Hold my breath

Saturday madie had her first seizure free day in a long time...I was skeptical.. THEN when we went to give her her meds that night and she gagged on them and spit them up! I was scared to give her her meds again fearing I was going to OD her...so I waited till Sunday morning and gave her half of her Zonegran dose in the Am and the rest at night...well she had 2 seizures that day....I blame the fact that maybe she did not get enough of her meds....doh. SO FAR today Monday monday I have not seen one yet..she is awake and making funny noises on her blanket.... "whatever works kido" lol...( now she is sleeping....I had to save the draft and continue)

NO SEIZURES TODAY!

Grandmas report that she was happy took a small nap and ate one bottle and had only wet diapers and no poopies...lol

We have to figure out WHY she is not walking! she is a killer roller but had been doing that for some time now...I firmly belive that her seizures wont LET her walk...the physical stuff will take some time...I fear the worse of wheelchairs and braces but when I think that way I go crazy! One....,day....at a time mama... I am sure when we see the Nuero that they will want to run tests...what if she is a Palsey kid???(cant u see that in MRI??) what if she will never walk??? Oh gawd! I go nuts...I worry sooooo much!! Dont we all??!! Its such a journey this thing called motherhood..they did not mention this in "what to expect" did they?? Maybe they had a chapter called "sucks for you" and one page that said "learn on your own buddy" gah!!

WHEN she DOES walk Oh.....look out for the pictures ladys....I told my husband our new computer will crash cause I will have so many pictures on it! I absolutly love Austins Pics of him looking so strong in that "stand" such a big boy!! I cant wait to see madie jump! isnt that the cutest when lil ones jump! Although I may not get her to jump in muddy puddles for me....lol

I cannot strongly say that this seizure journey is over...after over a year of batteling it out? Oh gosh, those lil demons are I am certain wanting to come and zap her! I have the next few days off from work so Iwill be watching like a hawk! I have also been trying her on simple foods EVERY day... Mixed Grain cereal and Bananas... or the same cereal with a veggie.....SHE EATS IT!! Now I cant say that this is the breakthru we have been waiting for but when I can get a few warm spoonfulls down and she doesnt cry and reject the food!! AMEN!! Twice a day for now...we are going to work our way up....takes time. I still need help from a nutritionist to get her off the formula for GOOD~ She actually opened her mouth for her food a few times when the spoon came near!

*sigh* another day.

I was very rushed this Am...feeling like things were moving before I was moving and was really huffy....feeling like Madie was being whisked away....:( But as usual she had a fine day and was happy as a clam....I will make it up to Grandma and frame a pic of madie from vacation for her new beach cottage..AND maybe make something yummy at our next gaithering...:)

I guess its time to go watch my shows....lol hubby is giving me the countdown....lol I guess I really should make some dinner as well.....pasta it is!!

~Me

whirlwinds

This was madie in March 08...she had such a strong balanced sit...still not catching herself when she fell but she could sit there for at least a few minutes! In MARCH....now she is unable to sit??
WEEELLLL Life has been a whirlwind of emotions for me this past week and with Madie being sick and working and ugh....the rest is just history...BUT anyhoooo
After her yucky seizure day on Tuesday I called her Nuero on Wednesday and told them that she was miserable and she slept allll day and that she had like 2 big yucky seizures that knocked her out and that I still see them when she is napping..small ones that wake her for a moment but she goes right back to sleep.. you know how it is...every day is differnt...good days that you think our little ones are getting better and then bad days that strike and you feel like that good day was just erased from their minds...with the little demons we call seizures...
She is currently on 150mg of Zonegran at night...and 2- half tabs of 0.5mg of Clonopin..one half in the AM and one at night...(does that make sense?)
So the nurse asked me if we have had any diagnostic tests done on madie and was asking me all kinds of things...Is she walking yet? Is she crawling? What is her diet? is is gaining weight? Well she is not walking and with that answer alone she was gung ho on figuring out what tests we can do...WHY she is so delayed... she also recomended a trip back to Genetics...maybe there is a genetic disorder going on...? We had been to genetics one time back in...Nov?...and we were testinig her for Fragile X syndrome...a chromosomal defect that mostly effects boys..damaging their X and pretty much causing mental retardation...I have a brother (a loooooonger story) who HAS fragile X...well I wont go into that disorder you can look it up on Google if you so desire...but madie was conpleatkly free of the disorder...NOT even a carrier...and usually its us women who carry it... the men get it...
Now when they tested ME they told me I had "full mutaion" which pretty much says I have a 50/50 of passing this on to any child!!
But we ruled it out for madie!! Nope.,......debiliating seizures instead...
BUT that frustration aside we also talked about her diet and she was going to make a note for the doc to get us hooked up (ghetto style) with a Feeding specialist....aka a Nutritionist to help us with that.... she was shocked that she was 2 and still on bottles....
WELL YA KNOW I NEVER DID THID BEFORE>.. kid can starve or she can eat her bottle...(that is what I said anyhoo) See "madie and her potion":A love story.......lol.

