Very new with hard questions I can't handle

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HisDad

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Hi everyone. Since I don't quite know how to start, let me start like this:

It's been two weeks since my wife took our 11 month old son (youngest of two) to the emergency room. And I still can't put words to the feelings that I've been through since. Me? Well, I'm just your not very average 38 yr old dad. Not very interesting on the whole. My son however quickly became very interesting since it turns out not only does he have epilepsy, he has some weirdo rare form of it as well. Listen to this:

He gets 2 second myoclonic attacks (arms raising and jerking, head falling forward and eyelids fluttering) when he - get this - hits his head. And sometime when he is really surprised by a loud and sharp noise (like for example when he bangs the lid on one of the boxes in his room. Ever thought of how often a one yr old hits their head? Let me know because believe me - I can tell you. Anyway, he was put on clobazam (bensodiazepines being an all time favorite for doctors everywhere) which didn't do one thing and while we are waiting for the results of the MRI they want to put him on valproic acid.

Let's back up a bit. Ok. So he gets about 20 to 30 of these on an average day (yeah, we keep track). Every now and then there is an unexplainable one but generally it's either hitting himself in the head with a hard object, banging his head against a hard object or trying to steal his own pacifier and just giving himself a seizure. You get the idea. The thing is that they don't really seem to bother him. In fact, they seem more like the pause button on an old school VCR. He can be laughing hysterically, bang himself in the head, seize for two seconds and then go right back to laughing as if nothing happened. Tired? Drowsy? Angry? No way. So what's the problem you ask? Well, if he has what we think he has (and the doctors seem to agree although they are hesitant to say anything at all most of time, mainly due to the fact that the MRI results are important for the differential diagnosis but considering that he walks a bit and talks quite a lot I consider his neuro development to be par/above par for his age so screw them for now) then we are looking at Benign myoclonic epilepsy in infants, or rather a subset which is lovingly referred to as Reflex myoclonic epilepsy in infants (or RMEI for short for you acronym lovers out there, you know who you are). It has a pretty good prognosis. In fact almost all kids with it become seizure free and without signs of mental retardation. But then again it's rare. It's hysterically rare. It's so rare that nobody at our rather large hospital has EVER seen it. In fact they didn't even know it existed until they met this little fellow.

So the problem is that I am looking at a kid who is obviously undisturbed by the seizures and wondering what the hell I am supposed to do. Bensodiazepines and valproic acid have notoriously nasty side effects, the latter can cause liver failure in children under the age of 2 and both of them affect memory and other cognitive functions.

In a 1 yr old? In the most expansive phase of their development I am supposed to stuff him full of AEDs?

I... Well, I don't sleep much these days. My job, nay my whole reason for being is to ensure that his safety is guaranteed. That he is being looked out for. And here I have to make a very, VERY hard choice. There are cases in the studies of children that have not taken any AEDs. The outcome is the same for them as for the ones on medication. But they are very few, too few to be statistically significant. On the other hand there are numerous studies that show the negative effects on the drugs in question. As well as potentially lethal side effects.

I am sure there are parents out there, perhaps even in here who have been in my situation. Who have sat with their head in their hands and cried and wondered what the right choice is. I don't expect you to answer my question, I think that is for me (and my wife) to do. But how have you dealt with it? And of course all your thoughts on the subject are appreciated.

And again hi. It felt good writing these words, I am quiet way too much these days.
 

speber

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Welcome to the forum HisDad!....

Fisrt off...your child is very lucky to have a parent as 'on top of things' and as concerned as you are! You will find good information here in your quest for knowledge and understanding, as well as support from many others who can either relate closely...or just empathize due to their own struggle with epilepsy.

Hang in there...get second, third, however many opinions it takes.......and don't settle for "this is the ONLY option" until EVERYBODY is telling you that when you research! Many times doctors have one or two favorite options and quit....sometimes you can find someone who is open to more.

'Keep track' as you say you have been....it is the best thing to give the docs. Research.....research.......research. Short of the OBVIOUS need for an ambulance, it is really up to us to make sure the situation gets matched to the right treatment in the first place IMHO. For instance, you may discover a treatment that negates the need for AED's. You may also discover different doctor's 'takes' on how to best treat you child's symtoms.

Either way...you are learning...becoming more confident.

Good luck!
Speber
 

Zoe

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Hello Dad,
Children can have seizures for many many reasons. A diagnosis of epilepsy doesn't tell you any more than that the child has seizures-but not why. What you are describing also sounds like what happens when someone has a type of heart spell, which is often misdiagnosed as epilepsy. I wrote an article about it and you can read it on my web page:
http://www.indiana.edu/~pietsch/ras.html
If it is something you want to look into, there is contact information on that page. Also, you may want to go back to my menu page from the article and read the one on Vitamin D deficiency and seizures in children. This is often missed by doctors also.
It may help you to keep in mind that the word "epilepsy" only means your child is having seizures. It is often up to the family or the patient to figure out why and figure out how to stop them.
I had uncontrolled seizures for many years and brain surgery did not cure them. I brought them under control without drugs about ten years ago.
Welcome to our group!
 

