• The new WDWMAGIC iOS app is here!
    Stay up to date with the latest Disney news, photos, and discussions right from your iPhone. The app is free to download and gives you quick access to news articles, forums, photo galleries, park hours, weather and Lightning Lane pricing. Learn More
  • Welcome to the WDWMAGIC.COM Forums!
    Please take a look around, and feel free to sign up and join the community.

*~*~* MJ's Chatter Boxes *~*~*

MommytoMJM

MommytoMJM

New Member
It's called Keppra and it has some wicked side effects, she is super moody, clingy, waking every 15 minutes or so, it's just awful. We are in the first week of taking it, after this week we are supposed to titrate the dose up...so far it isn't controlling her seizures well at all, but she isn't at the full dose yet....
 
nibblesandbits

nibblesandbits

Well-Known Member
PotteryGal said:
New to this thread, so just wanted to say hi! I can relate to your 'fun' with the waiver, though. I'm not even jumping hoops with our state authorities over funding, it would be a waste of time. My hubby makes too much money to help, but never will make enough to pay for the 30-40 hours
of therapies the experts suggest is best. Our son is PDD-NOS, the 'specialist' called it atypical autism when we pressed the issue. (what is 'typical' autism anyway - isn't it a spectrum disorder?). Sometimes I wonder if the specialists have clue.
Sorry, rant over :rolleyes:. Hope MJ is getting better.
Click to expand...
Welcome to our fun bunch! You can call me Nibbs!
 
PSU_Princess

PSU_Princess

Member
MommytoMJM said:
It's called Keppra and it has some wicked side effects, she is super moody, clingy, waking every 15 minutes or so, it's just awful. We are in the first week of taking it, after this week we are supposed to titrate the dose up...so far it isn't controlling her seizures well at all, but she isn't at the full dose yet....
Click to expand...

Is this in addition to her other seizure meds or is this a replacement?
 
PSU_Princess

PSU_Princess

Member
Hopefully the side effects will start to decrease and the medicine will be more effective....and I just have to say again what an amazing person and mommy you are!!! I don't know how you do it everyday. I have enough trouble trying to keep track of my husband and keep him in line!
 
MommytoMJM

MommytoMJM

New Member
PSU_Princess said:
Hopefully the side effects will start to decrease and the medicine will be more effective....and I just have to say again what an amazing person and mommy you are!!! I don't know how you do it everyday. I have enough trouble trying to keep track of my husband and keep him in line!
Click to expand...

Thank you Chrissy, it's at time like these that those comments mean the most to me, this is going to be a rough 6-8 weeks (If I don't bag this and put her back on Trileptal till we see our Neuro....)
 
tigsmom

tigsmom

Well-Known Member
MommytoMJM said:
MJ had a horrible night, I just woke up, she finally consented to leave me around 10 am, I was up almost all night with her. She is feeling better from the cold, but I think the waking up in tears (nightmares possibly) is a side effect of this new drug, I am thisclose to pulling her off of it.....
Click to expand...

Sorry to hear she is having troubles again. How long has she been on the new meds?
 
tigsmom

tigsmom

Well-Known Member
MommytoMJM said:
It's called Keppra and it has some wicked side effects, she is super moody, clingy, waking every 15 minutes or so, it's just awful. We are in the first week of taking it, after this week we are supposed to titrate the dose up...so far it isn't controlling her seizures well at all, but she isn't at the full dose yet....
Click to expand...

Just catching up...

Give it some time to build up in her system. Hopefully the side effects will taper off.
 
PotteryGal

PotteryGal

Active Member
I am sorry about the seizures, how long has she been dealing with them? We don't have seizures, just tons of sinus issues, combined with sensory dysfunction when it comes to eating. His diet is extremely limited, and of course, testing we had done shows an intolerance to gluten and casien proteins and he craves bread and cheese. He definitely has gut issues. Does MJ deal with any of this? I would like to put Joel on the GF/CF diet, it's just been challenging to get started.

BTW, this forum has been awesome for learning about Disney. We go for the first time in 29 days! :sohappy:
 
DisneyBunny

DisneyBunny

Active Member
Disnut said:
Is he older, younger, or about the same age as you?
Click to expand...

Older... Like old enough to be my Dad. Sigh... I'm the youngest person at the agency practically...

PotteryGal said:
I am sorry about the seizures, how long has she been dealing with them? We don't have seizures, just tons of sinus issues, combined with sensory dysfunction when it comes to eating. His diet is extremely limited, and of course, testing we had done shows an intolerance to gluten and casien proteins and he craves bread and cheese. He definitely has gut issues. Does MJ deal with any of this? I would like to put Joel on the GF/CF diet, it's just been challenging to get started.

BTW, this forum has been awesome for learning about Disney. We go for the first time in 29 days! :sohappy:
Click to expand...

Howdy! You're going for the first time??? You'll be hooked! (like we all are :lookaroun )

Have you visited MJ's Spot? Bonny's worked long and hard on that site, making it fabulous. I believe she has a lot of info about MJ and her various diagnoses up on there.
 

Register on WDWMAGIC. This sidebar will go away, and you'll see fewer ads.

Back
Top Bottom