So we have completed the 24hr EEG test of which has confirmed Jaylie
does have Infantile Spasms. What this means is we need to start
treatment for Infantile Spasms (seizures) right away. The treatment we
are going to start is a drug called ACTH. ACTH is a steroid used to
control the seizure activity. One of the major draw backs for ACTH is
it severely cripples the immune system. While Jaylie is on ACTH we can
have absolutely no contact with sickness, viruses, ect which means we
will have to scrub down the house, all her toys and live in seclusion
for a couple of weeks while the medication is administered.
Before we can start the ACTH treatment Jaylie has to have an MRI done
and a tuberculosis test done. We've started the TB (tuberculosis) test
today. The TB test takes 48 hrs to complete, so on Friday we meet with
Jaylie's pediatrician whom will read the TB test. If the TB test goes
well, we will start the ACTH injections on Friday.
ACTH is not a cure for Infantile Spasms but a treatment to stop the
devastating seizures. ACTH just recently (within the last two years)
was FDA approved for Infantile Spasms treatment. ACTH does not work
for everyone. ACTH typically takes 1-4 weeks to stop the spasms
(seizures). If the ACTH is not effective in stopping the spasms we
will need to try other treatment options. We are hopeful and praying
the ACTH will stop these destructive seizures.
Please pray with us that the treatment of the Infantile Spasms Jaylie
is having will be thorough, expedient and effective, bring about a
complete stop to these seizures and a 110% developmental recovery. If
these spasms continue they are likely to cause serious cognitive
development issues (mental retardation).
You can read more about IS (Infantile Spasms) here:
West Syndrome (aka Infantile Spasms)
Here is a National Public article on Infantile Spasms CLICK HERE (Thanks Sis!)
As always, thank you so much for your prayer and support!
Nathan, Kristina and Jaylie