Zoe

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Hi Speber,
You are so right on about the research! There are food allergies, food sensitivities, and environmental factors that can trigger seizures. Each one needs to be invesitigated to find and figure out how to stop, the seizures. A problem with B6 metabolism, or deficiency, is often overlooked in children who develop seizures too.
 

RobinN

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Oh I so agree with my friends before me....

Welcome, your post touched my heart. My child was not young, but she was 14 when she had her first Tonic Clonic seizure. I had my head in my hands many times. I have not been given the information that I needed from the medical field. They have confirmed my own research, and given me prescriptions for her. This took us into some of the darkest days we have had. I am not a fan of the anti seizure meds.

At first I began reading about how diet can play a part in seizures. Not the keto diet that brings its own problems, but I read:

www.dogtorj.com
www.stankurtz.com
www.pecanbread.com

and that took me to realize that there were other avenues to take.
Two years into this disorder, and we have tamed the monster quite a bit. My daughter has a nutritional plan, and supplements that support brain function. I am always reading more and more about this. She is doing neurofeedback that has helped to stabilize her brain function, and giver her back a better quality of life.

We just need to keep turning over stones, to find the key to our individualized issues.

Could your son just have had some vaccines within the past few months?
 

tinasmom

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I am sorry that you are going through all this. It's wonderful that you are here looking for help. I think it is important to make sure you have a neurologist that you feel comfortable with. If you have doubts about your doctor, find another one. We're on number 3. Both my daughter and my granddaughter started having seizures at the age of 6. I have found that forums and research on the internet have helped me very much. We are considering Neurofeedback and will be discussing it with our doctor. I watched the drugs make my daughter's quality of life go downhill and I do not want that for my granddaughter.
 

HisDad

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Thanks everyone for your very kind words. We are fairly clear on the ep diagnosis (I have seen the EEG), the major question left know is whether there is some underlying cause that can be determined in the MRI. And we'll get those results sometime this week. Or so I hear.

But he's happy. He. Is. Happy. And it is so easy to get lost in catastrophic thinking and miss that simple fact. The sun is still shining. The sky is blue. He is still the same child and I still love him more than anything in the world. Perhaps there is a lesson there. Live in this moment. Love in this moment. Because above all love is the strength to do things beyond our perceived capacity and the ability to resist pressures to do things that do not seem right to us.
 

Bernard

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Hi HD, welcome to the forum. :hello:

I don't have any advice or information for you right now, but I did want to welcome you to the forum. Your son's case sounds interesting. Can it be managed by just avoiding the known triggers?
 

RobinN

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We are fairly clear on the ep diagnosis (I have seen the EEG), the major question left know is whether there is some underlying cause that can be determined in the MRI.
You are so right.... love him no matter what.

I did have trouble wrapping my head around the "words" and the "vocabulary" ...and still do at times.
However.... as even your car runs rough at times, you need to find out the underlying cause to make it run smoothly. It won't always show up in the MRI. My daughter has a heterotopia (area of gray matter not where it should be, with the veins that are a bit abnormal), but I am told that is not the area of focus, or the "cause" of her seizures. It certainly might be aggravated by it and might be what is turning a simple partial seizure in my daughters case to a generalized seizure. But what I learned is that there are other causes. I think this is what Zoe was getting at.

Many are unable to find the "cause"... that is where the term idiopathic comes into the picture. Either there are too many "causes" or the one is just hiding from detection. I personally am working with about, 4-5 known causes or triggers with my daughter.

Also, I have been involved in other lists where kids have become seizure free, just from changing their diet. Food allergies or additive allergies can cause just what you speak of. Again it is finding that root cause that turns this into a puzzle.

Happy Father's Day, and give your little one a great big hug.
 

HisDad

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Hi HD, welcome to the forum. :hello:

I don't have any advice or information for you right now, but I did want to welcome you to the forum. Your son's case sounds interesting. Can it be managed by just avoiding the known triggers?
Well, we've thought of that. The only problem with the triggers is that he is so young it's almost impossible to avoid. (1 yr olds are basically the equivalent of very drunk old men trying to get home, they are in a good mood but they have absolutely no idea what they are doing or where they are going most of the time)

But today was a good day. Where we normally see 30 we saw 10 or so. Less Frisium? Omega-3? Better sleep management? Who knows, but it was interesting nevertheless.
 

HisDad

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You are so right.... love him no matter what.

I did have trouble wrapping my head around the "words" and the "vocabulary" ...and still do at times.
However.... as even your car runs rough at times, you need to find out the underlying cause to make it run smoothly. It won't always show up in the MRI. My daughter has a heterotopia (area of gray matter not where it should be, with the veins that are a bit abnormal), but I am told that is not the area of focus, or the "cause" of her seizures. It certainly might be aggravated by it and might be what is turning a simple partial seizure in my daughters case to a generalized seizure. But what I learned is that there are other causes. I think this is what Zoe was getting at.

Many are unable to find the "cause"... that is where the term idiopathic comes into the picture. Either there are too many "causes" or the one is just hiding from detection. I personally am working with about, 4-5 known causes or triggers with my daughter.

