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.