Hi Rochelle,
We figured out that my 11 yo daughter has narcolepsy last spring - after 35
days absent from school last year, hospitalization, & being written off as
nuts by numerous pediatricians & specialists at three "outstanding"
children's hospitals. So you have certainly found people here who know what
you are going through. The good news for us, and hopefully for you & your
son, is that diagnosis & medication changed our lives dramatically within a
day or so. I felt like I had my daughter back & she "reclaimed" her life..
It has been 6 months now- 6 months of pretty good functioning. Learning to
live with a chronic condition & sometimes feeling lousy isn't always fun,
but we are in a much better place then we were. Having to occasionally go
to the nurse to take a nap beats never getting to school.
With the symptoms under control, she doesn't act so scattered (she asked me
if she had developed ADHD- no, just narcolepsy) and the depression &
anxiety that she had while "sick" lifted like a cloud. Read through the
archives- the folks here have offered some great advice & insights. Once he
is diagnosed and they find some symptom relief & control, you will need to
help him with accommodations at school, etc. In fact, he should already be
eligible because of health problems.
Read the archives, ask questions, research & educate yourself, feel free to
email me off list.
Sue
(wow- we are getting a Mom's club here!)