She also mentioned the ol Keto Diet...oh gosh...that is a hard one! Sometimes...alllways a "sometimes" childrean who do not respond to meds WILL respond to this nasty fat infested diet! She says if we do it we have to check madie in the hospital for a day or two for the "fasting" to get alll her other food out of her system before we begin...yeah yeah I read Allllll there is to know about this diet and the beginning is the hardest.... BUT she wont eat FOOD!

"oh there is a formula you can get" she tells me...

BARF...can u imagine what that stuff looks like?? I imagine like when you leave your old bowl of milk from your cereal on an end table and forget about it...I mean I have nevver done that before...lol

She made us an apointment for Oct 29th so we can make a game plan..said to call them in a few days on any ill effects the Zonegran increase may have if she gets effects...and just to hang in there...we made the apointment then cause we have a Pediatrican 2 year check up with our new developmental pedi!! they wanted to get her report as well sooooo "just hang in there" she tells me..(see statement on "Patience" in next para..)...gah.

So that is where we are AT folks....mama is burned out, stressed, tired, feeling at times I have let myslef go...feeling that I need to get back into those power walks and my low fat diet and pretty much "get my shit together" to put it in french... I absolutly hate the fear of the unknown...I hate not knowing what will work and WHEN anything will work...I hate having patience when it comes to something like madie's future!!

She is a happy little clam this Am..still a little stuffy(Madie's Auntie Mary took credit for giving madie her cold..lol) but in decient spirts..making monster noises and raspberries...gotta go get her out of her bed now time for tummy farts!!

Toooday is pricess day..I am headed out to get 4 inches off my looong hair and some yummy highlights!! woo hoo!!

comming Madison! (I got a squaker on my hands now)

bye!!

Picture of a happy girl

I got no sympathy for this Kid! After 3 days of being sick she was good as new yesterday..and did I see a seizure?? I seriously have to think..... maybe a twitch?? She was so vocal and rolly and just plain happy...you can still hear the stuffies but it had not slown her down.!

Just wanted to post that pic :) Run Run Run..therapy in 30 min! Madie is still swheeepin!

Hugs :)

