The smell of sausage and peppers fills my home as I type and simmer...I sit with madie by the computer..she just had a pretty big seizure..I am just at my end...I want to cry for the first time in weeks...
I sadly almost expected it.."I mean anything that ever did work..meaning Acth...worked for a month and a half...Madie is just days off....
I still find it very hard to accept that Madie will not be like other kids..In my heart I know the reality of it all...I greive..I never knew what unconditional love felt like till madie came into our hearts...
So what does this mean now? Increase Depakote when she has barely gained any weight and still half the time refuses food..getting at times half the amount of shakes they want her to eat...sleeping most of the day cause she is so not sleeping well??
I am so sad tonight..I want so badly for Madie to develop...these seizures are just zapping her little brain and stealing all her sparkle...
Do I loose hope in Depakote?????
Calling the neuro tomorrow and saying god knows what..Ill improvise...
Sending big hugs to all our munchkins...
maybe it is time I found a little faith in my life...been a looooong time god...are u still there??
5 comments:
Oh I am SO sorry! There is no other way to really say it...it just plain sucks! Hang in there! You're so close!
These seizures are a terrible roller coaster ride of good and bad times.
Maddie is a lucky little girl to have you and you are a lucky mummy to have her.
Keep strong.
Leita x
http://www.cdkl5.com
He is always there as are all your friends in the IS world. I don't know Madie's full history or what meds she has or hasn't taken, so I can't really comment. Would Hartford be willing to send her to Boston for a second opinion? Or are you closer to NYU and could see Dr Devinsky? Sometimes, it's worth getting a second set of eyes and a second brain involved.
Good luck!
I want to cry right along with you. I know it's so overwhelming...to have soooo many different issues to deal with at the same time. I always wonder WHY so much has to be involved. It's enough to deal with the seizures alone. But, they are our little troopers..We can't help but to keep on keepin' on for them...and you will. You've already found 2 meds that stopped the seizures for a period of time. You will reach that magic dose/med, I know it!
Hang in there...
***BIG HUGS TO YOU & MADIE***
Holli
Ughhhhh.....I so didnt want to click this post because I knew what I would read. I feel your pain hun, we have all been down this road of excitement for their seizure freedom only for it to be shortlived! The dissapointment of it all is a stresser. Maybe the combo if it all isnt working. I'm with Jen try seeking another opinion if possible talk with her regular ped on his thoughts ours helps us alot and keeps up to date on all her meds and tells us when enough is enough and that she was on too many when the Neuros wouldnt admit it. Cameran ended up with Ataxia once because they had her on 5 meds and kept uping them resulting in a 4 day hospital stay and losing strength in both legs causing her not be able to walk. That was when we drew the line and said enough our daughter was no longer their guinea pig!!! Raise the Depakote level I say yes, lower some of the others yes....Its time for some big changes for your girl, its a new year time for new things. I still have my hunch that it is all lying in her belly, she has alot of issues in that area. I pray things soon get on the right path. And hang in there she WILL get there it just takes time but your Dr.s are gonna have to be willing to move on!
((((HUGS)))) to you both!
Karen
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