Tuesday, January 20, 2009

Knowing....SUCKS MORE.

Infantile Spasms are BACK
NOT GOOD
We only have the preliminary report so no real concrete details.
This just blows more than I can say.
Starting anti-seizure medicine tonight.
I don't even know what the seizures look like, the things I thought we possibly seizures were not.
I feel like I am fighting against an invisible f'ing creature.
I don't know what I'm looking for, so scared that he will regress again back to infant state.

So sad right now I don't even know what to do, just wandering lost.
Please say a few prayers for Daniel.

22 comments:

Erin said...

Mel,

I am SO SORRY to be reading this post. I don't know anything about seizures, but based just upon reading other blogs, am surprised to hear that he is having IS without any outward signs... is that typical?

I will be keeping Daniel in my prayers.

Love and hugs from me and Fletch.

Jessica mommy to Alex/ RTS said...

Thinking of you......Hugs from Illinois!

MeghatronsMom said...

That DOES suck MAJOR! I am so sorry. I don't know what else to say except I am praying for Daniel & you guys as well.

Jessica said...

That does suck. I was really hoping you would get some good news from the EEG. After Paxsons last one, I was really sad, frustrated, and pissed off. I will pray for little Daniel and hopefully he will have a positive response to the medication. What are you putting him on? Paxson has been on Keppra for 1 week and so far so good... we're keeping our fingers crossed

Jennifer said...

I'll be praying for you tonight. Just out of curiousity are the seizures back due to starting ABR or did you notice them before? I don't know if you remember but they did say seizures could come back starting ABR. Hopefully, ABR will get rid of them. Like I said, I'll be praying for you guys! Hope to see you in Chicago in a month.

Thinking of you. Tyse and Jen

Bird said...

Melanie, that does suck completely, but I'd want to get my hands on a copy of that report. Did they see hysparrhythmia or just chaotic waves? That preliminary report just raises more questions than answers.

If I could say one thing then I guess I would say that since you found out before he's even having outward signs then maybe you can nip this thing in the bud and get rid of it quick.

I'll be praying for you guys--keep us posted.

Anonymous said...

guys- everything will be okay, it has too! <3 me

Ellen said...

Oh, crap. My heart goes out to you guys. I will venture that if Daniel hasn't seemingly regressed, than it would seem to mean that the spasms haven't affected him. They have really good meds to treat these things, I hope they will have an immediate effect. Yeah, this bites, BUT you caught them fast and you can nip them in the bud.

Melanie, just to distract you, has it ever occurred to you that Max and Daniel kind of look alike? I felt like I was looking at Max in the photos you put up of the EEG.

Big hug to you.

JoAnn said...

I was so very sad to read this post. You and Daniel are in my thoughts and prayers tonight! ((hugs))

Justinich Family said...

Oh Melanie,

I am so sorry to hear this. I remember the feeling when Evan had a seizure while we were on vacation in July, it had been almost 7 months in between and I thought maybe we would have a seizure every now and then. Totally not how it is going to be. I am giving you cyber hugs and wish I could be there in person to offer support.

Marcela said...

Melanie, I want to say - DON'T WORRY, but I know you will, we all do. I want to say - BE STRONG, but sometimes, the best thing we can do is be weak and just cry cry cry. I want to say, DANIEL IS STRONG, and that I can honestly say. Look at the boy in front of you and how well he's doing and try not to be afraid!
Maybe you can talk to Amy Rogers from sorenrogers.blogspot.com ? She has dealt with a lot of seizure issues and meds and might be able to give you some ideas.
Thinking of you guys! Lots of hugs!

Jacqui said...

I'm sorry Melanie. I know how big a deal this is and what a terrible blow. You are all in my thoughts.

C said...

Aw, crap. I'm sorry, Mel and Lonnie. Not what you/we were hoping for, not at all.

When you can breathe again, I think Bird has the right idea -- I'd sure as heck want some more info.

Hugs and rest to you all,
C

Anonymous said...

Boone is my only man.
He is strong and can only get stronger.
Keep truckin' through Boone, cause when i get home..

"Were... gonna.... dance dance dancin Daniel!"

EMBelieve said...

I understand how you are feeling. It really sucks!!! Know that Daniel is in my prayers. I hope that after talking to your doctors you can get good answers and peace of mind.

I really believe in the special diets for seizures. There are a few out there that you can look into i.e. modified Atkins, ketogenic. Go to the yahoo groups and get advise from parents that diets have helped children with IS.

WhitneyBooze said...

So sorry to read about Daniel's seizures. I can't imagine how you feel. However, I can sympathize. Suzy got viral encephalitis 1 year ago, when she was 11 months old. We battled seizures, and now we are fighting for some recovery. She is severly delayed. I have been keeping up with you and Daniel - he is just WAY TOO CUTE!!! and I love your attitude (very honest)!! I will send out prayers for him. We can be found on our website - www.suzybooze.com
We are friends with Nathan and Marcela.
Whitney Booze

Billie said...

Oh man. That does suck. I am so sorry.
Thinking of you,
Billie

Melissa said...

Daniel is in our prayers! I am so sorry that he, and you, are having to fight this nasty, evil monster again! Sending you hugs and love from me and from the Twincredible Twosome!

Thanks for your very sweet comment on our blog, too!

laila said...

OMG Mel,
I can't believe this and I'm absolutly heartbroken.....your lil Angel will be very deep inside my prayers!!!

laila said...

Also let me know if you ever need anything, xoxoxo...praying hard!

Melissa said...

Oh man I am sorry to hear this news!! Sending you all hugs and keeping Daniel in our prayers. He is an amazing kid!

Keri said...

Sorry to learn of Daniel's seizures. My heart goes out to you and your family. Sending you all lots of thoughts and prayers.