Dr J visit

We had our visit with Dr J at the Pediatric Center for Rare and Complex Diseases yestereday. 

-received a prescription steriod cream for her eczema flares
-thinking she has a milk-protein allergy
-2 cans of Elecare (prescription elemental formula) to trial to see if B does better on that
-Brynn more than likely has some chronic inflammation going on, which may be causing her to fail all the recent food trials (since December)
-testing for dust, cat and dog alleriges
-after trialing Elecare, we will move to a single strain, dairy/soy free probiotic

We should have more info/answers within the next 4 weeks and will keep everyone updated!

A visit outside our comfort zone

Well, on our trip to New Jersey, we had to (gasp) eat in a public place.  Other than home and a few relative's houses, we haven't really.....gone anywhere.  Wednesday, we found out how difficult going out to eat was.  We were at the airport and our flight was delayed, so we decided to have lunch at TGI Fridays.  It was rather hectic and reminded me of why we just eat at home =).  We contemplated using one of their high chairs, but just couldn't do it.  Brynn wanted nothing to do with her stroller, so she sat on my lap and we started whipping out toys left and right to keep her occupied.  Fact:  toys from home while you are out in a new, public setting are no fun at all.  She grabbed a napkin.  Fine, play with the napkin.  Straight into her mouth of course.  Yank that out, stick her nuk in her mouth to deter her from putting EVERYTHING in there.  Napkin lasted about 30 more seconds.  So, Danny decided to take her on a little walk. While they were walking, our food came. I figured I'd scarf down my meal before they come back so we could switch and he could eat while I occupy B.  Fact: I am not a very talented food-scarfer.  They came back and Danny sat down with Brynn off to one side of his lap so she couldn't reach the food.  Fact:  11 month olds are QUICK.  Her hand grazed the edge of his plate. UGH, this is too nerve-wrecking!  The nuk came out of her mouth so many times during the meal and her tongue would just go crazy as she was checking out the food on our plates.  Poor baby.  I couldn't help but think of how easy it would be and how happy she would be if I could just give her a chunk of my bread, or a french fry...But, those thoughts aside, we survived the meal. 

We decided it wasn't something that we wanted to do again the next dinner, so we ordered in at our hotel.  B had already ate the food that we prepared for her (sweet potatoes) when our food arrived.  Danny and I took turns--one of us ate while the other played with B, then we switched.  It worked.  It'll be awhile before we go out to eat again. 

We are home now and Brynn couldn't be happier.  She can crawl all over the floor, she can sit in her own (clean) high chair by the table with everyone else and eat her sweet potatoes and pears.  Life is good.  =)
   

Leavin' on a jet plane

Well, the time has come.  We leave tomorrow for our visit to the PCRCD to hopefully get additional pieces to Brynn's FPIES puzzle.  I'm not quite sure how I'm feeling about it.  I'm excited to learn more.  I'm nervous that we won't get the answers we are hoping for and I'm nervous that the results of the tests will not be in our favor.  I'm anxious, I'm happy, I'm scared...but most of all, I'm determined.  I'm determined to help Brynn. 

Antibiotics

Brynn started amoxicillin this past Friday for her ear infection.  Her mood was ok all weekend, although extra sleepy and extra clingy.  She was EXTREMELY crabby this morning at daycare, but her mood turned around after she took a long morning nap.  At about 2pm, I get a text from our daycare provider, saying BRYNN THREW UP.  My heart seriously just dropped all the way to my feet as I read the text.  I immediately called her and listened intently to the details.  Crabby this morning, long nap, woke up happy, ate sweet potatoes for lunch, playing like normal...Then, Kari (daycare provider) noticed Brynn playing with something on the floor.  She quickly ran over to see whatever it was that she found, and here my little mischevious girl was splashing around in her vomit, laughing.  She hasn't done it again and it's after 9pm...so what was the cause?  She has never randomly thrown up.  No fever at all.  Doesn't seem to be bothered anymore when I pull/push on her ear.  Antiobiotics.  It has to be.  So I look up the ingredients of amox.  Inactive ingredients: FD&C Red No. 3, flavorings, silica gel, sodium benzoate, sodium citrate, sucrose, and xanthan gum. 
So...xanthan gum=corn
sucrose=corn
sodium citrate=corn
Uh oh......

