The Worrying Father

Hioto

Member
Messages
3
Reaction score
0
Points
11
Hello all,

I frequent many online forums. They are the best source of information on the net and I have been fortunate to have built trust and friendships through online forums.

I am joining coping with epilepsy because of my daughter. She is 2 years old and has recently been diagnosed with epilepsy.

The main reason for joining is because my wife and I are torn between providing medication (keppa was recommended) or letting this story play out a bit longer to see... Also looking for advice and guidance from others who are in the same position as my family.

A back story,
My daughters name is Tei. She had her first unprovoked seizure at the young age of 8 months. Lasted 3 and a half minutes. After a trip to sick kids hospital they referred us to a pediatric Neurologist for followup. EEG tests came up with increased electrical activity on the left side of her brain. MRI tests came back revealing multiple cavernomas in her brain which may or may not be related to her seizure episode. Genetics testing came up clean. This was back in November 2017.

Fast forward to February 2019. We were on an airplane back from a Mexico trip just Tei and I. About a hour from landing she experienced her second seizure episode lasting about the same duration as the first. She did catch some type of stomach bug while vacationing and was definitely dehydrated from the vomiting and puking the days before. At this time our neurologist suggested medications but we chose not to take them.

June 2019, my daughter has 3 seizure episodes in one day. All between 2-3 minutes. First one at daycare, second one after we brought her home, and one at the hospital. More EEG tests were performed but nothing stood out. Neurologists recommendation did not change regarding how to proceed. Just medication.

Some important but possibly unrelated things:
As a child I had one unprovoked seizure at the age of 1. No other episodes (32yrs). A recent MRI of my brain revealed a single cavernoma near my right temple. My mother also had cases of childhood epilepsy until she was 3 years old and then none since. She will be getting an MRI done as well as recommended by our neurologist. Just to see for information purposes.

I have been hearing from people that some kids outgrow the seizures. Also knowing that both my mom and I have had seizures at a young age and no longer have them makes me want to believe that Tei will also out grow them. We think we have an idea of her triggers and we have decided to do whatever it takes to accommodate, but since she can't put into words yet what she is feeling, AND because she is not the same person as my mother or me, we are torn.

Both my wife and I are against meds in any form. But we want to do what's best for our daughter.

Your thoughts, ideas, suggestions, directions are greatly appreciated. Thank you for taking the time to read my story.

Regards,
Shane
 

Porkette

Veteran
Messages
1,420
Reaction score
12
Points
148
Hi Shane,

Welcome to the forum! I'm sorry to hear that your daughter has started to have seizures. I've had them for 47 yrs. and had 2 surgeries to help reduce my seizures.
I got the best help when I started seeing an Epileptologist at a Epilepsy Center you can find them at university hospitals or really big hospitals. I found an Epileptologist knows how to treat my epilepsy better than any other neurologist I've seen in my life.

If your child is just staring for a few seconds and blinking her eyes she may be having a absence seizure also called petit mal seizure.

Don't give her a lot of carbs or starch foods because they turn into sugar and then it can sometimes trigger seizures for a person. Also when I'm sick with a cold or stomach bug I always have seizures and that's because my body chemistry is off a little.

Ask you daughter Dr. to do a DNA test on her by doing this test they will be able to find the best med for her with the least side effects or they can see if a person is drug resistant. All they have to do is draw some blood and take a q-tip and get some salvia from her mouth and send it to the lab. This will show the amount of enzymes in her liver along with her body chemistry and that's how the match up the best meds for a person.

Another thing you may want to do is take note if you use a cell phone if she has a seizure. Sometimes a person is cell phone sensitive which means the frequency of the cell phone is triggering seizures for the person. I have this problem when I'm in the stores and people are using their phones I sometimes go into a seizure.

You mentioned that you and your mom had epilepsy at one time this could be the reason why your daughter is having seizures it may be genetic. Take note of what the weather is like sometimes a day or 2 before rain or snow it can trigger seizures for some people.

Whatever you do get a calendar and write down what time of day/night your daughter had a seizure along with the type of seizure it was this will help the Dr. and they may see a pattern in the seizures. Keep her away from stress and make sure she gets plenty of rest, stress and lack of sleep are the 2 big things that can trigger seizures.

I wish you and your family only the best and May God Bless All of You!

Sue
 

resaebiunne

Stalwart
Messages
639
Reaction score
1
Points
78
I'd recommend medication, but not on the recommendation of an ordinary neurologist. I second Porkette's recommendation for an epileptologist who will know more thoroughly what medication to recommend and will understand more clearly the seizures and seizure history of your daughter.

Of course, I am not a doctor, so take my advice for what it is worth. I have had very good success with my epileptologist.
 

Hioto

Member
Messages
3
Reaction score
0
Points
11
Thank you both, I had not even thought of seeing a epileptic doctor. I was just going with the recommendation from sick kids hospital. I will definitely do some research into that. Our neurologist specializes in pediatrics, and has expertise in epilepsy and epilepsy sugerry. Although he has been great, a Second opinion might help us understand medications. Will ask my doc for a referral.
 

