Newbie Mom

[Brandi]

Hi there, not really sure what I'm looking to get out of site. Just registered. I'm a mom of a 12 year old girl that was diagnosed with seizures 2 1/2 years ago. My husband and I were in the dark about epilespy back then. Happened one night. She had a grand mal in her sleep and 4 partial seizures after. We went thru several tests all came back normal. She was put on meds for the last two years. She had been seizure free so Doctor felt confident to take her off with the hope she "out grew" them. She was off meds for 4 days and seizured November 11. Two grand mal seizures an hour apart in the early morning. Back on meds and getting her back to her normal dose, hoping this helps. She is completely devastated and down. I am heartbroken for her. I feel mentally exhausted as she is scared once again that this could happen at any time. It seems to be a night thing but we can't be certain. We live in a small town in northern BC where resources are pretty limited. Sorry for the long vent. Feeling heart ache for my girl.

 

[acshuman]

! ! ! ! Welcome to CWE Brandi ! ! ! !

The fact that your daughter was taken off of the AEDs may cause a problem that can happen in a small percentage of cases. A person's body becomes adjusted to the AEDs that they are taking at that time and as a result of their being taken off of their AEDs their body may have problems readjusting to not having the aeds in it. If a seizure then occurs after the weaning off of the aeds and that person is put back on the same aeds at the same dosages as before,their body may not react in the same way it did the first time the aeds were taken. This can result in the doctor having to find a new treatment plan of aeds. This does NOT occur 100% of the time, but it is a possibility.
I certainly hope that your daughter is able to return to her previous aeds with no problems. :clap:

acshuman

 

[Porkette]

Hi Brandi,
Welcome to CWE! I understand how you feel. I was 10 when I started having seizures and my parents were very concerned. I'm 54 now and I have found the best thing to do is to see an Epileptologist which is a Dr. who specializes in epilepsy. Your daughter is starting to go through a time in her life where the hormones are changing a lot which in turn can sometimes trigger seizures for some people.
Since your daughters tests came back normal you may want to ask her Dr. to do a spect scan, Pet scan, and a wada test on her if she hasn't had any of these tests done. This is what I had to have done because they couldn't find the problems with me a few yrs. ago and the test showed scar tissue on the right temporal lobe.
You may want to try the ketogenic diet with your daughter the diet is high in fat but low in carbs and starch foods this in turn builds up ketones in a person which helps reduce or stop seizures. The diet has been out since 1927. I have family that had grand mal seizures and while they were on this diet they never had a single seizure.
Be sure and keep track of your daughters seizures and write down what time she has any along with the type of seizure she is having, by doing this her Dr. may see a pattern in her seizures as to what days of the month or what time the seizure will happen. I always have 1 week out of the month where I have seizures for 1-2 days. If you are interested another thing you can do is buy some coconut oil and have your daughter put it on her legs or arms this will build up ketones in her body and help her out also. I've been doing this for about 2 yrs. now and it has reduced my seizures a lot. I wish you and your daughter the best of luck and May God Bless you and your family.

Sue

 

[Frink]

Hi Brandi,
Welcome to CWE.

Sometimes kids outgrow their seizures and can be weaned off their meds, but most do not outgrow their seizures. If the medication was working before the wean it should work again when back to therapeutic levels.

This may not be the way you or your daughter had planned for her life to go, but with proper treatment she should be able to live a full and happy life.

It can take some time to accept epilepsy and learn how to deal with its impact, give yourself time to make those changes.

Remind her that epilepsy is a medical condition, it is not a punishment for some wrong deed, she did not do anything to "deserve" this condition, and she is strong enough to handle this.

The ketogenic diet, ketones and coconuts.
The brain prefers to run on glucose. When you go on a low/no carbohydrate diet, like the ketogenic diet, there is not enough glucose (glucose, a sugar, comes from carbohydrates) for the brain/body to use so the body produces ketones as a fuel. Something about the ketones or the lack of glucose helps to calm the brain and reduce seizures.

Ketogenic diets can help people who do not respond to medications but can also be very difficult to follow for some people because of the food restrictions.

Coconut oil, when ingested, can increase ketones in the body, sometimes even when not on a low/no carb diet, but since the brain prefers to use glucose it will not use the ketones while glucose is present.

Coconut oil applied to the skin is a wonderful moisturizer but there is no mechanism for the coconut oil to cross the transdermal barrier and enter the digestive tract to trigger ketone production.

