Wednesday, December 1, 2010

Good news ... bad news

I have a lot of things to post about - Thanksgiving, Rebecca's birthday and more.  Hopefully, I'll catch up soon.  This week is crazy busy though, so we'll see.  I had something though that couldn't wait.

Eliana had her regular well child appointment yesterday.  It was long.  We met with her beloved ped who reviewed the results from her cardio visit.  I asked if they had also noted that she was unhappy with everything and did not want to be there.  She laughed and said the note was "unable to examine".  Thankfully our Dr L is wonderful and was able to do a full exam on Eliana - even though she was NOT thrilled with it.  Ears are fine.  Small murmer and leak in her heart - though nothing to worry about now.  Height and weight - on the small side.

I'm going to digress here for a moment.  For those of you with children that have Down syndrome (Ds), you know about the height/weight chart for kids with Ds.  Since kids with Ds don't grow at the same rate as kids without the extra chromosome, a growth chart to match their growth was developed.  I liked this and found it really helpful.  Well, turns out the governing bodies (not sure which one) decided this wasn't necessary, so now they will be measured on a typical chart.  Umm, well great.  I know she is tiny - and likely always will be.  She is at the 1st percentile for height and weight.  I looked her up on the Ds chart though and she is 25th for weight and 60th for height.  :-)

Back to the exam.  We have missed our appt at the local Ds Clinic due to them changing our appointments in the summer.  Its on the ONE day during the week that I can't go - our field trip/co-op day.  We are scheduled there for next summer.  Since we haven't been able to go, we decided to go ahead and do the necessary lab work.  I know too she needs to get a neck/spinal x-ray.  Dr L wrote a script for her to have that asap - though after examining her she changed it to "during the next year".  LOL  She would not be sedated for this and given her extreme anxiety with doctors, I don't think she would cooperate at all!  Not really sure how to change or help this and if you have suggestions - I'm open to hearing them!

So, she had blood drawn.  Don't you know that this helped greatly with her fear of being at the doctor's office?!  I held her down while she cried and cried.  I hate doing that.  I sang to her and tried to make it better, but not sure I helped at all.  The blood drawn would be checked for a number of things including leukemia, thyroid problems, celiac, cholesterol, blood sugar, etc.  That's all that I remember.  She told me the results would be in by the end of the week.

When I got a phone call this morning - I knew.  I knew that something was wrong.  Dr. L (who came in on her day off to go over the results and talk with me) told me the good news first.  She does not have leukemia.  Praise God!  This is still something she will be tested for yearly, but for now it's clear.  Her thyroid looks good too.  All of these screens are done because children with Ds are at a higher risk of having complications in a variety of areas.  Can you guess what is coming next?  I really didn't think she would have this.

Celiac disease.

My sweet baby has celiac disease.  She tested positive for the antibodies.  (For those in the know, her IGA was normal so there is a lesser chance of this being a "false positive".)  The next step is a biopsy of her intestines.  This may take several months to schedule.  We'll just wait and see.  Until then, we aren't to change anything in regards to diet so that they can get accurate results.

This is an autoimmune disease.  Since we already have one child with an autoimmune disease (diabetes), there is a risk for all our children and Dr L wants all of them tested for celiac.  (Needless to say they were not thrilled to hear that!)

Dr L told me to stay calm and not panic.  This isn't as bad as some of the things we have dealt with.  I know I will try not to think about it.  It will be a big change though - big.  And I'm guessing expensive?  Just seems like one more loss of normal when it comes to food.

So, it looks like I'm still in continuing education when it comes to getting the medical degree.  (Just kidding here!)  More to learn and process and manage.  More reason to fall to my knees and lean on the only One who can give us the strength to deal with this.  This is no surprise to God and I know He will use it for His good and His glory - if I will let Him.  He is the giver of all good things.  While I don't view this as a good thing, I know that He can use to for good in my life, in my family's life and in the lives of those around us.

Please pray for us as we walk yet another new path.  If you have advice or suggestions - please share.

With love



  1. Testing the comment feature as several people have emailed to say it wasn't working. :-( Hoping that whatever was going on is fixed!


  2. Hi Leslie! I was catching up on your happenings and learned about this new challenge. I can't imagine how you're feeling to think of one more thing to manage. It seems strange for Eliana to test positive for celiac disease if she doesn't have any symptoms. I haven't seen where you've mentioned problems with her digestion. Usually they test for celiac's disease if the child has chronic loose bowels, excessive foul smelling gas, abdominal pain and bloating. If she hasn't any of these symptoms, then further testing may show that she doesn't have it after all.
    Justin has never been tested for celiac's disease, but several of his thyroid tests showed that his TSH was boderline high. Then several months ago his TSH was a bit higher than it had been, and his ped wanted to start him on thyroid med. I wouldn't give it to him, because he had none of the symptoms of being hypothryroid and his growth & learning have been terrific. So, he sent us to a pediatric endrocrinologist, who did more comprehensive thyroid testing (more bloodwork, UGH) and said his thyroid is fine! His pediatrician jumped to conclusions based on his TSH level, but there are other levels to check and then look at how they relate to each other.
    Be that as it may, I try to keep sugar, diary, and wheat out of Justin's diet as much as possible because I think what he eats has some effect on how strong his immune system is. And for Justin, a common cold or virus usually triggers asthma trouble, so I try to give his immune system every advantage that I can. If and when you need it, I can share some recipes and/or ideas for gluten free foods. But I'm praying that you won't need it! Love, Anna

  3. Praying for peace, Leslie. It sounds like Eliana doesn't have symptoms right now, and that is a blessing. I too wonder (with Anna K) whether this is accurate. Anyway, I'm sure it is overwhelming to consider the dietary requirements and pray for God's peace and direction and wisdom as you pursue additional information.


  4. Leslie,

    I'm so sorry to hear this. I literally groaned outloud when I got to the diagnosis part. One more thing! Yet, as you said, God is good and He has allowed this and will use it for good. So, we trust Him. What else can we do? I know it means a whole new learning curve for you and the possibility of big changes for your whole family. Praying for you as you continue to walk the journey God has mapped for you.

    Pam in SE MI


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