Pre-diagnosis

Here's the shortened version of our kids' issues from birth to diagnosis of EE:

Tanner:

From birth, he cried/screamed almost 24/7, taking short 10-20 minute naps on and off around the clock. He didn't sleep through the night until just before his 5th birthday (after having his tonsils/adnoids out). He vomited daily probably 4-12 times per day. We used bath towels instead of burp cloths, but the dr. insisted that "all babies spit up." The ear infections started when he was 2 months old and would always return after antibiotics until the ENT finally put tubes in at 15 months. He started on breathing treatments for his wheezing/breathing difficulties when he was about 6 months old.

By one year of age, Tanner had already had multiple bouts of bronchitis, pneumonia, croup, and other miscellaneous infections and illnesses. There was also a couple year stretch from about 3-5 years where he suffered severe leg pain. We went to dr. after dr. and had lots of testing done to try to figure out the source. The dr. at the time said it was growing pains, but we are now learning that so many kids with EE also describe this type of pain. The screaming during these attacks was almost unbearable.

Over the next several years, Tanner stopped gaining weight and became very irritable. He had his first endoscopy in March, 2007, just 3 months after his little brother was diagnosed, and we found out he had EE, too. When I asked him how he felt about this, he said, "Good, I'm glad I have it. Now the doctors and teachers will believe me." :(

Kaleigh:

She was an exceptionally healthy and happy child until she was about five years old. Then, she started getting sinus infections and coughed a lot at night. Our pediatrician said she had asthma.

Over the next few years, the coughing increased, sinus infections came more often and lasted longer, (they'd clear on antibiotics, then come right back) and she became increasingly fatigued. She also started complaining of bad headaches and stomach aches. She had many heartburn and reflux episodes and was always asking for "something cold and soft"� to eat. She had sore throats often and strep throat several times.

She complained of feeling nauseous and had a few bouts of vomiting. She started getting fevers, (some explained, others not) several times per month. Through most of this, she remained a "normal"� kid. We just figured she was one of those kids who caught everything.

She was the last of the three kids to get diagnosed with EE and had the worst damage inside, even though she appeared the healthiest on the outside.

Hunter:

As an infant, Hunter had "cradle cap"�and eczema that was so bad it would bleed. The ONLY thing that would work was steroid cream, but as soon as we stopped, it would come right back. He got the first of many sinus and eye infections at about 2 months and started getting "colicky."�

He was still very irritable around four months, so we decided to try food, thinking maybe he was hungry. He broke out in hives all over his body. We tried multiple times to start him on solids until he finally accepted them at around 7 months, (getting hives every time). He had many pediatrician visits and we were just told to give him benadryl. He had it every day from about 4 months to 20 months old, when we went to the allergist for the first time.

When Hunter was about a year old, he developed a "cold"� that wouldn't go away. He started having frequent vomiting, asthma requiring ER visits and a hospitalization, and the on-going sinus and eye infections and hives, was labeled failure to thrive, started having difficulty sleeping, and plenty more issues.

He was the first to get diagnosed in December, 2006. I thought that was going to solve all his problems, but unfortunately, it hasn't been that easy. About a year later, he began having blood in his stool (quite regularly and sometimes a LOT). He also complained of severe abdominal pain and would fall asleep for a long time after these episodes.

They never did find the source of the bleeding and it still happens...almost always in the fall though. There's a definite pattern to it... severe abdominal pain, followed by bloody stool, he gets pale and lethargic, and then falls asleep. It comes out of nowhere every single time. He will literally be running, jumping, smiling and then just lay down wherever he happens to be...on the floor, my chest, the couch..somewhere.