So now we are back at CHOC hospital
and feeling better, the Endocrinology department was great, they jumped right
on it. The doctors started our kids on
Glucometer testing 3 times a day to try and get some baseline information on their
sugar issues. But this was not finding
the issue and they decided to place a monitor on their hips that would stay in
them for 5 days to track their sugar levels moment by moment. This was hard my wife was the one to take the
kids to the doctors to have the monitor placed.
The kids did not do well with this it was a very painful procedure and
they both started throwing up and were in tears. But the monitors were on for 5 days, after
that they could tell us that they were not diabetic but that there was something
else going on the Endocrinology department could not figure out. So we were then referred to Metabology to fallow up with the kids situation.
Things went pretty smooth getting
to Metibology and they also saw the need to test further to find the causes of
the sugar level issues. By getting to
see the new doctors we were able to find a great method of feeding our kids
every 2 hours with high Proteins and fibers to help the kids through their day. They also got us set up with one of the best
medications, Cornstarch with a little bit of juice. Sounds crazy but what they
had found with all there testing was this, they do not slowdown in their sleep. For a normal person who sleeps at night there
bodies go into fasting mode, slowing down and repairing itself, as well as
conserving sugars. Our kids don’t they
sometimes speed up and do to this lack the ability to repair at night as well
as burn to much sugar from time to time.
This is good,, but still not a diagnosis, so back to the testing. This time the find that my son is low in an enzyme
called Levocarnitine, and luck us there is a medicine for this. After going round and round with insurance we
were able to finally get this medication and once my son starts it we see his
whole world open up. He is comes to us
about 6 weeks later and say’s I can hear better, everything is brighter and I
understand what is going on in school now.
Oh my goodness, this is so cool, now we try it with my daughter, but the
medication does not work the same for her, so we have to take her off.
This happened just in time for us
to have more issues with the medication; surprise the insurance decided they
would not cover it. We never told our
insurance that we may one day need heart medication. This Levocarnitine, I guess is used for heart
issues, so please tell me how are we to know that one day in our early years
that someone let alone our kids would need heart medication. So they refuse and we are left to look for
other methods, which turn out to be paying for it out of pocket, $300 a
month. We are screwed we are going to
need to bit the bullet and just buy it and so we do, and now we are sinking
deeper in debt due to doctors’ visits, medications and now there new diet. And guess what we still do not have a
diagnosis, which means no help from anyone we are just left to more testing and
more doctor visits, medications, and
more stress for us……….
I will continue as soon as I can as of now we are working on some fun raisers for that Micro Ray Test that we have been ask to do and the isurance refuses to cover, we will keep everyone posted in this. Plus we have a new method of donation, we still except PayPal, but now there is a link at the top right corner "Gofundme"
Thanks
