Monday, January 7, 2013

We have a diagnosis

If you've been following my blog at all, you know that we've been waiting to here back from Jaedyn's pediatric gastroenterologist regarding her diagnosis as to why she can't gain weight.  Well she called back and we have a diagnosis - Crohn's disease.  Her video endoscopy showed a lot of inflammation in her small bowel (especially in the ileum) and also ulcers throughout her colon.  The GI doc isn't sure the ulcers weren't biopsy sites and she is waiting to see pics of the spots herself.

In some ways knowing the diagnosis is worse than the waiting.  Perhaps I just need to let it soak in.  Perhaps part of me is still in denial.  Perhaps I'm just scared of what this is going to mean.

Living in Alaska all of a sudden seems so remote.  It never bothered me before now.  Having a doctor call me and give me a bomb like that over the phone was her way of not making me travel 3 hours to do the same in her office, but now I feel like "What do we do now!!?"  I know better than to get onto some yahoo support group - that was disastrous when my first daughter had seizures - I was so freaked out by the stories!  We have been looking at Mayo Clinic and some Children's Hospitals websites online.  It seems other places have whole teams to helps patients newly diagnosed with Crohn's.  We get a phone call with the doctor essentially asking me what I want to do.  Yes, I may be a PA, but I'm not a gastroenterologist.  I'm a freaked out Mom like everyone else would be wondering what is the best choice for my daughter.

Right now the options seem to be 1) giving her a short (2 week course) of prednisone then putting her on an immunomodulator.  Uh, are you sure this is first line?  2)  Putting her on total enteral nutrition, which consists of having her drink nothing but a nutritional supplement like Ensure or Pediasure for 6 weeks - no food, only the supplements or water for at least 6 weeks.  3) Watch and wait and redo the tests in 3-6 months.  4)  Go naturopathic - whatever that would mean.  "The Maker's Diet"?  The Whole 9/Whole 30 diet?  See a naturopathic doctor?

On a good note, my 8 year old daughter, Eliana, who had some serious scoliosis going on last summer was re-xrayed this week and it appears to be completely gone!  That makes one less trip to Anchorage.  Thank You, LORD!

Please keep us in your prayers as we face this beast with Jaedyn.  If He can make a crooked girl straight, He can heal another girl's inflammatory bowel disease.


Melissa said...

I know what you mean, even living in a bigger town than you, I still have to fly to Anchorage to see my endocrinologist.
I will pray for her and you.

Jennifer Hoots said...

Praying you have God's wisdom! May He be your guide and peace.

JoAnn said...

Oh I'm so sorry. I know I would start feeling like you are too, especially with the more you know. I will be praying for you all, healing for your daughter, and guidance for you and your husband as you decide what is the best route to take. Can you combine some of them? Look online for info about the naturopathic and do something else too?

Like you said, the Lord straighten out your daughters back, He can help this disease too.