Holy Freaking Slap In The Face

We moved to California three years ago in 2010.  We finally got insurance out here the middle of 2011 and it happened to be with a company that we had used previously in Florida several years prior (back in 2006-2007).  I recently discovered that on this company’s website they have records of dr’s visits and lab results even from way back in 2006.  What is interesting about this is that Angelina started seeing an allergist in 2006 when her pediatrician finally believed me that she had allergies and ran some blood tests that came back positive for several different allergies.  We finally got a referral to see an allergy/immunology doctor.  Angelina was three years old at the time.  The allergist wanted to find out what was going on with Angelina because she had severe eczema, all of these recently diagnosed allergies and asthma.  So they ran a ton of blood work, which was pure torture with a three year old and the fact that a lot of the tests were not very common so the phlebotomist had to actually pull out their reference books to ensure that she was collecting the blood in the proper containers and prepping it properly.

So, long story short I discovered these old lab results and started looking through them and noticed a few abnormal results on some tests that I was not familiar with.  So, in typical fashion, I googled.  And what I have found has my head reeling.  Angelina has had markers for Type 1 diabetes since she was at least 3.  A quick google and even looking up the specific tests on the Quest Diagnostics website doesn’t give much specific information about what these abnormal test results mean except for a sort of obscure reference to “autoimmune conditions”, but it specifically mentions Lupus, which she doesn’t have as far as we are aware.

So, since I love researching and came up sort of empty handed after my cursory search I decided to pull up the Diabetes Trial Net website to see if it lists the specific blood tests they do to screen for Type 1 autoantibodies and other things.  I very quickly found that they have a current clinical study going on called “Anti-CD3 mAb (Teplizumab) for Prevention Of Diabetes In Relatives At Risk For Type 1 Diabetes Mellitus”  with CD3 being one of the tests that she had abnormally high results on.  Another test that also had abnormally high results was CD8.   On the TrialNet site they have links to the NIDDK website and a quick search there for CD3 pulls up the following document: CLICK HERE.   Searching in that document gives me the chills as CD3 and CD8 come up with the following information:

“Discovery of Multiple Cellular Factors That
Contribute to Progression to Diabetes: The major
culprits in type 1 diabetes pathogenesis in rodents are
“helper” T cells (CD4+ T cells) that promote immune
system activity and/or cytotoxic T cells (CD8+ T cells)
that actually destroy beta cells. There is evidence
that this is also true for human type 1 diabetes,
because patients have responded to treatment with
therapeutic agents directed against T cell activity, such
as cyclosporine-A and anti-CD3 monoclonal antibody.
Nonetheless, there has been increasing appreciation
of the importance of other cellular players, notably
macrophages, dendritic cells, B cells, natural killer
(NK) cells, and NKT cells. Recent years have also
brought an increasing understanding at the molecular
level, particularly regarding the role of co-stimulatory
molecules that transmit either stimulatory or inhibitory
signals to T cells (e.g., CD28, CTLA-4, PD-1) and the
role of cytokines (e.g., type-1 and -2 interferons, IL-2,
IL-21, IL-15, IL-10, IL-17). However, more remains
to be learned, as scientists have not yet been able to
integrate the various cellular and molecular elements
into a coherent disease scenario. In particular, although
a number of candidate cells and molecules have been
identiied, there is no consensus on what agents
ultimately destroy the beta cells, perhaps because
different mechanisms come into play in different models
and in different patients. The discovery of multiple
factors that could play a role in type 1 diabetes is
important for people with the disease, as these
factors may represent additional targets for
therapeutic intervention.”

What also jumps out at me from all of this is the TrialNet has a study using ANTI-CD3 medications to help slow or prevent the onset of Type 1 Diabetes in “at risk” individuals.  Had we KNOWN about this abnormal result and what it might mean we could have possibly gotten involved with that study at some point and may not be dealing with Type 1 now!  Or at the very least would have been better informed and helped doing science-y things to help other people.  Something that I do find quite interesting about all of this though is that Angelina had these “markers” at least by age 3 and she was not diagnosed with Type 1 until age 9, six and a half years after those lab tests were taken.

I have been asked several times if there was ever a time that stood out as being the trigger for her type 1 and I always tell people that I would drive myself crazy if I tried to figure it out because she has so many medical conditions and has been so ill so many times over her short life that it would be impossible to even try to guess.  And now that I know that those CD8 destroyer cells were there at age 3 I am even more at a loss because she had only experienced minor illnesses (ear infections mostly, and her eczema) up until age two and a half when we had to put her in public daycare.  Those lab tests were taken 8 months after she started daycare and got her first major illness (stomach virus that lasted most of a week).

I’m really angry.  I know none of this changes anything now and I really try not to dwell on the “what if’s” with her diabetes because it doesn’t change the present.  But my heart is broken and I feel incredibly betrayed by the medical community that NO ONE CAUGHT THIS!  I don’t understand why a doctor would run these specific tests if they weren’t going to address any abnormal results.  We’re not talking just your normal CBC here that the dr might overlook your sodium levels are a little high.  We’re talking about some very specific tests that an abnormal result seems to give you a pretty specific picture of what is going on and WHY DIDN’T ANYONE TELL ME!?!?


P.S. – the other lab result that was abnormal was something called “Complement C4” which I did not find in the NIDDK document but an NIH document says “C3 and C4 are the most commonly measured complement components. Complement activity may be measured to determine how severe a disease is or if treatment is working.

A complement test may be used to monitor patients with an autoimmune disorder. For example, patients with active lupus erythematosus may have lower-than-normal levels of the complement proteins C3 and C4.

Complement activity varies throughout the body. For example, in patients with rheumatoid arthritis, complement activity may be normal or higher-than-normal in the blood, but much lower-than-normal in the joint fluid.”

From the Quest Labs website about the test:”Clinical Significance
Decreased C4 level is associated with acute systemic lupus erythematosis, glomerulonephritis, immune complex disease, cryoglobulinemia, congenital C4 deficiency and generalized autoimmune disease.”  Further information found in this document with multiple references to taht specific Complement C4 being often associated with Lupus.  I really, really, really hope not.