Med side effects

[Nursesandy1036]

Let's start with, yes I'm a critical care nurse of 20 years, but my only experiences with seizures has been in the hospital caring for patients with acute seizures, assessments, and administering medications. My 4 yr old grand daughter who lives with us was diagnosed in Aug with generalized seizures. She's had multiple febrile seizures since she was 8 months old, and she suffered enough "brain injury" over time to become epileptic. She started Keppra in Aug which has taken a toll on the behavior issues she already had. She doesn't listen, follow instructions, throws things, breaks things, ect. We finally put her on Strattera for her behavior and it has helped tremendously. We've noticed in the last couple months when talking to her she just stops answering or communicating and just looks at you. Dec 20 she had a seizure lasting about 10 mins. About 2 hours later she had a grand mal seizure that finally stopped after 35 mins with the help of Valium. Needless to say she ended up in PICU for the week, barely getting home in time for Christmas. Apparently her seizures are not under control and she's having frequent seizures. They start in the left brain (causing the blank stare) and progress the both sides = grand mal seizure. She is a delicate tiny thing and doesn't eat well. Since starting Keppra she complains all the time that her tummy hurts, to the point where she doesn't want to eat. The Strattera adds to this, and I feed her before giving her meds or she will vomit every time. I've spoke the her doctors about her tummy hurting but no one seems concerned, unlike myself. I've read through some of your feeds here and I see some of you administering B6 for tummy aches. How much B6 are you giving and does it come in something chewable. And what about Zantac or Pepcid to protect her tummy? Thank you for your feed back and reading my lengthy entry!

 

[Cint]

Like most folks, unless they've actually had experience with epilepsy, no one knows what to do, regardless if they're in the medical community or not. If a seizure lasts more than 5 minutes, it is an EMERGENCY, EVEN IF IT ISN'T A GENERALIZED SEIZURE! Her seizures are not under control. Your grand daughter needs to see a pediatric epileptologist.

Keppra is a drug that does have consequences on behavior. It's nickname is Kepprage, she does not need Strattera on top of AED, IMO. But I'm no dr. Just a patient who has been thru many meds and surgeries thru the years. Again, she needs an epilepsy specialist.

http://www.epilepsy.com/learn/impact
http://www.epilepsy.com/get-help/find-epilepsy-specialist
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy

 

[Porkette]

Hi Nursesandy,

Welcome to CWE. Cint gave you some good advice to get your grand daughter to see an Epileptologist. I've had generalized seizures for 44 yrs. and when I tried keppra it gave me a hot temper and the drug increased my seizures. My Epileptologist did a DNA test on me and found I was drug resistant to all seizure meds that are out on the market right now. To find the best seizure med for your grand daughter ask the Dr. to do a DNA test all they do is draw blood and wipe the inside of a persons mouth with a Q-tip, then all of that is sent to the lab and they can see a persons body chemistry along with the amount of enyzmes in the liver and match that up to to the best seizure med with the least side effect. I take 1 mg. of Folic Acid a day which helps me along with taking vitamin B12 and they both have helped reduce the seizures.
May sure you keep track of your grand daughters seizure write down what time they happen and the type of seizure she's had by doing that the Dr. may be able to see a pattern in her seizures as to what time of day/night she's having more seizures and what days of the month. You may want to try putting her on the ketogenic diet which works pretty good for kids who have seizures. Also try putting coconut oil on her skin once a day have her rub it on her legs and feet the coconut oil is good for the skin while at the same time it builds up ketones in the body which will help reduce seizures. I wish you and your grand daughter only the best of luck and May God Bless the Both of You!

Sue

 

[Nakamova]

Hi Nursesandy1036, welcome to CWE!

The B6 supplement is actually meant to help with Keppra-related mood issues more than with stomach issues. (It's thought to play a role in moderating the changes in Serotonin levels that Keppra can cause.) I recommend a B12/B6/folic acid supplement like this: https://www.luckyvitamin.com/p-1146...-b12-with-folic-acid-b6-sublingual-90-tablets It tastes orange-flavored, and she can chew it or let it dissolve under her tongue. It's best to take the supplement at the same time as she takes the Keppra.

Vitamin deficiencies can sometimes play a role in seizures. I assume your granddaughter has already been evaluated for these, but if not, Vitamin D is often low in people with epilepsy and is worth considering as a supplement as well.

I would stay away from the antacids for the stomach issues, since they can affect the body's ability to manage acids over the long term. If possible, take a closer look at her diet and any possible triggers, and try anti-acidic foods to see if they help.

If the Keppra or any other AEDs continue to be problematic in terms of side effects or seizure control, you might want to look into the ketogenic diet or the less-restrictive Modified Atkins Diet. With doctor's supervision and the help of a nutritionist/dietician, diets has helped control or reduce partial seizures in some children. More about the MAD can be found here: http://atkinsforseizures.com/wp-content/uploads/2016/05/atkins1.pdf and here: http://atkinsforseizures.com/

Best,
Nakamova