I am so scared!   I just found out that my son (Derek) has to go for more tests. In case somebody don't know, he has epilepsy, and an abnormality in his brain. The abnormality doesn't seem to affect anything, but his seizures are. He is on two different seizure meds, and a med to help him focus. He has ADHD. The meds from the Dr. are the only thing that seem to help. I have tried herbal remedies, watching his diet, and nothing seems to work. We even put him through a surgery at the age of 3 for what they call a vagal nerve stimulator. It worked well for 2 years, so well that we were able to take him off all meds. Than it stopped working so well, and we had to put him back on meds, it still works some he isn't having 20 -25 seizures a day, but he still does have them at night when he sleeps.

Sorry got on a rant. Any how, the Dr. wants to do more tests to see if he might have to go for brain surgery! On Friday the 25th, it will be the last test for now, than I have to wait 2 months to see if he is a good candidate for brain surgery. I want to do everything possible for him, but I also don't want to let someone carve into my sons head. Does that make me a bad mother? I don't think so, but it has me worried that I will have to make a decision like that.  

Right now we are in the process of changing one of his meds. Which is a very slow process. It is going to take the whole 2 months that I'm waiting to get his meds changed. As we take him off one we have to put him on one, and raise and lower them at the same time. In return causes him to have more seizures. I am just so worried for him! I spend most of my time up all night with him,so he doesn't burry his head in his pillow while he is having a seizure. Between worrying about the surgery and his seizures, I might get 2 hours of sleep a night if I'm lucky.

My husband tries to help as much as he can, but with him having to work, I stay home to take care of Derek, it is hard for him to do much unless he is off work. Needless to say, I try to catch up on as much sleep as possible when hubby is home! Kids usually have different ideas. I don't get to spend much time with the hubby, but hope that our relationship can with stand yet another long drawn out fight with the epilepsy situation!

This all to much for one person to have to go through :!: I hate having to wait, I hate not knowing anything, and I hate the fact that my son has to go through all of these tests. What else can I do, but sit here and worry!?!

*hugs*  I don't think there is a lot you can do besides be there for your son, and do all that you can. Which from the sounds of it you are doing to the best of your abilities.  I'm sure you're son appreciates all that you're doing for him.  As far as the surgery,  this is just my opinion, I'd say it's worth a shot.  It might not clear everything up, but it could make the seizures fewer. I think that in itself would be a relief for you and him.  I'm not sure if my little rambling is helping. I'm just trying to look at a positive.  *hugs*

Just a thought...have you ever looked into those foam pillows (like the ones they sell for the tempurpedic mattress?)  Maybe some alternative type of pillow would keep him from burying his face like that and that might be one less thing to worry about.  Bless your heart, Mom.  Worrying about our children is the hardest thing we will ever have to do.  Ever.

My oldest was born a month early with a birth defect in his lungs.  I remember all the worry and stress.  Thank Goddess we had a surgery that took care of the problem when he was 5.  (Parents feel the surgery just as much as the kids do!)  He had 2/3 of one of his lungs completely removed.  If he hadn't he would have drowned in the blood of his lungs by now.  He is 16.

Hugs to you Mom, sending you some strength , and energy!!!!!! Lavendar-Ice

Shugar I am so sorry to hear about your baby boy!!!!

I too agree that if the surgery has been proven to help, then go for it. There's nothig any of us can say or do except be here for you when you need us,, and send you whatever energies you need to support you.

I am so sorry to hear about your trouble.  It can be so trying when some one you love is sick.  And it in no way makes you a bad mother to be worried about a doctor operating on your baby.  I hope you find a lasting solution.  

I have an idea for the pillow problem.  Try tucking his pillow under the fitted sheet next time you make his bed.  That way he still has it to support his head but he can't toss it around and end up with it over his face.

Hope things get better soon.

Sending healing Reiki energy to you and your son.   Goddess bless you.

I am so sorry to hear of your boys heath problems.

I know of a well know footballer here in Australia who under went surgery for his seizures and he is now so wonderfully healthy.

It is the hardest job in the world being a parent and dealing with the stress of illness is heart breaking.  You are obviously a wonderful mum and a strong person.  I wish you luck and send you healing energies for yourself, your son and your hubby.  In these situations it is easy to loose sight of each other ( you and your hubby), keep each other close and the strength of to that have so much love to give can over come anything placed in front of them.

Best of luck

Kath

Thank you one and all for all the energy and support, it is greatly appreciated! We can definitely use all that we can get. As far as me and the hubby go, as Derek's condition gets worse I just hope that arguments don't start. So far so good though! (kissyou)

Indigo, I will definitely have to try putting his pillow under his sheet. At least that way he can't grab it during a seizure and bury his head in it. Maybe i might get some more sleep that way!  (thinking)  of ZZZZZZZZZZZZZZ'S!