Wednesday, September 24, 2008

It Worked :>

I did another EEG last night after Britt went to bed and it looked much better. We went to see Fran Filloux today at 3:30 and told him I had not seen the left sided jerking in over a week and felt like the medication has helped. When he compared the EEGs he agreed and was very pleased it had worked so quickly. Protocol for this medication is to stay on the effective dose for 2 weeks after the seizures stop then start to slowly taper off the medicine. If the seizures come back we go up to the last dose that was effective and stay there for two weeks then start to ween off again. He said that there is a 50% chance of this happening. So since I estimated that I hadn't seen a seizure for over a week, he wants Coop to stay on the full dose for 5 more days before decreasing it. It will take almost a month before we are completely done with the shots. His bloodwork was normal and his blood pressure has stayed within the acceptable range for this type of medicine. Dr. Filloux said that Coop will slowly grow into his extra weight and chubby cheeks, he won't just loose it after stopping the medicine. But, if it worked that easily and chubbiness is the only side effect then I can't complain. I commented to the doctor that this was the first thing with Charlie that has been straight forward and he said "that's what I'm worried about." SO keep your fingers crossed that we are on the downhill.

And he also wants us to start decreasing his other seizure medicine (phenobarbital)!!!

20 comments:

Grandma Cheryl said...

Thanks so much for this information. I'm so happy his seizures have gotten better. You are one amazing mommy - Charlie is blessed to be cared for and loved by you, Angel.
Prayers all go your way.
Love always,

Trish and John said...

Hooray for those Charlie Steps!!! Charlie is always in our thoughts. We love and miss you all...
~Trish and John

Harris Family said...

Congrats little man. I hope they stay away. I am so glad to heat the medication is working!!!!! You are an amazing boy!! Keep it up little man.

Tamara,

The Bountiful Family

Kristy said...

YEAH!!!! I am glad the ACTH worked!

Tera said...

Hey Angel! Glad his Seizures have stoped! and You can get him off those Medications!!I Hope and Pray that the Seizures stay away for you! I can personally say they are no fun to watch your little kid have!!

Tawnia Allen said...

This is such great news! He is such a little chuck, he is SO CUTE! I would just love to hold and squeeze his adorable cheeks! I think about you all all the time, and am always praying for the best! GOD BLESS!
Tawnia

(your snuggler friend)Hope Charlie still likes it:)

Ginny said...

Yea!!! Here's to hoping and praying that they stay away! Have I mentioned that I love this little man? ;-)

Andrea said...

This is such awesome news. Go Charlie! Go Charlie! Go Charlie! How did Britton's birthday party go? I would love to see pictures! Hope everything else is well!

Andrea Mathis

P.S. Thank you for always posting comments on my blog :)

Jada Rose said...

GREAT NEWS!!!! No doubt the apparent success was in large part due to the fast actions of a very cognizant Mom!

Through the Looking Glass said...

Atta boy - way to impress! Honestly, I am more impressed that you, Angle, knew how to rig this whole set up on your family room couch and read the results. I can't even plug in the VCR correctly. Atta girl, Angel!

Kristin said...

SO glad to hear he's improving. We'll keep praying for more good news!

Anonymous said...

yeah that the medicine really is working! we hope that charlie feels better and that the tapering off will go well! we love his new chubby cheeks, too!

kimsuecamp said...

Keep up the good work Charlie Cooper. You continue to be in my thoughts and prayers and want you to know that you are very lucky boy to parents and family so special. To all of you, each babystep he takes, is a tribute to your care and love for this little guy.

whitney said...

You are a superwoman Ang - absolutely inspiring! Way to go Coop, kiss kiss kiss.

Anonymous said...

YAY! That is great news! I think chubby Charlie is adorable. :)

-Friend in NC

Anonymous said...

Good job buddy. Nice to get that over with before the cold season really gets going.

Bryson

Anonymous said...

What wonderful news!!! I love hearing that Charlie is doing better. This news made my whole day much better. I am SO impressed with you, Angel, that you know how do do so much to take care of your child. I know Charlie must love you dearly. thank you for keeping all of us posted. You all continue to be an inspiration to SO many! Give sweet Charlie a little hhug for me!
Connie

Heidi said...

oh man, more seizures and a cold!
:( Good thing Coop's strong!! Hang in there.

Anonymous said...

Haven't posted in a long while. So this was a great bit of news. I hope the Charies steps continue. ou guys are awesome parents and you have an awesome family....
Love, Jlll B

todd andrizzi said...

angel,
thanks for sharing this whole thing with me. the little stud is an inspiration to me. our prayers and thoughts are with you and your family. "Forza" (be srong)
todd andrizzi