Wednesday, May 27, 2009

The missing piece

Have you ever tried to put together a jigsaw puzzle, gotten really close to finishing it and found that you had lost a piece? The cat drug it away or whatever. That’s where I am at with regard to Elliot’s medical conditions. We have no diagnosis and we keep getting referred to this specialist and that specialist. It’s becoming so infuriating that I’m ready to drive over a cliff. No one has a definitive answer. My child has liver fibrosis (yah, among other things) and that’s nothing to shake a stick at.

And me? I have given up on the Internet and now go straight to medical texts. The Internet can scare a person…scare them because it leaves out some of the fine print…the print that only someone with a medical degree can understand.

The Internet makes a person try to read between the lines and that, I have found, is detrimental to my own health!

It is scary just how much I understand. But really, I am no physician – just a mother with extremely good gut instinct. Something is wrong and I cannot sit still until we figure it out.

I pulled all of Elliot’s medical history yesterday and tried to make some additional sense of it. What’s also scary is just how much our past pediatrician has missed. Better leave that one alone.

I have his MRI of the brain and the spine. I have his neurologist’s dictation; the dictation of his GI; the dictation of the geneticist; the pulmonology reports; his never ending CBCs; the thyroid antibody tests; pathology of his liver…of his gallbladder which he no longer has…I have it all! What I do not have is an answer.

Tomorrow we will head to rheumatology, yet another sub-specialty in internal medicine and pediatrics. I have my list. You know, the list of potential syndromes…potential blood work that needs to be completed…potential diagnoses. This doc is bound to think that I am ludicrous. I’m not. Thus far, my drive and gut instinct has gotten me a hell of a lot further than the pediatrician ever went.

I am beginning to think that all of the issues are somehow linked. It’s not his Down syndrome. It is something else. I’m nearly convinced.

What’s interesting is that Down syndrome is “cake.” If it were only Down syndrome, I’d be jumping for flipping joy. But again, I think it is something very, very complex…very, very rare…and very, very Elliot: my dear medical mystery of a boy! God love him.

4 comments:

Mommy to those Special Ks said...

*sigh* Praying that someone gets on the ball and figures it out soon!

ParkerMama said...

Girl, why don't you call me, or I can call you.

Email me.

My name is Sarah said...

This is Joyce. That is exactly what I used to say about Sarah, Down syndrome is the least of our worries. As a matter of fact I would go for weeks and not even think about the Ds with all the medical worries. Keep on listening to your instincts. They are usually correct. I pray for a reasonable explanation soon for you and your dear Elliot.

Jessica said...

I hope you guys get some answers soon! Hang in there! HUGS!