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Thursday, December 13, 2007

Allergist Update

This is going to be brief because it's way late and I need to go to sleep so I can be up in five hours.

Ami (Hallie's fab nanny) and I took Hallie to her allergist consult this afternoon. Our girl was a bit of a mess since she's been eating very poorly (basically we're back to pretty chronic post meal vomiting again, particularly if she's had more than 2 ounces of Stage 2s or more at any one sitting). She's not vomiting with her bottles (I will probably regret typing this later on today!), just with food. And this has nothing to do with choking on real solids, purees, or anything of that nature. This has been going on for three days now. It's probably related to her chronic constipation, which seems to have gotten considerably worse in the past couple of days. This could be related to the introduction of some real solids in her diet, but whatever it is, it has not been responding to the reglan or the Miralax. It finally responded to the Milk of Magnesia I gave her in the car today and by this evening the problem had (temporarily) gotten better, but the vomiting post meals, sadly, had not.

Anyway, on top of this, Hallie had refused to nap altogether this morning. She even refused to fall asleep in the car, which is uncharacteristic of Hallie, especially if she hasn't napped in a while. None of us are sure what's up with her.

We got to CHOP without incident and Hallie actually perked up a bit when she realized that we were going to let her wander around the waiting room. We put on her socks and shoes, unstrapped her from the stroller and off she went. She had a blast (and her first big poop blow out). She was psyched.

All things considered, we got in to see the doc pretty quickly. Hallie's weight (taken post poop, but with a dry diaper on) was 23 lbs. 11 ounces, so even if we subtract for her diaper, she seems to be holding her own on this count. That's a bit of a relief given how the eating is going.

The allergist was great: we avoided the awful pricking of scratch tests since they do little to confirm or deny a cow's milk allergy (which is apparently really hard to diagnose) and instead ended up devising an assessment plan based on diet. We'll try her on goat milk only for a week or so, eliminating all cow dairy from her diet. If this helps, we'll just stick with it. If it doesn't, we'll try soy. And if that does not help after a week or so, we'll try the super-duper-bring-us-to-the-brink-of-bankruptcy-especially-since-insurance-doesn't-cover-it elemental toddler formulas (either Neocate, Jr or Elecare). We have samples of both, thankfully (but sadly just enough for a few days worth of trials). If she hates it and refuses to eat (remember, on top of everything, Hallie is finicky about her formula and always has been), we'll back off since our doctor sanely considers that aggressive treatment (e.g., an NG tube to force her to take the elemental formulas) is NOT the way to go in Hallie's case. As the excellent doctor put it, Hallie has been through so much aggressive treatment already and that this simply does not seem to be worth it. The costs of an NG tube (given Hallie's issues with food aversions, extra-sensitive gag reflex, etc) are just too great and would probably result in a setback that is greater than any benefit we'd gain from it.

The other thing we'll try, if the goat milk alone doesn't do the trick, is backing off of the calories a bit. I do this with some trepidation given her eating patterns generally, but I do know that 27-30 calories/ounce in its own right can be hard for her system to handle and that this could indeed be contributing to the constipation issue.

Anyway, this gives us a plan for the next few weeks, and hopefully something will help our poor tummy-ache ridden little girl. We've got to get her little system moving again and we need to get through this latest bump in the road. She is otherwise doing so well (her babbling is picking up more now that she's worked on her walking to the point that she can walk with toys, practically run across the living room even when it's debris-strewn, and happily stoops and picks things up without sitting down). And she's in the process of perfecting her climbing, too: she's gotten up and down off of the couch several times today and on Monday climbed onto the table next to the couch so that she could look out (and slobber on) the living room window. Sort of frightening, but a milestone nonetheless). If only we could get her GI tract in order I suspect we'll be a much happier trio. Meanwhile, we're all emotionally fragile, but through it all, I need to and do keep reminding myself how far she's come in the past year and a half and how well she's doing. Sometimes I feel like I'm being greedy, wanting to get all this worked out too, and that I should just count my blessings and be satisfied. But then I see how much her tummy hurts her, and I can't allow myself to settle for that. It's not really a matter of us hating the vomiting and all of the cleanup it entails. Nor is it our emotional and psychological health that's the real issue (though this, we do need to remind ourselves, does count for something and is important to our family as a whole). It's our girl that is the important one here, and if our girl isn't happy, nobody's happy.

And with that, I MUST get to bed. Hopefully things will pick up and head in the right direction in the morning. I've got my kid's prune juice miralax cocktail chilling in the fridge (ICK...prune juice always reminds me of a section in Goodbye Columbus by Philip Roth that I'd rather forget; plus, it has a bit too much of a ring of a Jewish grandfather's breakfast---specifically my zaydeh's breakfast----for my comfort) and I'm ready to turn in!

6 comments:

Sarah said...

First, I LOVE the video of Hallie wiggling off of the couch. I laughed out loud!

Second, I buy Neocate on eBay as my insurance does not cover it, either. I have gotten some pretty good deals and basically spend about $25 a can, which is about what you would spend on Nutramigen or is comparible to the amount you are spending on goat's milk.

I also understand the pain that Hallie is in. That's what I always try to explain to the docs. I don't care about cleaning vomit. I care about the fact that he suffers!

I hope you got some sleep :)

Trisha said...

Sorry to hear that you're back to vomit-fest. Not fun. Milk of Magnesia was the only thing that helped with Caleb's constipation. Once we got him "cleared out" he only needed about 1cc per day to keep him regular. (I am sure he'd be thrilled if he knew I am telling you this!) Also, have they considered doing a RAST test to see what she allergic to? It's a simple blood test and they can choose what things they think the child may be allergic to (foods or environmental). Caleb just had one done for milk, eggs, and soy. Just a thought. I hope she can get back on some sort of track for you. It's so sad to see them struggle with eating. Sounds like her development is coming along though! And her weight is awesome!

Heidi said...

Abby, what you said about feeling greedy really resonates with me! :) You do a beautiful job of expressing your gratitude of how far Hallie has come, but that doesn't mean you should in any way feel greedy about wanting more... maybe especially because of what they've endured to get to this point, it makes us fight that much harder for anything and everything that will help our little ones thrive. You are tireless advocates for her and I admire that.

I hope you'll see improvement with these adjustments for her.

Anne, Eliza Grace's mom said...

So I was ordering Eliza's Resource JFK from Walgreens.com and guess what they sell???? Goat Milk Soap! I know you will be ordering some as soon as you read this Abby!

abby said...

Actually, I already am a long-time user of Goat Milk soap--it's very yummy feeling. And one of the CRNPs in Hallie's NICU makes us some homemade soap that's amazing (Thank you, Dagmar, if you read this!)

Anne, Eliza Grace's mom said...

Really Abby, you need to think of moving to Saba. We have more goats than we know what to do with. One of the big election year issues is the "goat problem." The police actually "arrest" stray goats and hold them in a pen next to the station until the owner comes to collect the errant goat (I could not possibly make this stuff up) You could start "Hallie's Goat Farm" and start making your own milk, yogurt, cheese and soap!