17 April 2012

An Update on E

Last year we had a caring bridge website for E.  With all his issues, we had plenty to share on a regular basis, but I stopped doing it when he seemed to be getting better.  Well, here we are, almost exactly a year after his first trip to the hospital, and I have a new update.  He hasn't been gaining weight again.  It has now been over a month with no weight gain.  He had climbed very slowly from the 3% to almost 15% in about 6 months time.  Now he is back down to 7%.  He's still 20lbs, and I am just hoping he doesn't drop below that because I had this whole ceremonious event where I threw out his crappy infant carseat and graduated him to a convertible one......lol.  It isn't unheard of for a 13 month old to not gain or even lose as they become more active.  His activity level really hasn't changed much in the past two months.  He takes a couple steps, he stands, he crawls mostly.  He plays with C.  His development seems normal, except for maybe his speech, but it's really early to tell for that.

We decided to switch GI doctors...ours were not being helpful, our appointments were three months apart and always lasted at least 2-3 hours.  But no tests were ever done to check his progress, severity of the reflux, not allergy tests...nothing.  At the very first appointment, when I told him E had MSPI, he told me he didn't believe food intolerances existed.  At that point, I didn't know enough to question what he was saying.  Instead, I was humiliated and intimidated.  At our last appointment in March, the doctor told us, word for word, that E would never grow big and strong unless he was eating soy and dairy.  I felt like he was saying that I wouldn't have a big tough football player unless I fed my kid crap.  Because, seriously, you don't need soy and dairy anyway.  E's food issues have taken our entire family on an incredible road to eating whole, healthy, and happy diets.  Happy in that I don't get bloated, I don't have indigestion or stomach pains, and we are losing weight.  It's a wonderful thing...but I digress.....(to read more about that, click here)

So anyway, we got a referral from our pedi and were able to get an appointment in just two weeks (unheard of in the GERD world), and saw the new doctor Monday.  He was wonderful!  He was kind, he listened, we actually talked to him and not some random other ten people first.  After asking us questions (and by the way, he got E's info from Children's before our appointment and knew what was going on), he decided E should have an upper endoscopy with biopsies of his esophagus, stomach, and upper intestines, and a lower flex-sigmoidoscopy to check for damage in the lower tract.  And we are scheduled for April 27th.  It's crazy how fast...after how slow.....it's just overwhelming.  In a good way.  So in the week and a half between, we are giving E little bits of dairy, soy, and wheat.  If eosinophils (cells your body releases to fight allergies) show up in the biopsies, we know his food intolerances are actually allergies.  And the reflux would then be a product of that.  Either way, that question should be answered for us.  Any course of action that would take E off the waaay too high of a dose of prevacid he needs to fight the reflux would be wonderful.  Especially since now we are only able to get the name brand, and it costs so much.  It is totally worth it to have him able to sleep and eat, but if there's a better way to control it all, especially if medication wasn't needed...wow that would be amazing.  Pipe dream?  Maybe...but who cares!  It's a good dream to have.

I know a lot of people followed his progress last year, and I am so grateful for it.  Any prayers or encouragement is so welcome.  Thank you friends!

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