Wednesday, May 22, 2013
Our
little Hayden has been going through so much this past week. His blood
work shows his Titers (anti body level) is 5 times the level it should
be. This makes us closer to the diagnosis of PANDAS, but the doctors
are still worried that it could be something else. Hayden's pain level
is horrible, and that is not "usual" for PANDAS kids to have this
extreme amount of pain. They currently have him
on eight different medications and he is unable to go to school for two
or three weeks while he goes through treatments because his immune
level is down. We had to cancel his birthday party last weekend because
the doctors asked us to try to keep him from germs as much as possible.
Hayden is suffering, the medications make him moody and grouchy, and
overall feel yucky. So far, we have not been able to get a handle on
the pain for more than an hour or two before his whole body starts
hurting. To watch him go through this is horrible, and our hearts are
breaking. Yesterday was his 4th birthday, and we were at the
Children's hospital see yet another neurologist. I feel they are deeply
concerned, and they explained to Scott and I that they do not have the
answer yet. They talked to us more about IVIG but they don't want to
put him through that until they know for sure what they are fighting.
We are now pushing for IVIG ASAP, because he is in so much pain, at this
point what can we lose. We don't care what the cost is. Our hope is
that we can be admitted to the hospital and start this next week or
sooner. We have an amazing Pediatrician who calls me at home late at
night to check on him. We have so much support from family and friends.
His preschool drove all the kids to our house to give Hayden balloons,
gifts and to sing Happy Birthday to him. I could not stop crying. A
extra special thank you to our parents, Margaret Norman, Liz Whitmore, Mi Escuelita , Ruby Harrington, Susan Gautreaux, Amiee Gautreaux, and Clare Gautreaux. Thank you for all the prayers & love....more than you know.
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