Well, first off, let me send a cyber hug your way, and share that the
journey all of the parents on this board take along side our children is a
challenging one. Also, there are some on this board who live with seizures
and share their journeys from time to time, too. My point is that you will
find support and encouragement here, as well as things to consider as you
move forward trying to figure out what's going on with your son.

Next, my son just turned 13 and has experienced seizure related symptoms
since he was six. There are some similarities between what you describe
with your son, particularly the nighttime activity and temporary paralysis,
that my son has also endured. One thing you will find with epilepsy/seizure
disorders is that no two cases are alike. There will be similarities, but
also many variations in presentation and treatment. It can be frustrating,
especially as treatment is a trial and error type thing. Please don't give
up hope nor let fear and discouragement drag you down. You can get through
this, and so can your young man.

For the first 5 years, my son had multiple MRI's, CAT scans, nerve
conduction studies, etc. all of which came back normal. His blood work also
always came back "perfect". We even had one neurologist tell us that our
son was faking it. Yeah, right. We finally took him to the Mayo Clinic
where they looked at all of our past MRI records, etc., did their own
rounds of testing and telemetries and said that our son clearly had right
frontal lobe partial seizure disorder. They connected us with our current
pediatric Neurologist in the Portland area (Dr. Colin Roberts at
OHSU/Doernbecher) and at long last we have a) a neurologist who is
outstanding in his field, b) a neurologist who likes children, c) has a
stellar staff who recognizes our name when I call and remembers who my
child is from call to call, or visit to visit, and d) who listens and
promptly acts upon every concern. By the way, after our trip to Mayo, the
Neurologist who said our son was "faking it" apologized in person for her
error in judgement. Hmph!

Couple things as you move forward:
a) Keep a journal of everything you notice, every symptom, any little thing
at all. Write it down and date it. For example, does your son ever seem to
just space out for like 2 or 3 seconds? If so, write it down. Does he
insist that he didn't hear you say something or hear a teacher say
something? Write it down. Those could be little absent seizures occuring.
Now don't be paranoid about it, just keep a daily log.

b) Continue to encourage him (and yourself!) to think positive. If he does
have a seizure disorder, his life and yours will be different, but it can
be full.

c) Hook up with a qualified PEDIATRIC neurologist. Be the proverbial
squeaky wheel. Getting new appointments can mean long waits. Put your
Pediatrician to work for you. Call them or go see them in person and firmly
but politely insist that they partner with you and be an advocate for your
child. Ask them to call and see if they can arrange an appointment for you.
Our pediatrician helped in that way.

d) Keep records of EVERYTHING. It will be up to you to keep his medical
history accurate. Also, type up every detail of his symptoms to date ...
include time lines, dates, etc. Keep several copies and keep them updated.
That way, as you meet with different health care professionals, you won't
have to rewrite everything over and over, and you can just hand them the
sheet and walk them through it.

c) Know that this could be a lifelong journey, and that there are many,
many others facing similar paths. You and he are NOT alone!

d) Medications are a hit/miss thing, and all have side effects. What works
for some, don't work for others. When our son started going through
puberty, his symptoms flared up and his medication needs changed
dramatically.

e) Medication relief is not immediate. (This one really bugs me!) It takes
a while to get dosages regulated. This is where the staff of our
neurologist is just outstanding. They stay in touch daily if need be to see
how things are progressing.

f) In addition to medications, there is something called a VNS device that
helps some, but not all patients. My son had this and it has helped, but
not eliminated his situation.

f) Reassure your son that he is not alone. There are many kids facing
similar journeys. Also, his bedroom should be his special place. For a long
time when our guy was little, we moved him into a spare bed in our master
bedroom, but once we got the pain under control (his seizures also
presented with excruciating pain), we moved him back into his room. My son
also would fall out of bed when he would have seizures. His nocturnal
seizures are usually stiffening/posturing/no breathing. He's had what we
call storms where he'll have short seizures one right after the other over
and over. That's when he's had the paralysis. ANYWAY ... we hooked up a
safety rail like toddlers use on the side of his bed. It's obviously not
designed for the 5'7" boy he is (yikes!), but it does work well in that it
keeps him from falling out. All of his friends know he has seizures, so
this is not a big deal to have the safety rail up.

Well, I've thrown a lot of information out at you. I remember when we first
started this journey that I had a lot of despair and utter desperation to
help my child. Please take comfort in that there is support available if
you want it.

Keep us posted! And don't hesitate to ask questions. We've all been there.

Paula







Original Message:
-----------------
From: maid2bear becca541smith@...
Date: Thu, 25 Sep 2008 22:18:23 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] Need answers in Oregon


A year and a half ago our son said his leg hit the wall, got all
stiff and he couldn't catch his breath. He had a strange rash at the
time so we reported this to his doctor. In our ignorance. we thought
he was having growing pains and a panic attack. He was 11 1/2 at the
time. A month and a half ago he was napping on the couch while I was
in the recliner when he suddenly sat up and said " oh my gosh, not
again." His back was to me and I saw his leg bend upwards and start
to shake. I went over to rub out what I thought was a leg cramp. When
he did not respond to me repeatedly asking him where it hurt, I
looked up into his face and his eyes were rolled back, his whole body
was shaking and his lips were turning blue. I called 911 and ran to
the door and screamed for my neighbor to help, he continued talking
to 911 while I tried to perform CPR but when I couldn't open his
mouth I knew he was having a seizure. It lasted 3 minutes and when he
came to, he talked as if he had a stroke. In recalling the events of
the evening before and without getting into the details to save him
embarrassment, I am sure he had one early in the morning also. My
husband and I had him transported to the ER where after discussing
his history they put him on dilatin. A week later he saw a
neurologist, who seems to have the communication skills of a
mushroom, and he changed his medication to keppra. His CT, blood work
and EEG have all come back normal. He has since had an MRI and we had
a follow up with his primary care physician who told us , and I
quote, " the MRI says maybe this and kinda that but altogether
normal." He then told us that it would be okay for our son to sleep
alone in his own room again and stay home alone in the mornings for
the hour and a half that my husband and my shifts overlap. I was not
comfortable with this idea but our son had no memory of his seizuer
and my husband had only seen him coming around so they convinced me
to lighten up. Well, 3 days later he was sleeping in his own room and
I heard a boom. I ran to his room and he had fallen out of his bed,
hit his head. his head was wrapped up in his blankets and he was face
down on the floor. He doesn't thrash during his seizures, he is
incapacitated. Come to find out, he had one earlier in the evening
and talked his self through it in his head. He had a loss of control
in his right leg for the next 5 hours after his seizure. When I
called his doctors, they both said to up his meds to 2000mg a day. No
one wanted to see him and we feel as if we are negotiating this in
the dark. His neurologist has said epilepsy without actually saying
it. I am looking for anyone who has a similar story and can maybe
help us look in the right direction. We are understandably frightened
and trying to keep it from our son. We don't want him to use this as
a crutch and we want him to still be able to have a normal life. We
need information. Thank you for any help you can offer and for
reading a very wordy post.



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