just learned that my 5 yr daughter is having seizures

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Laylasmom

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We took my daughter to have an EEG last week after her teacher said she blanks out for 5 - 10 seconds and the school nurse called and said this may be a seizure. Her Dr quickly gave us a referral for an EEG. I got the call today that she is having seizure and they scheduled us to meet with a neurologist in the morning. Not sure of diagnosis yet just it is seizures. Can someone please help me with questions to ask. I've done some research on medications and their d=side effects. I also looked in to natural products because i could tell something wasnt right during the EEG. i had went online and saw pics of abnormal EEGs. we were in the room with her during testing and when i noticed her having a blackout i looked at the screen and saw the wave pattern change. just need some questions to ask and any recommendations on natural products like fish oil or epil-stop.
Thanks
 
Sorry to hear about that. Of course, the rule disclosure is to speak to your doctor, but being that I have had seizures since I have five myself sleep is a key ingrediant to consider. Try talking to your Dr about the ketogenic Dr. Get back to me once you hear anything.
 
Ok thanks so much. will post an update as soon as we get back with the exact diagnosis. will put Ketogenic on my list of questions.
 
yes. have thought about our sleep habits. shes in kinder this year and they do not take naps like she did at daycare. I work late. I make it home around 9pm and we have been letting her stay up late so i can spend some time with her. we are trying to get on a better schedule
 
Hi Laylasmom welcome to CWE!

It sounds like your daughter is having absence seizures (more info here: http://www.epilepsy.com/epilepsy/seizure_absence). There are a number of treatment approaches -- not only medication, but neurofeedback and dietary modification as well. The ketogenic diet mentioned above is pretty rigid -- very low carb, high fat -- so you might also look into the Modified Atkins Diet. It's more flexible, and has a good track record against absence seizures. More info here: http://www.atkinsforseizures.com/

Natural products alone may or may not help. EpiStill has had mixed reviews: See http://www.coping-with-epilepsy.com/forums/f32/epi-still-1487/ It can help to take a good look at dietary and behavioral habits to look for areas where modifications might help. Certain nutrients -- magnesium, B Vitamins, fish oil -- are considered neuro-protective, so if she's getting a healthy balanced diet that can help. Getting good quality sleep can be key as well. More good tips here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Write down all the questions you have for the neurologist. Medication is often the first treatment a neurologist will propose, but if you are uncomfortable with that, don't hesitate to let the doc know and ask about alternatives. Here are some questions you may want to include:
-- Will there be any additional tests?
-- What are the recommendations for treatment?
-- If medication, what are the pros and cons?
-- Is the neurologist familiar with the Modified Atkins Diet treatment developed at Johns Hopkins, and can he help you with that treatment approach?
-- What should you watch for in terms of symptoms?
-- What should you watch for in terms of side effects (if going with medication)?
-- What's the general prognosis for Absence Seizures?
-- What sort of information should you provide the school?
-- How often will she need to see the neurologist for follow-up?
-- How can you get in touch with the neurologist with additional questions? Does he respond to email?

best,
Nakamova
 
When speaking to the Dr. LaylasMom please remember to ask the Dr, to consider on how he any medication that he may use is going to affect her internally over the stretch of the years and how it will effect her emotionally and her moods. Over time fatty liver is and brittle bone disease if worse then actually having the seizure. There will be times, when you will be tired and so will your family, try to flip it into a positive spin to brighten and polish and leave her confidence strong like a jewel and not just another statistic, or a stigma.
If you have more questions just let me know. Look up the medications ingredients too.
magnesium stereate in Dilantin is made out of
 
thanks so much. really good info. I will look into everything just a little overwhelmed today. We went to see the neurologist this morning. She has childhood epilepsy absence seizures. He said they are generalized. last week during her 30 minute EEG she had 6 seizures so he thinks she may be having hundreds a day. He prescribed Zarontin. I asked him about alternatives and he seemed to only want to go with medications. He said Zarontin has been around the longest and works pretty good with children. I'm torn right now because my baby is so sweet and i hate to think about her on meds for the next 2 years. Ive read about the attitude changes they cause. but i would hate to not listen to the doctor and she gets worse. He said if left untreated their is a chance she might have grand mal seizures. today has really been hard. i have to make a decision thats going to affect the rest of my babys life.
 
I am so Laylasmom

I really do understand what position you are in and I know that I have provided you a lot of really fast. Just listen to your Dr. but, also remember want he does not tell you either. Did he say that she would only have to take medicine for only just two years?
I was told Epilepsy is not curable. Just take some time and get you some rest, and she bright child. I have lived this way all my life, but so have most all most precious diamonds as well.
So, don't believe them when they say she is going to get worse because everybody does. We are all humans.
 
He prescribed Zarontin. I asked him about alternatives and he seemed to only want to go with medications. He said Zarontin has been around the longest and works pretty good with children. I'm torn right now because my baby is so sweet and i hate to think about her on meds for the next 2 years. Ive read about the attitude changes they cause. but i would hate to not listen to the doctor and she gets worse. He said if left untreated their is a chance she might have grand mal seizures. today has really been hard. i have to make a decision thats going to affect the rest of my babys life.
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You won't know how well a medication works until you try it. You may find that it controls your daughter's seizures with minimal or no side effects. That is the ideal scenario. If her seizures are controlled for two years, then that's the soonest the docs would consider trying a med taper.

If Zarontin doesn't control her seizures, or if the side effects are problematic, then you try another medication, or another treatment approach. You aren't locking your daughter into any one medication or regimen. The main thing is to pay close attention to how she is behaving and feeling, and talk to the doctor if you don't like what you see.
 
Hello Laylasmom,
How is it going now? I have a 7 year old daughter with the same diagnosis and she is also on ethosuximide (generic zarontin). We have had to keep increasing the dosage and it affects her mood, appetite and sleep and honestly she has only been seizure "free" for 2 week stretches twice and then she starts to have them again. It is frustrating to have her dealing with all this at such a young age. we do our best at normalizing and enriching her life and just hope that she truly will outgrow it.
I hope things start to feel better for you and your daughter and I am glad to talk about what you are going through and share my experience. It sounds like you are about a year behind me with the diagnosis. My daughter was in kindergarten when she was diagnosed. In regards to the sleep-my daughter consistently sleeps 12 hours in a day. she takes 2 hour naps in the afternoon and then sleeps 10 hours at night.
Anyway, I would love to connect and help in anyway I can.
 
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