Children's Hospital Day Three

I can't start at the begining of our journey, as we are already a little way in.  Day three is where our story begins.   My 14 year old daughter Solstice was diagnosed with hereditary angioedema three weeks ago after what seems like a lifetime of unexplained pain.

Just in the last three months we have seen over twenty doctors and every single time the tests have come back normal.  She's had cat scans, x rays and a MRI on her brain.  Every time we saw a negative result it was a sigh of relief paired with frustration..  The doctors said nothing was wrong, yet she hurt so badly. Waking up nearly everyday with stomach pains that would leave tears in her eyes.  She had a period of a week where she couldn't move her arm without intense pain.  Nearly a month and a half of crippling pain in her knee.  Then her face started to swell.  Just a little, at random times.

The emergency room said it was an allergy, the allergist just shrugged her shoulders.  I've seen three or more doctors gathered around my child, studying her, just perplexed, rubbing their chins in confusion.  Then I changed family doctors to Dr. Shannon Hill at Broomfield Family Practice.  She was a DO, which stands for Doctor of Osteopathic Medicine.   I didn't pick her for her qualifications.  I chose her because of her reactions.

You see, each doctor, after their tests showed negative... every single one of them mentioned "the strength of the human brain" and that perhaps my next stop should be a therapist instead of another MD.  But when Dr. Hill gently said this to me, I looked her in the eye and said  "I know my child is manipulative, she after all was raised by me, and I've had to depend on my people skills for survival more often than I'd like to admit.  But this pain, it's real.  Please help me.  And instead of shaking her head as everyone before her, she looked me in the eye and said "Okay, lets go".

We worked together for close to two months, both researching tying to find an answer to the Solstice puzzle.  She got all the tests approved, then got them approved again to double check.  I started testing for radon and mold at home.  We did heavy metal tests, lyme disease, mri's, anything that would explain.

Then one day we had an appointment, and Solstice's face was particularly swollen.  She walked in the room and said  "Oh my gosh, I know what it is."

That was three weeks ago, since we have been in the emergency room 4 times and have been here at the hospital for 3 days.  Even now, in what totes itself as one of the top ten Children's Hospital in the country I'm pretty sure the doctor just called my daughter's momentary pain an HAE episode.  Which means that he doesn't even know what an HAE episode consists of.

That's the reason for this blog.  Because this disease is so rare, I want to find a way to connect with other mothers in my position, people who know something about this disease, doctors who know what is happening.  I feel like I'm at the wheel driving, and I don't have the tools I need to even start the ignition.

Until next time....