Friday, March 13, 2009

Weight of the world.

Oh this Kid...:) Blood work came back STILL elevated liver! still!!...GO FIGURE...the one drug that has been helping after over a year of drugs.... We have been instructed to go down to 2.5 mL in the Am...and keep the 3mL at down by 1/2 a mL..with hopes of bad seizures not returning and her liver getting back to normal.. then two days into that...big one today..but that could be a coincidence?? ....
Can anyone tell me if taking Zonegran WITH depakote effects the liver MORE??? I SWARE I have read it but I cant for the life of me FIND the words I read! Nurse tells me that "oh no no no Zonegran is a drug that only effects Kidneys" BUT is it metabolized in the liver and excreted thru Kidneys?
I still stand my ground in IF we can get madie to gain some weight she can get the right dose of Depakote that she needs and when we can finally get her off the other drugs.... * frustrating...I am repeating myself aren't I???

Dunno anymore. I feel weight of the world on my shoulders this AM...maybe just because its been a trying couple of weeks...its just all catching up with me..Hubby was away on work this week and finally got home last night, madie has been up up up late every night this week once till 1030 (I hoo Regans mom is saying and up at 630 I cannot complain about her mood...its AWESOME! when she is not having lots of seizures you can just tell..her mood and giggles tell all....Big seizures at times seem like a thing of the past..then ZAP. BOOM....back.
I had not seen a large seizure since...uh..over a week ago...and just this AM ...a real big one hit her. (hints my time to blog) The things I see are like well....Its like a seizure wants to start but it gets blocked. its real quick. NOt like spasms....where her body went forward...just a seizure wants to start...but gets blocked. THOSE are persistent.
OH OH Finally obtained Madies Boost Kid Essentals 1.5 Shakes! NOT covered by stinkin insurance and 67 dollars for 27 at CVS.......I found a website that I can get them for 52.95...I dont know if I can "just buy them"
Still waiting on word about Madies Stroller...I am anxious to see this thing!
Welll anyhooo I will keep you all posted.
I wish everyone a good weekend...I look forward to some good family time..having dinner at Grandmas house this weekend welcoming Madisons Annt Brenda in town....and taking a breather. :) Hubby was invited to play some cards with the neighborhood guys in hopes of meeting some folks...should be a good weekend...:)!
GOOD LUCK AUSTIN!! I hope you get Answers you are seeking! I am so thinking about you!
HEY Karen! where are U?? Sleepyhead! Ohhh so a little pregnancy has slowed you down?? Nah, I was running marathons!! LOL
HUGGS Mamas!!


JSmith5780 said...

Hi just a lurker (my son had IS), but thought I would post this.

Patients with renal impairment

Caution must be exercised in treating patients with renal impairment, as there is limited information on use in such patients and a slower titration of Zonegran might be required. Since zonisamide and its metabolites are excreted renally, it should be discontinued in patients who develop acute renal failure or where a clinically significant sustained increase in serum creatinine is observed.

In subjects with renal impairment, renal clearance of single doses of zonisamide was positively correlated with creatinine clearance. The plasma AUC of zonisamide was increased by 35% in subjects with creatinine clearance <20 ml/min (see also section 4.2.).

Patients with an impaired liver function: The pharmacokinetics of zonisamide in patients with impaired liver function have not been adequately studied.

(this information is taken from the below website... it is a UK site, but you should be able to google any med name with SPC or PIL and get the same info)

Hope it helps

Reagan Leigh said...

I know there are several drug combinations that are not the best idea...I just don't remember if depakote/zonegran was one of them. I'll try to look that up for you (although you would think your doctor would be aware of that). I know how you feel, I really see a huge difference in Reagan when her seizures are reduced. She's more interactive and alert...she just seems to feel all around so much better! Oh to be done with these nasty things! I can't wait for the day.

Reagan Leigh said...

Unfortunately Reagan is on several drugs right now. She's on a high dose of Topomax, then she's also on Klonopin and just starting Lamictal. We want to get her off the Klonopin, but we're always adding or taking away something else! I don't think it's the meds making her throw up though. Sometimes she does it after she takes them, but usually it's before. Her appetite has always been nonexistent even before the Topomax, but I'm sure it's not helping things! Yes, it's too bad you don't live closer!

Karen said...

Hey little late reply on this one! I'll tell you one comment our Neuro made to us. I voiced concerns early on of the Depakote and the liver issues and it also states that multiple meds with the Depakote can make the side effects to the liver increase. Plus more so if below the age of 2. Our Dr.s comment was any med can cause liver problems specially long term meds. So my answer would be absolutely multiple meds can make it worse. All Dr.s have different opinons kind of like the whole Autism and vaccinations could it possibly be the cause? Maybe but know one wants to admit it.
But think about it even too much asprin or tylenol is bad on your liver so wouldnt these meds?

Here is what I pulled from

It states as follows: The best-known and most-feared serious reaction is liver failure. This disorder usually occurs within the first 6 months of treatment. The risk of liver failure is much higher in children under 2 years of age, especially if they also take other seizure medicine or already have other serious disorders.

Simply stated maybe you should pull that and it print it for that nurse!

Hang in there girly!!!!