Do you ever go thru your mind of what could be the right magic mixure of drugs that could cure your child's seizures..? Like Oh, if maybe if we added an extra half of the clonopin in the afternoon or maybe if we just got her off the clonopin all together and started to give her the Zonegran in the AM instead...or maybe we should wein her off all the drugs and began fresh with something new?? Then you read about all the different drugs and get frustraited because the ones that are being prescribed are NOT for "tonic clonics" and you are just SURE that that is the type of seizure and that you are sure that lennox gastaut is NOT in the cards...Then you take a deep breath and say "man I need a trip to the spa" "look at my roots!!" "gosh those caterpillars above my eyes are begining to breed!!
THAt is me.....
My Madison had a great day today..in AWESOME spirits...not doing anything monumnetal but happy...noisy, rolly, smiley, so alert! I allllmost thought that this would go down as "day one" At about 615 tonight I sat her on her highchair to feed her her "nanas" which has become a nightly thing trying her food EVERY day no matter what...
Well i put her in her "big kid chair" and I am ready to get her first bite down and she seizes...with a few violent "jerks" and her little body hunched over in her chair...then she comes to and crys and crys and crys.....
Well I have to give her a bath now she is covered in banannas and has a case of "greasy head" so I torture her and baith her... she crys and crys... I know she is tired and just wants to be alone and asleep... when I finally get her to the comfy chair she just melts into me and falls asleep...she is still sleeping....poor baby.
So much goes thru my head and I absolutly hate not having any controll over this! I am that person who likes to know what to expect...I hate not knowing WHEN she will be better ...or IF for that matter...
Well anyhoo...I had a dream last night that madies cure was in India...and we had to travel to this far off land to get this plant that when ground up and dried and digested was the cure for Madies seizures...even her Neuro traveled there to meet us so he could make sure that madie would be OK...It was a goo dream but I still woke sweating...that is so weird when that happens..or when you have dreams and you fall or trip and the movement of your arm or leg wakes you! hahahha
Who knows..hahahaha
I brought Madie to my OBGYN apt on Friday...Minus yucky details it was actually nice to be back there...reminds me of being pregnant and going in there EVERY week and doing stress tests and ultra sounds...my doctor marvels at how big madie is now... and the nurses just loooove her...they entertained her durring my "awkward time" hahaha
My doc always trys to get me to try the latest and greatest birth controll pills ...asking me if I plan on anymore kids and if I would consider the type that lasts a year or stays in your body avoiding a daily pill.... Frankly those kinds scare me....but I politely rejected those .... Having more kids is a touchy subject...if madie was not the way she was....this would be the time Id be thinking about it......
Well anyhooo I guess on that note I am feeling like I better make some dinner huh? Ill keep everyone posted...
2 comments:
Maddie is a doll. I got your link from the IS web group. My son Charlie has IS as well. I am praying that you guys find the right drug to knock them seizures out!!
Take care,
Molli
I felt the same way about camerans seizure meds. I still fill that way even though she is seizure free. I think what if I had just tried that med earlier would she have been seizure free earlier. Or would it have made things worse. So frusterating huh! The questions will drive you crazy and gray....LOL! Just know she will get there ;)
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