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Post by laurasnowbird on Sept 28, 2005 7:33:08 GMT -5
I know that I've been more than a little AWOL myself lately, but I haven't seen Christine on here much. Anyone hear from her and know how she's doing?
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Post by Cbean on Oct 3, 2005 9:13:16 GMT -5
Hey Laura!!! I've been skulking around every once in a while and if I didn't scroll enough would have missed your post! Thanks for thinking of me and I've been thinking of you too! Are you done baking that bun yet??? LOL!  I've been busy...very busy. Not much puter time for me and when I do have the time I go to bed and pass out! We're still in siezure hell here. We finished ACTH and weaned her off. Brought her back initially, but just didn't do the trick. Now she is on a drug called topamax. After two weeks on the full dosage I think we've found another drug that has failed her. You know, I was ready the post on DS being a burden and I have to laugh b/c I still don't know how much of a burden it is yet b/c of these (*&*%*%%* seizures!!! I can tell you - seizures are one hell of a *&^*(%^ burden!!! It's taken it's toll on this family and the one I'm most worried about is my son. Poor thing, dealing with all this scary stuff, stressed out parents and then starting kindergarten. He's having a tough time dealing with all his emotional baggage. Boy does he love his sister though. So, I guess my mother's voice is ringing in my head "If you don't have something nice to say, don't say anything at all!" LOL. I've mostly been quiet b/c I feel as though I just can't talk about this anymore. I feel like a helpless mother who can't help her children while they're suffering. So I hope I hear more from you and yours soon. How are you feeling? What is going on. PM me if you'd like. I'm kind of here, watching, LOL, thinking of you and all my Uno friends. |
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Post by Jessie on Oct 3, 2005 9:51:26 GMT -5
Hey Christine,
So sorry to hear you guys are going through this. Will keep you in our prayers that things turn around for your whole family soon.
We miss ya.
Jessie
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Post by Valerie on Oct 3, 2005 10:47:20 GMT -5
Christine, I'm sooooo sorry you're going through all this. You're right, seizures are a ^$&*# burden!!! Nothing good about those at all!
I just wanted to mention something to you, maybe something to think about. I have a cousin whose little boy has had seizures pretty much his whole life, he's 3 now. Anyway, meds didn't do anything for him, and a few monthes ago, Drs put him on an all fat diet, that's right, ALL FAT. Hasn't had a single seizure since then.
Anyway, don't think that you're failing your kids, You know you're not! Life is handing you and them a lot to deal with right now, and if you had the power to prevent any of it, you would. You're doing everything you can for both of them, hang on, things will get better!
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Post by gloriaelias on Oct 3, 2005 11:45:03 GMT -5
So sorry your family is going through this. My son Jacob also has seizures. He has the infantile spasms that he should have grown out of at 18 month. He's 3 years old now and still has them. He is on Depakote - 6 capsules a day. He has only been seizure free for six weeks since he was born. We have tried many meds also. Although Depakote is not 100%, it is the best one so far. His Dr. has not tried the ACTH on Jacob.
I do feel your pain and all I can say hang in there and God Bless you and your family. I will keep you in my prayers.
Gloria
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Post by carolyn on Oct 3, 2005 12:49:02 GMT -5
Christine:
We all really miss hearing about Emilyand Ryan and really I am sure I speak for everybody when we say we want to support you through the good and bad and the ugly. I can tell you that I have had months go by where I don't know how I functioned- stresses and strains that make me want to stay in bed and ignore the world. I have worried about how the other kids are dealing- and, well, they are fine. Your son will be fine because you are a great mother, and I mean this- pretty much every person on this site can tell you, we have had that guilt, and our other kids really are fine. So keep on keeping on, and I will add you to my prayers- Each night at dinner we say grace, and each memeber of the family says out loud a special something to pray for. You and your family will be mine- my prayers are especailly powerful and magical.
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Post by marisa on Oct 3, 2005 13:10:51 GMT -5
So sorry to hear Emily is suffering from those seizures. That just sucks!!!! Sending lots and lots of hugs.
I will be keeping you and your family in my prayers and really hope that the seizures get under control ASAP!
Marisa
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Post by Emilysmom on Oct 3, 2005 18:50:32 GMT -5
Christine~
I could not agree more with what the others have said..........this is one case where you do NOT have to stick to that thing our mom's taught us about not saying anything at all if we don't have anything positive to say. Now, what kind of support group would this be if we did that?? And what kind of FRIENDS would we be if we only shared the positive things in our lives? We fell in love with Emily long before she was born, and we CARE so much about your whole family. We want to hear from you ANYtime you feel like sharing. I sure wish there was something we could do. I truly am sorry it's not going well right now.
HUGS to you,
Susan
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Post by Cbean on Oct 4, 2005 13:57:41 GMT -5
Hey guys,
Thanks for all your thoughts. I really do appreciate them. Spoke with Emily's neurologist this morning and we're going to give her a full month on topamax before we move on. I was given three options: 1 don't do anything and see what happens (I don't believe in this one, neither does the neurologist), 2 more meds - trying depakote or lamictal, (both kind of scary) or 3 the ketogenic diet, which would be the fat diet you mentioned Valerie.
I hate the idea of all three, but that's very juvenile of me. Doing nothing...I can't look at that baby anymore. It was awful. More meds...it's scary having all these drug in this little baby. Even the diet bothers me as it will be a formula that she eats...we're doing so well with spoon feeding I hate the thought of her relying completely on formula. This all sounds so trivial.
I appreciate the prayers and if you can, please keep 'em coming. Carolyn, I am so touched that you made us your petition last night - thank you. We were in so many prayer circles when I was pregnant with this little bug and I always felt she was born so healthy b/c of them. Boy do we need help now!
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Post by momofrussell on Oct 4, 2005 15:24:49 GMT -5
BIG HUGE HUGE HUGS CBEAN!!!!!!! Please don't shy away from posting about your stuff!!! Nice or not!!!! We are here for you!!!!
I hope you find what "works" for your baby girl and get the winds to shift in your house! I know what it's like to have dynamics change in the house (with my oldest and her ADD at times) and we had a really rough year one year where the chemistry and energy was just SO off in the house.. if was awful!!! But... the winds changed a bit... or mommy just fizzled out.. one of those LOL
hang in there!
A.
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Post by laurasnowbird on Oct 4, 2005 15:46:59 GMT -5
Christine,
I am so sorry to hear that your little bug is being challenged with these issues. It must truly be exhausting, both physically and emotionally to deal with. Please come and vent all over us when you need to, that is what we're here for! This will probably sound ludicrous, but please make sure that you are taking some time out for yourself. Us mothers have a tendency to put everyone and everything ahead of ourselves, and you can get away with that for awhile, but it will take a terrible toll on you, and eventually on your family.
You are and will remain in my prayers. Hang in there. Laura
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Post by donnac on Oct 4, 2005 17:20:17 GMT -5
Thoughts and prayers from here also.
Donna
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Post by updowns on Oct 4, 2005 17:41:33 GMT -5
Hugs to you Christine and your sweet little bug. Hope you find the answer for a seizure free Emily. Thoughts and prayers are with you.
Stella
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&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
