One Year Ago

One Year Ago…

• Jake was diagnosed with FPIES
• Jake could only eat sweet potatoes, pears and breastmilk
• Our pediatrician had never heard of FPIES
• I began a total elimination diet and figured I’d be sending bottled breastmilk to college with Jake
• My main resource was Babycenter Fpies group
• I stalked the Babycenter FPIES group hourly
• The FPIES United Family Fund was born
• I was a much better blogger
• I couldn’t remember what it felt like to sleep through the night
• I started reading labels on everything

• I was afraid to feed my baby Jake

Today…

• Jake still has FPIES, but it’s manageable
• Jake drinks cow’s milk instead of breast milk
• I still read labels on everything
• Jake eats everything but rice, oats, bananas, quinoa, beans
• Our pediatrician still doesn’t know anything about FPIES
• I stalk the BabyCenter FPIES group weekly-ish
• The FPIES United Family Fund has raised over $40,000 towards research
• Good Morning America did a segment on FPIES
• There are more resources than BabyCenter:  Facebook here and here or the newly launched FPIESFoundation for example
• If I get woken up at night, it’s my 8 year old, 6 year old, or snoring husband.  Jake sleeps great.
• I’m a bad blogger
• I am not afraid to feed Jake (well, maybe just a little)

A Quickie update

Jake had his 18 month well check.  He FREAKED.  Wow, he wanted nothing to do with anything.  Weighing him came down to me weighing myself (yuck), then weighing us together.  He came in around 22 lbs 8 ounces.  This put him in the 5-10 percentile which is down for him.  *sigh*  I chalk it up to our weaning and the fact that he pooped TWICE before we went :)  He squiggled and wiggled and screamed for his height check.  Somehow he was 31 inches.  WTH?  So that boosted him up to the 25th percentile.  I take it all with a grain of salt.  It was just an off day for him altogether. 

The best news about our visit?  His hemoglobin was up to 13.1!!!!!  Yes, you read that right!  I stopped giving him his iron supplements around the time that he weaned.  So this is all on his own.  I had the biggest smile on my face.  Jake... not so much.  That toe prick is what pisses him off more than anything.

Our ped finally showed a little interest in Jake's FPIES.  She said there's something on the medical boards that has popped up back east called FRIPES?  I think she's confused, personally.  I can't find ANYTHING about it.  However, she said it fit Jake to a T.  Well, so does FPIES, so I'll stick with our allergist and GI's diagnosis. 

12!

Jake had an iron check today.  His hemoglobin is up to 12!!!  Normal! 

Apparently the Vitamin C did the trick.  He just needed a little help absorbing the iron.  I'm so very glad.  If it didn't come up this time, it would be a sign that something else was wrong, which means more tests.

Jake is so DONE with doctors.  As soon as the nurse came near him just to take his temperature he FREAKED.  Screaming, crying, hitting.... More screaming when we weighed him, more screaming when the doctor came in to do her quick exam.  The funny thing?  As the doctor was leaving and I was grabbing my backpack and we were obviously leaving, he quickly blew a kiss to the doctor and told her "bye!".  The doctor thought it was hilarious.

I'm going to continue giving him the Poly Vi Sol with Iron for the next month.  We go back to the doctor in August for his 18 month well check. 

Still Anemic.

Talk about having the wind knocked out of you.  Jake's numbers were actually WORSE (hemogolobin 9.8)!  I admit I haven't been giving him the iron every single day, but we should have seen SOME improvement.  So this leads me to believe he's not absorbing the iron.  He's not getting enough vitamin C.  The nurse practitioner we saw today (our doctor was not there, and *yay* another new person who has no clue about FPIES) prescribed a different iron supplement with Vitamin C.  "I don't know if the Vitamin C is ascorbic acid or just plain old Vitamin C."  Hmmm... I don't understand this.  Any Vitamin C listed on any food or medication label I have ever read (and I've read A LOT of them) use ascorbic acid for Vitamin C.  But hey, maybe this one time I'm wrong.

So I went ahead and had our pharmacy order the new supplement.  We'll get it next week.  The hubs and I talked about giving it a try, even if it has ascorbic acid in it.  While Jake's new toddler formula contains AA, it's listed under "less than 1%".  I really do wonder if that reaction eight months ago from what we thought was ascorbic acid (pears and ascorbic acid were the only ingredients listed), may have been a cross contamination of another baby food containing rice/oats/bananas. 

Do we risk it? 

In the meantime, I'll continue to give him the iron supplement we have and try to push some Vitamin C with it. 

