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

Allergist appt today

We had an allergist appt today.  And holy crap, Brynn has gained almost 2 lbs!!  What a shocker!!  Wow, I love that EleCare!!  =)  He was happy with the way things were going, but wants us to re-trial a couple foods....CORN being one of them. Oh dear lord, I don't know if I can do that!  Corn is SO scary--it's in EVERYTHING.  I'm afraid that if we trial it again, the reaction will be worse than last time and it will just keep building until we hit a full-on FPIES reaction....the vomitting, lethargy...shock.  Terrifying.  But he said that he thinks the reason she may have been failing so many foods could have been because of the old formula she was on--and then underlying chronic inflammtion in the gut.  So...to trial corn or not to trial corn. 

He also wants to trial oats.  Another scary food for us.  It seems that rice and oats go hand in hand with so many other FPIES kids, but then again, all kids are different and no 2 kids react to all of the same foods.  Yikes.

After our appt, B and I met up with our friends, Kendall, Brian and Kara....Kara being another FPIES baby.  We went shopping at Trader Joes and Kara just wanted to keep hugging Brynn.  So cute! 

We trialled blueberries last week and they are a pass! YIPPIE!!  At first I had to peel them (Yes, very tedious, but well worth it) and now this week, she is eating them with the peelings.  She still spits out most of the skins, but at least I don't have to sit and peel every single one of them anymore!  She still doesn't have any teeth, so I cut them in fourths and she does great with them.

Think happy FPIES thoughts for us this week!!  Strawberries maybe???

PCRCD results.

Yes, that's right, we FINALLY got the results of Brynn's visit to the PCRCD in New Jersey!  I open the email from Dr J and see a chart with a whole bunch of words that I have never heard of and numbers that I have no clue what they mean. (SIGH).  At the bottom of the chart, this is what Dr J reports:

Relatively low production of counter-regulatory cytokines (sTNFRII and IL-10), but she is starting to produce TGF-b.


High IFN-g production with soy protein.


Th cell cytokine expression-relatively skewed to Th1 (IFN-g) in response to polyclonal T cell stimulant (SEB).


Responses to TLR agonists are within normal limits.

HUH???

So, I fwd the email to a good friend, a fellow FPIES mom, who has done a ton of research on
FPIES and ask her if she will de-code this for me.  I also emailed Dr J back and asked her a few
questions to help me understand what these results mean.  After reading their responses, as well
as staring at B's chart and googling TNF-a, IL-6, IL-1b, IL-10, IL-12p40, sTNFRII, TGF-b (the only
one I already knew, lol), CCL2, IGN-g.....Ok you get my drift.  I had to good pretty much everything.
 I then had to look at Brynn's specific corresponding number and figure out what the heck that meant.
 At the end of a few LONG days of emails and decoding, the results are as follows: 

We need to stay away from dairy, soy and wheat...the 3 things Dr J tested.  Soy being the most
 important one for her to stay away from.  Dr J said what isn't something we should trial anytime
 soon, but that somewhere down the road, she may be able to tolerate it. She is building TGF-b
 (counter-regulatory mechanisms)- just not quite enough for these foods, but shows that her body
is getting there (it does know what to do- it just needs more practice and time).

A juicy story

Wednesday afternoon, I picked up the kids and headed to my parents house for dinner, then Cody and I needed to leave for preschool.  My mom had a few pears, and we decided to use the juicer and give Brynn her first taste of juice!  Made it, put it in a sippy (something that she NEVER drinks from...she gets water/Elecare in her mouth and spits it out, then laughs) and she CHUGGED it.  Oh my goodness, it was so good to see her actually drink out of a sippy instead of just play with it.  One pear does not make much juice and I diluted it with some water as well, so she really didn't drink all that much.  But, she drank the entire amount that was in the sippy!  =) 

The next day, our daycare provided texted me and said that Brynn had pooped 4 times already (and it was only 10AM) and her bottom was so sore.  I started thinking....ok what the heck caused that??  She didn't have any new foods, she's not sick...hmmmm.  Then it hit me.  The pear juice.  Pears are a safe food, BUT the juicer has seen many different foods.  Apples being the main one.  My mom uses it to make Cody apple juice when he's there.  At first, I wasn't sure which food the cross-contamination was from, but after seeing Brynnie's bottom, I KNOW that is was from apples.  The blistery-hives were exactly the same as they were when we trialed apples 5-6 months ago.  Poor baby.  Kari (daycare) let her soak in the bath a couple times and let her roam free for 10 mins here, 10 mins there, which seemed to help the soreness. 

So, looks as though I need to buy a "Brynn-only juicer". 

Start of oral aversion?