The beginning of time2

Its hard to remember these times..hard to belive that that was madie in my tum tum! We had no other pictures of my pregnancy and we had juuust come home from a small resturant down the street and over dinner we talked about how we were going to take a pic of my belly when we got back to the apt..We had just moved into the 2 bedroom place October 06...I think this pic was on Thursday October 18th...My water broke errr Saturday at 1am and madie was born at 1:08 pm!
Such a time of nervous excitement, scrambling...err wobbling arround trying to get everything perfect putting strollers and carseats together, doing laundry, folding all her tiney clothes and buying diapers and opening of course allll my baby shower presents and washing the blankees and bibs... Oh man.! seems so long ago but really only a couple of years ago! Maybe these times are hard to remember simply becasue they were so great...so worry free...a GOOD kind of worry rushed thru me..."how can I take on being a mama?" "Am I going to be a good mama?" "Gosh I hope the baby isnt funny looking"" I cant wait to see her be a silly little girl I can take shopping to be my personal shopper "no mama its yucky"
I laugh remebering how well I was doing with my weight and then juuuust when I was getting into the next smallest size...40 pounds come...AHhhh!! All Bay-bee!
ANyhhooo I guess I have remisnised enough..Madie came down with a yucky cold a couple of days ago...just woke up yucky...Friday I came home from work and she was reeeealy warm...her little feet were just hot..she looked pale and was winey...I tourtured her with a bath and some grape tylenol and she was OUT...had to jossle her to get her meds down as well...
I was kinda freaking out cause I remember when she was on Topamax how her body would get real warm at times when the drug was kicking in...and I wondered if it was from the increased Zonegrean that she was running a fever...but I looked at her nose and her you could hear her stuffiness... and well I kinda ruled it out. Stilll....its alot of drug...
150mgs now... yesterday I will blame her cold for her sleeping all day but the next few days I may blame the drug if it continues...Gosh, you never know...
Although as I type I have a tricky roller on my hands...still sounding stuffy but so far she is happy today..
I am pushing hard for the Clonopin to be gone...now I figure with one drug down what would she be like on 2 drugs down?? with juuust ONE! at least we would know what was working...why do they do that to our kids...put them on more than one drug and dope their little bodies up like this?? Why does this happen to our kids at all? And why is it so much harder than any other seizures to controll?? My father had epilepsy which they CLAIM is not genetic and he lived a normal life...on meds all his life but more of less seizure free (hints producing yours truely) man oh man.
DespiteMadisons sickness I saw no seizure untill the verrrry end of the night when she was fast asleep in my arms in bed and I went to put her in her bed and she began to feel funny AS I was putting her down...seizure 1... doh.
Zonked out to the Emmy Awards last night and woke at the rise and shine time of 615...
Here I am. :)

Yeah! More Zonegran! yeah....ugh......

Where is madie in these pictures??? A day of one TWO many seizures.....no sparkle in her eyes..
A few little moments of playing with her suckies..(hands...lol)
cmon Molars juuust come in!!

Well I hate to back to back blog...but I have to share tonight of Madies day...nah...spoke too soon she was at 2 seizures today that bombed her out... one at 730am and one at 12:30ish...she was just so quiet and sleepy most of the day....up untill about 6 when she was happty then around her usual bedtime she was sleeping.....not much out of her today....MAN.

I called her Neuro today because its been 2 weeks on her B6 and they said that they want to increase her Zonegran....to 150mgs per day...I have to go to Target tomorrow and pick up the extra pills...once again a month where we pay 2 co-pays for pills...you know the drill....gah!

So no talk of the other drug...uh...my mind is blank...LAMICTAL.....er something...no talk of that...I think since she tolerates Zonegran so well.....lets maybe increase it with more hope of things getting better.... I am just so tired of her being so drugged...ALTHOUGH when she has not had a seizure in a few hours she is SOOooo happy...still on same dose of pills....I dunno... Its so hard to tell...is it the seizures or the drugs?? A lil of both if you ask me..

Zonegran: the new Topamax...something tells me we will be on this one for awhile...incresing and increasing just as we did the Topa-dopa......

Hugs

Me.

A one seizure day???

Oh baby person...Madie had a GREAT day today... A sweet little one allll morning! she had ONE seizure at 12:30 almost on the dot! just one!! now when she has these good days I call them honeymoon days and I fully expect a bad day to come soon...meaning a day of being zapped by seizures feeling as if alll the happy happy joy joy she had will be erased from her mind....any new strength she has gained will go back to square one...Its almost always feels that way! BUT BUT she has never had a ONE seizure day!?? could that be right? dunno....I sure as heck watched her...
Could her B6 really be working? but why would it take a whole 2 weeks to show anything? Wouldnt you just see results within a day or two?? I wonder sometimes if her seizures are tapering off? A MIRACLE! yeah... The docs say they wanted to try Lemictal on her... I am really not sure about that drug.. i have only read a small amount of info on it...I will be dammed if I let them add it as a 3rd drug for sure! as 2 is already enough! How long can you be on Clonopin anyhoo?...I heard that you cannot be on that one long...?
Anyhoo Madison had a sparkly day..>I kick myself for not taking more pictures I feel like I have to bottle those good days...

