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Isabelle
was born in July 1998, just four days short of our first wedding
anniversary. I was ecstatic I had the little girl I had always
dreamed of. She was beautiful, as all babies are. I tried to
breast feed exclusively but failed in my attempts. I would find
out later that the hospital had given Isa, as we call her, both
bottled sugar water and formula because of low blood sugar. We were
never told and went home thinking we had a perfectly healthy baby.
At Isa's
two-week check-up she had failed to gain weight. The doctor told
me to supplement with formula. We did and although she seemed to
throw up more than she swallowed, she very slowly put on weight.
When we asked the doctor about her slow weight gain he just told
us that since she was still on the "chart" she was fine. We
asked about her constant vomiting and were told that she probably
had reflux. We asked about her episodes when she would shake after
waking from sleep before she would eat. He said we were probably
just over reacting.
Our doctor,
tired of what he called our needless worry, did refer us to see
a pediatrician since he was a general practitioner. At seven-months-old,
we were told by the pediatrician that our daughter was failing
to gain weight adequately because I was not feeding her properly.
Frustrated I talked to a friend's mom who told me to take her to
the emergency room at an Omaha hospital and tell them we wanted
some answers.
Our answers
came in the form of a gastrointestinal specialist who told us
that Isa had reflux. They put her on a very expensive formula
and said see you in six months. At that time they also discovered
that Isa had C-Dificile, an intestinal infection caused by being
on antibiotics in the past. We assumed that was our answer
to all our questions and went on with our lives. We tried not to
worry because we had what we thought was our answer.
Shortly before
Easter of 1999, Isa began vomiting. Not that vomiting was abnormal
for her but we just couldn't seem to get her to stop. I took her
to the emergency room and they gave her a suppository and sent her
home. Although they did run blood tests they failed to test her
blood sugar at that time. The next day she was still vomiting intermittently
so we took her to the doctor. Since it was our doctor's day off
we saw another doctor who told us that she wasn't dehydrated enough
yet to merit a hospital stay. He said to take her home and watch
her for the rest of the day. If she wasn't better by 4pm we were
to call and he would put her in the hospital to be dehydrated using
IV's. We waited anxiously for 4 to roll around and when we called
him, he hesitated but then finally agreed to admit her. When we
got to the hospital admissions the doctor's office had not yet called
them. We were probably in the admit area for over thirty minutes
before they were finally able to get a hold of the doctor and get
admit orders. Finally she was in the hospital and they would
make her better, or so I thought.
Once we got
to the room the nurses checked us in, gave Isa a hospital gown and
left. Lab came about an hour later and took blood. We would only
find out later that they once again failed to test her blood
sugar. About two hours later the nurses came back and gave us
a bottle of watered down Pedialyte to feed her. Finally at 5am the
next morning they decided that she was ready for an IV. Because
she was too dehydrated by that time it took them over 22 attempts
to get the IV in. When they finally had it in it was in her
ankle and they wedged her foot to a board to keep her ankle straight.
She was very lethargic by that time and mainly just slept in mine,
or my husband's arms. She stayed at that hospital until Thursday.
I mentioned to the nurse that I thought that although she was able
to keep some formula down she still seemed awful sick. The nurse
agreed and called the doctor who I talked to on the phone. He
told me that I was over reacting and that she was fine to go home.
So, they sent her home even after she threw up on the nurse on
the way out the door.
By the next
morning she was so weak and barely able to suck on a bottle. I
talked to our doctor's nurse and she told me, "don't worry so much,
these things just take time." At noon I talked to the doctor
who repeated the same message. At 4pm my husband called them
and was told that we were probably stressing her out, since
she was better in the hospital then she was at home. The nurse and
doctor both recommended that we bring her to the hospital and let
the nurses care for her for the night so we could go home and get
some sleep. Of course I couldn't leave my baby so I kept her at
home. By the next morning my beautiful little girl was unable
to move on her own. She just lied wherever you put her. My husband
and I knew that there was something seriously wrong so we put her
in the car and drove the three hours to the hospital.