Allergist Appointment

Jake had an allergist appointment today.  All went well.  He was pleased with Jake's progress and new foods, of course.  He had a few suggestions to get more calories into the little guy.  With our recent pass of corn and dairy, he'd like us to try some Toddler formula for a calorie boost.  I'm not sure Jake will agree with this, but it's worth a try.  The boy only likes water to drink.  He'll drink OJ or milk every once in a while, but only if his older brother does!  So we'll see how that works out. He gave me the OK to start weaning.  On one hand, this makes me happy. He's getting enough variety in foods, he should be OK to be weaned now.  However... my baby doesn't need me anymore.  It's hard.  I'm ready to have my body back, but I'm not ready to let my little guy grow up either.  We have always had the breast milk to fall back on.  It's always been our safety net.  But we have so many foods now, I feel confident he's fine without me.  That being said, I'm starting to take away the 3am feeding first.  Then we'll start weaning the daytime feeds.  I imagine in a month or so we'll be done.  It's a bittersweet feeling. 

We don't need to go back to the allergist until Jake is 2.  He plans to do a patch test again at that time with the foods Jake had FPIES reactions to and the foods he had reactions to with his first patch test.  It will be interesting to see what the results are. 

Interesting happening this week.... I ate a sandwich from subway that unknowingly had rice and oats in the bread.  Jake had a bad diaper.  Undigested food, acidic, yucky.  Only one though.  I've had that sandwich before.  Only a handful of times.  This is the first time I really looked up what was in the bread.  Anyway, I'm wonder if any of our other bad diaper experiences were related to a subway sandwich, or actually the food trial we were doing at the time.  Just a thought. 

Anemic.

Jake had his 15 month well check today.  He's growing.  20 lbs, 2 ounces (20%), 29 inches (3%). He's on his own curve, the doctor tells me. 

My main concern I wanted to share with the pediatrician was Jake's new "breath holding" behavior.  It has happened twice in the past month.  The first time it happened, Jake fell off a stool.  He didn't hit his head.  He just laid there doing a silent scream.  He was red faced.  We were waiting for the giant wail to come out, but it never came.  I picked him up, he went limp in my arms.  He wasn't breathing.  We called 911.  We were scared.  He came around with in seconds, but was very lethargic.  A few minutes later, we was crying and back with us.  A few minutes later he was FINE.  We stopped the ambulance from coming and thought maybe he had the wind knocked out of him. 

Last week, we were all walking to the park.  Jake went to tackle his big brother.  Big brother faked him out and Jake fell to the ground.  He hit his head.  I picked him up immediately.  He did that same silent scream.  We waited for the wail.  It never came.  His eyes rolled back in his head and he became very lethargic.  It scared us.  Again.  Within minutes he was crying, then back to his old self. 

Apparently these breath holding spells are normal.  It is the body's way of saying... "if you're not going to breath, I'm going to make you pass out so you're lying down and blood and oxygen can get to your head easier". 

However, breath holding spells can be a sign of anemia.  The pediatrician did a quick hemoglobin check.  Guess what?  Anemic.  His hemoglobin level was 10. 

The doctor wants Jake to start iron supplements.  I don't think they make them without ascorbic acid.  I'm not willing to "trial" ascorbic acid yet either.  I may see if I can have the pharmacist compound some for us. 

So guess what Jake is trialing this week? Beef. This boy needs some iron.

Allergist Appointment

We had a follow up with the Allergist today. I feel so lucky to have found him.  He may not have the most experience with FPIES kids, but he seems so on top of things and I feel like we want the same things for Jake. 

We're going to start meats!  Turkey for my little turkey!  I am on the hunt for a fresh, organic turkey to roast for Jake.  We will take it slow for a week, maybe a tablespoon of turkey, then increase our serving size over a few weeks.  I hope the extra protein will help keep Jake full longer at night.  The night nursing is killing me right now. 

Dr. S. suggested sorghum to try as our next grain.  It's like he's reading my mind!

I brought up eggs.  I think being an allergist  he's just leary of eggs all together.  He agreed to try egg yolks, baked in a muffin for at least 30 minutes at 350 to help break down the proteins.

As for milk, I wonder if he'll ever let us try anything dairy!  His other FPIES patient has a trigger of milk.  He is 2 1/2.  He was just in yesterday to re-trial milk.  I guess it was a horrible fail.  Four hours had passed and they really thought he was going to be fine, then BAM.  Reaction.  The IV he had in ready to go, came out.  They ended up calling an amblulance to take the little guy in to be monitored in the ER.  How heartbreaking.  I feel so horrible for that family.  I'm so scared for the day we re-trial rice and oats.

Anyway, while Jake doesn't show any discomfort from my dairy intake, we agreed to hold off on milk for now. 

We go back to the allergist in four months.  I'm hoping we have another grain and few meats passed by then!

Doctor visits

We had two doctor's visits yesterday. 

