Seizure free!!!!!

[Paorrin]

:wave:
I was sitting here tonight reading other post when i went over our log and It has been 7 weeks since we started felbatol and we are now 6weeks seizure free!!!!!!!!! I cant believe i just said that. It has been so long and such a hard road. The week we started the felbatol she was having clusters of 10 drop seizures every 30min for three days that we just couldnt stop. It was really scary. We desided to take the risk of felbatol (aplastic anemia or liver failure) to try and stop the seizures before we would go for a corpus callosotomy. God was really on our side. It really feels like a miracle!


Father of Abigail 11 yo subcortical band heteratropia, lennox gastaut syndrome on felbatol, depakote, topamax, klonipin, and vns
6 WEEK SEIZURE FREE AND COUNTING!!!!!!!

 

[hootie]

:banana:

 

[Nakamova]

That's great news! Thanks so much for sharing.

 

[RobinN]

A milestone to be thankful for.

 

[Paorrin]

Thanx for the support. It feels great! I went out and bought ice cream for everyone and we had an impromptu party. My wife, the kids and abigails aid were all surprised when I told them why we were having a party. My wife just cried. It was really nice.

 

[Dot]

I can imagine how happy you are, the good lord will continue to be on your side.

 

[Paorrin]

Thank you Dot. But unfortunatly all good things come to an end . For the last four days Abigail hasnt eaten anything. We went for blood work to make sure everything was of and her liver function test are elevated. Her neuro admitted us to the PICU to get iv fluids and STOP the felbatol as she thinks she might be going into liver failure!! Which is a side affect of felbatol. So we have now stopped the one med that was really helping her.

I look to god for help!!!!
My wife (7 months preg.) is a mess nonstop crying. I sent her home to watch the other kids. So im here lying on a recliner in the PICU next to the cutest kid in the world. I try to get my strength from her. She is so lethargic but still fights the constent blood sticks but when done looks at the nurse or doctor smiles and says im sorry or thank you. God has realy given me a angel on earth......
Im sorry if im rambling but it is hard for a guy to express his feelings...i really scared to see what is to come as the meds wear off.

I will keep you posted
Robert

 

[RobinN]

You are doing an AWESOME job Robert. Hang in there. Keep turning over stones looking for answers. Knowledge is power.
Sounds like your wife needs a professional to take to. She has a lot on her shoulders at the moment. You might go occasionally too. It helped me over the rough spots too. My daughter 6 yrs later still goes weekly to therapy. The Dr has been our angel.

Give your little one a hug. Perhaps neurofeedback might be an option at some point.

 

[Dot]

Paorrin,
Believe me I understand how you feel because my eleven year old son out of nowhere developed epilepsy so the last one year has been difficult but start to take one day at a time and hang on to god with even the smallest strength, I will definitely remember Abigail in my prayers tonight, it is well! And remember you have a pregnant wife so you have to be strong for the two of you.

 

[Bernard]

Truly awesome news. I love to hear about success stories.

 

[Paorrin]

We we made it home!!! We started the felbatol at a much lower dose. Lowered her depakote becaus of the low platelet count and Stopped the topamax. She is eating much better now and her liver fuction improved alot. We did have afew seizures on the 72hr!!! Video EEG. Our doctor is really awsome she spent an hour with us every day to go over the eeg for the last day, labs, med changes, and address everyone of our conserns. We even got to show off to the med students what seizure are, how to recognize them on eeg and clinicly. Thank you all for your support amd prayers!

Robert

 

[Nakamova]

Our doctor is really awsome

...makes all the difference, that does. Glad things are looking up.

 

[Dot]

Glad to hear that you are back home,and remember when you wake up every morning thank god for the new day commit that day into his hands and treat each day as a gift from god I believe god loves us that is why we are going through this I guess it is his own way of keepig us close to him....(constantly praying,praising his name) he is happy when we call on him day and night believe me god is all you have since we have no excuse for what we are facing we have to let god lead the way.....take good care of yourself.

 

[jyearta]

Paorrin, it sounds like you little Abigail is lucky to have you and your family. Just keep looking UP-Jesus is there for you.

 

[donnajane]

Glad your home. Your Nureo seems fantastic.
Take Care.