Welcome Friends!
Cristobal S.
Florida
Biography

Cris was my surprise baby.  I wasn't supposed to have children.  I fell at work
one day, went to the hospital, and they wouldn't send me for an x-ray until the
pregnancy test came back.  Funny, I wouldn't even believe them.

From the moment he was born he started vomitting, even before he had anything to
eat.  He wasn't allowed to lay on his back, the propped him up on his side.  We
were assured that is was baby reflux and he would outgrow it before he was 6
months to a year.  By 6 months he had stopped spitting up because they had him
on a special formula.  So we believed that we were in a good state and we had a
healthy baby.  Until he turned a year old.  Things drastically changed.  He
would be sitting on the floor, turn his head, vomit a large amount, then go back
to playing.  It happened every day at least 3 times a day.  No warning and it
could happen at any time.  Back to the GI.  He put him on a medicine to help the
food pass his stomach faster.  Then he also did a head MRI to make sure there
was no tumor in his brain.  After a year on the medicine the vomitting stopped.
So again we figured healthy child.

When he turned 3, I had a daughter.  She had a ton of GI problems, including
failure to thrive.  Her reflux was so bad it caused her to develope asthma and
chronic bronchitis.  During this time with her, we kept watching Cris and
listening to him.  He had a smokers hacking cough, but he wasn't sick.  By the
time Sarah was 16 months old she needed surgery to correct her reflux to protect
her lungs.  But since we understood more about reflux we took Cris back to the
GI for the coughing.  He performed 2 tests, a pH probe to check for acid coming
back up and an endoscopy.  The dr told me that both my children had the worst pH
probes he had ever seen (He was the head of peds GI for the University of
Miami).  The endoscopy came back just as bad.  Unfortunitly, the doctor didn't
tell us just how bad, nor did he treat what he found.  What he found, at the age
of 4, was eosinophilic esophagitis.  He repeated the endoscopy at 5 and still
got the same diagnosis, but still didn't tell us
  or treat him.  The only thing we knew was that he had severe reflux and he was
on a reflux medication.

From 5 till age 12, we listened to the smokers hackers cough, watch him have
heartburn, reflux medicine didn't work.  And there was nothing the pediatricin
would do except change medicines.  All that changed January 20, 2010.

Jan. 20, 2010, he woke up with laryngitis and a lot of pain in his throat.  He
asked if he could stay home and we said yes.  Three days later he was still the
same and we took him to the doctor.  She said it a bug, take some anibiotics.  A
week later, still no change, back to the dr, now she said it must be an allergy.
Another week and we decided to go to the ER thinking they would run some tests.
We got, his reflux must be acting up bad.  For a total of 6 weeks, no tests
being run, 4 doctor appointments, and 3 ER trips.  The final ER trip I basically
grabbed the dr by the face and said fix my kid.  I should add during all this
time, we weren't sending him to school because we didn't know what was going on,
didn't have a diagnosis, nothing.  The ER doctor listened to me and did
something.  He called down an ENT.  The ENT took a scope down his nose and
looked at his vocal chords.  He said they were damamged and had reversed
themselves.  There happen to be a GI in the ER at t
he same time who overheard the entire case.

Dr Christopher Jolley, our Godsend.  He came over to us and told me to get Cris
into his office Monday morning.  I told him our insurance wouldn't cover it.
His response (shocking) I don't care about his insurance, I care about him and I
can help.  We took him in.  He did an exam and wanted to do an endoscopy.  He
even had a way around the insurance for that too.  He got us into Children's
Medical Services.  As for the scope, he had us come into the ER and he was able
to admit him so insurance would cover it.

One of the other doctors came out after the scope was done.  She said his
esophagus was so damaged she was surprised he was still able to swallow.  And
she said that while he has reflux, that wasn't the cause.  Dr Jolley was sure he
had eosinophilic esophagitis.  I didn't understand what this was.  I got a crash
course in a disease I had never heard of.  EE (short for eosinophilic
eosphagitis) is an autoimmune disease.  The white blood cells - eosinophils -
are supposed to attack paracites, but in the case of EE they attack food
thinking its a paracite.

There is no cure, no federal funding, and research is limited.  Treatments vary.
They start with swallowing an inhailed steroid that is used for asthma.  If that
doesn't work, they try another asthma steriod.  Neither worked and actually made
Cris worse.  Next treatment is remove foods that he is allergic to.  Nope that
didn't work either.  Next treatment is called top 8 free, this means they remove
milk, wheat, eggs, soy, seafood, shellfish, peanuts, and tree nuts, and the
foods he is allergic to.  That seemed to make him a little better, but it didn't
take away his symptoms.  His symptoms: chest pains, easily tired, very senstive
skin, nausea, vomitting, and leg pain so bad he ended up needing a cane.

Cris became the worst case in the office.  His esophagus was so inflammed he had
to have it dilated with a balloon like an artery to open it back up.  Dr Jolley
wanted to send Cris to one of four centers in the world that specialize in EE.
We started to get paperwork together to go, which is when I found out that the
doctor knew when he was 4 and 5 that he had EE.  There was one other treatment.
I begged Dr Jolley to do it before he sent us out of state.  If it didn't work,
I would start to pack.  The last resort treatment is to take away all food, put
him on a special formula for his sole nutrition.  He could drink it or needed a
feeding tube.  The formula tastes so bad, Cris wouldn't drink it, he got a ng
tube - a feeding tube that goes through the nose into his stomach.  Dr Jolley
wanted it in for 2 weeks to see what happens.  A month after it was in all his
doctors said he looked better than they had ever seen him.  So he said we
weren't taking it out.  Another month we
nt by, he started to gain weight, he started looking even better, and the
doctor said it was time for a more permanant solution.  Off to surgery to get a
g-tube.  He is 14.  He has been without food since January 21, 2011.  He goes
through food trials, but has failed them.  This means we try one food at a time
and look for symptoms.  Could you take away all food from a teenage boy?  If
affects the entire family.  The only thing he can have by mouth is water, ice,
and pills.  We have no idea how long he has to be without food.  We have no idea
how long he has to be on this formula.  But until he starts to pass enough
foods, he lives on this.  This formula is $51 a can, same size as regular baby
formula, and he goes through a can and a half a day.  Between the formula and
medical supplies we need at the house, his medical costs are over $4000 a month.
We are lucky because he has medicaid, most other insurance companies won't pay
for all this.

This is a life long horrid disease.  Every 2 - 3 months he has to have an
endoscopy to check his esophagus.  If he gets a stomach bug he ends up in the
hospital for at least 10 days.  I can't treat it at home with popcicles and
gatorade.



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Birth Date -   November 4, 1997

Main Diagnosis - Eosinophilic Esophagitis

Quilt Deadline: 8/1/2012

THEME: Space, astronauts, space shuttle, no aliens - fav color is blue

"THANK YOU"

He has this as his only blanket.  He will bring it out to watch TV and back to go to bed.  We really can't thank you enough.  There aren't the words for it.  You all do such amazing work for these kids, it brings a warmth to everyone's heart that sees it.