It is surgically implanted
just below the rib cage and a cather is threaded
under the skin, around the side and then into the
spine.
The pump is then set to administer in
small increments generally at hourly intervals.
Because the amounts are
administered directly to
the fluid surrounding the spinal cord the dosage is
much lower than taking oral Baclofen and does
not cause the same side effects it would if taken orally.
I am told that the 106 micrograms that Evan is receiving is about equal to 1/100th of a teaspoon. (The reservoir in the pump holds about 3 tablespoons). Some patients do need as much 1000 micrograms though.
An unexpected and POSITIVE side effect that Evan has had from the pump is that she is sleeping through the night for the first time in 4 years!!!!!!!!
Evan was facing the liklihood of orthopedic surgery for her adductors, so we chose to try this surgery first and her adductors have become much more loose.
The pump can be programmed by placing a "mouse
looking" device over the stomach and pressing a
button.
The doctor pushes a button on the mouse
for the interrogation and a laptop type of computer
gives the information regarding the amount of
Baclofen being dosed and the amount remaining
in the pump.
I think it even gives the name of
the patient with the pump.
The doctor then types
in new dosage information (if any changes are
being made) and then places the mouse over the
pump, presses another button and the pump is
programmed.
Refills are given by needle injection, but a numbing cream (EMLA) is used and the patient doesn't mind the needle.
Evan's dosage is at approximately 4 mcg per hour at night and 4 and a half mcg and hour in the day time. In the beginning we had her daytime dose around 6 micrograms an hour and she was too floppy. We had the pump reprogrammed and are pleased with the results. We expect to do lots of rehab therapy, build strength and increase the pump in small increments and then repeat the process. I hope that in about a year we can see some very good progress.
She has a much greater comfort level than she has ever known. So if nothing else came, this would has been a great outcome.
Patients with quadripledgia, high muscle tone are the general candidates for
the surgery. They are
given a trial injection into the spine to see if the
medication will work for them. This way you can
know how the medication will work before ever
having the surgery.
Evan received a single 50 microgram Bolus dose and her
legs were like
noodles. She then became eligble for the surgery.
A child should be about 4 years old and 30
pounds. Any smaller and the pump doesn't fit so
well. We are told that the pump should be
replaced in about 6 years because of the battery.
She is not supposed to be in pressured areas (such as long airplane flights or Hyperbaric treatments) as the pressure can affect the function of the pump. Magnets, antennas and high heat from hot tub use can interfere with its function as well.
She will also set off metal detectors!
It is just so thrilling to actually get some REAL intervention. We have worked at therapy to the point of exhaustion with some results. We hope now that our work can actually be more productive.
Sincerely,
Joan