When I Learned to Trust My Instincts...
I first began to suspect something was different about Thea
when I started to take her to daycare. She
just seemed less active, less aware, and more babyish than the other toddlers. She wasn’t walking at 18 months. I heard so many reassuring stories about kids
walking late and it turning out fine but something still didn’t quite feel
right. I remember walking into daycare
and one of the moms asking her daughter if she needed to go potty before she
left. I was shocked. Thea was not even able to communicate with me
let alone start potty training. I asked
the teacher about it and she said that the child was just an early
learner. I smiled at the teacher,
thanked her, and sat in my car. As soon
as I closed the door, I began sobbing.
Around this time, Thea also began laying down with her ear
to the floor. My husband and I studied
her as she lay there. We thought maybe
she had an ear infection but she was so quiet about it. Shouldn’t she be crying in pain? Eventually, she would get up and start playing
again so we dismissed it but something inside me felt uneasy.
Thea laying with her head on the floor. |
Then, one day Thea was sitting and playing quietly when
suddenly she fell backward and hit her head on the wood floor with a loud bang. She began to cry and we held her and
comforted her until she recovered. Then
we put her on the floor again and she began to play. We resumed our conversation when suddenly she
fell backwards and hit her head again.
My husband and I looked at each other in alarm. What was going on? I tried to calm both of us as I kissed her
tears away. It took her a long time to
recover and play again. Then, with a
loud thunk, her head hit the floor again.
This time we rushed Thea to the ER.
I explained the strange behavior.
The doctor reassured me that kids fall all of the time. Not wanting to appear difficult, I reminded
him that Thea had been sitting when she had suddenly lost control and fallen
backwards. I’m a teacher and I
understand that maybe kids would do weird things one or two times but three
times seemed odd, especially when she got really upset and hurt each time. Still he insisted that everything was fine. He sees kids hitting their head all of the
time and he knew how scary it could be for parents but it happens all of the
time. We nodded and took her home.
The next day, Thea was acting so tired and listless that it
was becoming more alarming. I was sure
that something was off and I wanted to talk to another doctor. We took her back to the ER and the new doctor
took us more seriously. He did an MRI
scan. He showed us the scan and told us
that everything appeared normal. Feeling
foolish, we again returned home.
Over the next few months, Thea began to have more frequent periods
of lethargy. She would coast along the
couch trying to walk when she would lose muscle control and sink to the floor. She would drool a bit and not be able to move
much. We rushed her to the ER several
times but by the time we got there, everything would return to normal. They would send us home and we would feel
embarrassed. We would doubt what we
saw. Time would go by and we would think
that we had imagined things out of fear or made them bigger in our mind.
Then, one day Thea’s preschool teacher called us. She said that Thea just didn’t seem
right. She appeared exhausted, was unable
to move much, and was drooling. At that
point, we had doubted ourselves so much that we never told the preschool about
her strange behaviors. Once they saw it
too, we felt more certain that something was going on.
We took her to the hospital again and gave them the school’s
report. This time, they referred us to a
neurologist and he began treating these episodes as seizures. I was relieved. Finally, an explanation. I was sad that my child would have epilepsy
but it I was glad that they could control it with medication. Everything would be fine. We would figure this out.
We started the medication with relief but shortly after
starting it, it turned our world upside down.
Thea became even more tired and now she was angry and tearful. She refused to cooperate with the slightest
requests and would hang on me all day and cry.
Her episodic lethargy seemed to increase, especially when she had a
cold. Every time I called to report an
episode, the neurologist adjusted her medication but it never stopped the
episodes from coming. I was miserable
and frustrated. The doctor asked me to
video the episodes and he kept trying to adjust the medication. He said he wasn’t sure that this was
seizures. I was beginning to have that
nagging feeling again that something wasn’t right. I asked him if we could just stop the seizure
meds but he said it would be dangerous if she was indeed having seizures. Seizures could do permanent damage.
Then one day, after an increased dose of her seizure
medicine Thea had a bad episode of lethargy.
She could hardly open her eyes or move.
I called the neurologist on duty and he told me she was likely having
another seizure and I needed to give her a big dose of the medication on top of
the one I had just given her. I argued
that it seemed like the medication was making her worse. He insisted that I give her a big dose now
and again in 4 hours. I gave her the big
dose and she got worse. I did not give
her the next dose. I hated not following
the doctor’s advice but I just couldn’t make myself give her any more
medicine. I let the large dose wear off
and I gave her a low dose. She got
better.
I felt uneasy about the seizure medicine and unsure of what
to do. I told her regular neurologist
what I had done and he agreed to go back to the lower dosage. I fantasized about taking her off of the meds
but I was afraid that she needed them.
Months went by. One
morning Tyson and I woke up in surprise.
It was 8:00 in the morning. We
had slept in. Thea usually woke us up
between 5 and 6. At first, we were happy
to have had such great rest but gradually we began to worry. I had hired a babysitter to entertain Thea for
the day so I could get some work done around the house. All Thea wanted to do after we had roused her
was lay in the babysitter’s arms. She
wouldn’t eat and she wouldn’t drink. I
began to feel panicky. I sent the
babysitter home. Tyson and I agreed to
go to the ER but neither of us felt much hope that they would be able to help
her. I dreaded being told to increase
her dose of seizure medicine and being sent home again. Tyson decided to take a shower first. As he was getting ready I began to feel a
wave of dread and fear. I wanted him to
hurry and get out of the shower. I
wanted to call 911. But I sat there
taking slow deep breaths as I waited for him to finish his shower.
Finally, we were ready, and we drove to the hospital. Thea fell asleep in the car. As the drive went on, I began to call her
name and didn’t get a response. Tyson
began driving more quickly now looking at me with fear in his eyes. He pulled up to the front of the children’s
ER and I ran inside with Thea laying limply in my arms. Immediately, nurses and doctors surrounded us
and began taking steps to wake Thea up.
Her sugar was low- down to 40- so they gave her insulin and she opened
her eyes. Her symptoms were strange. Her heart beat faster and faster and her CK
levels were high. They hooked her up to
an EEG to monitor for seizures. The
neurologist on duty said that they needed to either up the dose of seizure
medication or take her off seizure medication to see if she was having
seizures. She recommended increasing the
dose but I asked her to take her off seizure medicine and she agreed.
We spent eleven days in the hospital monitoring her
brainwaves, her heart rate, and her sugar levels. Despite her constant lethargy, she was not
having any seizures. We did genetic
testing and came back with a diagnosis of tango2 mitochondrial disease. It turned out she never had any
seizures. The episodes we saw were due
to loss of energy from the disease. When
she stopped eating and drinking (it turned out that she had the flu) her body
depleted her energy levels quickly and she went into metabolic crisis.
Looking back, I am amazed at how much my instincts seemed to
be telling me about my child and our situation.
I felt something was wrong before it presented itself. I also never felt right about the seizure
medicine even though it was the best logical solution at the time. I remember that panicky feeling and the
overwhelming dread the day that she almost died in my arms before the real
danger was confirmed.
I feel guilty that I did not act on those gut instincts
sometimes. I wonder if I could have
prevented some of the things we went through if I would have trusted myself and
been more insistent about more testing.
I was afraid to irritate the doctors.
I was afraid I was wrong. I was
afraid I would cause an inconvenience for everyone. Now I know that sometimes I’ll have to ask
for what I need even if the professionals are telling me with the best
intentions that I don’t need it. My
child is counting on me to advocate for her as someone who knows her best. I’ve learned a powerful lesson on trusting my
gut and intuition. Sometimes with rare
diseases the knowledge is so limited that instinct and intuition is all we
have.
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