Porkette

Veteran
Messages
1,420
Reaction score
12
Points
148
Hi Shane,

I wish you and your family the best of luck seeing a Epileptologist I will tell you sometimes you have to wait months to get an appointment but if your daughters Dr. tells the Epileptologist she needs to be seen immediately you will have a better chance of getting in sooner.

I know this may sound silly but one thing you may want to do is put a little coconut oil on your daughters feet and legs or her arms. Coconut oil is high in fat and it has a few ketones in it and it's ketones that help reduce seizures especially for your kids. They have the ketogenic diet out which has been out since 1927 where a person has to eat high fats and low amount of carbs and starch foods this can sometimes help people out a lot. Another thing that helped me that you may want to give your daughter is vitamin B6 or B12 both of these vitamins help calm the nerves down.
I wish you and your family only the best and May God Bless All of You!

Sue
 
Last edited:

Hioto

Member
Messages
3
Reaction score
0
Points
11
Hi Sue,

Thank you so much. I have a large tub of coconut oil at home will definitely try that out. Will speak to my wife about the vitamins she is currently taking to see if b12 is included.

The seizures are so infrequent that it would be hard to tell if something like coconut oil helps, but I will definitely try this.

Thank you for your recommendations.

Best,
Shane L


Hi Shane,

I wish you and your family the best of luck seeing a Epileptologist I will tell you sometimes you have to wait months to get an appointment but if your daughters Dr. tells the Epileptologist she needs to be seen immediately you will have a better chance of getting in sooner.

I know this may sound silly but one thing you may want to do is put a little coconut oil on your daughters feet and legs or her arms. Coconut oil is high in fat and it has a few ketones in it and it's ketones that help reduce seizures especially for your kids. They have the ketogenic diet out which has been out since 1927 where a person has to eat high fats and low amount of carbs and starch foods this can sometimes help people out a lot. Another thing that helped me that you may want to give your daughter is vitamin B16 or B12 both of these vitamins help calm the nerves down.
I wish you and your family only the best and May God Bless All of You!

Sue
 

finalpoet

Stalwart
Messages
337
Reaction score
3
Points
53
I'm not a father so I can't say much about having a child or anything similar. I will say that my Dad had a seizure and my sister saw him and started crying. As for me I stayed calm and did everything I could. So I would say one of the best things is to stay calm when and if she has a seizure. It goes a long way. I would also recommend going to an epilepsy support meeting near you. Idk how many there are. But the one I go to is basically like a forum but in person. And the emotional support you are given is extreme. I've been epileptic since I was 16 and I'll say that my Dad worries about me a lot. From the child's perspective I would say don't let her epilepsy engulf you. When you see her, if the seizures continue, don't let her epilepsy be the deciding factor. Such as she can't play baseball because she can get hit in the head, that is debatable but my 2 cents. Later in life, you don't have to remind her twice a day to take her meds. You can double check that she is and obviously that depends on her age and your relationship with her. I will repeat, don't let her epilepsy engulf you. Again I'm not a parent so I can only say so much. But I do recommend not letting her epilepsy take over your life.
 

CQ:)

Veteran
Messages
3,836
Reaction score
9
Points
153
Hi Hioto

Welcome to the forum and sorry you are going through this. I am the only one in my family with epilepsy . I had my 1st seizure at 9 months and had tonic clonics until I was about 3 1/2. My parents were told I'd 'out grown' the epilepsy.

I went my whole childhood / teens seizure free and didn't have any issues until when I had a seizure in 2002 after being 21 years seizure free. I started having simple/ complex partials with the odd tonic clonic. My local neurologist tried treating the seizures with medication but we couldnt find a med combination that controled the partials. So in 2009 he sugested surgery and referred me to a epiologist in the city.
I saw the epiologist in 2010, had surgery in 2011.

My seizures did return in 2013 but not as strong or as often as they were before surgery.

Good luck with everything and hopefuly you can get your little girls seizures under control or she may stop having them.
 

CQ:)

Veteran
Messages
3,836
Reaction score
9
Points
153
I wish you and your family the best of luck seeing a Epileptologist I will tell you sometimes you have to wait months to get an appointment but if your daughters Dr. tells the Epileptologist she needs to be seen immediately you will have a better chance of getting in sooner.
Hi Sue

I dont know how long the wait is over there because our health system is different. Not everyne has private health as our government has a public health system but the disadvantage to that is it can take longer to see some specilaists or have some operations if you're on the public health system compared to privared patients.

When my local neurologist 1st suggested the surgery it was end of 2009, it was 6 or 7 months before I could see the epiologist as I saw him in June 2010. But once he confirmed I was a good candidate and sent my details to the epilepsy nurse at the hospital she got everything started and smooth sailing after that.
 
Top