update on my son, Brandon

[Jenn]

Thank you ladies.

Thank you for sharing Crys. Brandon's teacher had come to me a couple of years before he was diagnosed and she expressed concerns about getting through to Brandon. He wasn't grasping concepts. But he had also been experiencing severe headaches during this time period. I had his eyes checked, which were ok, and other than that, I was told to give him Tylenol for his headaches. I'm sorry I didn't push harder at that time to find out what all the headaches were about. So I do believe he was having seizures during that time period that just went unnoticed.

I really want the medication to control his seizures. But so far it hasn't. It's discouraging to hear that they most likely won't be able to help him because he just has way too much negative brain activity going on all the time on his right side. The nurse believes that if he gets worse, it could impair his speech and destroy his chance at a normal life. I want to believe, also, that he will outgrow them. But what if they get worse? I hate not knowing what the future holds.

If his med. doesn't work, he has to go back to the hospital and have part of his skull removed to expose that area of the brain so he can be hooked up to electrodes for a week. Depending on what is found out, he would then go for surgery. His recovery time from the surgery is supposed to be very fast, because of his age. Children recover faster.

We aren't at that point yet, but it doesn't look too encouraging at this point. The What-ifs are killing me.

I am so happy you outgrew your seizures, much to the relief for yourself and for your parents and loved ones.

 

[Dreamlite]

I have a friend who has seizures. Her dr had her mark on the calander for months when she would have episodes. Turns out in most cases there are patterns. She would be the worst 2 days before and after a full moon and the day of new moon. The rest of the time wasn't nearly as bad. Her dr had he double her meds doses those few days and she's been controled now for 4 yrs. I don't know if you son is the same way or if it would help in his situation, but marking symptoms and seizures on a calander really helped hr.

 

[Jenn]

Thanks, but I have been keeping track of Brandon's seizures for a long time and there doesn't seem to be any rhyme or reason to when he has them. I have kept track of the food he has eaten, how much sleep he has gotten, his stress levels, his activity levels...he seems to have way more than the typical patient with Partial Complex Seizures. And they started of being at most 7 a day, and now we're up to 15 + on some days. Then maybe 2 weeks without any. He has spent the last 2 1/2 days at a hospital in Seattle and he just has ongoing activity on the right side of his brain. I have an appointment with Brandon's neurologist next week and hopefully he can answer some questions for me.

 

[momenteller]

So sorry Jenn. ((hugs))

 

[Jenn]

thanks, Kate. I can't wait for Brandon and my hubby to get home from the Seattle hospital tonight so I can give them both a great big hug!

 

[Crys12065]

:hug2:

 

[Jenn]

yay! They made it home finally. It is soooo good to have them here!

 

[cindyv3737]

Big hugs for you both. You both deserve snuggle time by the fireplace with Spartan and Maya.

 

[Jenn]

Thanks, Cindy!

Brandon hasn't had seizures for a couple of days. We've upped his medication once again, and we have an appointment on Tuesday with his neurologist. It may be too early for him to have the results in his hands, but I look forward to learning what all the tests have shown while he was in Seattle. I will pray that for some reason the medication magically starts working, but I have seen a couple of videos on youtube and supposedly the surgery is supposed to be quite safe and "no more risky than driving your car to work everyday". I guess we'll do whatever it takes to make him healthy.

 

[Shooper]

Fingers crossed for you! Glad your boys made it back safely!