Kacee is the youngest child in our family; she has one half
sister and four half brothers. She was born in Nashville, TN in December of
1999. Her mother, I was born and raised in Tennessee, while her father was born
and raised in Puerto Rico.
The next October we moved to Florida. Kacee was growing just like any other
child, even walked a bit early. By 10 months she was tearing across the house.
Somewhere around 14 months she started limping, after having 3 other children I
thought she had just twisted her knee on the chair that her and her sister
would spin round and round, because Kacee would fall all the time. After a couple
of days I noticed that her limping was now on the other leg and this puzzled
me. I decided that I was going to take her to the emergency room just to make
sure she had not broken anything. The hospital did not find anything and sent
me home. During this same time Kacee started refusing to drink milk, which I
found very odd because she drank so much.
Within a month Kacee stopped walking all together, I had no idea what to do. I
didn't have medical insurance, could not work because no daycare would keep her
and my husband barely made enough to pay the bills. Even tried to get Medicaid
for my daughter and couldn't but did get it on my other child. The system is
really messed up. I took her to another emergency room where I was made to feel
like I was an idiot. The nurse kept saying some children walk late over and
over. She would not listen to me when I would say it is a problem when she used
to walk. Again they could not find anything wrong. The next day I called a pediatrician
hoping that they might care, since the emergency rooms could do nothing. I received
an appointment two week later, by the time we went Kacee could no longer
straighten her legs. The doctor did not know what was wrong but sent her to an
orthopedic specialist. This appointment was in two months.
Finally, time to take her to the orthopedic doctor. During the waiting period
Kacee's knees became swollen, her knees were larger than mine. She also had begun
to swell in her hands, one finger on the right hand and the thumb on her left.
They took ex-rays of her legs and hands. When the doctor can in and started
looking at the ex-rays he asked had she ever broken her legs, I informed him of
what the two emergency rooms had said and replied no. He showed me that she had
a covering on her legs that only occurs when a bone has been broken, but also
said that this egg shell like covering is covering her entire bone structure.
This is not how things should happen because if a bone is broken it should have
the covering over the spot that was broken. He then told me, I have never seen
anything like this and have no idea what it could be. He asked me to wait while
he discussed her case with another doctor in the office. This doctor told us he
had seen this before and thought it was JRA. They referred me to another
specialist. Waiting another month for an appointment.
This doctor a Rheumatologist, when he saw Kacee and could not believe what he
seeing, he told us to go to this place and they ran a lot of blood test to rule
out many similar illnesses that this could be, like lime disease and leukemia.
He prescribed Naproxen for swelling and pain. In a month we were to come back
and think of any questions we might have.
At the next appointment we were relieved to find out that it was not leukemia,
but she did have JRA. As soon as we asked the first question, he excused
himself and came back telling us we needed to go to a specialist because this
can cause kidney failure. We were stunned and speechless. He sent us home and
had us do more blood test and go to the doctor for her kidneys.
The next appointment, kidneys find. stop giving her the naproxen because it is
building up in her liver. Any questions? We asked him something and again out
of the room he went. I actually believe he was going to look up the answer.
When he came back he did not answer the question, but again scared the heck out
of us with this, "Take her to an Optometrist because this can cause
blindness. Any other questions?" Again so stunned that I could not think
of any of the question I had written down in front of me, at the same time I
was scared to ask.
Orthopedic appointment and we were sent to have braces made in her shoes and
for her legs. I made an appointment at the social security administration.
Finally some help, Kacee was approved for SSI which got her on Medicaid. Went
and was fitted for braces and then back to Rheumatologist, I hated to go, what
was he going to say this time. Again after asking him a question he ran out of
the room, now I know this doctor has no idea what he is doing. Physical Therapy
he said, get you primary doctor to take care of this.
Next the Optometrist, no swelling now but scar tissue present from past
swelling. Will have to keep taking her every month.
For the next couple of years all of these doctors were seen over and over along
with physical therapy. No change at all. Kacee actually bent her braces so that
was not working either. Next was casting the legs. This never happened.
We went to Tennessee and saw family and stopped at some friends house. They
felt so bad for Kacee and anointed her head with oil and prayed for her. We
went home the next day and two days later something amazing happened. Kacee
stood up, her legs were not completely straight but she walked. Now my faith in
God has come to the highest point it ever has, I know it was his grace that
helped my daughter.
Now I still have to go to the rheumatologist and now I know he is a quack, because
he prescribed her naproxen again (let place her back on the same medication
that built up in her liver). Did he even look at her chart at all???? Needless
to say that was the last time I ever went to him. My primary care would not
send her to a different doctor and it was because there was not another one
within 150 mile that accepted my insurance and if they did accept insurance
they did not see children under five. I was back to point A. I had to stop SSI
because they kept sending me money because they under paid me. Then send me a
letter I was over paid, total $4,200 dollars. At this rate I would not receive
social security when I retire, trust me they informed me that they will get it
back.
For years we have struggled with swelling and pain, but gradually it has
decreased. Every now and then she still has some pain but for the most part she
is doing well considering she has not seen a doctor in around eight years.