There was a time where I was afraid I would loose her...not in the death sense but in the mental sense. that she would regress into this no mans land person who just stared into space and said no words and made no nosies...I feared it so much when she was at her peak of seizures..
When I can get a giggle out of her or a smile and hear her making noises I know I still got her :)
Today I tackled my yard...what mess! I was trying to plant some bulbs to grow in...and I have never seen such enormous earth worms in my life! and spider nests that were so gross! I was on my knees digging a small hole when I hear a" russle russle "in the bushes and literally jump to my feet..gasping and looking around for whatever it was...most likely a chipmunk....lol! I even uncovered some maggots and some centeeeepeede bugs! Ahhhh!! I freaked out! I quickly mulched over my mess and I was outta there! running back inside like things were chasing me! lol. ON that note I guess that is allll i wll continue to keep everyone posted....How is lil Austin doing in Texas?? Post mama post...that storm is alll over the papers in CT....what a mess...the pics of austin taking his stand are hilarious! I love em!!
Hope all is well with everyone :)
Bye now!

Just a little ramble :)

These pics were taken tonight after I had gotten home from work and fed and baithed her and she was all game for laying on mama's bed..even gave me some giggles.. she spent the day at Grandmas house ..Is there something in the water at grammys house??

This morning was hectic...I woke at about 7:12 to be exact..having no clue where I was...madie almost alllways gets us up at 6-63o always! today was an exception...
I knew I had to get Madie fed, changed out of her jammys and get her bag packed and get myself fed and showered ...and out the door at 8.
Well I get her fed and changed and she has a bomb of a seizure on her changing table putting her in a cranky sleepy mood....
It will be 2 weeks on B6 on thursday...and I am already loosing faith in it...BUT I neeeeed to give it 2-3 weeks....how many of us have patience at this point?? hmmmmm I see no hands...
I knew I had to let her be and get myslef ready for work and folks..it was killing me that I was not going to see her all day.. I was getting that compleatly helpless feeling in my gut that makes me cry...I did NOT need that feeling at the moment! When I got all of madie in the car I come to find the road to get to Grandmas house is closed...eh? for what I dunno...So it takes me 30 minues to drive a normally less than 10 min ride...instantly running late...gah!
Now I live in the land of Scenic roads and Historical towns...Us and our little PUD community here..that is "Planned Unit Development" are in the middle of all that country and just minutes down the road that used to be pretty dead about 10 years ago has turned into a compleate shopping mecca..the old golf course was a gold mine!! When Shaws and kohls moved in! ohhhh boy!
SO anyooooooo I was taking what seemed forever to get to my job this AM and I had to quickly drop off my sleepy girl to grandmas and quickly explain to give her her vitamin at 11am and I was out! driving like a bat out of hell...for what? I dunno.... stupid job. I was teary leaving her this AM...feeling like I neeed to be with her...
Work asked me if I was able to take on Wed night I accepted.....thinking that I just neeeded the money...
gah!
Do you just get to a point where you feel like mama needs a time for herself?? For me its a hair apt....MY HAIR!! oh man! Its SO long and half brown and half highlights..and my eyebrows? Oh gosh...a waxing nightmare!! I am a mess. At least I feel like one at times..I have this horrible nervous habbit that I literally pull my eyebrows out...I pick at them and pull them...and lately that habbit has been bad...resurfacing.... my mother did the SAME thing....
I go to this amazing spa place where my gay hair dresser Robert is the ONLY person I will let touch my hair! lol.... you know those gay guys! lol!!
Well anyhoo work was somewhat busy and 430 could not come soon enough... AS ALWAYS I get to grandmas house and Madie is happy as a clam the family dog is laying nearby but not t0o close almost knowing that madie needs to be protected...and madie is just rolling on her blanket hanging out....LOl...
I worry TOO Much!!
I stole a few cookies from the pantry and gaithered madies things and went home...and here I am.
I cannot explain how great the support network is..the moms going thru the same thing as I...all the drugs and seizures and drugs and seizures...and drugs....oh man...
When is the reunion party girls!!?? We all live so far away but Im tellin ya a big gaithering of all of us meeting face to face...awesome!! Oh and plane tickets are just soooo cheap eh?? man oh man.. I think its so great that we all make friends and update each other on our little ones...
and on that note I am done rambling tonight....
Hugs mamas
:) :)

A good day! allllmost!!

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...

Big Kid in a little tub...

