Helpless

The nurse from the GI clinic called a little while ago with results from yesterday’s blood draw (which I had neglected to write about here).  She said that his AST and ALT levels are still elevated (145 and 40, respectively).  The AST does seem to be going up, but the ALT seems to be going down, according to the numbers she gave me yesterday when she said we had to go for another draw:  AST/ALT 101/81 on 8/24, and 116/64 on 9/6.  Not that this means anything to me, other than that we all still know nothing.  They are referring us to a liver specialist in Cincinnati (!!).  We have to do another bout with formula, 72 hours this time, and then redraw blood again.

I’m stumped.  Clearly, if he really has an issue that needs addressing, yes, by all means, let’s address it.  I don’t want to miss something that would lead to…what, liver failure?  Jesus.  But he’s still gaining weight and growing, generally happy, and does not seem ill to me.  The only thing that is not textbook normal is some green poop and maybe some excess gas (and these AST & ALT levels, I suppose).  I didn’t even think to ask while I had the nurse on the phone if I should bother continuing with the dairy and soy elimination or if these tests instead indicate something physiological that my diet won’t affect.  I called back and left a message, but I’m guessing I won’t hear until tomorrow or maybe even Friday.  They even said that the referrals aren’t quick, so it may be weeks before we see the specialist.  Does that speak to the assumed urgency?  If it’s not urgent, then what the fuck is the point of all this?  Mike asked an interesting question – how would all of this be handled if we were uninsured?  I hate to think they’re just bilking Anthem, but hell if I really know what’s going on.  It’s almost a moot point.  I can’t NOT continue on with their recommendations, right?  I want to say that I don’t know how many more times I can hold my squirming, screaming child as they draw blood, but if I decline….what, they call Children Services on me?  I think I will have to just feel like an asshole no matter what I do.

This is wearing on me.  I can’t concentrate here at work.  I just want to go pick him up and hold him.  I’m so afraid they will tell me I have to stop breastfeeding, but I can’t understand how that would help.  What the fucking fuck?!?!!

I think I’m going to take the following two citations when we go to see the specialist – I don’t know if they are completely applicable, but I can’t help but feel like they’re trying to compare his bloodwork to a standard set by formula-fed babies.  I want to call bullshit, but I don’t know if I ‘d sleep any easier if I did.

Does breast feeding influence liver biochemistry?
Differences in serum biochemistry between breast-fed and formula-fed infants.

Any medical-background geeks out there who feel comfortable either reassuring me or encouraging me to push for more urgent investigation?  I am still so torn between not-gonna-worry-about-it and OMGCAN’TSTOPWORRYING.

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4 thoughts on “Helpless

  1. Mrs. Misfits says:

    I wish I had some insight for you. I just hope that there are answers soon. I cannot fathom that you should give up breastfeeding. I do know that it would kill me to have so many blood draws on the little one and I'd be a wreck at work, too. Hang in there for an answer and with him being happy and fat, this makes no sense at all.

  2. Thanks, Misfits. I am waiting on a return call to the message I left asking about dairy and soy in my diet versus giving him milk-based formula (seems either stupid or an overlooked contradiction on their part). Also need to ask if our pediatrician is getting all these updates. Frustrating, but hopefully will get some answers soon!

  3. Heather says:

    Sounds awful. If I were you I'd get hold of a good lactation consultant who could help or at least refer you to a sympathetic doctor. Breastfeeding is supposed to be the best, so I would stand firm on that. Good luck and I am thinking of you. Surviveandthrive.co.za

  4. Thank you, Heather! An LC is a good idea, too. If they really try to tell me to stop giving him breastmilk all together I will require a seriously detailed explanation as to why that would be best. Finally got a call back from the nurse and she is going to speak with the doctor again and get back to me later today with a sense of how potentially acute a problem these tests indicate.

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