new to this forum

[MrsBoopster]

Hi I am Brenda.
my 3 yr old daughter had her second seizure last thursday, we had to stay overnight at the hospital.
Her first was last year in September. The drs thought it was a febrill seizure.
She had another seizure Thursday morning. I called 911 and while on the phone with the dispatcher she had two more episodes but they were not as big as the first initial seizure. The drs said she had a bad sinus infection, it has nothing to do with the seizures though. She had a cat scan, heart scan test and an EEG. During the EEG she was asleep and had four spots where the drs said she was seizing. They called it focal onset seizures.
She had her follow up visit today and the Dr said she has epilepsy and for now since she has only had the two noted seizures they are not going to put her on any meds. They told me to watch her more carefully to see if she is having more seizures then we think. They said the seizure she had last year probably was not a frebril seizure. The dr did not give me any information on this. Just told me to take her to the er if she has another seizure. I want to know more about this.

 

[Bernard]

Hi Brenda, welcome to the forum. :hello:

There is a lot of information contained here in the forum. Make yourself at home.

 

[Loudmouth]

I have an 11 yr old daughter who has been diagnosed with E whn she was 9. The neuro gave me the choice of meds or not, and as she will likely (as my nan and myself have) get worse with age and need meds in future, We decided against meds for now. I manage her seizures mostly through diet. We do not have anything with sweeteners in (aspartame is the worst, but also saccharine and all others). And being on a gluten free diet since my 7 yr old son was diagnosed coeliac (celiac in US) has also reduced the amount of seizures both she and I have had. I would advise looking into diet as a method of control if no meds. Good luck, and look around, there's lots of advice on managing seizures through diet here.

 

[RobinN]

Hi Brenda welcome to CWE
I manage my teenage daughters seizures with nutritional changes. She began having seizures at 14. We did try meds, but they made matters worse. Even though we also are following a GARD diet, my daughter had tested to be hypoglycemic. Figuring out why and improving body function is my main goal these days. My research takes me back to nutrition each time. We do supplement as well, until the body is well enough to do the work for us.

I know it is frustrating at this point. Conventional medicine just does not know enough about why seizures occur, nor do they want to get to the bottom of it, as sometimes it is extremly difficult to figure out. However, there are wonderful doctors that are making headway for us. I am sorry to say, but you will have to be your daughters advocate, and take matters in your own hands. You have already seen that your doctors just do not know why your daughter is having seizures. They can only make educated guesses.

Keep a journal of food she eats, the episodes that you witness, activities (even swimming can cause seizures if the child is sensitive to clorine), sleep patterns, etc.
It will begin to make some sense, and you can begin to eliminate triggers.

Stay tuned.... there is always something good to read here at CWE

 

[mnij123]

I also have reoccurring hypoglycemia and my seizures are also tied to my blood sugar levels. When I test my levels and watch them I definitely have less seizures and the ones I have are less severe. People know to tell me to test when I am having lots or really out of it after my TCs.

 

[Nakamova]

Hey Brenda, welcome!

It sounds like you need some more answers and help from your doctors ASAP. It's a good idea to find a way to get control of your daughter's seizures sooner rather than later. The medication route has a lot of pitfalls, especially for a 3-year-old, so I urge you to ask your doctor about treating the seizures through diet. There's a lot of information on dietary approaches here on this site, plus forums for folks with kids.

Best,
Nakamova

 

[Meetz1064]

I have

to totally agree with the others. Having been on meds for 44 years (and I will be 45 soon) I do wish that my parents had had an option then to use diet then to help control mine. I was put on Phenobarbital and Dilantin, and stayed on them until I was 19, when I suddenly went toxic one day at college--and scared the wits out of my boss at work (who also happened to be my boyfriend at the time).

Now, I'm using nutritional changes--I'm also a celiac patient--to help control my seizures, even though I still have to take meds for now. With luck, I may actually get to go off them several years down the road.....