infant epilepsy and developmental delays Posted: 03-24-08 17:45pm
Can anyone relate or provide postive
outcomes?
My son is seven and a half months old. He
began having siezures at four months, and
has had them ever since. He started on
phenobarb which controlled them for a bit,
over time they started up and medicine was
increased to try and control them. He got
to a point where he was having 20-30 a day
and had an eight day hospital stay to try
and figure out what was causing them. He
is now on phenobarb and topmax and it
seems to be working. He has had a normal
MRI and tons of blood work that has come
back normal. He has had three abnormal
eegs. My son also has significant global
delays. He looks very normal but does not
smile much, play with toys, or do much but
lay. He has physical therapy in place
weekly to help with muscle contol. I am
devestated and so scared about what his
future holds. Can anyone relate? Thank
you for taking the time to read this!
|
jolee10
New User, Becoming EHEALTHy
Joined: 04 Apr 2008 Posts: 5
positive outcomes Posted: 04-07-08 20:12pm
Hi I know this is a scary time for parents
,we have a similar story to yours. My best
advice is to get involved (if your not
already) with early intervention as much
as possible. Our daughter is 41/2 now and
this has made a big difference to her,and
the whole family. I am always amazed at
how much these children can learn ,we read
a lot to her show her pics ,play with her
and play a lot of hi five dvds when we
need a break, they love the colour and the
music. I am happy to talk some more in a
private e-mail if you like and share more
positive outcomes with you.
|
bbbecki78
New User, Becoming EHEALTHy
Joined: 28 Jan 2008 Posts: 5
thank you Posted: 04-08-08 07:46am
thank you for your reply. If you want to
share stories, pm me.
|
mommy_25
New User, Becoming EHEALTHy
Joined: 06 May 2008 Posts: 1
Posted: 05-06-08 14:57pm
Hello, my daughter started having seizures
when she was 5 months old. She ended up in
the hospital and after testing was put on
Phenobarbital.
The seizures were under control but she
didn't seem to have a personality anymore.
She was delayed in everything. This past
October ( four months before her second
birthday) we had her fully weaned off the
medication. I had , had a long talk with
her doctor about how I thought the
Phenobarb was effecting her and since she
hadn't seizured( that I know of) since she
had been on meds he let us take her off.
She hasn't seizured since but is still
very delayed.I definately agree with
Jolee, that early intervention makes a
huge difference. My daughter has been
seeing the CARE ladies (physical,speech,
and general ) since she was little and
they have helped us alot.
Taylor is 27 months now and still doesn't
talk. She'll very randomly say a word, but
not often. She has been making small
strides developmentally since we took her
off the phenobarb. She started walking not
long after she was weaned and socializing
a little more( mostly through sign and
play) . I notice personality in her.
We are getting another Eeg and an MRI done
soon.
There are posts on another epilepsy
message board talking about the effects of
phenobarb and epilepsy on infants and
young children.
I'm sure you already have but I would talk
to your pediatrician about your concerns.
I know how hard it can be to watch your
childs development and stress about why
they aren't hitting their milestones when
they should. Although I'm lucky that my
daughter hasn't seizured since she was a
baby I'm still dealing with the after
effects, trying to help her catch up and
wondering if it's going to be long term or
if she is going to catch up and eventually
be where she should be developmentally.
Only time will tell.
|
tilley
New User, Becoming EHEALTHy
Joined: 15 May 2008 Posts: 1
siezures Posted: 05-15-08 06:56am
Hi my son is now 19 months and still
having siezures, on Kappra and Topromax,
so delayed, doesn't hold toy's, no head
control, and has very limited sight (he
sees light and dark). we worry to bits
about his future, all MRI's normal 6
irregular eeg's, great pregnancy? He's so
beautiful too.
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