coping parent

[treeman]

Hello, wishing to communicate with parents of other severely disabled children with epilepsy....my son (17) has 5 to 50/day, drop seizures, constantly injured...have tried every drug combination possible, had 3 craniotomies (20% removed,now brain injured because of surgery) have triied every alternative therapy out there,sez count this year is 2275 to end of november, worried about sudep, no respite care available in bc canada. frustrated, burned out with lack any progress, no work for me in the past 2 years of caretaking 24/7....burned out. I have a biochemistry background, understand and research this everyday.He is one of 2 children on a 5-6 drug combo in the province. He developed a very rare condition (4th child in N American history of any brain surgery to get"ficrobrillar collagen hemostat induced necrotizing granulatomous inflammation due to craniotomy" ie his immune system attacked his brain,necessitating 3rd craniotomy....the product is no longer used at BCCH.. exasperated...looking for answers or anyone else in this sinking boat. Sad to see a former sponsered snowboarder and bmx 'r going thru this, yes and he is my son, when he gets hurt, I get hurt....

 

[Nakamova]

Hi treeman, welcome!

I'm not a parent, but my heart goes out to you. I hope you can find some answers and support here at CWE.

Best,
Nakamova

 

[CathyAnn31]

Hi treeman, welcome. I can't imagine how difficult it must be for you guys. I'm the one with epilepsy and not my kiddos so I don't really have any advice about what you and your son are going thru. Lots of friendly, knowledgible folks here, hopefully some will chime in.

 

[epileric]

Sorry to hear what you're going through. I spent 25 years living all over BC and loved it (though Vancouver not as much).

Have you checked with the BC government re. respite? I don't know if you're on the Island but if so have you checked out the Victoria Epilepsy & Parkinsons Centre or the BC Epilepsy Society on the mainland? They don't offer respite but they might know which direction to point you.

 

[Chaz1]

I am wondering, do YOU ever get or take a break from looking after your Son?

My heart breaks reading your story, I am so sorry. My Son is 27 has Epilepsy, T/Cs mainly. SUDEP is a huge fear for me too, not only me, so many of us can truly relate to your fear.

In all my research on SUDEP, I have found how important the heart health is. Maybe you could ask your Sons doc to confirm his heart health?

My Son takes Omega 3 (and many more supplements in conjunction with meds), magnesium is another powerful heart/artery helper and calms electrical brain activity. Maybe you could get his overall mineral and vitamin levels checked?

Here is link to safety gear, you could consider if not already done so.

http://www.plument.com/

Warm welcome to CWE.

 

[jyearta]

Hi and welcome,

I'm the one with E. But I did take care of my mother during her illness.

It broke my heart to read your story.

I'm praying that you and your family will soon get some answers and much needed rest.