Welcome Friends!
Matthew F.
Birth Date -   August 24, 2004

Main Diagnosis - Mitochondrial  Disease


THEME: fish and fishing w/ Minnesota great outdoors.... camping, appropriate animals- color dark blue
































Biography

I was originally diagnosed Jan 2006 at 15 mts of age with a PID:
primary immune deficiency called hypogammaglobulinemia with specific antibody
deficiency. As a baby, I was sick a lot with ear and sinus infections. I was
constantly congested and could not breathe through my nose. I would bang my head
and put things in my ears (like pencils). I kept my parents up at night crying
because my head hurt from a severe sinus infection called pansinusitis which no
one knew I had. My Mom kept bringing me to the doctor and I would take all of my
medicine but, I never got better. My Mom was beginning to think she was going
nuts. Finally, at 15 mts they did a sinus CT which showed this severe sinus
infection even though I was on antibiotics and finished many courses of them
prior. It was one of the worse CT scan they have seen. I saw an ID(infectious
disease)/ immunology doctor. She checked labs for my immune system and there was
some problems with my B cells. She said I would need IVIG (IV-immunoglobins) every 3 weeks and sometimes sooner maybe for the
rest of my life. I have had over 8 sinus surgeries and 5 ear tube surgeries to
help promote better drainage to help fight the infections. I needed 4 continuous
months of daily IV antibiotics and antifungal meds to treat that 1st severe
pansinusitis and have had repeated episodes of this several times a year. I have
been in and out of the hospital with various infections and problems. I had a
port-a-cath because I needed IV medicine, labs, and IVIG so often but recently
had it removed because I was septic twice within months with my own gut
bacteria. I went out to Cincinnati Children's Hospital for a 2nd opinion for
diagnosis and treatment options for my immune problems. They suggested weekly
SQIG infusions which I tried and am still on. I also have been diagnosed with
rheumatological arthritis (RA). I have to take daily medications and do daily
range of motion several times a day for the joint pain
and stiffness along with getting some steroid injections into my joints here
and there. I also have high blood sugars which are monitor and corrected by
medication; anemia which led to pica (ate kleenex, toilet paper, markertips,
etc..) to which I have received IV iron for but right now I am taking repliva
(oral supplementations) by mouth. I also have lots of GI problems. I have
problems with abdominal distention, diarrhea, overgrowth of bacteria and fungus
and/or yeast in my gut, chronic vomiting, clay colored pale stool and recurrent
ileus. My weight and height are slowly falling off of the chart as time goes on.
In the spring '07 found out I possibly have a variant form of CF (Variation
5'UTR-142C>A in the promoter region of the CFTR gene) to which I take pancreatic
enzymes, vitamins, do daily vest therapies and neb treatments for. I have a
chest deformity called pectus excavatum that makes my breathing issues worse. At
the end of the summer in '07, I learned that I have
worsening T cell problems (particularly the helper T cells) that may be causing
my autoimmune problems. In the Fall 2007, I learned I had NK cell problems. NK
cells are part of the immune system too - ahhh. It was suggested this might
cause my GI symptoms. In July of 2008 I saw a neurologist because I had
intermittent problems where I could not see out of my right eye, will get a
headache, have trouble walking, vomit and sleep afterwards. She ordered an MRI
to rule out migraines. The MRI in Aug '08 showed a posterior fossa - brain
tumor. It was removed on Oct 9th and sent out for pathology. We found out the
tumor was a benign tumor called choroid plexus papilloma. The surgery led to
adrenal insufficiency and ongoing problems with adrenal crises. I take daily
cortisol replacement and sometimes get a shot called solu-cortef when my body is
stressed. In summer '08 I also went out to the Children Hospital of Wisconsin to
see their Genetic and GI dept. They thought I had rare con
dition called(SDS)Shwachman-Diamond syndrome and later thought I had autoimmune
polyendocrine syndrome but the genetic tests were negative. Still puzzled they
suggested mitochondrial testing so in March 2011 I went to Atlanta to be
evaluated. It took 13 weeks after doing a muscle biopsy that I learned that I
indeed do have mitochondrial dysfunction. I am not able to convert food into
energy properly inside my cells. So, when I get sick my body take energy from my
brain, heart or other organs that may also need it. This is not good. I'm
starting the mito cocktail and hope it will help me live a more normal or
healthier life. You can follow my story at www.caringbridge.org/visit/matthewmichael 


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