Tuesday, December 7, 2010

Good News, Bad News.

Good news first:

Ava's blood test was negative for the igE factor for milk and eggs. In other words, she does not have a true, a therefore lifelong, allergy to milk or eggs. For that matter, she isn't allergic to peanuts, shellfish, or anything else. WHEW!!!!

Bad news:

We're being referred to a pediatric gastroenterologist at Dell Children's Hospital. The doctor thinks - and perhaps the bloodwork suggests - that Ava has one of two things. Either she has FPIES, the more severe of the two he suspects, which is also known as Food Protein Induced Enteropathy Syndrome, or she has Dietary Induced Enteropathy Syndrome (I don't particularly like this acronym...). While both mean that at this point in time her stomach cannot digest the proteins in certain foods, which causes a gastrointestinal reaction, FPIES is a more severe form, which additionally causes a sharp decrease in blood pressure and lethargy. While I feel like it's more likely to be the latter - the dietary-induced (though since both are due to food proteins, these names really don't make much sense to me...)- since she doesn't seem to be showing changes in temperament or energy levels, if it does happen to be FPIES, it could be severe enough that if she consumes dairy or egg products, she could potentially end up in the hospital due to the drop in her blood pressure. Needless to say, despite my relative confidence that it's the less severe form, mama is a nervous wreck.

There's more. Dell Children's has the only pediatric GI doc in Austin, and, ridiculously, they also don't take our insurance. W.T.F. Are you kidding me?! They're a nationally renowned children's medical hub, and they don't take our (great!) insurance?!? I spent the whole of this day on the phone with a.) our insurance, b.) the allergist referring us, and c.) GI specialists in Central Texas who take our particular insurance, hoping one will see a not quite 1-year-old.

Which brings me to...the horror that is this doctor's visit. While I have yet to find a doctor and cannot confirm that this is what's going to happen, there is a high chance that the reason for the appointment will be a consult so that they can ultimately do an endoscopy on my baby. Yes, they may have to put A under general anesthesia, insert a tube down her tiny baby throat and into her little tiny baby belly, and do a biopsy. And THAT, my friends, is more than this mama can take :(

Of course if it is ABSOLUTELY necessary and critical, I will allow it - I would do anything for her. But in that anything is included that I will protect her and shelter her from anything and everything within my power, and if there is any other way they can go about this, they're not getting near my baby with a scope.

I'm really starting to hate Tuesdays :(

Anyone with experience with these kinds of things? Ever had your baby put under? Know of any ped. GI specs in Central Texas who see kids and are awesome? Know anything about either of these potential conditions? Have Dell Children's-accepted insurance and care to marry me so I can have Ava seen there by the best? Ok, ok, kidding about that last one...kind of. Either way, if you have any advice, I'm all ears!


  1. i've got y'all in my thoughts and prayers, and you know baby butterbean and i will be right there with y'all if you need us to be!

  2. I'm so sorry mama, you are definitely in my thoughts and prayers! I hope you find a good specialist!

  3. Praying for you and your precious Ava...

  4. I found your blog a while back and have enjoyed reading it. I just wanted to give you some encouragement as you go through this testing. My son has had undiagnosed pain while sitting for 10 months now. We have been going through tons of tests with the GI doctor (and will now being seeing a neurologist) including the one that your daughter will need. While it is scary, it is a very quick procedure. The general anesthesia is always a scary thing for any mama, but it is a blessing to have you child not remember what they just went through (trust me, this week my son had to have a pH probe placed down his throat without sedation and I thought I was going to pass out it was so awful to see him scream). I hope they figure things out soon. I will pray for you and your daughter.

  5. What a sucky Tuesday for you and Ava. I'm super glad that she won't have any allergies to those foods forever, but what a scary downside. Houston's medical center is FANTASTIC and has loads of doctors that could maybe help. I'm sure there would be one SOMEWHERE that would take your insurance and be able to help you both. Hopefully, she won't have to go under general anesthesia, that's terrifying to me too.

    Chin up, something will happen and this will work itself out. We'll all be thinking of you!

  6. You're all in our thoughts and prayers. I sincerely hope everything works itself out to the benefit and ultimate good health of Ava. {{{Hugs}}}

  7. Great news that Ava doesn't have any true allergies!

    We're thinking about you and praying for a quick resolution to the insurance issue and any testing that needs to be done.

    Try not to worry too much!

  8. Being a sufferer of allergies my whole life (and being lactose intolerant) and can truly say I am SO happy A isn't allergic to anything! Hopefully she'll grow out of her stomach issues in the next couple of months.

    I would seriously cry with you, though, if Ava has to be put out for a procedure. I wouldn't be able to see Logan put under, and it's hard enough to watch other peoples' babies go through something so traumatic (more us moms then our babies.)

    Keep your head up! You've got a great support system!

  9. awww, sucks that she might be suffering from one of those syndromes! i'm hoping for the best for her and it does suck w/the whole insurance thing, its all business tho =( good luck w/the doctor search!

  10. So I just caught up on your blog. I didn't know I was so behind! First, I am so glad that Ava is alright after the choking incident. I can't even imagine how scary that must have been for you. You deserve major props for doing what needed to be done!! Second, I am sorry you are going through all of this hassle with doctors and insurance. I really hope she doesn't need an endoscopy. I've had one done but it's a lot different when it's your baby!

    On a lighter note, I love the birthday party theme you chose! I saw that one and wished they had a boy version. I almost got a personalized banner, then decided against it. I did get a personalized centerpiece though! I can't believe their birthdays are in a couple weeks!!!

  11. I'm catching up on blogs tonight, and Oh.My.Gosh!! Girl, you need a break...to keep you blood pressure from going though the roof!! I'm so sorry to hear that Ava's issues are still up in the air. At least you can cross off the allergies; that's a relief.
    Also, Bryson has had to see a Pedi GI and I don't know what insurance you have, but we have BCBS and oddly enough, the Internal Medicine Group that the Dr is under (DHAT) has completely dropped them until they can work out an agreement. So maybe that's the case and it's only for a few months?

    Also, way to go for stepping up and not only KNOWING what to do, but acting quickly when Ava was choking. SO scary. Soooo fortunate that you were prepared!!

    Hope you can get a little break and have a little "me" time soon!! :)


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