After my last post, Peyton continued to
have 4 – 5 seizures a day. Last week was
quite eventful. She was a little crabby
last weekend and I just attributed it to the seizure increase, because that
would make anyone crabby. Last Monday
morning I was at work and Peyton’s nurse called to tell me Peyton was screaming
at the top of her lungs and nothing would calm her. Ed was close by so he went back home and he
couldn’t calm her either. The screaming
continued till I got home that evening and then every time she would nod off to
sleep, she would jerk herself awake and start screaming again – I’m talking
loud blood curdling horror movie screams.
Needless to say, no one got any sleep.
On Tuesday, we took her in to see the pediatrician and she had a sore throat
and a fever. No strep, just viral. As thankful as we were for the source of her
discomfort, there wasn’t much we could do for her except Tylenol. She screamed on and off until Wednesday
afternoon and finally she calmed down and is almost back to her normal self,
just still running a low grade fever in the mornings.
Peyton had an appointment with the
dietitian last week and we have made some adjustments to her diet. Her BMI is too high and her weight is
outpacing her height. Hopefully, the
adjustments will help with the seizures and we will get some long seizure free stretches
again.
We have been seeing some subtle
movements while she is falling asleep & waking up. She will tense up and then release, tense up
then release. This is reminiscent of Infantile
Spasms (although much more subtle than what she had in the beginning) so I
contacted Dr. Tennison (her neurologist) yesterday. I emailed a video of these strange
movements. He watched it and agreed the
movements were really subtle, but something we need to keep an eye on. For now, we are increasing her Vitamin B-6 to
see if this will do anything helpful.
Sometimes, it feels like we are just shooting in the dark trying to find
solutions. Regardless, we will try this
and if things continue then we will contact him again and discuss other options
(not sure what these options are, but determined not to focus on that till we
give this a week or two to see if things settle down). If you haven’t read my past posts and don’t
know what Infantile Spasms are, you can Google it and be as horrified as we are
that she might be having them again.
There was a time back when all the seizures started that she was
having Infantile Spasms but they were quickly controlled with Prednisolone and
we haven’t seen them since and hope to never ever see them again. Please say a prayer that this isn’t what is
going on. All Seizures are horrible, but these are especially horrible.
Peyton has a stander and she is in it
for about an hour 5 – 6 days a week.
There is some concern over her ankles and feet so we went this week and had
her fitted for AFO’s (Ankle Foot Orthosis)
These will help her stand and make progress towards walking
eventually. It was cool to watch them
make the casts for the AFO’s and she did so good!! I am excited about getting the AFO’s because
I am all for anything that will help her progress and develop.
She has a new favorite toy – it’s a lady
bug toy with crinkly wings and she LOVES it.
It is the first time we have seen her use both hands to play with
anything. She even falls asleep at night
with it tucked under her little arm. It
is the sweetest thing. She is still
giving us smiles daily and we are hoping for some giggles soon!!
