Wednesday, December 8, 2010

diagnosis, please?!?...

It's been awhile since I (Amy) updated on our health journey, partially because of the emotional upheaval it involves trying to explain it, (as you'll soon see) and partially because there's not much progress occuring. I'm frustrated and confused. I'm ready for this to be OVER. I'm ready to run to the computer to tell you all: "We figured it out!" But that's not today. Nevertheless, here's the update:

When our local doctor suggested we look nationally for a specialist a few weeks ago, it felt like a huge hammer dropped out of the sky. I don't know why. It was totally the right call for her to make, and I appreciate a doctor who is honest with you when it is time to move on. But I have literally been feeling the pain of being a medical orphan, watching as my daughter's symptoms are worsening and wanting desperately for someone to please HELP us!!!

Okay, so here's the deal. After doing her research, my doctor gave me the names of two doctors (who are actually dermatologists) at the Mayo Clinic in Rocester, Minnesota. (I know.. Mayo Clinic, right? That's awesome!) One of the doctors doesn't see children. And on the other doctor's online bio, it says her special interests include "alopecia" and "auto-immune disorders." (Okay, hello!?! Is there any question who to see?) So I called to make an appointment with the 2nd doctor, and she is currently out on maternity leave until sometime in January, so we've been put on her waiting list to schedule an appointment for whenever she returns. (they couldn't schedule us because she didn't have a return date set) As great as Mayo sounds, thought, I gotta admit: I'd really like to figure this out without the need for 3 plane tickets to Minnesota, a rental car, a hotel room for 5 nights with a toddler, & the possibility of getting snowed-in in Minnesota in January...

So in the meantime, I scheduled a follow-up appointment with our pediatric gastroenterologist at Duke Children's for Tuesday. (they were the ones that did the extensive bloodwork & stool tests and discovered the parasite infection, but we haven't been back since.) I have several questions that I just honestly don't forsee this Duke doc being able to answer, but nevertheless, I need SOMEONE to help me!

Seriously. I just want someone to tell me what this IS!? May I have a diagnosis, please?!? Can doctors stop scratching their heads at me and get to WORK helping me?? Do I have to listen to one more doctor telling me to go see someone ELSE? Can anyone just look at my daughter as a WHOLE, and if not, go GET the doctor that can help understand what's going on! I need a team of doctors to ALL sit down at the SAME table and LISTEN! (which is a plus for the Mayo Clinic-- they pull in a team of doctors who spend endless hours with you in order to give you a diagnosis and then connect you to a doctor in your own area who can help with the on-going treatment)

Whew. Sorry for the venting. If you can't already tell, I'm frustrated. Someone said it best for me the other day: Tell me what to do and I'll DO it! I'll do whatever it takes. If I just knew what TO do! I mean, I'm hearing ALL kinds of advice from well-meaning folks about what they think I should do, but honestly- they don't know. So God pleeeeease direct me to someone who does.

Before the proverbial hammer dropped, we had already decided to take a supplement vacation. We were doing too many things at one time, and so we had no idea what might be causing what. We needed to see if we could tell what was helping, what could be hurting, etc. So we stopped the zinc. We stopped the probiotic. We stopped the digestive enzymes. We stopped being quite as strict about her diet. (though we are still gluten free & dairy free & low sugar. That's certainly not hurting anything to keep her immune system strong.) The only thing we've kept up is her multivitamin.

Don't know that we had any "ah-ha" revelations through doing that, except to see that it didn't appear to be any of those things contributing to the bad poops. (alright, stop reading here if you're the type that doesn't want to hear about my daughter's gastro issues...) :) The bad poops have continued on, even after a second round of treatment for the parasite which initially helped us to see firm poops quite consistently. (which are so rare around here.)

Interestingly enough, on the plane trip down to Texas for Thanksgiving, we gave her quite a bit of nuts to snack on-- walnuts. almonds. pecans. (we cut out peanuts a long time ago when it showed up as the highest delayed food intolerance on the IGG test-- which is different than what you would normally think of as a food allergy) But the poops became even WORSE and more frequent and MORE foul-smelling than ever! (didn't think that was possible...) Anyways, a quick decision to try to remove ALL nuts from her diet has given us perfect, firm poops for several straight days!

But can anyone PLEASE tell me why Caroline's skin (complexion, little "pimples" on face) is always worse when her poop gets better?! It's like this every time. She is supposed to have a beautiful olive complexion like she used to-- she is not supposed to be fair and pale!! (this is perhaps the most heartbreaking symptom to me, even more than the hair, because to me, it makes her look sick.) Can someone also please tell me why my daughter is continuing to lose areas of pigmentation on her legs?? The white patches (vitiligo?) have spread onto the front of her legs now, not just the back of them. Can anyone actually tell me why my daughter is bald??? Okay, so it's alopecia. I get that. But is there something missing (a deficiency of some kind) that's caused it?? It's now been a YEAR. That's 1/3 of her lifetime. Oh, it's too depressing to go there...

I just don't know anymore. For the past year, I've gone to doctor after doctor. I've tried everything in my power to help my daughter. I've researched and read countless amounts of information on health conditions. I'm tired of trying to figure it out. I can't. I don't know what is happening, and I don't like what is happening.

The questions nag me every day without ceasing. I constantly wonder how (and if) this will ever end. What does this eventually look like? What does she eventually look like? When do we get to the last page in this story where we read, "And then they figured out all along she was missing ______, so after they gave ______ to her, and she lived happily ever after..." How and when does this story end? And what happens in the in-between?

Pardon my venting. I was originally going to just post the facts, but as you can see, the facts are not without feeling. But I know my God is big enough to handle all of my anger, all of my questions, all of my fear, and all of my tears. He wouldn't have included the book of Psalms in the Bible if He wasn't. Dear friends, would you please keep praying that He will guide us to the help we need and give us peace and strength to trust in Him in the meantime? I will update you all after our appt. next week.


  1. Have you heard much about the childrens hospital in Pittsburgh? I heard it's pretty good. Though, I am not sure if they have the staff that you need there. ... just an idea?

    so sorry you are going through this. I know what it's like to be on a constant hill..and it is emotionally exhausting.

    Anxious for you to get to the doctor in January. I think that will (Lord-willing) be a HUGE encouragement.

  2. I am so sorry Amy! Thank you for the update though. Know that I will continue to keep you, Marc & sweet Caroline in my prayers.

  3. I know you all realize that We can't see the whole picture, but God can. He knows what we can go through and what He does is for our good and His glory. Just keep on believing that, and I know that one day things will be better. Just trust in Him and lean not to your own understanding. His thoughts and ways are so much better than our own. I know that you trust Him and we are there with you, Caroline and Marc. Our prayers are with you every day. Also our love and support. I wish I could take this on me - an old woman who has lived a full, contented and happy life. Please keep on trusting in Him. He loves you and what He is doing we may not understand now, but one day!
    God bless and see you soon.

    With all our love and prayers!

  4. yes -- Children's hospital in Pittsburgh! Great idea!!

    One of it's kind, I hear.. It is a monstrosity of a building for sure.