When we got
there, they rushed her right in and did lab before we even saw a
doctor. When they checked her blood sugar they found it to be
36 and within minutes her emergency room was flooded with nurses
trying to get an IV in. We remained in the hospital for five days
where they continually flooded her with glucose. By the end of
the five days she was herself again. We thought that our
fight was over. Only later did we realize how lucky we were
she didn't die at that time.
After this
episode we went back to our normal lives. I didn't switch doctors
at that time because I thought that maybe now he would finally listen
to me, which he did for the first 6 months or so. The only thing
he didn't listen to me about was her blood sugar. I asked him about
it having gone so low and he told me that it was normal for a sick
child to have a low blood sugar. We were gullible enough that we
listened. The only problem was that Isa's problems still continued.
We kept going to our GI doctor at the hospital who told us that
she was allergic to milk so we took her off all milk products. When
this didn't seem to solve the problems I spoke with the doctor again
and told him I wanted answers. He agreed to admit her to
the hospital for some tests. Since she was scheduled to have her
second set of ear tubes put in and her adenoids taken out the next
week he set it up to follow that.
I was so
excited because the G.I doctor had told us that she wouldn't go
home until they had an answer. We were finally going to learn what
was wrong with our beautiful little girl. After Isa's surgery she
was very ill. Although they didn't test it I am sure that her
blood sugar was probably pretty low from not eating all day.
Once we finally got some food in her she finally started to perk
up. The GI doctor that had set up the hospital stay transferred
us over to the other GI doctor. He ran GI tests for 1 day and then
came to talk to us. All her tests were normal so she should go home.
I had thought we would get answers. But he told us that there
was nothing wrong with her and since our insurance didn't want to
pay for a hospital stay after an adnoidectomy we should go home.
I cried all night. I was so frustrated that no one seemed to
care. I thought maybe he was right and it was all in my head.
Maybe I had that psychiatric illness where you put illnesses on
your children. I didn't know what to do. The one good thing was
that while I was being questioned I mentioned the low blood sugar
and the shakiness that she would get after sleeping. We were referred
over to an endocrinologist.
About two
weeks after that hospital stay, Isa woke up unable to stay awake.
I had a glucometer at home so I checked her sugar and it was 32.
I called the endocrinologist who told us to give her juice and honey.
We did and her sugar went up to 235. We were at a loss. A few days
later Isa, who had been suffering from diarrhea, had really high
sugars in the 200s. When I called the doctor she told me to get
to Omaha right away. When she was admitted to the hospital the
admitting diagnosis was "early onset diabetes." We were sad
that she had diabetes but also glad that we finally had the answer
we had so desperately been searching for. When they rechecked
her blood sugar in the hospital it had gone down to 100. So, the
diagnosis was wrong. Our endocrinologist contacted a metabolic
specialist who suggested that she be tested for MCAD. She was
dismissed a couple of days later and we waited for the results.
The
results came back, negative. The test that they had done had
specifically tested for MCAD and not for any other FODs.
So we were once again without our answer. We decided to forget it
and go on with life as normal. We kept her glucometer with us at
all times to test her just in case we thought that she needed it.
It was in August that we were coming back from vacation in Chicago
~ Isa became very ill and started throwing up almost overnight.
I tested her sugar and it was 40. I tried our usual treatments but
they failed so I called her endocrinologist who told me to get her
to the hospital immediately. When we got to the hospital, I told
them that she had hypoglycemia and hyperglycemia both but not diabetes.
They tested her sugar again and it was 91. I thought that I was
going crazy. They decided to wait on putting an IV in since her
sugar was normal. About an hour later her sugar dropped so low
that she couldn't wake up so they finally put in an IV of glucose.
She became better almost immediately.
