Updates ....coming I promise

I don't have any really great reasons why I've been awful, really just a complete and utter break-down in the sleep departement from our little ms. Erica since a little after her first birthday (coincidendally--or not around the same time she went off her hypoallergenic formula). I'm talking serious sleep issues --Up 2-4 X a night. Last week we finally broke the 3+ hours @ a time and went down to just a few 5 to 20 min wakings (although we had a repeat of a 2 x up plus a 3rd 3 hr awake performance last night).

The Dr's think that the same thing causing lack of sleep was / is causing a few other things that they can't quite put their finger on - so on no sleep we have been through the ringer on test for that poor girl ( we are talking EEG, MRI, 24+hr EEG, Upper GI, Scope, Swallow Study, Consults @ Cincy.... etc..) What they've discovered so far is good, nothing really serious, a couple small things but nothing telling them why, really just more of the symptoms of whatever it is (swollen stuff in the throat / upper airway i.e. arythenoids / vocal cords etc...)


Long story (semi) short, memorial day weekend she started a head movement, I thought it was related to GI issues, waited until Tues to take her in. -- She did it so often that every doctor or nurse that came into contact with her for a month or so saw this movement. (a few...that I know well so they could say this called it the "Erica show" b/c it would happen sooo frequently) The Dr's thought / feared it could be neurological (i.e. tic or seizures) then finally came around to GI/allergy thinking after ruling out all things scary by lots of test w/ wires (EEG's / Sleep study / MRI). The Neruo was pretty confident what she saw in her office was a seizure hence the complete neuro work-up.

Now that the scary stuff is ruled out - the Dr's are in pretty strong agreement that they need to put their finger on what was causing major enough pain to cause a involuntary movement and still causing enough problems that she has swelling & failed a swallow study a couple weeks ago (they think that her vocal cords are swollen enough to be de-sensitized and therefore don't close properly). so...She needs to pass some GI / ENT test or at least stop showing little symptoms then we can move on!


At this point we just want it to be over and are soo soo soo thankful its nothing serious or unmanageable (i.e. seizures). Likely she will end up with a EE or food allergy & sensitivity or Bad reflux diagnosis / all I can deal with easily w/ diet changes and most of which will get much much better with age. She had stopped the head tics / involuntary movement / suspect seizures completely....... coincidentally (or not) 3 weeks after I cut out 100% of dairy (on my own mind you) and went extremely low gluten...the allergy test does not show a dairy allergy but... it is the #1 irritant of EE so we shall see.


The little diva was set to have it all behind her two weeks ago and we were going to call it GI issues / flared up by diet and a bad virus but then that diva goes and fails her swallow study.... the one that was going to finally put all Dr's minds at ease that it was nothing serious so..... we now have one more test, a FESS that they will do early Sept. completely non invasive --- but she will not be happy, they put a camera down her nose, while she is awake to watch what happens when she swallows.


This poor little girl has got so many test in a 2 month period!! the good news is she handles them really really well (prob better than me) and for the most part (w/ the exception being a couple of the GI ones) they have all been completely negative (or normal). She is happy happy happy and handles no sleep much better than mommy or daddy ;).