I Hate Epilepsy!!!!!

[tinasmom]

Today when I got home from work, I received an email from a friend of mine regarding her daughters tests today. I can't seem to stop crying after receiving this news. Here is some of her email:

The Doctors explained a lot to me. She had many spikes and waves on her EEG throughout. They also were able to capture some activity when she fell asleep. She had spike wave patterns for over an hour while asleep. In all stages of sleep.
She did such a great job. She had the full attention of 5 adults today, they doted on her...she smiled so much today. I will upload pics later.

Now the sad part, AS she was in this vault like room where she could not hear a thing, and these Doctors, 5 to be exact all began to give me many lessons as they watched her through the machines and monitors.
They captured several short seizures and could pin point where they were, this coupled with some other things that presented while there, they informed me that they were very deep in her brain .

(Prior to today) Her main Dr had said if they were deep in the brain she would not be a candidate for surgery, But maybe still she could get VNS.

The greatest thing I learned that saddened me the most was what the Dr said, " cases likes hers most often the seizures become worse and intractable; memory and psychological abnormalities appear more and more through out the years."
About 10 minutes after sharing this with me, she was getting all her leads washed off and said "You know Mom I may out grow this..." The younger Dr stood looked at me and then turned his back and began to have tears run down his cheek. The other Dr walked out of the room and then went to another area and came back with red eyes. While the other two kept saying warm kind things to her and I.

Please, please say prayers for this young girl and her family. Maybe God will send them a miracle.

This all seems so unfair!!!!!!

[Meetz1064]

I am sooooo very sorry........I wish there was something I could say or do to ease the pain.....

[tinasmom]

Just pray for this family. I know that prayers will help. Thank you for your kind words. I have found this place to be so warm, inviting, caring and loving.

[ziggidypoo]

No words can touch your pain - I can and will listen and pray - I cannot fathom what you are going through and will not be stupid and say I do - There's a LOT of people here who care about your situation. I have nothing to say for words won't do the job, all I know to say is "I CARE" and I mean it.

[Kansas Educator]

Prayers from your friend from Kansas that the doctors will be proven wrong.

[Nancy]

I will add this family in my prayers. We've seen so many joyous miracles.... let's pray for another one.

[Belinda5000]

It's a terrible thing to hear know matter what ur age epilepsy.
I'm sorry for the girl.

Belinda

[brain]

(((((( Much Prayers and Thoughts ))))) abides to the child
and family - this is terrible news!

All the more to loathe "E"!

[josieb]

I'll also include the family in my prayers. My heart aches for them.

[Cint]

My heart aches also. Life surely isn't fair! My thoughts and prayers to this this family and child.

Cindy

[Bernard]

There may be other options available to you. Ochlabs LENS system has worked miracles for people with serious brain issues. EEG neurofeedback might also offer opportunity to correct or halt progression of misfirings in the brain.

[speber]

...while 'YES' the odds are against 'growing out of it'.....

...that is not out of the realm of possibility.

There is always HOPE......she sounds like a fighter!

Show her options and keep plugging away!

Get her a piano!...get her some drums for when she needs to beat something up besides herself! Music can help IMHO and from my own experience. I started REALLY playing instruments about the time when the seizures were at their worst and they changed to purely nocturnal for me! Now, much of this can be attributed to puberty I'm sure...but I'm still having REALLY good luck directing my seizing with tunes.


I wish only the best for her in her trials.

Speber

[Elaine H]

My thoughts are with the girl and her family, lets hope for a miracle and things will improve for her, where there's life there is hope!!

God Bless
Elaine xx

[tinasmom]

Thank you everyone. I have been researching some alternatives and sending them to her. None of us have given up hope and won't.

Bernard - I will let her know the options you have suggested.

Sperber - I will let her know about the musical instruments.

[skillefer]

Dear Laura,
Your friend and her child are in my prayers. I hope that you've let them know that we are thinking about them.

[jgbmartin]

Will definitely add her and her family to my prayers.
I hate to hear about kids with E...it just seems so unfair

[tinasmom]

I just can't thank you all enough. I did email her to let her know that people here are praying for her.

[Trinity]

My Epilepsy was a lot worse when I was younger and there were so many things my family and others had resolved to thinking would not happen. My seizures were severe enough to effect my balance and coordination - I needed to go to physiotherapy to learn to walk again properly. I hope and pray everything will work out for your friend and her daughter and that the doctors will be proven wrong. Seems like they would appreciate being proven wrong in this instance.

[ashmstng]

My heart goes out to the child and the family. I will be praying for them also. I hope the best for them.

[renee97]

I just can't thank you all enough. I did email her to let her know that people here are praying for her.

I don't have words enough for your friend. I too will add my prayers for the family.
I am in Minneapolis MN and was not diagnosed until age 55 just 3 years ago. And I have not been employed since and denied disability every time I apply. Go figure. Wasn't it Ben Franklin who said "We must all hang together or we will all hang separately."
R97
(Oh, and I also heartily endorse the music idea.)