update on my son, Brandon

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Ash, the starter pack starts him on 50 mg and over 5 weeks he goes up to 200 mg. I'm wondering if he really needs to continue to have the dosage increased when he isn't having seizures at 50 mg....
 
Say something to the doctor... 200 is the highest strength of lamictal, I believe... most peope are on 100 that we fill for...
 
I was on 300mg, but like I said I wasn't using it for seizures. You should speak to the doctor, one I got above 50mg is when the nasty nausea started, so you should try to go for the lowest effective dose.
 
Boo...Brandon had a seizure yesterday and today already, but at least only having one a day at this point is still much better than 7 a day.
 
Brandon has been seizure free since January, after starting his medication, but has started having seizures again, within the last couple of weeks. He is down from 7 everyday, to one every other day. I am so disappointed to see them return, though. I thought they were behind us. I had wanted Brandon to stay on the lowest dosage possible that worked for him, but it looks like we will have to increase his dosage now. He has to be seizure free for 3 years before he can stop taking his med, or before he can drive a car, and now we have to start all over again...I am soooo disappointed.
 
I just saw this thread and am not sure how old Brandon is but often times when children go through a growth spurt their seizure med dosage needs to be increased. Also another factor in seizure medication is the possibility of developing tolerance to the one you are on and needing to transition to a different one. Just a thought. Good luck to you.
 
Brandon is almost 13 and had a huge growth spurt last summer. His seizures apparently began around the end of summer. He may be in another growth spurt now (the kid never stops growing!!! lol) He is going on 13 and almost 5'7". Hopefully an increase in his meds will stop this newest reoccurance. I sure hope he doesn't become intolerant. The doctor had mentioned at the start of this that after 3 different medications, surgery would have to be the next option...surely don't want to go there!

Thanks for your thoughts!
 
i just read through this thread and i must say Jenn, you are an awesome mommy! doing everything that is needed to understand and help Brandon :))

my dad has epilepsy, and although he has been on medication longer than i've been alive, he still has the odd seizure. it was really scary for me back when i was a pre-teen, sitting on the couch watching tv at night, with my dad fallen asleep on the other couch, and witnessed him having a seizure. this was before i knew he had epilepsy! he's had to change meds at least once that i know of, due to a tolerance buildup.

i hope everything works out for Brandon, and you find the right balance of meds to get him seizure free. big hugs to you, your kidletts, and your hubby!
 
thank you so much! It's gets so depressing, but I know there are people...kids...going through far worse and I really can't complain! Brandon is such a strong boy, that his courage and strength encourages me to set my fears aside. I just know he will be ok!
 
I'm sorry Brandon started having seizures again, I know how hard you and your family got to the point where he stopped having them. I will keep you and Brandon in my prayers.
 
Jenn I'm sorry this is happening again but driving a car is SO overrated! lol! I wish I never had to drive a car ever again.

You are an amazing mom and you do all you can for your boys and Brandon is so lucky to have a mom like you who I know will stay on top of this until it's fixed. Stewart was born a big baby and was always 99 or 100 percentile in every area growing up. He had horrible legs cramps as a child from all his growing so those growth spurts really do creep on you and don't really happening gradually as we all think they do.

I hope this will be just an adjustment of his meds.

Stay strong Jenn--you are all doing a great job!
 
I'm so sorry his seizures have started again :-( hugs & prayers!
 
thanks everyone! I have always appreciated all the support and kind words!!! It means so much to us!

We just got back from seeing Brandon's neurologist, and I think things look promising. The doctor told us Brandon's body was getting used to the medication in his body, and had adjusted to it...kind of like someone who drinks one alcoholic drink occasionally would be buzzed at several drinks, and one who drinks all the time wouldn't have the same affect with the same number of drinks. (Does that make sense?) Anyway, Brandon's dosage will be increased slowly over the next few weeks. I was also reassured that Brandon is taking a very low dosage now, and that it can be increased substantially before we have to consider taking a different medication. Hopefully that won't be necessary, though. And lastly, I was under the impression that Brandon can't drive for 3 years after being seizure free, but am mistaken. He has to be seizure free for 3 years before he can stop taking the medication. He only has to be seizure free for 6 months to be able to drive. So this is all relatively good news, and I'll relax a bit again!
 
YAY! I'm glad you have good news! And driving is overrated, I'm sick of it and I've only been driving for a handful of years. I have friends that have never had a license and they manage, so I think Brandon should be able to handle six months after seizures just fine. Seems he's managing great as it is just with the disorder. I'm sure he has you to thank for that :)
 
For those of you who have been following my son, Brandon's, progress, here is an update on him.

First, a quick summary on where we were. Brandon started (officially diagnosed) having Partial Complex Seizures in September of 2010. He was having up to seven seizures daily. Now, looking back, he may have had seizure activity, especially while at school, 2 years prior to his diagnosis. He started taking his prescription for seizures in January and immediately stopped having seizures. This lasted 2 months. He began having infrequent seizures again, and to this day, we have been unable to control them.

He now goes a couple days, up to 2 weeks without any seizure activity, but then may have up to 15-20 seizures in a day. With these seizures, his heart rate dramatically increases in it's rate and you can feel how hard it is pounding in his chest. His seizures completely wipe him out afterward.

But despite all of this, Brandon does very well in school and is a great big help to me at home. He is now 13. But because we haven't been able to eliminate his seizure activity after such a long period of time, his neurologist sent him down to Seattle for a 48 hour video EEG, an MRI, a CAT scan, and blood work.

The opinion at this time is that we will continue to increase Brandon's medicine until he is at his maximum dosage, but it will most likely not help. We would then try a second prescription but were told that if the first one doesn't work, the second one will most likely not work either.

There is a small chance that if we leave this untreated, he could outgrow this condition. More likely, though, his seizures could become worse until they reach Grande Mal state, and would disrupt any kind of normal life for him. So the only option we are faced with to eliminate his seizures is brain seizures. I want his seizures to be gone, but the idea of brain surgery scares me to death.

We try to put on a brave face in front of our boys, but I am so emotionally drained at this point. I am so heartbroken. I have always believed there is a light at the end of the tunnel, but the end of the tunnel where the light is just never seems to get any closer. I just remember trying to have the healthiest pregnancy...I nursed my boys for 4 years to create a healthy immune system...and still feel like I must have done something wrong. I know it may have been inevitable, but I have such a hard time thinking that I must have done something wrong and this is my fault.

I know lots of crap exists in the world, and children are faced with much more serious conditions than what Brandon has. And I feel so much for those families. But my boys have always been my life, and life just feels so fragile at times. I would literally die if something happened to either one of them.

Please just keep Brandon in your thoughts. I just want him to be healthy again.
 
I am so sorry you and your son is going through this. I know how hard it must be for you and Brandon.

When I was 9 years old my mom witnessed me having a Grand Mal seizure. I still remember the entire episode even though I could not speak or move I could hear what was going on around me and all I wanted to do was tell her I was ok.
I spent a week in the hospital and was diagnosed with Epilepsy. Turns out I had been having siezures in my sleep for a few years. As well as in class when I would space out for periods of time, the teachers thought I was daydreaming but they were small seizures.
I was put on Dilantin but that did not work so then I was put on Tegretol. I was on medication until I was 17 years old. I grew out of the seizures and haven't had one since, I am now 33.

It was very scary for my mom so I can only imagine how you are feeling. I will pray he grows out of them, I believe I read that 7 in 10 children grow out of seizures.
 
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