This is the beginning folks. Yup, I have invvaded the blogging world. I have found huge support thru online groups and have actually gotten e-mails from couple of folks sending advice here and there...
Now I feel like there is pleanty of information on what Madie is dealing with...what I AM dealing with trying to get her better! I feel like I dont need to go into the whole darn saga about when it alll began just a year ago...She is almost 2 now.
My Madison had Infantile Spasms...a rare seizure disorder that they (genius doctors) found no known cause for. At 8 months she was not reaching Milestones...let alone reaching for that matter..there were a number of things that "those books" expcet our kids to do at almost a "timed moment" in their little lives and frankly I think its alot of pressure for not only the little ones but for us a parents! "ohhh what cant little tommy crawl yet?" "Ohhh MIKAYLA and JACOB have been crawling since 4 months" Arent they smart!! (no offense but I hate those names...can u tell??) now back at 8 months My madie was not sitting nor was she crawling or doing those mini push ups and if I had one more person tell me to "just do more tummy time" I was going to.....oh I dunno....go nuts..
Her wellness exams at the Pediatrician were alwasys flying colors...her growth her height, her eyes were good, her ears were good, 90th percentile for weight and height...wheh she was not "doing" the pediatrican said she had low mucsle tone...ya never saw this earlier? Well who am I to question...at that 8 month mark I was alone at the Pediaricans office when he told me that madie functoned like a 4 month old.
Tears well up in my eyes like it was yesterday thinking of that "what now?" moment... seizures at that point are FAR FAR from my mind...she was Fragile X I just knew it...Autism....or just plain retarded!! Oh I was panicky.... Well long story short on that stuff she was Fragile X negative as ME mama am full mutation....meaning I have a 50/50 of having a menatlly retarded SON....passing to a girl is a differnt ballpark...I have it and I am "generally" (lol) OK....
SO we ruled out anything genetic slowing her down...and beagn the Birth to Three folks...some call them "Early Intervention" in some states...
Those gals are great. They love madie to bits...lots of hugs and fun toys that madie cares less about..... it was brought to our attention the strange "startle" that she does...I SERIOUSLY folks thought nothing of it....thinking that she was startling herself....NOTHING.....never even thinkiong of how long she had been doing it....
Madies Ocupational Therapist said we should get that checked out and that it could be a seizure.
Seizure??
Within 2 weeks we were at Childreans Hospital getting an EEG and admitting her to the hospital for 4 days to begin ACTH steroid injections......Tears and Tears....how can I describe that time.
When I ask the doctor flat out if madie is going to be retarded and he has no answer.
Well after her ACTH we thought we were CURED! the world was an easier place...a month past...no seizures...another week past...no seizure....alllllmost 2 months had past and then at a family christmas party madie had her first head drop. Well her first in awhile.
She is almost 2 and her seizures are no longer head drops they are just the full blown thing...I HAVE classifyed them as Tonic Clonics.....where as her whole body stiffens and then she flops...loosing muscle tone for a few seconds and then comes back and naps for a bit after. but the whole movement that she does is just Tonic Clonic for sure.....
Well like I said she is almost 2 and do i go into the list of drugs we have been on?I seriously cannot get the dates....she has been on few at a time and some increased and weined....oh man.
1. Topamax. began at 15mgs ended at 75....weined her off just last month...almost a year increasing and decreasing this drug...alllong with...
2. Keppra - did nothing...a nasty liquid that came with this cheap dispenser that the numbers were fading off and the mL were being increased and decreased....weined off....
3.Clonopin- what a doozey....a woooozey drug...at her highest dose her eyes would roll in the back of her head....she was on...2- 0.5mg tabs a day...its heavy drug... NOW she takes half of a tab twice a day..
4.Prednisone- 2 months an oral steroid I was all game for this one...bring it on...I was certain we would zap em with this one... made her sooo irriatable but she made it thru...no horrible side effects like the injections
5. Zonegran. Allong came Zonegran....mixed with the Clonopin and the Topamax she was a mess...Slept most of the day...stil had seizures when she WAS awake so it maxed out the small amount of awake time she had!
6. Vitamin B6 50mg once a day. for two weeks.
NOW we currently are on Zonegran 100mgs at bedtime and the two halves of Clonopin and B6..
Madie is still seizing.
The doctor threw the idea of B6 our way about 4 days ago and said to try it...he already has an idea for a new drug to put her on.....I can just tell he has lots of faith in the B6....eh??
We would wein her off her Zonegran and get her on this new drug at the same time....
I am so tired. Burned out. Tired of the "seizure talk" tired of worring about Madie and if she will ever be seizure free, tired of not being able to "just take a load off"
Her developmet remains as is...she is a great roller...she is happy when awake and not being bombed my her seizures...I have had a taste of seizure free madie and you cant shut her up!! she will even reluctantly eat her baby food....now that is another battle....
Well I hope I have not bored you too much and I will get the hang of this thing and get lots of pictures posted ....when I can figure things out....
As of now...well thanks for reading...any advice to me or if YOU want advice from my experience.
I cannot say that it will be an easy battle with madie but I guess time will tell.
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