I am depressed

[BenosMom]

I am feeling rather depressed right now. My son was diagnosed with a seizure disorder on his 8th birthday. He was on meds that controlled it for 2.5 years. Then he had a clean EEG almost 2 years ago now. He went off the meds and was pronounced seizure free. This past Friday night, he had a seizure again. He had another EEG yesterday. We haven't gotten the results yet but I am sure of what I saw on Friday night.
I am so very sad.

 

[RobinN]

I can only imagine how you must be feeling. I get 1/25th of that feeling when my daughter doesn't make it past a month seizure free.

Have you considered nutritional changes?
Sounds like he is really close to his threshold level and if you could just bring his triggers down you might see results again.

A clean clean diet is where I personally would begin. Does he have any know food allergies? The standard American diet is really rough on the sensitive ones.

Hang in there.... many of us can relate.

 

[BenosMom]

thank you

Hi! Thanks so much for writing back. I just feel so lonely. I know it isn't about me and is about him and that should be my focus.........but I guess I am just selfish.
When you say diet, what do you mean? The Ketogenic Diet? We can't do that as I think it's risks outweigh the benefits for him. He also has high cholesterol. Is there something else I should know? He doesn't drink caffeine. He doesn't eat much chocolate. What else should we watch for?
I was very quiet when my husband got home, I could tell that he didn't like it. When our son had gone to bed and we went upstairs, I started crying and he got mad. We deal with stress very differently. I won't be a mourning person forever.........but I am still in shock and still dealing with the worry that he may not grow out of it.........and the medicines make school near impossible and really dull him out.

 

[Belinda5000]

I'm sorry about your sons seizure.
But the meds could control him so he could be seizure free.

I know what it's like be on meds in school I was on them all through school starting in 1st grade but I made it.So he can to.
Belinda

 

[Bernard]

Hi BenosMom, welcome to the forum. :hello:

... My son was diagnosed with a seizure disorder on his 8th birthday. He was on meds that controlled it for 2.5 years. Then he had a clean EEG almost 2 years ago now. ...

He's about 13 now then? A lot of people see seizure conditions appear or get worse at the onset of puberty. Changes to the hormone systems can do that.

Teenagers also don't always eat the best diets. Don't know if it's true in his case or not, but taking a multi-vitamin every day might be a good idea.

Given his youth and long period without seizures, I would highly recommend looking into EEG neurofeedback.

 

[skillefer]

Hi BenosMom! Welcome to CWE. As Bernard pointed out, a lot of people see onset of seizures when they go through puberty. He had 2.5 years seizure free. That's a great sign. As for the meds making him zombie at school, that will hopefully decrease. If it doesn't, tell his neuro. It might be that his med levels are too high. Just remember that you need to give the meds a couple of weeks to get into his system at the right levels. I know it feels devestating for you and his dad. But stop and think...1 in 100 people have epilepsy in the US. So it's not that rare. And IF your son should have to continue on meds, it doesn't mean that he has to give up his dreams. Many of us have advanced degrees, good careers, wonderful families, etc. Should he go bunjee jumping? Probably not. Should he ever go swimming alone? Probably not. But like asthma and diabetes, epilepsy is something that can be lived with. I hope this helps. Oh! And make sure that your son quits drinking any energy drinks, coffee, or soda. I'm a teacher. I see plenty of kids his age drinking all 3 of those....and they can definitely mess with his seizure control.

 

[BenosMom]

OK--I will look into the nuerofeedback. Is it done via a neurologist? As for diet, is there something special we should avoid for him or push for him?

 

[RobinN]

Consider this...In the perfect world:
If it wasn't a food 100 yrs ago, he most likely shouldn't be consuming it.
Organic as often as possible, nothing at all with additives.
Make soups with the freshest ingredients possible.

You say he has high cholesterol... take that as a red flag. Ask yourself why.
My daughters cholesterol was high as well. I knew there had to be a reason and I am working on addressing her issues from the inside out. My daughters liver numbers also were not within range, so I have been working on healing liver burden.

There are a lot of ways to make nutritional changes other than the keto diet.
Google GFCF or GARD or Low Glycemic Index Diet or Modified Atkins.
Turn the tears into action and don't accept the victim role. Tears of course will fall on occasion, but don't let them cloud his chances for healing.

Neurofeedback has also helped my daughter, so it is a great alternative to medication.

 

[BenosMom]

Wow--I really love the quote on the bottom of your reply. So true.
We have never had softdrinks in our home and so my son has no taste for them thank goodness. Anything else to be avoided?
If he didn't have seizures for two years but again now.........does that mean he never did grow out of them.........he just had a clean EEG that day? Does this change the prognosis of him growing out of them?

 

[RobinN]

What does he drink? Anything with High Fructose Corn Syrup should be avoided.

What I try to tell people from my point of view (others might disagree with me), is that you do not "grow out of" seizures. Each of us has a threshold. You and I do too. Your son and my daughter for some reason their threshold has been lowered. Does puberty have anything to do with it? Yes, most definitely.

My daughter had an abnormal EEG then three normal ones. Was it the fact that the first one was read wrong? Was it the fact that he brain was in a tizzy from having two tonic clonic seizures? I don't know. Were the other ones normal because she did not experience a seizure while being hooked up? Just because there is not abnormal brain activity during the time of the EEG does not mean that next week there won't be a seizure.

What you and I have to do is find the reason that their body is sensitive to the environment causing seizures to occur. Take it as a warning sign. It is only the symptom to something else not working properly. An allergy to a food, low blood sugar, decrease in oxygen, improper sleep patterns, etc.

What works is to take a calendar (or journal of your choice) and keep track of every thing that occurs. You can even get so detailed as to write down what he is eating.
I personally am going to keep track of how much protein vs simple carbs that Rebecca is consuming. She is working on making nutritional changes, such as no gluten and no casein. I watch her soy intake and reduce processed corn products. But that is just for my daughters needs. Your son might be struggling with something different.
Just know that he raised his threshold once... with help from a med and so he can do it again. If you want to go med free you will need to be more diligent in looking for the cause or causes. Meds can help you relax a bit more but in my opinion they are only putting a piece of tape over the problem in the long run. Usually causing other more serious problems in the meantime. It is a personal path that we all need to decide upon.

My daughter is med free, but she also has not gone for more than 1.5 mo. without having a seizure. This is down from 6/mo, so I am extremely encouraged that I am on the right path for us. The quality of her life is 150% better than when she was taking meds. She can't drive yet... but I am putting money away for the day when she can get her first car. It is a secret, but I have faith that we will be there one day.

 

[skillefer]

Well, to be brutally honest, your son may not have outgrown his seizures. And honestly, most of us here have had clean EEG's even though we were still having seizures. It may be that your son will outgrow some of his seizures but not all of them. By the sounds of it, he has more than one kind. His best bet is to control the seizures. Whether you choose to use meds or an alternative method is up to you. But encourage your son to learn everything he can about his condition. That way, he will be better at advocating for himself when he's at the doctor.

 

[Bernard]

OK--I will look into the nuerofeedback. Is it done via a neurologist? As for diet, is there something special we should avoid for him or push for him?

Most EEG neurofeedback practitioners are Psych doctors, not neurologists. Most neuros seem to be drug dealers or surgeons only. Seems like very few are up to date with current research on diets.

I listed several resources for neurofeedback provider directories on the resources page. I'd recommend you read through the neurofeedback links in mine and Robin's signatures to get a better understanding of what it is.

The chart linked in my signature lists several 'seizure control diets'. If you look through them, you will see that a common trait is a restriction on simple carbs (sugars) in the diet.

... Anything else to be avoided?

Look here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/