Also, I have been involved in other lists where kids have become seizure free, just from changing their diet. Food allergies or additive allergies can cause just what you speak of. Again it is finding that root cause that turns this into a puzzle.

Happy Father's Day, and give your little one a great big hug.
We are looking at it. Vitamins (B, D and E), Omega and the food we eat. We are looking at everything it seems. Like I wrote above. Today was a good day. Tomorrow will be interesting.

Thanks by the way. Me and the eldest went to an air show. He was screaming with delight for two hours. I don't have to tell you how good that feels.
 

RobinN

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I remember going to an airshow in S.F. when my first was little and he cried the whole time. Guess his ears were sensitive.

Glad you had a good one.
 
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Aloha HISDAD- I cannot imagine the stress you and your wife must be under but I can tell you love your son very much. I never realized how scary it was for my family when I seize until my dog of eight years had one recently, I know its not the same as a person but it really put me in a tailspin and I am the one in my house with E. I felt helpless. But I did understand better how my hubby and our kids felt. That being said, I agree with Robin regarding the meds-I came to E about 11 years ago and it has been bumpy...mostly because of the meds. I try to keep to a bare minimum or not at all if I can get away with it...not a doc just a patient. For me quality of life is everything-falling on the floor, well it is an inconvenience and sometimes painful so I aim for soft spots and I spend a lot of time learning, and becoming aware of my body's signals...tough to do at age one...you must have very broad shoulders:e: Be the best you can be and your son will too
 

DAVE1967

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IF IT HELPS YOU ANY HisDad GOTO WEBSITES (www.efa.org) & DO SOME READING UP ON THE SIEZURES . ATTACK IT AT HOME THROUGH YOU & YOUR WIFE BEFORE YOU GOTO THE DR AGAIN . FOR THE WEBSITE I GOTO & READ UP AT IS VERY HELPFUL TO ME & MY FIANCEE . I'M 41 YEARS OLD & I'VE BEEN DIAGNOSED WITH EPILEPSY SINCE I WAS 14 MONTHS OF AGE - MY DAD SAID HE'S YOUR SON YOU TAKE CARE OF HIM TO MY MOM & THAT MADE THINGS HARD ON MY MOM & MY BROTHER BOTH. I'M NOW LIVING IN KENTUCKY & WITH MY FIANCEE OF 4 YEARS & 4 MONTHS SINCE FEB 19Th 04 . ALL MY MEDS ARE POSTED ON MY PROFILE IF YOU CARE TO SEE THE LIST . HOPE I HELPEDOUT ALITTLE . DAVE
 

alivenwell

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Hi HD! Like your son, I was very young (18 months old to be exact) when I acquired epilepsy. Little kids don't always view a serious disability in the same manner as adults. I was a fairly easy going kid and could really tease the heck out of my sisters. It was fun.

As I got older, I saw ways to 'fake' seizures in school so I could go home and play while other kids were taking tests. It was fun for the moment. Later, I was severely mocked out for it or treated very differently. Denial from playing on monkey bars, swings, etc. was hard for me. Liability is not a concept to a kid. That was really painful. That pain motivated me to become more responsible.

I pursued college prep and ran into a wall called a guidance counselor. I fought for my rights to at least try to go to college. I now hold several degrees in technical arenas.

I admire your perseverence to find the right answers to this challenge. Your great rapport with your son is a great start. Communication with him is absolutely essential.

My mom supported me throughout the years when I attended public school. It is appreciated!
 

morgan381

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Hi, HD and welcome.

In some cases, the MRI can show and underlying cause, or a clue as to what it might be. In my case my MRI showed that my left temporal lobe was slightly larger than my right, but the doctors weren't able to say whether or not that was the cause. My EEGs showed wave and spike activity of epileptic nature, but no focal point. Were the doctors able to locate a focal point on your son's EEG?

In the mean time, you are doing everything right. You're taking a proactive approach toward his care and you're living life as normally as possible. He's lucky to have you and your wife as parents; so many parents get overwhelmed...

Best of luck,
Morgan
 

RobinN

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Morgan - Rebecca's right lobe is slightly smaller than the left (not to my eye) according to UCLA. They said it had no relationship to any seizure activity at all... but then they were wrong about other things so.... go figure. I guess I get to pick what ever answer I like the best.
 

JanieNut

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Hi HisDAD,

I just wanted to let you know how much I loved reading your posts. Your use of prose is easy on the eye. It really touched my heart.
Now...
Doctors are just people with louder opinions. Don't let them boss you around. I have been in your place and I am still fighting the battle. I have been scorned by the best doctors in town. I have also proven that research can empower a parent. When the room is full of white coats. Remember -
You are right. You are paying these people - just like you pay a service technician. They can have an opinion. You have the votes. You and Mom are the guardians of his health until he is old enough to take over. Until then, Guard Well, Hero!
 

skillefer

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Hi HD! Welcome to CWE. :) All the advice that Robinn and Speber, and the others gave is totally correct. There's not much more that I can add. :) Feel free to come and just vent. Trust me, E is frustrating. Especially for parents. We're here to help.:)
 
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