After this
emergency trip I called our endocrinologist who said that they
better do a fasting study. When we did the study she was fine
for the first few hours. After about 13 hours of being without food
her sugar dropped to the low 40's. They gave her an injection to
trigger her body to release its stored sugar. It didn't work and
her blood sugar went down into the 20s. She couldn't stay awake
on her own. The nurse had us pulling her ear lobe, slapping her,
yelling at her, even shaking a tambourine in her face to keep her
awake. It was one of the scariest moments of my life. Finally they
gave her an IV glucose solution and her blood sugar went up over
300. During the day they had done a skin biopsy. We left
the office feeling shaken but grateful that someone else had
finally seen that I wasn't making this all up.
About 2 weeks
after her fasting study the results from her biopsy came back.
She had a fatty acid oxidation defect, but it is Unclassified
at this time. As I look back at all the things that she had
been troubled with I see that they can be directly related to her
disorder. I am grateful to finally know what made my baby so sick.
I feel a little more in control. I have also learned not to question
myself. Isa still has low blood sugars on occasion but she is
doing much better. She is finally putting on weight at a steady
rate. As we look back we realize that there is no logical reason
why she isn't dead or suffering from severe brain damage. We
look at her every day and remind ourselves that she is truly a miracle
from God!
I know now
that other families aren't as lucky as we are. I know now that other
families have lost their beautiful children because no one would
believe them. My advice is simply don't give up. Be persistent.
And never, ever let a doctor or anyone tell you that you are over
reacting. Always, always trust your instincts!
Sharon Fisher,
mom to Isabelle, age 2 (Unclassified FOD)
Hastings, NE
tyandsharon@hotmail.com
2005
Fisher Family Update
Many
things have changed since I first told our story. Isabelle
is now 7 and she has 2 siblings ~ Rebekah is 4 and Jakob is
2. Both Rebekah and Jakob have the same unspecified disorder
that Isabelle has although we have been given the label Mitochondrial
Myopathy to use since in many cases labels help.
We
have moved to Fort Worth, Texas to be closer to better medical care
then we were able to get in Nebraska. In January of 2003 we
chose to have a g-button placed in both Rebekah and Isabelle and
it changed their lives. We no longer struggled with the nighttime
hypoglycemia as we had in the past. Since they were able to
get proper nutrition they began to grow like any healthy child.
But most importantly illness now doesn't always require the hospital
and IV as it had in the past. However, in August of 2003 when
our baby, Jakob, was 7-months we realized that he was heading
down the same path as his oldest sister with delayed development
and slow weight gain. So we decided to get him a g-button
as it had done so much for Rebekah and Isabelle. Unfortunately
the doctors and insurance companies did not agree. While
we were fighting with them I was also charged with making my
children ill to get money and attention. The charges were
later labeled 'unable to determine.'
During
this time we watched as our beautiful baby boy was wasting away.
This was probably one of the lowest points of my life. Finally,
with the help of some great doctors, Jakob received a g-button at
the age of 14-months. Today Jakob looks and acts like any
healthy 2-year-old. Of course all three children have to be
on nighttime feedings through the g-button to control the hypoglycemia
and we have had a few close calls when tubes came undone.
But because we knew what to watch for we were able to catch the lows
before any damage was done.
On
August 10, 2005 Isabelle underwent a Nissen fundoplication. We
had been putting it off since she was a baby but no longer could.
During the surgery doctors discovered that her muscle was so weak
that it had stretched out to be twice as large as it should
be. She is doing well now and hasn't thrown-up once since
the surgery. I can't say that our lives are perfect by
any means. When the kids get sick, they get really sick.
And, of course, we still have to use special pediatric strollers
for going anywhere of distance. But thanks to amazing
parents like those you read about on the FOD site (that blazed
the way for all of us to follow), and some wonderful doctors who
don't think that every word out of your mouth is just paranoia,
my kids are living what I consider a blessed life.
Sharon
Fisher
cookninthekitchen@yahoo.com
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