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View Full Version : We finally have some answers.



auntiemern
May 9th, 2018, 12:32 AM
It isn't great news, but could be a lot worse. We found out today what they believe are the cause for Gabes recent seizure activity. He has had 3 in the last 6 weeks. The do not believe they are cause from his TBI. They believe it is something called Benign Rolandic Epilepsy, with centrotemporal spikes. It most commonly spikes at the age he is currently, almost 9. They also believe that he will outgrow them by the time he is between 14-18. The cause is thought to be genetic, and since we know so little about his abusers family...we have no idea about any of that. The plan is to increase his seizure meds a little at a time, to get them completely under control. They may even change the one he is currently on. They are also most likely to occur upon his going to sleep, or waking up. All of those so far, that we are aware of, have happened after he has woken up in the morning. He has begun doing these severe leg twitching in his sleep, so he will also have to undergo an overnight EEG study to see if those are also small myclonic seizures.

So as bad as it sounds, I am basically happy with the news. I have faith that he is not going to have a lifetime of multiple daily seizures , and he will most likely outgrow them over time. We just need to get his meds regulated, and try to keep him seizure free.
Thank you to all of you who so diligently pray for my grandson and his family. It truly means the world to me.

Carlie Wolf
May 9th, 2018, 12:40 AM
Im glad that it is hopeful auntiemern. It's all so scary

JCY
May 9th, 2018, 12:48 AM
Thanks for the update.

Judy, USMC
May 9th, 2018, 12:51 AM
Been waiting and watching for the update. You'r right - it is good news that a medication regulation issue and that he will eventually outgrow the seizures. Nice to know they are monitoring him so closely and there is further investigation and testing to be done.

Strength to Gabe, his family and you Marilyn. Stressful time but promising results!

Simply Quilting
May 9th, 2018, 01:12 AM
Thank you for the update. Prayers for the sweet little boy.

GuitarGramma
May 9th, 2018, 02:06 AM
Marilyn, I'd missed your posts on Gabe's seizures. But I'll start praying now! He's such a sweet little boy.

Andrea F
May 9th, 2018, 03:37 AM
Marilyn, I am glad to hear that it is not as bad as it could have been. It sounds like the doctors will be able to deal with it and that's good news. Sending more positive thoughts and hugs.

Carol336
May 9th, 2018, 06:56 AM
I'm so glad, well I guess relieved is more like it, to hear this news about that sweet little guy. I've actually known kids that have outgrown epilepsy, so it makes gives me confidence that Gabe's gonna be ok. We'll keep those prayers coming for your little buddie Marilyn.

Star lover
May 9th, 2018, 07:19 AM
So thankful for you and your family for the diagnosis.....looks like an end in sight....eventually he'll out grow it....what a blessing!
Wonderful news. Love and hugs to you all....such a journey.

Jean Sewing Machine
May 9th, 2018, 07:32 AM
Continued prayers for Gabe and your family.

Bubby
May 9th, 2018, 07:41 AM
This is hopeful news. Continued prayers and hopes for a very bright future for Gabe.

Sandy Navas
May 9th, 2018, 09:06 AM
Got you all covered! Just knowing what's happening makes it a bit easier to deal with. Prayers will continue.

KPH
May 9th, 2018, 09:27 AM
Will continue to lift little Gabe and family in prayer. The prognosis sounds so hopeful.

Suzette
May 9th, 2018, 09:33 AM
Prayers continue for Gabe and you family.

Astatoo
May 9th, 2018, 10:03 AM
Glad to hear you finally have the answer. Will keep Gabe in my prayers.

grammaterry
May 9th, 2018, 10:39 AM
Sometimes just knowing is the best news. Try to explain to him whats happening and that if he focuses his brain might be able to find a solution. It has worked for me from childhood on

Debbie Watters
May 9th, 2018, 12:28 PM
Continued prayers ...

geegeequilts
May 9th, 2018, 02:15 PM
Will continue praying for Gabe & for Grandma.

Gina

Iris Girl
May 9th, 2018, 02:39 PM
My thoughts are always with you. Just knowing what it is is a step in the right direction. Will keep you both in my healing thoughts.

K. McEuen
May 9th, 2018, 03:28 PM
Every little bit of information helps. But I sort of feel like this poor kid has been through enough in his life that he deserves a break!

auntiemern
May 9th, 2018, 06:18 PM
I couldn't agree more. :(

jjkaiser
May 9th, 2018, 07:21 PM
He will be fine. My sister accidentally pushed me out of a tree house when I was 5 and it caused epileptic seizures that I grew out of by about age 21. I was medicated all through childhood (dilantin and phenobarbital both) and med adjustments constantly needed tweaking as dosage was based on body weight. I am convinced this is nothing to worry about as long as he has a good neurologist that he sees once or twice a year. It can be a little scary seeing someone have a seizure though. I also remember being incredibly fatigued after each seizure and all I wanted to do was sleep.

Heather
May 9th, 2018, 08:50 PM
Glad to hear it's something he will outgrow.

sherriequilts
May 10th, 2018, 12:31 AM
Will keep your grandson in my prayers

Ginny B
May 10th, 2018, 08:05 AM
It's good to at least have some answers. What a scary time you all have been going through. Continued prayers for Gabe and hope the doctors can get the medications to control the seizures. Also great to hear he will grow out of them.

Hulamoon
May 10th, 2018, 11:12 AM
Very good to hear this doesn't have to be a lifetime battle. My thoughts are with you guys.

SallyO'Sews
May 10th, 2018, 01:01 PM
Continuing to pray for your little man, his sweet mama, and you, my quilty friend!