Thursday, June 10, 2010

The lost month (plus two weeks)

Well, we finally have a diagnosis. My kid's got Crohn's Disease. Look it up. I don't feel like linking to the scary Wikipedia page. Dr. F., the kindly pediatric gastroenterologist, has assured me that Internet information is five years behind the times. Therefore that scary Wikipedia page needs some updating. And less terrifying images. But anyway, there's lots of new medications available to control this badass autoimmune disorder, so we'll be learning more about this soon.

The important thing is that we have a diagnosis and now treatment is underway and symptoms are disappearing symptoms. Sorry, staying at the hospital for two weeks has done a number on me.

Here's some of my notes from the past few weeks from my little notebook that I carried around to all the doctors' offices, labs and pharmacies. Not entertaining, but kind of historical for me. May good health never be elusive, and may you have the good luck to stay in the pediatric ward in our local hospital with its amazingly kind, hard-working and nurturing staff.

Notes (with misspellings intact):
-stomach pain in April for 10 days.
-tired 4 two wks.
-fevers last wk-end & this wk-end.
-near fainting last wk & this.
-severe stomach pain, worse after 10 days (Mon., Tues. worst).
-right jaw hurts [we never did figure this one out--it went away on its own.]

protein--not absorbed
needs inflammatory bowel disease IBD genetic test, pending
Mono & Epstein Barre, pending
Wheat, pending
-not eating or drinking
-worse symptoms

Need Readi-cat: 12:45 - 1/2 bottle 2 hrs before test; 1:45 - 1/2 bottle 1 hr. before test.
No solids after 10:45 (4 hr. fast)

Ask about meds for appetite increase

-Appendix looks a little enlarged
-Less fat means more difficult to tell if it's appendix.
-She will talk to surgeon now and call back.
Surgeon: appendicitis
-no rush to treat
-might heal itself
-lab work--abnormal but not catastrophic
-if no symptoms: watch and wait

Emergency Room IF:
-abdominal pain
-not eating
-throwing up

IBD pending (blood test)
stool softener
white cell: normal
hemoglobin: normal
platelet: little high (inflamed)
Celiac disease - gluten, Thurs. results
seriacitive protein SED - inflammation getting higher
Albumin: low. Blood related. Could be leaking

Make ultrasound appt.

Colon - non-casiating grandaloma
terminal ilium -- ? (Crohn's likes it)

And there you have it. Except for the last three lines, these were all notes from before the two-week hospital stay. It's been quite a journey. The best news is that he's feeling much better and appears to be on his way to better times ahead. Today was garbage day--almost like Christmas for Jackson.

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