When getting her ready for bed tonight, I also noticed the eczema coming back on her legs. Dang it, we just got rid of that!!  So now my head is spinning again.  I'm extremely nervous that the symptoms are just going to keep getting worse.  How sensitive is my little girl to everything?  March 3 seems so close, yet so far away. I can't wait to get to New Jersey to see Dr. J to get some answers.....to point us in the right direction....to help my amazingly sweet, innocent baby girl.....

It's been awhile

I've fallen behind on blogging! Oops!  

A couple weeks ago we started a peach trial.  Fresh peaches are currently not in any of the grocery stores in the area, BUT, Target now carries a new brand of baby food, Plum Organics, and they have peaches that have NOTHING else added to them.  So cool.  When we started the trial, B immediately had disrupted sleep.  She was having some strange coughing attacks a few hours after eating them as well (I think a reflux issue?) We stopped the trial for a couple days and started again, but gave them to her in the morning, hoping to not have the sleep disruptions.  Daddy and  Mommy were tired! Cody actually started saying "Brynnie woke me up!" and acting all mad in the morning. LOL (Talk about drama...) She did well with it, although we did continue to see an increase in reflux.  She was good for a few days, then started pooping like crazy!  She was going through a number of outfits a day and literally having 7 dirty diapers a day.  Yesterday, I decided to pull peaches for now, trying to figure out what the diaper culprit is.  She had 5 dirty diapers yesterday, and so far only 1 today!!!!  BUT, to complicate things even more, I have an appt for her this afternoon to check her ears, as I'm pretty sure she has an ear infection going on...she's been coughing the last couple days, a runny nose, and has been fussy and tugging at her ears today.  UGH.

Yesterday was an AMAZING day, other than the kids having colds.  Last week, we got a letter from our pediatrician saying as of June, he will not longer be at our clinic.  Great.  Start back at square 1, explaining/teaching the dr about FPIES, giving a total history of Brynn and her reactions etc.  I was so upset.  But, needing to move forward, I called the clinic to see if a couple of the other dr's that I've had positive interactions with to see if they were taking new patients.  Nope, they weren't.  Crap. So, being the researcher I am (lol), I started looking at dr's profiles through the clinic's website and came across one that I found extremely interesting.  This is what it said:  Special Clinical Interests: Newborn care, breastfeeding, asthma, allergies, developmental screening and children with chronic illnesses.  WOW, is this for real?  This could potentially be a blessing in disguise.  If she truly is interested in allergies AND chronic illnesses, maybe she would research some on her own...maybe I won't have to fight for her to believe that FPIES is real...maybe she will HELP us!!!!  Now, as exciting as this was, there's more.  A while later, Danny called, saying that the GI specialist called to ask if we wanted to move B's appt to an earlier date.  YES YES YES!! We do! I've been trying to get an earlier appt for weeks!

And just wait, it gets better.  =)  A fellow FPIES mom informed us of a research study being done in New Jersey, at The Pediatric Center for Rare and Complex Diseases. This mom gave us the info to get in touch with the Dr, and stated she was only taking 150 patients for the study.  She sees 1 FPIES patient per week.  We jumped at the opportunity and I called right away.  I actually got through right away (many other parents had issues getting through to actually talk to someone)--I'm pretty sure I just happened to catch her in between phone calls.  I talked to Dr J's assistant for about 45 minutes.  She was great and we discussed setting up an appt and I needed to check for flights and call back.  After checking for flights/hotel, I called back and couldn't get through.  I called for 2 weeks straight, about 10 times each day and got sent to voicemail every time.  Yesterday, I called again, expecting vm...but someone answered!!  She said the assistant I had spoken to was not in and she would take a message...I told her I had already left numerous and I just wanted to confirm our appt.  So she said she would walk up to that area and check it out.  So, to add to my awesome day yesterday, we are set up for an appt in New Jersey on March 3rd.  YAY!! I'm really hoping we can get some insight on what exactly is going on in Brynn's little body and to see what other info she has to offer.  The mom who has already gone, is getting some really great info.  Dr J may be able to tell us if B's anywhere NEAR growing out of this, what her possible trigger foods will be, and if there are any other underlying issues going on.  How amazing would it be to have some answers!  She also prescribed a probiotic for the other little boy, trying to balance things out within his body. 

