FPIES | Imamother

amother

Vermilion

Sun, Feb 18 2018, 9:11 pm

Just got this diagnoses. Baby can't tolerate anything besides the hypoallergenic formula which she barely tolerates cuz of reflux. No solids, barely tolerating formula, and no sleep. We are at the end of our ropes. Anyone dealt with or dealing with fpies that can shed some light or some hope or advice or suggestions?

Thanks so much

amother

Scarlet

Sun, Feb 18 2018, 10:20 pm

My child doesn't have FPIES but he has other gastro issues. Just know that FPIES is something that is almost out grown so this is temporary.

ttbtbm

Sun, Feb 18 2018, 10:28 pm

It sounds like what we thought my daughter had. She was fine while exclusively breast feeding. Whe introduces to solids she experienced extreme vomiting a few hours after eating which left her horribly lethargic. We made an appointment with a top pediatric gastroenterologist. We had to wait months for the appointment. During that time I went back to breast feeding only. My doctor called to check in a few months later to find out what had happened and I told him that we didn’t have our appointment yet. He told me he could have gotten us in earlier and thought it was ridiculous that we couldn’t get in sooner. He suggested that we try solids again and BH my daughter was fine.
We were never given a formal diagnosis but she outgrew whatever it was.

amother

Royalblue

Sun, Feb 18 2018, 10:43 pm

My son had FPIES until he was three. He had very severe reactions in which he almost went into shock.

He has now outgrown everything BH. There is hope.

amother

Vermilion

Sun, Feb 18 2018, 10:49 pm

Thanks guys. At my wits end. Baby is so cranky all day. Always uncomfortable even on hypoallergenic formula. Terrible reflux. Sensitive tummy. And on top of all that fpies. I need some sort of support group or something in losing my mind. She's has a endoscopy and colonoscopy already and the docs don't know why she's so uncomfortable but are saying it's reflux and she will outgrow. What helps reflux is solids but she can't eat cuz of fpies. What did you guys do till child was three? What did they eat? Which doctors helped??
Thanks everyone

amother

Wine

Sun, Feb 18 2018, 10:51 pm

PLEASE CHECK WITH THE DR. FIRST
PLEASE CHECK WITH THE DR. FIRST
PLEASE CHECK WITH THE DR. FIRST
Got the point
I heard some do better with a little chamomile tea.
Ask before doing this.

amother

Royalblue

Sun, Feb 18 2018, 10:56 pm

The reflux, I believe, is part of the FPIES.

My son had terrible reflux, but he eventually outgrew it.

FPIES kids seem to have reflux and odd bowel movements. For instance, my son only made dirty pampers about once a week -- unless he'd had a reaction and then it would overwhelming diarrhea. And the BMs smell funny in most cases, kind of buttery popcorn.

FPIES can be overwhelming, but it will pass b'ezras Hashem.

amother

Vermilion

Sun, Feb 18 2018, 10:59 pm

Yes royal blue!! Wierd BMs. She wont even go on her own sometines. It's crazy. And reflux. And gas. It's just a big mess. How did you cope? What did you do to make baby feel better?

amother

Royalblue

Sun, Feb 18 2018, 11:00 pm

amother wrote:

What did you guys do till child was three? What did they eat? Which doctors helped??
Thanks everyone

The foods that worked for my son:

peaches (the docs say to start with yellow fruits first)
avacado
wheat

those were the first things tolerated. then slowly we added egg, banana, potato and tuna. That's all he had until three, and then it was over.

Big flops were:

Chicken (he almost died)
rice
pear (vomited for 20 hours straight)
coconut

Unfortunately, we never found a reliable doctor. There is no testing for triggers or anything, so you kind of are on your own.

Make sure you get an RX for Zofran. It is a gamechanger. Stops a reaction in its tracks.

amother

Royalblue

Sun, Feb 18 2018, 11:02 pm

amother wrote:

Yes royal blue!! Wierd BMs. She wont even go on her own sometines. It's crazy. And reflux. And gas. It's just a big mess. How did you cope? What did you do to make baby feel better?

In the beginning I didn't cope. I was worried, sad, depressed. But then I learned to deal and hang on to each victory.

OP, are you the one that contacted Ami about the FPIES article?

yogabird

Mon, Feb 19 2018, 12:13 am

OP which elemental formula is your baby on? Have you tried others or considered changing? Even between the elementals there are slight differences, and some children tend to tolerate certain ones better than others

anonymrs

Mon, Feb 19 2018, 12:34 am

Try another formula. Your baby may be chronically reacting to it (yes, to make it more complicated, sometimes reactions can be chronic; subtle and less obvious.) Which formula are you currently using?

Have you been able to identify specific triggers yet?

Are you breastfeeding at all?

And do your family a big favor, if your child is struggling with reflux, put her on reflux meds. It can make a HUGE difference to your life. I am the last person to promote medicine for a baby, but it's a game-changer.

What are you using for constipation? Any other meds baby is taking?

amother

Vermilion

Mon, Feb 19 2018, 7:29 am

Royal blue, yes I contacted AMI.
To all the others that suggested switching formulas and meds....ive been there done that. Baby is on meds. She tried 7 formulas until finally the current one is the LEAST of all the evils. So now it's just a waiting game until she gets older but in the meantime she cannot eat solids yet and weight gain is slowing down. I don't know when this will all be behind us it's just so difficult. If anyone knows any doctor that can help or any way I can make baby feel better plz let me know! She reacts to inactive ingredients in medications. We tried probiotics it made her sick. She's not constipated. Stools are loose but she can't get them out for some reason. Doc is just blaming everything on immature gut. But she's already 7 months old how immature can her gut be!!

amother

Vermilion

Mon, Feb 19 2018, 9:35 am

Mazal tov! So nice.
Thanks for taking the time to reach out. We feel so lost because the baby is so miserable and the docs just. Don't. Get. It.
Anyone that can shed some hope or advice im all ears!

Thanks!

amother

Wine

Mon, Feb 19 2018, 6:48 pm

amother wrote:

Wine, I wish I could. My daughter reacts to everything, including tylenol. Do you know what fpies Is?

Yes I do
Please ask it saves DDs sanity.
Calmed the baby for a good 2 hrs, sometimes

amother

Wine

Mon, Feb 19 2018, 8:06 pm

amother wrote:

Your DD had fpies?

No her child
The chamomile tea was made from the buds.
We gave the child 1 tsp at first and then a second when we saw he didn’t spit up. An hr later another tsp.
All this per pediatricians directions.
By the 3rd tsp we could see the baby was a little more comfortable, not screeching any more.
By the 4th tsp, the dr. said to give him 2 oz. in the bottle.
Finally he slept.
After that 2x a day 2oz. And would sleep right after, did not always calm him though.