Wednesday, October 14, 2009

Yet another EEG...

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

13 comments:

JSmith5780 said...

Good luck today. I really hope things go smoothly!!

MJStump said...

Elaine,

Praying that the day goes well and it is not too hectic with Sophie being hooked up.

I can imagine how scary this must be...it's like it is the tell all EEG. You guys have been through so much, so I'm sure the results will be weighing heavily. Just know all you can do is pray and keep moving forward.

Love and prayers,
Jody

Anonymous said...

I pray that the EEG shows nothing abnormal and just proves the reason Sophie has been doing so well. I hope these next 24 hours go as smoothly as possible! Wish I could be there! Give Sophie a kiss from us! Love, Erica

Anita said...

I hope all goes well.Dr. Chugani told us that the EEG will show focal slowing in the area of resection since there is no brain tissue there anymore.Aside from that I hope you get a clean EEG.I''ll pray for it.

We postponed Kanak's EEG after much thought.We did not want to dealwith it right now.And it was not even an overnight deal.I can understand how nervous u must be right now.

Anita

Jonathan said...

I loathe EEGs. I can't even imagine what your heart is feeling about this one. It's almost like what you can't see won't hurt you...ugh. But then...we need to have as much data as possible in order to advocate and protect our children.

Side note: they are having issues getting Trevy's dilantin levels up too. But Chugani is switching us to Trileptol and Topomax post hospital stay.

Anyway...

(((((((hugs hon)))))))))) It won't be easy...but you'll survive. Cause that's what we do! xoxo

...danielle

Jackson's Blog said...

We have had a time keeping the Depakote at a therapeutic level. You hate to go up if you don't have to, so I think an EEG will be good. Did they not think a clinical EEG would be sufficient enough? I'm sorry you have to be there 24 hours...but maybe you'll be released early. I was so nervous with our 1st EEG post surgery. I have faith that she will have a good reading. Sophie is doing so well! I'll be thinking of you all today and praying for great results!

Holli said...

This has got to be a tough one. First one post surgery and 24 hrs...yuck. Not to mention the worries of how Sophie's going to handle it. I get nervous over any EEG, so I can only imagine your thoughts.

I'm hoping it goes well and that it reveals only normal activity. Oh, and that Sophie is a trooper for you!

(((hugs)))

Holli

Madhuri said...

Hi,
Hoping with all my heart that the fever goes away. And the EEG can't be easy either...been there so many times!
We just got back from Detroit after seeing Dr.Chugani, having gone through the 24 hr EEG and a PET..he has said that our daughter is a candidate for surgery and we are now trying the get the ball rolling in that direction.
I am sure I don't have to tell you just how scared I am though this is infact a ray of hope for her to have normal development.
I was reading about behavioural issues you have been having with Sophie...poor pumpkin! Is this something thats new since the surgery? I am concerned because Reva is otherwise such a happy child and other than normal 'terrible two' tantrums, not difficult at all. I don't want the surgery to cause personality changes - although Dr.Chugani assured us it won't. Reva did have a tough time with medicine changes - starting ACTH, weaning Vigabatrin - and was very irritable and difficult then...but that faded away as her body got used to the medication (or lack of it).
I met Trevy's mom in Detroit and it was such a moving experience to meet another IS mom - a first for me actually.
My heart goes out to you and Sophie.I want to believe that with the surgery we will have put the worst behind us and have only upwards to go from there. Good luck with the EEG. Fingers crossed and hoping for the best.

Anonymous said...

Hope you get some company and the time flies by. Hugs and kisses to Sophie.
Love,
Barb

Lisa said...

Thinking of you all! I can understand the fear...truly. Big prayers that all goes well and you get great news.

Anonymous said...

Thinking of you and understand your stress. EEG's are no fun and leaving your babies is hard. Sophie will never have a "clean" EEG after having surgery....Trevor had a little bit of spiking, but we didn't see seizures until now, 10 years later. The medication game is one I loathe, as we're in it now...up, down, blah, blah, blah and it takes so long. But enjoy the good moments like your adorable visit to the pumpkin patch.

BTW, as far as loud noises go, Trevor, plus others we know had really hard times dealing with them. We called it super sonic hearing...sensitive to all noises. Going to the movies was out for a long time....fireworks, etc. Even now he has a hard time, but we know to block his ears or he does it himself....cause he loves sporting events and they are often very loud.

Anyway, I saw you had mentioned it on her bday post and didn't want to ruin all the nice wishes with my hearing issue advice:)

Hugs,
Sheila

Colby said...

Just regular EEGs are SO stressful...Colby has never even had to have an overnighter! I know it must be SO hard!

I will be looking for an update with your results...I pray that you will have your first "normal" EEG!

(BTW, Colby has RARELY shown ANY seizures on his EEGs!!! These darn kids!!!)

Cyndi

Anonymous said...

how did the EEG go?