Hello everyone!
Just thought that I would let you all know how things went in Ohio.
We were admitted on Tuesday the 10th of July. Micah was having a
tremendous amount of seizures probably due to travel and the heat
intense. We spoke with our new doctor and then we were sent to the
hospital for a few days of EEG monitoring. The next day we went in for
an eye exam and I believe that the tech thought that Micah is still
trying pretty hard to track, so we think that his vision has not gone
yet. He then had a swallow test and chest X-ray that showed aspiration
into his lungs. Thurs, we went and had a PET scan done and he seized
all the way through. On Friday he had an MRI done and we were told
that the white part of Micah's brain is deteriorating from previous
scans, that is why he is delayed. Saturday the Epilepsy team
dissipated and we were given to a new group of GI specialists who then
put a Ng-tube down Micah's nose for feedings. He seems to tolerate
that pretty well. On Mon. Micah had a skin biopsy done by a doc named
Sheesh. I am still laughing... He also had a PH probe placed in his
Right nostril for the night. Tue, we finished up testing with an Empty
study. Our diagnosis...
Micah has intractable seizures(nothing we didn't know). Most focalized
on the Right side of the brain. Surgery is out of the question.Because
of the deterioration of the white matter of te brain the docs think
that Micah may have a "Very Rare Metabolic Disease" we have heard that
before. I would not be surprised if the skin biopsy came back Normal.
He has Reflux and constipation and was given medication of Reglan,
Pepcid, and Lactulose. He was kept on the same seizure meds of
Dilantin, Klonopin, Topamax and Carnitor for lung function. Because
they think he was refluxing half of the time he seized, putting him on
reflux meds have helped get what we thought to be the "problem" under
much more control. Micah has had about 3 seizures today that I have
seen. Last night when we got home he was making new sounds with his
voice while he was sitting being fed through his Ng-tube. We are so
thankful that we went to Cleveland, it was a very long week but we
think that many things were accomplished. We as parents still think
that Micah has MPEI and that the docs are digging for something they
will not find. We still hope for the Miracle that maybe someday he
will just wake up. ( or maybe we will...)
Thanks for all of your insight, we took so much info to CC about your
children, but many of the Docs just wanted to test Micah and see for
themselves. I am so tired of doing tests on our son just to find out
that he is "Normal" and watch daily as he struggles just to live
through a day. My heart goes out to you who have made it for years
with your little ones! You inspire us to love and keep going. Thank
you for giving your lives for your children and being so open with
your thoughts and kind words, your insight has been a key to opening
our son in ways we never thought possible.
Rachel, (the Mommy)