 

[Brandi]

Hi Brandi,
Welcome to CWE! I understand how you feel. I was 10 when I started having seizures and my parents were very concerned. I'm 54 now and I have found the best thing to do is to see an Epileptologist which is a Dr. who specializes in epilepsy. Your daughter is starting to go through a time in her life where the hormones are changing a lot which in turn can sometimes trigger seizures for some people.
Since your daughters tests came back normal you may want to ask her Dr. to do a spect scan, Pet scan, and a wada test on her if she hasn't had any of these tests done. This is what I had to have done because they couldn't find the problems with me a few yrs. ago and the test showed scar tissue on the right temporal lobe.
You may want to try the ketogenic diet with your daughter the diet is high in fat but low in carbs and starch foods this in turn builds up ketones in a person which helps reduce or stop seizures. The diet has been out since 1927. I have family that had grand mal seizures and while they were on this diet they never had a single seizure.
Be sure and keep track of your daughters seizures and write down what time she has any along with the type of seizure she is having, by doing this her Dr. may see a pattern in her seizures as to what days of the month or what time the seizure will happen. I always have 1 week out of the month where I have seizures for 1-2 days. If you are interested another thing you can do is buy some coconut oil and have your daughter put it on her legs or arms this will build up ketones in her body and help her out also. I've been doing this for about 2 yrs. now and it has reduced my seizures a lot. I wish you and your daughter the best of luck and May God Bless you and your family.

Sue

Thank you so much for your insight. I will look into the tests you mentioned. I would do ANYTHING to help my girl out. It's a helpless feeling when you can't "fix" something for your children. Thanks again so much.

 

[Brandi]

Thank you very much for your insight. Very much appreciated

 

[masterjen]

Hi, Brandi;
I live in BC as well. I hope you and your daughter have been to the BC Children's Hospital for an evaluation of your daughter's epilepsy, as the specialists (pediatricians as well as pediatric epileptologists) can provide insight into the cause of your daughter's epilepsy. For instance if the seizures are caused by a congenital metabolic condition, the seizures can respond dramatically to relatively benign supplements and/or diet changes. BCCH doctors are used to working with families who are not residents of the lower mainland, so after the initial evaluation they will communicate with your child's neurologist back home (or nearest to your home).
I strongly encourage you to push (if needed) for your daughter to be seen at BCCH. They have helped so many families whose children would not have otherwise had the most optimal care for seizures.

 

[Brandi]

Hi, Brandi;
I live in BC as well. I hope you and your daughter have been to the BC Children's Hospital for an evaluation of your daughter's epilepsy, as the specialists (pediatricians as well as pediatric epileptologists) can provide insight into the cause of your daughter's epilepsy. For instance if the seizures are caused by a congenital metabolic condition, the seizures can respond dramatically to relatively benign supplements and/or diet changes. BCCH doctors are used to working with families who are not residents of the lower mainland, so after the initial evaluation they will communicate with your child's neurologist back home (or nearest to your home).
I strongly encourage you to push (if needed) for your daughter to be seen at BCCH. They have helped so many families whose children would not have otherwise had the most optimal care for seizures.

Thanks for the suggestion. Yes we see a neurologist at bc children's hospital. My daughter has had several eegs, ct scan, and a MRI. All came back normal. She did have blood work done initially at our hospital which came back normal. Our doctor didn't however go into detail regarding metabolic conditions. What testing is done to rule that out? I wish we had someone or some place to take our daughter to for support. For her to talk to someone with a similar situation might be comforting. She is 12 and at the age where life is hard enough with body changes and peer situations. I wish she didn't have to deal with this

 

[masterjen]

Thanks for the suggestion. Yes we see a neurologist at bc children's hospital. My daughter has had several eegs, ct scan, and a MRI. All came back normal. She did have blood work done initially at our hospital which came back normal. Our doctor didn't however go into detail regarding metabolic conditions. What testing is done to rule that out? I wish we had someone or some place to take our daughter to for support. For her to talk to someone with a similar situation might be comforting. She is 12 and at the age where life is hard enough with body changes and peer situations. I wish she didn't have to deal with this

So glad to hear your daughter has been seen at BC Children's. I would expect that the possibility of any underlying metabolic (or other) condition would have been considered by them when you went there, but if you're not sure you can certainly ask at your daughter's next visit to that hospital.

The BC Epilepsy Society http://www.bcepilepsy.com/ might be a resource to contact to see if they have a support network specifically for kids and teens.