Isabelle has been slowly regressing since late October,
early November 2013. It became very apparent
by the end of January of this year that she has made NO progress since
Christmas. She was holding her head up
with very few reminders. She was taking
good strong steps in her gait trainer.
Picking up a new word every 1-2 weeks.
Eating by mouth twice a day in addition to her g-tube feeds. Picking up & putting back large puzzle
pieces. Overall a happy child!
Though it hasn’t been a total immediate occurrence. Sometimes she was off for a day or two and then
she would go back to her normal self for several days. Her seizures were flaring up some during that
time but we have gotten them back under control. She has had NO major medicine changes, the
only adjust that was made was reversed because it was causing increases in her
seizure activity (blood work showed one of her levels was low so doctor
adjusted medicine too much & we talked about it and decreased it back down). Unexplained crying and fussiness; she is
normally a very happy child. By the end
of January she was refusing to swallow any food that you put in her mouth &
it became a safety concern so she is being strictly tube feed now. Most days she has little to moderate head
control, there are times when she will hold her head up like a champ but it’s
not but for a few hours now & then.
Her steps are more like drags of her feet, she won’t support herself up
in her gait trainer she leans forward or slouches.
I started at the basic level – general pediatrician Dr. G
agreed something was going on. He did
blood work to rule out any basic infections, thyroid issues, etc. Her throat, ears, nose all looked good. We have had to get at new GI &
Neurosurgeon for more proactive care (our others wouldn’t see her unless there
was an issue and wouldn’t listen to me).
The new GI doctor Dr. F felt like her reflux was causing
some of her issues so he changed her from Zantac & Prevacid and OH BOY!!! we
are still in Insurance Limbo on that one.
Luckily our pharmacist told me what dosage and how to split & crush
the Prevacid to put through her g-tube.
She has an EDG scheduled for next week to rule out any abnormal issues
with her nissen, stomach, esophagus, etc. with a swallow study scheduled for a
couple of weeks later.
Our new neurosurgeon,
Dr. R immediately sent her for a new CT scan & shunt series since
the last one done by her old neurosurgeon was in 2010 and the most recent MRI
we had was from November of 2012 which her new neurologist ordered. He reviewed all of her info and went over the
2012 MRI & compared it to the new CT & shunt series. The determination from the new scans is that
her shunt it intact, appears to be working, the fluid on the outside of her brain
in stable & unchanged from 11-2012 but her ventricle in just slightly
enlarged from her 11-2012 MRI though he doesn’t feel like it would be enough to
warrant the changes. He wanted to see if
it might be a seizure/medicine issue.
And on to our regularly scheduled neurologist appointment
the next week that didn’t lead to any answers but did confirm what we’ve been
seeing. Because Dr. W had documented in
November, when he saw Isabelle, how well
she was taking steps and supporting herself with minimal support from someone
else when she was standing. He’s
suggestion was to do blood work to see if labs showed anything; if nothing
showed there we would need to go back to neurosurgeon for possible ICP
monitoring (IntraCranial Pressure monitoring for the none hydro peeps). Neurologist also suggested getting her vision
checked which could determine a quick answer if she was experiencing any
swelling. Neurologist blood work came back good showed
no signs of anything. Though it did tell
us we could adjust her meds but we know that just triggers her to have more
seizures right now so we are leaving that alone for the time being until she
starts having breakthrough seizures with no known trigger. So on to the next doctor to check off the
list….
Slacker Mom here hadn’t made her eye appointment visit last
year because it was CHAOS at the time. I
carried Isabelle for her eye appointment this past Friday and it was determined
that there is no swelling. But we did
finally get a clear picture of what Isabelle’s vision is or I should say isn’t. Both of Isabelle’s eyes are affected by: optic nerve atrophy, near-sighted, astigmatism
& cortical vision impairment. She
still has her strabismus but surgery would be pointless because she doesn’t use
her eyes enough for the surgery to take.
Glasses or correction is also a pointless effort because of all the
issues she has going on. Dr. B said that
for all purposes Isabelle should be considered legally blind. So there’s that….
So now I’ve got to call Dr. R’s and see what his suggestion
is and go from there. It’s great news that
nothing is showing up in the blood work BUT that only means that we have to dig
deeper & put Isabelle through that much more.
