4/25/16 When something is wrong with
your child, it is the worst feeling. As a parent you want the best for your
children. You would do most anything for them and want to help them. When they
hurt, you hurt. When they are sad, you are sad. You want to take their pain
away and make them well. Health is something we all take for granted. There are
so many illnesses, ailments, and diseases out there. There are a lot of
unknowns with Jayden right now. 10 days ago she went to the doctor for joint
pain. The doctor ordered 7 vials of blood, a urine test, and x-rays. Her pain
is not normal wear and tear, it is not growing pains, and it is not going away.
She has had the pain since being on penicillin since the first of April. I
thought it was a reaction to that. The doctor is stating it is more likely
caused from a complication in having a strep infection. The most bizarre part
is she was tested for strep and it came back negative, plus given penicillin
just to be safe. Jayden’s pain is the worst in the mornings after she has been
still and at night when sleeping. It has been in her knees and has moved to her
hips.
Ironically my friend Michelle and I are
going through this with our daughters together. Makenna has been having
problems for several months. She has had two bouts of mono and keeps getting
sick. She has different symptoms and problems.She has been all over getting
tests too. Jayden and Makenna have each other to go through this together as do
Michelle and I.
This week was kind of a blur of doctors.
Monday we saw Dr. Glawe to go over the test results. He walked in the room and frightened
us by saying,”ladies, we need to go over some family history.” He is concerned
about rheumatoid arthritis. Based on the test results today the doctor wants
her to see a specialist. The only pediatric specialists in Iowa are Des Moines
and Iowa City. Des Moines has a 3 month waiting list and Iowa City 6 months. I
did not like the idea at all. Once I got home from Jayden’s appointment, I got
on the internet to find a rheumatologist that could get her in sooner. The
first place I googled was in Omaha Nebraska. I am working on making an
appointment.
Tuesday we went back to Dr. G for a second
blood draw in order to compare the strep tests and to check Jayden’s heart that
she says flutters sometimes. The nurse had a hard time with her veins again.
They poked her arm and jabbed around before getting assistance and using a
butterfly needle and still having trouble. Jayden’s arm really hurt after that.
In the meantime, Luke came down with a fever and sore throat. I did not want to
mess around and wanted to check him for strep. On Wed morning I took Luke to
his doctor in Ames and tried to get Jayden in at the same time. The
receptionist and nurse would not allow it. Once there with Luke, Dr. Halbur
said she would be glad to see Jayden. Luke tested negative for strep. So, back
at home, I switched kids and made a second trip back to Ames with Jayden. Dr.
Halbur was very optimistic with the results and wanted to run a whole list of
new tests for possible causes. I am staying positive in hopes that is just
related to a post infection and she will just get over it. I am glad we chose
to see Halbur and we will see what we need to do next. So, once again Jayden
got stuck in the arm for more blood. She is starting to feel like a pin
cushion.
It was a process getting medical records
transferred and an appointment made in Omaha, but I was so very impressed with
them. Omaha is on the ball, polite, and demanding with the clinics. They
contacted the doctors’ offices and got things rolling. When I called Ames to
get records sent they said it could take up to a week. Omaha made sure it
happened on that day. They got Ogden’s info about an hour after I got off the
phone. I was impressed. Then I got the call to make the appointment and actually
had to tell them to wait a week until we get all the other labs back. We made
the appointment for May 9. In the meantime, the Iowa clinic called and said
they could get her in for the first appointment in August. I cannot believe
that! Sometimes you as a parent have to step in and be your child’s advocate
and make things happen.
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