Variety? No thanks.

We have finally built up a tiny litte menu for Brynn.  Her safe foods are: pears, sweet potatoes, white potatoes, blueberries and now strawberries!!  We can also use sunflower oil and sunflower seed butter for cooking (however still need a grain to REALLY make something!!).  Great right? UGH. She has now decided to either gag and throw up while eating (texture issues) or just skip eating and throw the food on the floor.  There were 2 days last week where I decreased the amount of formula she took in because I was thinking she could actually have a little meal and some snacks in between the meals. But no, we are back up to the full amount again.  I guess we just keep trying and hope this is just a phase!!

Another thing I wanted to vent about is doctors.  The kids' pediatrician that they have both ALWAYS seen, pretty much from birth, is leaving the clinic we go to.  Trust me, I dug for info and found out where he was going, hoping it was just another local clinic, because we would have no problem switching clinics.  Unfortunately, he is going somewhere a little too far.  =(  When I first came to him with Brynn's diagnosis, he had not heard of it.  I was prepared for that, so brought him some info that our allergist had given us and had gladly accepted the info and appeared to be willing to learn along side of us.  Now that he is leaving, we have been forced to find a new pediatrician.  I did a little research and found one on the clinic's website and looked at her profile.  It said her special interests were food allergies and chronic illnesses.  JACKPOT!!! I was so excited and I thought maybe this was a blessing in disquise.  SO WRONG.  We saw her for Brynn's 1 yr appt and it was alright....nothing what I was hoping for, but after much thought, figured we'd deal with the situation and manage without a ped on board with the FPIES diagnosis.  She questioned me...no no....she DRILLED me on a couple different topics, one of them being, why on Earth I would bring Brynn to New Jersey to see a doctor.  She asked me numerous times how that appt would benefit Brynn and I explained to her that Dr J could possibly test to find out what foods would trigger a reaction for Brynn and maybe give us some direction in what we were supposed to do with Brynn's condition.  Why WOULDN'T we go?  If seeing this dr could in any way help our daughter, why not?  She just sort of shrugged and moved on. 

Fast forward to a couple weeks ago.  Our daycare needed some papers filled out for Brynn and her special diet so Danny brought them to the clinic, asking the receptionist to give them to our old doctor.  Danny's company also had some papers they wanted filled out just in case Danny would have to take some time off due to Brynn's health.  I picked them up a few days later and the receptionist had given them to the NEW ped to fill out.  So I looked what she wrote...on the daycare forms, questions were skipped, and it was just half-ass filled out.  When I got to the papers for Danny's work, there was a post-it on it reading "this needs to be filled out by the allergist or GI specialist, not me".  BULL.  Luckily, we had the allergist appt so I just brought the papers to him and he filled them out.  That pushed me over the edge.  I'm not looking for a dr that knows everything about FPIES, all I'm looking for right now is someone who isn't going to blow me off and say it's not real or it's no big deal.  Someone who will listen when I say Brynn can't have a specific medicine because of a previous FPIES reaction to it.  So if anyone knows of a great ped in the surrounding areas, please let me know! I friend of mine mentioned one doctor, and we plan on seeing her for the next appt. Wish us luck!

What to trial next? OATS???? That would be a HUGE pass for us, but like I said in a previous post, it could potentially be a HUGE fail as well.  Hmmmm