVER be that afraid again. It was brutal. I know exactly how you felt. Exactly.

We are fortunate, he was on his meds for 2 years and then he just grew out of it. His brain developed and then it just went away. I don't know why, but I am SO thankful.

A few days after his grand mal, he was put in the hospital for a brain ECG? I forget what it's called, but they hook electrodes up to his skull to see where it's occurring. We knew he had epilepsy, the doc knew it, everyone knew it. But before he could get on the meds, western medicine says it has to happen.

I had to lay on top of him in order for the tech to attach the electrodes. My son screamed over and over, "stop grabbing on me." It broke my heart. I thought he was gonna hate me for the rest of his life. He forgot about it, but I hated having to restrain him.

I pretty much put the entire story on theTexas Tech website that I frequent. I needed to tell the story and relate to others. I get what you're doing, I understand completely.

If my sons seizures got worse, my wife and I were willing to try the CBD route. The drug they put my son on was a "anti-psychotic" drug? We think it may have affected his personality a little bit, but we will never know. Yes, CBD is a route we would have tried.

I'll pray for your daughter, it hurt me deeply to read your story. If there's any silver lining, you will appreciate your kids more. Personally, I think the whole ordeal made me a better father and appreciate the Father more. May God bless your child.
Shinesintx is offline   Reply With Quote Back To The Top
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -5. The time now is 06:05 PM.


Powered by vBulletin® Version 3.8.11
Copyright ©2000 - 2018, vBulletin Solutions Inc.
Copyright 1999-2012, TexasBowhunter.com