Brief health update

I have 3 half-written posts that are waiting to be finished, so hopefully this one will actually make it to the part where I hit "Publish Post". LOL

The Infectious Disease doctor finally called me last night. (Which was fabulous since their office has had Lila's lab results since Monday. But whatever. )

Lila does indeed have a suppressed immune system, which we already knew. She has low IgM's and she is also on the very low end of normal range on the rest of the immunoglobulins: IgA, IgG, IgE and IgD.

IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances.

The doctor said that she is concerned about Lila's IgM results and would like to re-test her in a month. I never asked why she was concerned and she never said. FYI- if you google low IgM, which of course I did, the first three results are IgM, IgM blood test, and IgM leukemia.

I am doing some research on my own and reaching out to some of our DS community members that unfortunately have experience with leukemia and their kids with DS. Statistics show that one in every 95 children with Down Syndrome develops leukemia so we know that Lila is at a higher risk than people without Down Syndrome. That being said, Lila has had repeated infections but lacks any of the other symptoms that seem to go along with leukemia.

We are still waiting on the results from 2 more lab tests- oxidative burst and natural killer cells. As soon as I have all of the results I will fax them to Lila's hematologist and see what she thinks.

In the meantime, we are on day 20 of a gluten-free diet for Lila and we will see if that gives her immune system a boost. We haven't noticed any changes at home but it's early in the game. We still feel like it was the best decision for Lila and thankfully the decision is supported by her teachers, therapists and doctors.

Whatever is going on in her little body, I am thankful that we have faith in a God that loves Lila even more than we do. The fact that she is alive today is nothing short of a miracle and we know there is a beautiful purpose for her life.

Please say a little prayer for her, that she will be well and that we will find definitive answers about what is going on in her little body very soon.




  1. Thanks for the update! We'll be praying for that little sweetie pie!

  2. thanks for the update! We will keep her in our prayers! she is so cute! Hang in there!

  3. Left a message on FB for you and wanted to touch base here too.Zoey finished leukemia treatment a year and a half ago so I guess you might say that that puts me in the experienced category.So, please feel free to message me or email me anytime.

    One thing I did want to tell you,that might ease your mind, is that I have learned over the last few years, that many of our children that sport the extra chromosome,have low immune systems and have no greater risk in developing leukemia,what so ever.That is just how their bodies roll.I have seen many children with DS undergo needless bone marrow biopsies because of low immune systems,to only yield the answer,that I know,we all hate and that is this"Our kids like to do things"differently".

    Take a deep breath,as hard as I know that is and maybe we will talk soon.

  4. sending you guys all of my positive thoughts and prayers. I'm doing some research on the things you posted too and will send you any articles I find. Hang in there you are one strong momma and regardless of what this whole thing turns out to be, I know miss Lila is in good hands with you, nick, and the big guy upstairs.

    Love you!


  5. Sending love for Lila and you. Hang in there! I hope you have some answers soon. You will all be in my thoughts and prayers. xo

  6. Saying lots of prayers for Lila...I will ask around here...I know of one family that dealt with that yucky L word. Hang in there! PS - love, love, love, love, love that picture of her...out of control cute!!! xoxo

  7. Ugh. I can only imagine what restraint you are using before totally freaking out. As you know, there are so many many possibilities that could explain the test results. Parents with special needs kids are realistic, which makes us look at all kinds of things we don't want to know about.

    Praying for a solution that doesn't involve the letter "L".

  8. Saying many prayers for you and for little Lila! Love the photo!

  9. Wow, I am catching up on your blog and this post left me with tears. Please know that I am praying for Lila.