Madie's World: Beach Pictures

Some Pictures from our time at the beach..:) and a picture of the two most loved people in my life. :)

Medication we have Tried

ACTH- 2.5 months seizure free. then spasms came back .hardest treatment we ever endured...made her very puffy and sensitive to even touch..without crying..
Topamax-nothing. Was on for at least a year. DOPE-a-max! very sleepy on this one!
Keppra- A joke. nothing. not even a side effect!!
Predisone steroid- Nothing but boy did she EAT and was able to sit for a month or so on this..then that went away till she was nearly 3 when she figured it out! made her moody and a little chunky....but still seizing
Vitamin B6- A Joke. nothing cheapest one yet at 3.99 a bottle over the counter!
Zonegran- beagn at 100mg twice a day then tinkered alot with this one..killed her appetite..when finallt taken off began to eat..not a great one. Was thrilled to get her off this one!
Clonopin-worse on yet..caused muscle weakness and extreame drowziness..when taken off she figured out how to sit!
Valproric Acid/Depakine- began on 3.5mL in the AM and 4mL in the PM. (October 08)Seizure free since thanksgiving 08..with one big bad breakthru Tonic Clonic Have currently lowered to 3mL in the AM and 3.5mL in PM with no ill effect. knock on wood. currently on. grand mal free for over a year. May 2010 increased to 3.5mL twice a day. Seizures began to come back as drop seizures in 09 sometime then went away when
LCarnatin vitamin- for help with elevated liver-currently on. 4mL twice a day. gives her a fishy odor to her breath sometimes and gas...dunno how long we'll be on this stuff.. comes in a clear cherry flavored syrup
Banzel- beginnig on October 1st. 100mg in the AM and 100mg in the PM currently have increased to 200mg in AM and 300mg in PM..has certainly taken edge off drops but at a higher dose just killed her appetite...only on 100mg at night now.(May 2010) working on removing this too....OFF now!
Clobazam- from Canada. 10mg tabs starting on 1/2 tab twice a day...are we really at number 11?? Going to wein off Banzel if this one gets rid of her drop attacks. Currently going to wein off makes her mood terrible! and when began Tonics mysteriously came back..helped drop seizures though...very drowzy med...ugh. JUST finished as of may 26th AMEN!

One of the worse yet...next to Clonopin and Zonegran..

Ketogenic Diet...meeting with Dietician on June 9th!! Maybe maybe! Took many months. We are meeting for an offical start on Nov 3rd!! After much battle with insurance KetoCal the company itself will offer the max ammount of samples for madie per month so she can get her Ketosis on! to be continued!

Insurance will still not cover this. We are reciveing any samples that the hospital gets thru the nurse

Depakakote "Sprinkles"someday we can go down on this med. Think it works better than the liquid sugar containing formula...Still 1-2 Grand mauls a week. Currently on 250mg in the AM and PM..with hopes to go down ...... As of Feb 2011 We are on One capsule (125mg) in the AM and two capsules in the PM..

Carnatine Tabs(sugar free non liquid)

3 tabs a day one in AM and 2 in PM...no effect really..just a pain to crush and are very "tacky" when crushed and clump in food and liquid..
KetoCal Formua- Mixed with 6oz of Water and 2 Oz of Apple Jucie 4-5 Times a day in a her bottle. No Solids are being given at this time. So far still one big Tonic Seizure per Week. We have ofically been on diet with full just KetoCal for only a few weeks.

As of Sept 2011 We see 3 large seizures per month.

Madie's World

Monday, November 14, 2011

Beach Pictures

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