While feeding Brynn tonight (white potato), I noticed her gagging quite a bit.  Finally, she spit some potato out, then threw up...twice.  It was definitely not 'reaction' vomit (it wasn't projectile, hitting the wall across the room, lol), but just 'normal' vomit.  I cleaned her up and brought her to the bathtub and she seemed totally fine after that.  We have seen her do this whole gagging thing while eating more often the past few weeks, but this is the first time it caused her to vomit.  I'm really hoping this isn't the start of oral aversion.  We will keep on going with the white potato for now and see what happens I guess.  I want to move on to a new food trial asap, but we'll have to wait a week or 2 to give her gut some time to heal from that stupid baby wipe. 

Reaction =(

First off, white potatoes are a definite pass!!  We've also tried Sunflower Oil as well and she is doing great with it! I attemted making some muffins today with potato flour....not so good. Oh well.  I'll try again at a later date.  I'm annoyed at all the flour and pear puree that I wasted today and had to throw away when the muffins didn't turn out. 

This afternoon, right around 2:30, I caught Brynn sucking on a baby wipe.  I'm still not sure how she got it (there were actually 3 sitting out by her) and I have no idea how long she was sucking on it.  We are normally really good about closing them and putting them up when we are done changing her.  Anyway, she looked at me like "this is disgusting" and was spitting.  I took them away immediately and warned Danny that we may be in trouble in a couple hours.  =/ 

Danny and Cody left for the next few hours and Brynn went down for a nap.  She woke up screaming and I knew something was wrong right away.  I figured it was time for her to eat anyway, maybe a bottle would calm her down. She drank her bottle, yelling a few times while doing so.  When it was gone, she began SCREAMING and throwing herself around.  I called Danny and told him to keep his phone handy. 

I spent the next 1.5 hrs trying to calm her down or comfort her in any way I could.  It was awful.  She started gagging and spit up a couple times. She wouldn't even let me hold her.  She just rolled around on the floor, scrunching up and stretching out over and over again.  I cleared the living room floor of toys so she wouldn't hurt herself on anything.  At this point, she started gagging again. I checked the diaper bag to make sure we had our ER letter and a couple extra outfits and diapers for her.  I had everything by the door, just waiting to head out.  I wasn't about to watch my little girl pass out again.  =(

Right at the 1.5 hour mark, she crawled over to me and wanted to be held.  She would still scream out every few minutes though.  We went and sat out on the deck and she seemed to be distracted by birds and cars going by, so we got our shoes on and went out to play.  Roxy (our dog) kept her entertained and she only screamed a couple more times and then appeared to be back to normal, playing, laughing...just seemed tired. 

I felt so helpless today. I wasn't in a panic like I have been in the past;  I was actually really calm.  It just SUCKS knowing there is NOTHING I could do to help.  My poor little girl is screaming in pain, and I can't do ANYTHING AT ALL to make it go away.  Absolutely HELPLESS.  I HATE FPIES. 

Birthday, probiotics and potato!

I've been slacking again, but we've had a very busy couple of weeks!  To start off, we began giving Brynn a probiotic a couple weeks ago and it was going really well. We increased it a little each day, until we got to 1/2 capsule.  Once we reached that amount, we started to see some symptoms, the main one being an average of 8-10 nasty diapers a day again.  We pulled the probiotic for 2 days, and then started it again, only doing a small amount.  Within a day, she was back to normal, diapers and all. Whew!  I think we'll stick with the small dose for awhile now and when we DO increase it, we will do it even slower this time. 

Brynn's birthday was March 24th.  She had a great day at daycare!! However, it turned out to be a pretty sad day...Danny and I spent the day at the hospital with my family, as my Grandpa passed away.  =(  I won't get into details, but the day sucked.  I was so happy to go pick up the kids--I really needed those smiles, hugs and kisses.  LOVE THEM! 

We had her party on Saturday with our families.  She didn't care about the gifts at all, LOL, but she sure liked playing with the boxes and ribbons!  Unfortunately, since she can only eat pears and sweet potatoes, we couldn't eat any birthday cake. Obviously, she doesn't know what she missed, but I do.  It made me so sad for such a long time, knowing that my baby girl, couldn't dig into her little cake, like most 1 year olds get to do on their first birthday.  She needed something special, so I made her a foodless cake. She smashed it and tore it apart and had so much fun with it!  We plan on using the fabric to make her a very special blanket.  The other kids were a little confused as to why there was no cake at the party, but we decided that if Brynn can't eat cake for her birthday, then we don't need to have a real cake.  It still makes me sort of sad thinking about it, but I feel better knowing that next year (hopefully), she will be having 2 cakes--one for her first birthday and one for her second.  =) 

Now that we have the probiotic under control, we started a potato trial yesterday.  She had it once yesterday and twice today with NO symptoms.  WHOA!!!  I'm totally on the look-out for different things to make using potato products!! There's a potato starch, potato flour, CheeCha puffs (which I'm ordering tonight)...I can't wait! I think potato will open up a lot of doors for Brynn and I'm just excited!  Keep your fingers (and toes) crossed for us that FPIES doesn't show it's ugly face during the next few days of the potato trial!!!!!!