A series of seemingly unrelated things

by Veronica on November 15, 2012

in Evelyn, Headfuck

Evelyn had a Paeds appointment this afternoon.

I just stopped and thought about that. That particular line has been the starting line of more blog posts than I care to imagine. You’d think with my super powers that I’d be able to think of new and exciting ways to let you know that Evie saw her doctor, but apparently, you’d be wrong.

In any case, she saw the Paediatrician today and he is stumped, but! not really. but! kind of. but! these things should not be related, but might be, but probably aren’t.

Evelyn appears to have contracted cytomegalovirus at some point, probably while she was in utero. I don’t know much about it and at this stage I’m a bit loathe to google too much, but I do know that it can cause seizures …

[Digression: If we go through all of this, this EVERYTHING, only to be told that she’s not having seizures, but now she has something that seemingly can cause seizures, I will be VERY ANNOYED if they decide that she IS actually seizing. Because it sure as hell looks like seizures still to me and “twitchy episodes” or “non-epileptic myoclonic episodes” as they’re technically being called does not have the same ring to it when I’m watching my daughters eyes roll into the back of her head while her face twitches.]

… because of calcification in the brain. Now, when Evie had her MRI at the grand old age of five and a half weeks, or around 10 days corrected, it didn’t show any calcification and common sense would tell you that there needs to be calcification first to cause the symptoms she is having. But common sense would also tell you that if she had had cytomegalovirus, then there would be both IgG and IgM antibodies in her blood and urine – whereas she only had IgG antibodies (inherited from me, because I’ve had it an am immune). BUT, trumping everything, they found DNA PCR in her urine (that’s what they told me, anyway), which is apparently a better diagnosis than just antibodies?

All of that is to say, I’m not sure how much of the IgG and IgM and PCR stuff you understand, goodness knows I’m barely wrapping my head around any of it.

End result: Evie has had cytomegalovirus and it might be the cause of some of her issues and it might not. She might be terribly broken, or she might be entirely asymptomatic. We just don’t know. She’s been referred off to have another hearing test and a brain ultrasound in any case, so we’ll see what those show.

Unrelated: She’s also having her adrenal function tested, because her skin continues to darken, making her look rather like she’s trying to hide a solarium habit from me. As a child of completely Caucasian parents, her nipples should be the darkest part of her torso, not the lightest. Again, it could be nothing, but darkening skin is an adrenal thing and we’re checking it.

I think she’s also having another liver test, among other things*

Also unrelated: Her development continues to suck. I mean that in the very nicest way of course. She’s just barely hitting some of her 6 week milestones now (at almost 16 weeks), and so I’ve got a handy dandy developmental chart to fill out before our next appointment in a month.

*I say tested, but we didn’t do the bloods today because it was all too much, and PACU was very busy taking blood from a poor screaming toddler. We’ll get the bloods done when she has her ultrasound next week.

Kate November 15, 2012 at 6:09 pm

I have no idea what a lot of that means, but it sounds scary 🙁

Thinking of you both as always, with so much love. xox

Pixie November 15, 2012 at 6:15 pm

Oh my stars. I can’t imagine what you are going through.

Sending much love and light

Xxxxxxxxx

Romina Garcia (@Martyrhood) November 15, 2012 at 6:24 pm

I think about your little one every day and send you as many positive vibes as I can. I know that probably means nothing to you, but just know that you are all in my thoughts. You are a very strong woman and I cannot imagine what strength you draw from to be the pillar that you are xx

Gerald Englebretsen November 15, 2012 at 6:58 pm

One day I hope that you will be able to look back on all this with a different viewpoint where it occupies the least amount in your consciousness because of a better ‘present’.
I hope that new ‘present’ arrives swiftly and that needed answers ease toward that as soon as possible.

Kirsty @ My Home Truths November 15, 2012 at 7:02 pm

So sorry that you still have no concrete answers for Evie – I really hope these upcoming tests yield the answers you all need.

Anne November 15, 2012 at 7:16 pm

That sounds like an awful lot to take in. I’ve never heard of cytomegalovirus before.

Hope the upcoming tests reveal some much-needed answers too.

Thinking of you all, especially your gorgeous little Miss.

(hug) xo

Cait November 15, 2012 at 7:18 pm

Just hugs

Cait xx

Marita November 15, 2012 at 7:44 pm

Hugs, so much love going your way.

Is some answers good or does it bring more questions?

Trish November 15, 2012 at 8:02 pm

Very scary answer – hoping the tests only bring good news that Evie ends up being entirely asymptomatic. I bet you are googling …and I’m sending positive vibes and thoughts.

Mrs Woog November 15, 2012 at 9:09 pm

From a mumma who googled her way into hysteria regarding a baby who was thought to have a zillion issues, please don’t! Love to all 5 of you, and your mum too xxx

Kelley @ magnetoboldtoo November 16, 2012 at 7:24 am

Onomatopoeia

Seriously.

X

Amy R November 16, 2012 at 1:43 pm

Dear Veronica,

I’d be happy to yell at someone(s) for you, if you think it would help. Or just make you feel better. Conversely, I’d be happy to let you pretend I’m the medical professionals and let you yell at me, if it would help.

Doctors are an interesting bunch, aren’t they? They think they have all the answers, but our observations tend to get brushed off. A little known tidbit is that when we lived in Oregon, Nick began having seizures after moving some E. Oregon hay for me. Over about 6 months time, I started to notice the pattern. The doctors swore up and down that an “allergy” cannot cause a seizure. Guess what can though? Certain types of sage are known to cause neuro issues in horses and people if ingested. While Nick wasn’t eating the hay, guess what he’s been allergic to all his life? Sage! Guess what was probably causing his seizures? The sage in the hay! He’s been absolutely fine and unreactive to hay since we moved to Georgia. Makes you go “Hmmmm” doesn’t it?

So, I get how frustrating it is to not have answers. Or for the potential answers to shift and change depending on the doctor. I’m very sorry you’re having to go through this, and we’re pulling for you and baby Evie here in the States.

However, if you need to just blast someone to feel better, I’m here. You know how to find me!

Jill November 16, 2012 at 3:55 pm

My husband had cytomegalovirus when he was in college. He ended up in the hospital for 2 weeks and missed almost an entire semester. He was a “big” boy back then. And from what he and my inlaws tell me, it knocked him on his ass.

Knowing how it affected him, I Can’t imagine how much it’s taking its toll on your sweet girl!

Marylin November 17, 2012 at 3:43 am

OH sweety. Fingers crossed all the problems are symptoms of this, and can be rectified! *hugs* and love as always xxx

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