General Ped 9 month visit - went great.  Jake is staying on his curve.  He weighed 19 lbs 4 oz.  He's a short little dude, but staying on his curve.  He's reaching all his milestones appropriately.  Our doctor seemed like she had read up a little on FPIES since our last visit.  She just said she hadn't seen it before, and just really hopes he outgrows it by 3 or 4 so he won't have any recollection of it.  I agree. She asked about our allergy visits, what his recommendation were.  She didn't have too much to offer, just to keep doing what we're doing.  No vaccines, just a toe prick.  Iron levels were normal.  Yay! 

GI Follow up visit and nutritionist - disappointed.  First, our visit with the GI was really just that.. a follow up.  He threw out some ideas, but at this point I feel like the allergist has really taken ownership of Jake's diagnosis.  GI did say something funny... "So Jake's allergic to rice and air?"  ha ha, yes pretty much everything. GI mentioned Jake could try Alimentum Ready to Feed formula. It's corn free.  Well, I looked up the ingredients, it contains ascorbic acid.  Really I don't think there's a formula he could totally tolerate.  I'm fully committed to nurse him for the next year at least.  He seemed a little concerned about Jake only pooping once or twice a week.  They are soft and formed, so I'm not worried.  My other son was EXACTLY the same way as a baby.  And now he's fine.  GI said if his poops become very hard to try prune juice.  As if it's that easy.  Try prune juice.  I will trial it at some point.  I did find some organic prune juice that contains no ascorbic acid.  Only at Whole Foods though. 

After the GI left, the nutritionist came in.  I was really hoping to pick her brain about different grains, different food families, some ideas of what to try next.  She kind of looked at me like a deer in headlights.  She was no help at all.  She kept saying he looked healthy and my breastmilk is all he needs.  Well that's great, but not FOREVER!  She wouldn't recommend anything because the doctor hadn't ok'd any other foods.  Huh?  I tried rephrasing myself several times, but in the end I think I knew more about food then she did.  She hadn't even looked in Jake's file before she came in.  Didn't even know his name.  Very disappointing. 

GI asked that I make an appointment for three months from now.  I didn't.  I'm not sure what his role is for us.  If Jake's vomitting were to return without a known cause, then yes.  If his symptoms still existed after removing the offending foods, then yes.  If he was having bowel issues, yes.  Maybe in three months things will be different.  I don't know.  I should probably go ahead and make the appointment.  It doesn't cost us much to go. 

We're done with doctor visits for a few months at least.

Patch Test Results - I'm so confused

Jake's FPIES triggers from our experience (which trumps any patch test) are RICE, oats, bananas and corn (in the form ascorbic acid).  Here are the results from his patch test:

Definite reaction - Oats, green beans and QUINOA (wth?)
Slight reaction - wheat, banana, green pea
No reaction - milk, soy, corn, chicken, turkey and RICE (wth?)

So what do I do with this information now?  How did rice not have a reaction? Rice has been his worse FPIES reaction.  This alone makes me not trust any negatives he had.  And quinoa?  I eat a lot of quinoa.  Quinoa looked just as bad as oats on the patch test.  Now that I think about it, I didn't have much last week.  He slept better last week.  Maybe it is all related?  I feel like I need to process all of this.  I feel lost now.  I was hoping this test would reffirm things, but all it has done is left me confused. 

We're supposed to watch the patch spots for the next 5 days, recording any changes.  Call back to the office with our observations.  Continue to feed him foods we know are safe.  We may start trialing those foods that tested negative.  I don't know.  I didn't plan on trying any of those foods until he was a year old. 

I guess this is where I use my Mommy instinct more than medical advice.  I think we'll still continue some fruits and veggies before I do anything big.  I just need to step away and process this new info.  I need to do a little more research.  Maybe millet?  I wish we had a grain.  But the slight reaction with the wheat has me worried.  I'm definitely staying away from quinoa.  I know he reacts to corn.  I'm curious about edamame... it's soybean, but is it a legume?  Is it related at all to a green bean? 

All this testing did was provide me with more questions than answers.  *sigh*

The Allergist

I think our circle of doctors is now complete.  We met with the allergist recommended by Jake's GI doctor yesterday.  He was fantastic.  He listened, he typed as I spoke, writing everything down, and he listened some more.  He spent almost an hour with us.   After hearing our story, he said it sounded like FPIES.  He has one other FPIES patient!!  I was sad there's another patient, yet thrilled he's already been through this.  His other patient is almost two years old. 