NOW does anyone have a kid bigger than mine who is getting really big for the baby tubby??? well you heard it here first folks.
This is bathtime tonight...
I have heard to maybe put the bumbo in the tub as well..in the big tub that is...She cant sit!!
I actually have pics at 10 months and last april where she CAN sit....now the ballance is gone...Im confused... but its the only ability that she has gained and lost like 2 times!















Oh it was a morning....madie was bombed with seizures and slept allll morning...she is now however a happy claim hanging out on mama's pillows and yelling happy yells..lol.
I took madie to the craft store in town and decided I needed some fun hobby stuff...beads and such...well I am in the bead asile and everything is SOOOO stroller accessable... gah! there was a ladder in the middle of the asile...so to get to the other side I had to go around to the other asile and come back in the oppostte side...but anyhooo... I spilled beads alllll over the floor as I was sniffing my way thru the selection...lol... Oh you betcha I booked....lol!
I did get some unique ones that I am planning a new creation in a long time.. That my friends was the highlight...Madison just slept alot of the day so I was eaither on the computer or I was doing stupid laundry...I spilled my OJ all over my bed and had to wash the duvet...DOH.
I called madie's Neuro today asking them if i should loose faith in the B6 at this point...due to her seizures today...they tell me to give it 2-3 weeks and if she is still seizing than yeah..loose faith..but NOT yet they say... When I say "they" I mean the nurses...you NEVER get to talk to the Neuro himself...he's like a celebrity that you literally PAY to see and talk to..."not without a co-pay are you going behind the curtain miss" lol...
So the nurses say that I need to give the vitamin some time...I am not optimistic of this...but I will see...Its worth any shot eh?
Its been a tiresome day...I have been kinda bla....I was up at 6:12 to be exact and have not had any shut eye since...hopefully when goober here goes to bed I can sit and relax...
Oh no, then there is dinner huh?? Anyone know a nice chef who can come and cook for me...??

This one is for Trevor. pass it on.

Madie on ACTH...week 1.... October 07

This one is for Trevor.

http://trevorshope.blogspot.com/2008/09/spilling-my-guts-for-presidentceo-of.html

get thru this lil guy. I figured I would just enclose the link to his blog...so you can read.

We were stuck in the hospital for nearly 5 days waiting for insurance to simply aprove madies ACTH...some are not as fortunate to get this drug...cost is about the price of a small car. I have heard of Trevor and his struggle that his mama is going thur to get his meds... THIS is just something that should be passed on.

"madies Potion"

Does anyone have as big of a feeding issue as I do?? This is Madie today..thumb locked in mouth and well...I put the spoon in her hand for cuteness but she is far from eating with it by herself..let alone eating solid foods avidly... She holds her shirt like its her blankee and just refuses to eat.
When she was...oh...5-6 mo the Pediatrician told me to go ahead and try some rice cereal and begin to intro more as I go..I was excited to say bye to formula! I had been going back and forth from Enfamil to Target brand dependig on if I had a good coupon that week...


I have been trying foods on and off for awhile and sadly its become more of a waste of expensive baby foods than anything.. I credit two weeks durring her ACTH that she was literally wolfing anything I would feed her!
Since beginning her B6 a few days ago its been recomended that she take the vitamin with something solid so it gives me a good excuse to try food once a day...Alot of people tell me to just let her be hungry and that eventually she will realize that food is her only choice..me being the hardass I am have been unsucessfull with that one.."we are the poster family for next step formula" Its sad...
What am I supposed to do when she is 2 next month? cut her compleatly to Milk and food?? She is a horrible eater...
My husband and I call her bottles "potion" cause we have been mixing bottles for sooo long and the stuff is really like potion...lol.
I of course blame her seizures for her lack of eating..I know she can suck and I know she had the ability to swallow her food..now the chewing I dont think she knows what to do with chunks of food..she gags horribly..
I duuno folks...gah!!
Today Madie had ONE seizure!! juuust one! now that I have said that of course Ill see another right? I feel as if we are sooooo close!! Will she outgrow this?? Will we have to try "another drug coctail"?? Does it have an end? Well her Neuro says it does but then most kids develop a NEW type of seizure...There are many types unbeknown to me but a seizure is a seizure buddy!
I guess that is all from me..just wanted to post those pics...lil one is upset for her "potion"

The Beginning of time...

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.