We have done many medical things over the course of the last few years, but we have been in some uncharted territory for us the past month.  This particular uncharted territory for us may be familiar words if you’re in your 50’s and above, but unfamiliar words for a seventeen-year-old.

In My Family, Of Course

Let me just be real for a minute, what teenagers have colonoscopies and endoscopies?  Well, mine of course!  Maybe it’s more familiar than what I know, but for us, it felt quite lonely!  By the nurse saying, “We don’t get young people in here very often,” confirmed to me that it is indeed a rare experience for a teenager.

So really this whole process has been merely another medical adventure for the Smith family.  We’ve not talked about it a lot.  We’ve been at home quite a bit.  We have missed numerous worship services, workdays, school days, etc.  It has been an offseason.  The past few months should have been what we consider our calm season.  However, calm is not a word I would use to describe life the past month.

A Sick Girl

For over a month, Chloe has had some bothersome signs that something wasn’t right.  Her color was off, her blood pressure was low, her heart rate was high, her platelets were low, her fatigue level was horrible, plus a few other very personal symptoms.  This girl has muscular dystrophy, lives life with a movement disorder, struggles with migraines, so the fact that she found herself in uncharted territory is quite surprising!

As we have tried to figure out what was wrong, it has led to much labwork!  It has sent us to the ER one night.  Finally, it culminated this week with the horrible colonoscopy and endoscopies.  That girl was the best trooper ever!

New Words, Uncharted Territory for Sure

We heard words like celiac disease and gastritis this week.  Ummm, I have heard of celiac disease before but never once did I think that word would be something in the life of my family.   I’m pretty sure I’ve never heard the word gastritis, but now I have.  I often say that we should have honorary medical degrees.  This week just adds to our experiences in the medical world.

We had to wait on biopsies to return before we had final confirmation of what was going on.  We do have those results.  They have brought some wisdom.

Gastritis

As part of the endoscopies, the doctor discovered Chloe’s stomach lining was inflamed and bleeding; this is gastritis.  This bleeding was what was causing many of the symptoms I mentioned earlier.  The doctor did a biopsy of the stomach looking for cancers and bacteria that could cause this issue.  However, it was determined it was caused by chemicals.  Therefore, Chloe’s neurologist was correct, some of the migraine meds have caused the bleeding.  How do you treat this?  Try to eliminate the drug that is causing the inflammation, and they have prescribed yet another medicine to help heal the stomach and provide a better environment in her digestive system.

Celiac Disease

As part of all the testing they did, the gastroenterologist specifically went looking for celiac disease.  Many of Chloe’s issues can be traced back to celiac disease.  We discovered Chloe does have the gene pairs for celiac.  Only a small portion of the population has the gene pairs for celiac disease.  The only way to test for celiac disease is through a biopsy.  During these procedures that teenagers shouldn’t have to do, they biopsied for celiac disease.

We have learned that Chloe is at great risk of developing celiac disease as well as other autoimmune disorders. It doesn’t help the statistics that her dad has an autoimmune disorder as well!  Some medical professionals will tell you that gluten-free diet is not necessary at this point, yet others argue it is.  We feel given so many of her symptoms that point back to celiac and the fact that autoimmune diseases are a greater risk in our family that it is important to take her to a gluten-free diet.  The medical staff encourage trying this approach and watching for improvements.

Several many years ago, I thought about going gluten-free for another one of my kiddos tummy issues. However, gluten-free just seemed so big and overwhelming to me that I just couldn’t bring myself to go there.  However, in this situation, I am MORE than willing to go gluten-free to help my girl feel better!

How are we handling uncharted territory?

• We are replacing fear and what-ifs with knowledge.  When the nurse called and said, we didn’t find any cancer there was this relief that ran through me and I didn’t even think I was concerned about that!
• We are fighting with insurance once again. Perseverance is developed on a regular basis around here.
• We are putting our family resources together.  Chloe is great at researching.  I love cooking.  Zine eats anything!  We are working together well right now!
• We are finding comfort in knowing that His strength is perfect in our weakness. (“My grace is all you need. My power works best in weakness. 2 Corinthians 12:9)
• We are disappointed and discouraged that Chloe has something else to deal with, not one but two things!
• We are hopeful that relief is on the way.  Actually, we are already seeing some improvements with just taking away the medication that was causing the bleeding.
• We are concerned about the management of migraines in light of current information.
• We are struggling with what others will say or think about us having more medical issues in our lives.  However, we are thankful that in the big picture they are small problems!
• We are continually going back to His Word when discouragement comes.