The ABCs of My Mito
Adapted School
Schedule – I go to school from 9:30 to 12:30 every day, and sometimes stay for
lunch. If we went back to a regular schedule, everything would snowball. Since
I went to this schedule last year, I have had less severe episodes and
symptoms. It means I don’t get to do electives right now, but it is what is
best. This A would now be "At Home Schooling". About 3 months after this blog was originally written, we had to make the decision to pull Natalie from traditional school due to the amount of issues she was having. We are by no means "issue free" but this decision has helped her tremendously. While she misses being at school, she feels it has been so much better for her body and we are able to keep things in balance for her most of the time. She has also gotten very connected with our Elk Grove homeschool community which has been a huge blessing.
Brain Fog – This
is one of the biggest challenges I have right now. It is so frustrating. I can feel like I go
somewhere else for a minute and then come back. Sometimes it feels like everything
is moving in slow motion. When it is bad, I also forget things from one second
to the next, or have trouble keeping up with discussions or school stuff. It
impacts me in volleyball especially on harder days.
Cocktail – Like
many mito patients, I take something called the mito cocktail. It is a bunch of pills and some liquids to
help me with my symptoms. Mito cocktails are made up of vitamins and other
supplements, and are especially figured out for each mito patient. My doctor
makes adjustments to it as needed. It has made a huge difference for me with my
symptoms.
My current daily mito cocktail includes 15 pills and 2
liquids in the morning and 8 pills and 1 liquid in the evening. That equals
8,395 pills per year plus the liquids each year for my mito cocktail alone.
This does not include any of my other “as needed” medicines. Only one of the
things in my mito cocktail is covered by insurance so we have to pay full price
for the rest. One of my supplements is a special blend of creatine and other
things that is especially designed for mito patients. We have to special order
it each month.
Dysautonomia
– Dysautonomia is a term that is used to described when your autonomic nervous
system isn’t working right or malfunctions. Many of my problem are due to this. Your autonomic nervous system is the part of your nervous
system that controls involuntary actions, such as the beating of your heart and
the widening or narrowing of your blood vessels. It carries messages from your
brain to all the different parts of your body. When I am sick, fatigued, or under
extreme stress, my autonomic nervous system goes crazy and starts giving me all
kinds of issues. I can also have problems sometimes for no apparent reason. For
instance, I will get light headed, have heart palpitations or a very fast heart
rate, get super flushed skin, shaky, shallow breathing, and/or numbness and tingling
sensations. When I am getting sick, sometimes I will have these symptoms begin
before I actually get the viral symptoms and last for longer than the actual
virus.
Emergency Room
Visits – I have been to the ER a lot of times, but we try to avoid it if we can
because of all the germs. Usually I go for a smaller migraine treatment or to
get IVs if I am sick. When I get the same viruses that my classmates get, I
tend to get them worse and they also flare up my mito symptoms. Often times, I
have to go and get IV fluids to help my body stay okay.
Fatigue – This is
my biggest issue. It causes me the most difficulty in my days and if I do not
get plenty of rest and make sure I don’t do too much. Fatigue will cause me to
have much bigger problems that can lead to a “mito crash” or land me in the
hospital.
Gastrointestinal
Issues – I have had some different problems in this area. I have decreased
motility which is worse when I am sick or have other problems. I also have acid
reflux. Sometimes I also have swallowing issues. Last year my swallow was off
for about 3 or 4 weeks and I had to have special tests done and have mostly
liquids. Luckily, it got better and only gives me problems sometimes. I have something called Cyclic Vomiting Syndrome which I will talk about when we get to the letter "V".
Heart rate
irregularities – My heart is good, but I have heart rate issues often for no
reason. I can be laying still or even asleep and my heart rate will become very
rapid. Other times I have heart palpitations.
IVs – When I go
the hospital, I get IVs for medicine and fluids and it helps me function
better. I have IVs too many times to
count, but they really help me. When I have to get my migraine treatments, I
have to get a special kind of IV called a PICC line because of the type of
medicine. This medicine can collapse my
veins if it is in a normal IV line. That happened once. It was awful. The PICC
line goes in my Bicep.
Joy despite my
circumstances – I have had some really, really hard days and scary times, and
there are a lot of things I wish I could do that I can’t. BUT I have a very
good life and am blessed. Even on the hard days at home or when I am at the
hospital, there is always something to be happy about. I have a great family,
awesome dogs, and wonderful friends who accept me for who I am, and a great big
God who is with me always. Through
everything, my mom and dad have always shown me that there is joy to found no
matter what. We have had great times even during my hospital stays.
Ketotic
Hypoglycemia – This was one of the first larger issues I had. I started having
really low blood sugars in the morning when I would wake up. I felt super shaky and my heart rate would be
elevated to 150 beats per minute. I even had some mild seizures. A
doctor told me that it wasn’t diabetes, but it was pretty serious and I needed
to eat a snack before bed so my blood sugar wouldn’t be so low. I also had to eat every few hours (and still do). It would be
worse if I was sick or tired, too. My issue with my blood sugar caused me to be
in the hospital many times. Now my blood sugar doesn’t usually drop, but I
still have metabolic problems so we monitor the ketones another way.
Limited Exercise –
Exercise is important when you have mito, but you have to be careful you do not
do too much and cause your body problems. I have exercise intolerance issues
which means my body really only can do so much without me having issues with my
breathing or muscle fatigue.
Migraines – I
have had migraines for several years now. My doctor told me that I get pretty
much every type of migraine you can get, and of all his patients, I have the
most kinds. I can have small migraines, migraines that last for days, and have
even had one that lasted for two months. I also get what is called silent
migraines where I just have aura but no pain. I get all kinds of aura – shapes,
lines, zigzags, black, white, colors. I also get weird sensations with my migraines.
