Fatigue and Your Daughter

December 7, 2010 at 3:39 pm

Dear Linda:

As a mom with a daughter who had GBS I know how frustrating and how difficult it can be to watch your beautiful, active daughter go through all of this. I am here for you.

My daughter, Natalie had GBS-Miller Fisher Syndrome when she was 3 yrs. old. She compensated for her loss of reflexes and found her way with activities that were physical. However, when she turned 12 yrs old and her hormones were changing. The fatigue was overwhelming for her, she slept close to 18 hours per day and felt like she had ice picks being driven into her wrist, ankle and neck joints. She had constant headaches and was unable to sleep. She had to be home schooled as she just did not have the energy to get through an entire day of school. It was awful.

Eventually, she did gain some of her strength back but it took sometime. She started University 3 years ago and of course was sick at the beginning of every quarter due to the close living conditions and stress. This year she just went through the removal of a brain tumor in her pituitary gland.

Please let your daughter know that it does get better, but she may always need to be a little more careful than most of her peers, making sure she gets enough sleep, etc. By the way, we found Green Tea capsules help tremendously.

I hope all of this helps and if you need a shoulder to cry on I am here.