Wednesday, December 9, 2015

Best Birthday EVER

This is the day that the Lord has made, we will rejoice and be glad in it.  Psalms 118:24

While I was concerned that a visit to the GI on her birthday would be a dark mark, it actually ended up being icing on the cake.  Today we found out the following about Ms. Wren:

Wren’s colon seems clear.  She is still going to need some assistance for the next couple of months to keep it that way, but she should be able to wean off help in the next two months and be back to normal.

Wren is in remission.  She has been for two years.  Our pediatrician was reading her results incorrectly.

It’s a lot to process in the best possible way.  First, the question I know everyone probably has:  how did this happen?

Well, Wren’s pediatrician referred us to a GI when she was first diagnosed in 2011.  The GI looked at Wren’s blood test results and then said we needed to set up an endoscopy.  However, she wanted Wren, who had been off gluten for three weeks and was still pooping out unprocessed food, to gluten up for the endoscopy.  I asked her if she really doubted Wren’s diagnosis based on her blood test results.  She said no, she knew Wren had Celiac just based on the blood test.  Why then, I asked, do we need to hurt her by giving her gluten?  Protocol.  That was the answer I received.  When I refused to hurt my child due to protocol, this doctor told me the GI community would be unwilling to help my daughter in any way until I agreed to her terms.  They wouldn't even view her as a child with Celiac.  She said this as she wiped up stray carrots that had fallen out of my daughter's diaper.  We walked out.  We didn’t go back.

Our pediatrician, naturopath, and for a while a dietician, helped with our concerns as we transitioned to a gluten-free lifestyle.  When Wren’s body still exhibited problems with her adrenals, her thyroid, her liver, and her vitamin absorption, the naturopath handled it.  We watched her get better and were happy to move forward. 

Wren didn’t have her first remission blood test until 2014.  Her scores were so bad when she was diagnosed in 2011 that no one believed she would be in remission any sooner than that.  Her TTG IGG was high, and came back high again in 2015.  This is where it would have been good to have a GI, but we didn’t know that.  I had no idea our doctor’s interpretations of the scores could even be in question.  I had no idea there was more than one way to read them. 

It was Wren’s colon issues that led us to a new GI, a GI who told me today she would not have asked us to put Wren through an endoscopy four years ago.  She saw those results from 2011 and said there was no question; Celiac ravaged Wren’s tiny body.  Of course she had Celiac.  She then explained the difference between the IGG and IGA scores and assured us she was in remission. 

So, what can you learn from our long journey?

Let the holistic community help you.
That’s right, I don’t begrudge our pediatrician, who is more holistically-minded, for an error.  I hate that it happened, and D and I stood together and cried in the backyard when the stress we'd been carrying due to this mistake finally made its way out of our systems. However, she and her team of holistically-minded helpers ushered us through a hard time.  Without them it is very probable Wren would be on chronic medication for her thyroid and other various issues by now.  They didn’t band-aid fix problems that were thrown our way due to her Celiac; they knocked them out at the roots, and for that I am eternally grateful.

Find the RIGHT GI.
Our first experience hurt, especially during a time where we were so raw and trying to figure out what to do.  We were told that our unwillingness to hurt our child disqualified us from certain types of medical care.  But the GI we have now is completely different.  While she is not as familiar with finding root causes as the holistic community, she knows what she knows and she respects our wishes for Wren. 

Get ready to play the middle man.
We want the best care for our kids, and that means striking the balance between the crunchy granola tribe and the hard core medical peeps.  Generally, these people don’t get along.  Our pediatrician hates Children’s, where our GI is located, and thinks specialists don’t consider the whole body’s connection when treating patients.  The GI gives me the raised eyebrow look when I mention things like chiropractics, flax seed oil, and liver cleanses using homeopathic drugs.  That means D and I play the role of the kids with divorced parents: visiting both places but never talking about either “parent” too much to the other one lest the “parents” start accusing us of loving the other one more.  It sucks.  It’s not the way medicine should be, but it is the reality we live in.  We’ll manage.

Today after Wren’s appointment we took a picture in front of the big Christmas tree outside of Children’s and then Wren cartwheeled down the grass out front.  

She doesn’t fully understand the impact of what happened.  We never told her about the remission fiasco.  She worked too hard, and there was no way we were going to tell her it looked like we’d come up short yet again.  No way.  She just knew her GI was happy and her mommy was happy and she could poo for the first time normally in months.  She didn’t have to get a blood test and ate trail mix for lunch.  It was just a good day for her in general.

I don’t know why this route was the one we had to take to get to where we are.  It’s not a question I plan on asking often.  Where we are is good.  That’s enough. 

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