Ocular migraines are scary for me because I don’t like it when I lose vision in
my eye or lose my peripheral vision. I
was having a lot of “stroke-like” episodes for a while which are also very
scary, but the L-Arginine I take has helped a lot with that.
Neurocognitive
issues – In the second half of 6th grade, I started having a lot
more trouble with my schoolwork and with my processing in general, which was
even worse when I was fatigued. My mom and dad had me assessed and we found out
that I had developed some issues with my working memory, fluid reasoning,
attention, and processing speed. This is something that can happen with
mitochondrial disease. The brain uses up to 20% of the body’s energy so when
your body isn’t getting enough energy, the brain gets affected. My mom and dad
worked with the school to help me. I am still very smart and get good grades.
It just takes me a little longer some times and I need some accommodations and
support. I also went to cognitive therapy for a while.
Occupational
Therapy – I went to an occupational therapist for an evaluation and we found
out that I need occupational therapy to help me for many different areas including
motor skills coordination, bilateral coordination, visual tracking, and to help
with my muscle tone and weakness issues, especially in my hands and core. I worked with occupational therapists for about a year, and they taught me different strategies that work for me.
Ptosis and Eye
Fatigue – I have eye fatigue issues
because of weakness in my eye muscles. My eyes get very tired and sometimes it
can be difficult to read even though I have good vision. If you look at me on
certain days, the top eyelid of my right eye droops because of weak eye
muscles. It happens more when I am fatigued or my body is having problems.
Quick Trips to
San Francisco – I am a patient at the Muscular Dystrophy Clinic in San
Francisco. My neurologist is part of that and so is my pulmonologist. I also
see a cardiologist in San Francisco once per year and have a urologist there
for problems I sometimes have. This is also where I have my overnight sleep
studies. My parents and I do day trips to San Francisco for clinic appointments
where I see a few of my San Francisco doctors all at once. They are about 3-4
hours long. UCSF Benioff is where I have to go when my migraines get out of
control. I usually have to stay there for a 5-day special treatment. It is a
hard treatment with lots of side effects, but it really helps.
Real Understanding
Needed – I don’t like to be thought of as a person with mito. I like to be
thought of as me and treated like everyone else. But…I also need people to understand
that mito is real, and sometimes things are rough for me. I cannot do what
everyone else can do, even though I try my best or want to. I don’t ever want
anyone feeling sorry for me. I just want them to understand. The best friends I
have are those that “get me”, who treat me like everyone else but also watch
out for me and understand that I am going to have difficulties at times. Sometimes it is hard for me to keep up with everything going on, but I always try my best.
Sleep Apnea – I
have to wear a BiPaP each night to sleep because I have obstructive and central
sleep apnea. If I don’t wear my BiPap even for one night, I will have a load of
symptoms the next day and will not functional well at all.
Temperature
Intolerance – My body can’t regulate hot and cold temperatures very well. Heat
is a huge issue for me. It makes me feel really light headed and depletes me.
It causes all of my symptoms to flare. I have a cooling scarf I wear. In the
summer, I have to adjust my activities because of the heat or I have a lot of
problems. The cold causes me to get
really stiff and once I am cold I have trouble getting warm. I also have to
ease into swimming pools and cannot just jump in all the way at first. If I do
it causes what my doctor calls a “dysautonomic storm” and sends my whole body
into a panic. This continues to be a real issue that we have to work through and be careful of all of the time - especially the heat intolerance issue.
Ultra Sounds,
EKGs, MRIs, EEGs, CT Scans – I have had a lot of these. The MRIs have been on
my brain to check and make sure that the migraines, stroke-like episodes, and
other problems I have had did not cause bigger problems. Last year we had to
take my braces off to have one because I was having a lot of weird symptoms and
problems, and the doctors wanted to make sure everything was still ok in there.
Vomiting and Nausea – When I
was in 2nd grade, I started having cyclic episodes and horrible nausea all
the time. It went away for a few years (from about 5th-7th grade) and would
come sometimes with migraines, but this past year it came back for a
while. I had problems with this every night for a week and just recently I
have had three different really bad vomiting episodes in the middle of the
night. I was not sick with a virus. It was one of my episodes because
my body was having a hard time. Luckily, we caught them early
enough with medication, and I did not have to go to the hospital. I get
nauseous with
fatigue sometimes, too. Since
writing this, the cyclic vomiting gotten bette. We have been lucky to catch many of them
early as she knows the signs and have avoided having to go to the ER. The
episodes are very distinct and similar to each other so we have gotten
good at identifying them in the early stages and managing them. They are
usually accompanied by extreme fatigue and other dysautonomic
symptoms.
Weakness and Tingling – I get weakness and tingling in my arms and legs when I am more
fatigued, sick, or in a migraine episode. Sometimes it is hard to walk. I also
have weak muscles in my fingers, core, and legs. One area where muscle weakness
has been a problem is at the base of my tongue. That is one reason why I have
sleep apnea.
X-Rays – I have
had abdominal, leg, and chest x-rays all for various reasons related to my
symptoms.
Years to Diagnose
– I have had issues since I was a baby but was not officially diagnosed until 3rd
grade. Since many doctors don’t know enough about mito (and we didn’t know),
they couldn’t figure out what was wrong. I went to all kinds of doctors before
my mom found one who could help and told us about mitochondrial disease. I had to have a muscle biopsy where they took some of the muscle out of my leg and ran tests. I also had lots of bloodwork. We are still working on trying to find even more specific information about my mito so that we have a better understanding of what to expect in the future for me.
Zofran – Zofran
is a God given gift from holy angels! It is something we always have and I take
it for nausea and vomiting. It has kept me out of the hospital many times, and
helps me a lot during migraines.