He seemed so knowledgable and immediately gave us a plan.  We are going to do patch testing the first week in November for all the main trigger foods for FPIES, and also quinoa.  He agreed that quinoa would be a good grain to get under our belt.  Especially since I eat it almost every day now that rice is gone from my diet.  He isn't reacting at all to the quinoa in my diet.  He said to continue to eliminate Jake's offending foods from my diet.  He asked how I felt about nursing until at least 18 months.  I said I would.  He'd like breastmilk to continue to be Jake's main form of nutrition.  No cow's milk or milk alternative until then.  His other FPIES patient has a trigger of milk, so I think he's really leary of the milk.  He said if I want I can try Neocate or Elecare, however there are corn solids in those formulas.  And with the ascorbic acid fail, I'm scared to try anything with corn in it.  I will continue to breastfeed until 18 months for now.  He asked that I start taking a prenatal vitamin again.

After the patch test he will determine what foods we should start trialing next.  We won't trial any of our failures until Jake is 2 or 3 years old.  He will do the trials in his office.  He gave us a plan if we have another full blown reaction.  Since that last reaction was not as severe, he said we can monitor at home unless Jake becomes unresponsive, turns a different color, especially around his mouth, or is completely listless.  We are to call 911, have them start IV immediately, route us to Phoenix Children's Hospital, then he will consult with the ER.  He also prescribed the epi pen in the condition Jake is having an anaphylaxis reaction.

I left his office feeling very confident with his care.  He said to google "fpies" the few top links are good ones.  We all know I've already done that... to an extreme.  He said he tries to stay on top of the FPIES research.

I feel good.  I feel like we've really lucked out with our doctors.  I've read so many stories of families struggling to find doctors who even know what FPIES is, let alone how to treat it.  We have a plan.  That's all I need right now.  I know things are going to get harder once Jake gets a little older.  I'm enjoying this calm we have now.  A few good doctors, a plan, five solid foods, and endless milk supply.  Jake is thriving and happy.   

Official Diagnosis - FPIES

Today was the big day.  Jake's first visit to the GI.  Why are doctors so young these days? It certainly can't be because I'm getting older.  So he took down some of my history about the pregnancy and birth, then Jake's feeding history (EBF), and onto the food journal I've kept since Jake has been having reactions.  I decided I wouldn't even say the words FOOD PROTEIN.  I really wanted to know what his professional opinion was before I started shoving medical articles at him.  Do you want to know what happened next?  He said it sounds like a food protein allergy.  We call it F-PIES.  I nodded.  "Oh you've heard of FPIES?".  I was relieved.  I was relieved that we didn't have a doctor baffled and scratching his head.  Or declaring my son had just had a stomach bug.  Or ordering a bunch of unnecessary tests. He had actually heard of FPIES and diagnosed Jake with it. 

Now we have a PLAN. I started asking some specific questions about possible foods to avoid.  He suggested we see an allergist and recommended one.  He wants us to hold off on grains for the next few months.  We're going to focus on adding some more veggies and fruits to his diet.  We're going back to Dr. GI in November and will meet with him and the nutritionist.  She will answer any more food specific questions I might have.  When the time comes to re-introduce rice, oats and bananas we will do it in a controlled setting. When he left the room I felt like crying.  Crying because my poor little man has to go through this.  Crying from relief that this is something my son will grow out of.  Crying because here is a doctor that seemed to understand these symptoms and had a name for it. 

I had noticed Jake spitting up a lot on Saturday.  Friday night I ate rice.  I decided to eliminate the offending foods from my diet completely.  The doctor also agreed with this decision, as well.  He said such a small percentage of the offending food's protein ends up in my milk, but it does have trace amounts.  It's possible it could be bothering Jake's tummy.  It certainly doesn't hurt to eliminate.  Since then, we've had no spit ups. 

Tomorrow we will be trying CARROTS!  Something with some color!  I'll be heading to the store for some fancy organic carrots and steam them myself.  Maybe I'll even chop up a few cooked ones for Jake to practice some fine motor skills.  Maybe he'll even get one or two in his mouth.  Just like a normal 7 month old would.

Sweet Potatoes and Pears

The one good thing about ignoring the three day wait rule when we first started feeding Jake... he tried quite a few foods the first few weeks of solids.  We found his reactions occurred the 2nd or 3rd time the food was consumed.  We learned quickly that he could eat sweet potatoes!  Sweet potatoes are versatile too... mashed, boiled, baked, fried... however it always tastes the same.  At least we can play with texture a bit.  He had tried pears a few times those first few weeks. I thought it may prove to be a safe food, as well. He's had pears every day for over a week now.  Jake can eat two foods!  I'm afraid to try anything else.  The reactions are just so awful to watch him go through.  So we'll stay with these two until we visit the GI doc next week. 

I'm trying to come up with some questions and figure out what I want out of this GI appointment.  I don't need him to diagnose Jake with anything.  I just want a PLAN.  I don't want any unnecessary tests either.  I just want a plan. Meanwhile, I'm trying to come up with some questions to ask the doctor.