So we have a very busy March!! March 2-4: NJ, March 18: GI specialist  March 29: B's 1 year appt.  Hoping for the best!!

The Unknown and the What ifs of FPIES

I have always feared the unknown.  Anyone who knows me well, also knows that I hate the what ifs.  No matter what the situation is, I am always thinking about all the possible what ifs.  The unknowns and the what ifs of FPIES are extremely overwhelming.  I find myself thinking about B and her FPIES nearly all day long, every single day.  I'm always questioning what if this happens, what would happen if we try this, what should we trial next if she fails this food etc. 

I've recently (well, pretty much every day, lol) been talking to a couple of my FPIES mentors, and have come to a new question.  Do we even know what Brynn's TRUE baseline looks like?  I think she's the only FPIES baby that I've heard of that isn't on some sort of elemental formula.  When we trialed corn (kix cereal), we saw reactions within a couple hours and didn't push the trial any further.  I was so afraid that if we did, she would become sensitized to the corn and start reacting to the trace amounts that are in her current formula.  There is a formula out there (Similac Expert Care Alimentum Ready-to-feed) that does not contain ANY corn and we are now considering trying it.    Another FPIES mom mentioned that it's possible for her to have some underlying inflammation that is keeping her from being able to tolerate food trials--maybe that's why we are having all the fails?  I mentioned to her that even though she's probably not hungry, her bottle is the only thing that settles her sometimes and she said her son did the same thing and she learned that it was from the inflammation (the formula gives a temporary coating of her intestines). 

Back-tracking a little--we began a mango trial this past week. I chose mangos because I haven't heard of other's little ones that have reacted to them.  Her tastebuds appear to really like them...but, unfortunately, I'm not so sure her gut does.  (Insert huge SIGH here).  She's had disrupted sleep, a couple screaming fits, a questionable diaper and crabbiness today, and she was spitting up all day, which is something she very very rarely does.  We took a break from them today and I'm not sure if we will continue with them or not.  What if we give them to her tomorrow and it causes an extreme amount of pain??  UGH.  I am learning as we go here, but one thing I have already learned, is that there are an extreme amount of unknowns and what ifs with FPIES.  Not only do I want to become as knowledgable as possible for my little girl, but also for future families who have to endure this. 

Quinoa

We started a quinoa trial on Sunday.  We used the flakes and it ended up looking somewhat like oatmeal, but didn't smell/taste very good.  We decided to mix it with her pears and she gobbled it down and cried when it was gone!!  =)  It's so great to see her eating, but at the same time, it's frightening.  I'm so scared of a reaction. So many questions run through my mind for the next 2-3 hours...what if it's a full-blown reaction and she ends up in the ER?  What if she is in agonizing pain for hours?  What if she fails this and she has to go the next 2-3 weeks trying to heal her poor little gut?  On the other hand, I have other thoughts going through my head as well...what can I create with this food?  Can I make her some sort of finger food? Can I bake anything?  What about a birthday cake or a muffin? A bread? A treat? 
Sunday went very well, as did Monday.  Tuesday I got a call from daycare saying she just wasn't herself--no smiles, laughs, babbling...just pretty much "there".  She also had two questionable diapers; soaking through her onesie, pants, crib sheet, mattress pad....

Last night she didn't sleep well at all. She wasn't screaming in pain all night, but she was just restless and...well...awake.  And sleep disruption is definitely a symptom of a reaction.  We didn't give her the quinoa last night.  I got a call from daycare again today that she has had a couple more questionable diapers.  UGH.  I had such high hopes (again) for this trial--we would have been able to bake, have a cereal for breakfast etc.

So is this the start of a fail? Do we try again tonight? Maybe she's teething.  Maybe she's catching a bug.  Maybe maybe maybe.  It's so hard to decide if we press on with the trial or give up on quinoa.  It's all a guessing game with FPIES.  I don't think she's been in real pain yet, but I also don't want to push it too far and cause the pain.  UGH AGAIN!