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Author Topic: Need help ASAP - MFA 1 year old - won't take formula.  (Read 14557 times)

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Offline hurleyreyes

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Need help ASAP - MFA 1 year old - won't take formula.
« on: June 21, 2012, 05:36:25 PM »
Short version: We're in a pickle and need some help/advice on how to get our son to eat Neocate/Elecare immediately because, due to some unforseen circumstances, my wife (and therefore her breastmilk) will be out of town for a week starting Sunday.  See below for the details...

Long version: Our son is 1 year old (he turns 1 in 7 days) and has multiple allergies.  On his most recent blood test he had high scores for cow's milk, eggs, wheat, peanuts, flax seed, and almonds (with soy as a mystery b/c they somehow forgot to run it this time).  He's gone into anaphylaxis twice and has had crazy rashes/hives and diarrhea a number of times.

He was exclusively breastfed for his first 9 months and since then has been primarily breastfed with solids being more of a hobby than a major part of his diet.  He eats fruits, vegetables, or meat 2-3 times a day but not in huge quantities.

My wife and I originally planned to transition him from breastfeeding into solid foods over the next few months.  But we are suddenly in a jam b/c she is going out of town suddenly and our supply of frozen breastmilk is all from before the allergy tests (and thus before she eliminated his allergens from her diet).  We've tried giving him a bag or two the frozen stuff and it's like Russian Roulette.  Some bags he's fine, some bags he breaks out in a rash (presumably b/c of what my wife at that particular day, months ago). 

So - we are going to boost his solid food intake but I don't know if he can go from being primarily breastfed right into solid food so quickly (my wife leaves in 3 days).  Which means some formula.

Except he HATES the taste of unflavored Neocate.  I've got some flavored Neocate Jr and flavored Elecare on the way but I want some advice on what I might do to coax him into eating these AA formulas and any thoughts on what else to feed him to help ease the transition from liquid to solids so fast.  We did a test run today of solids and Neocate and he refused to drink and ended up chapped dehydrated lips and super pissed off.  He ate solids just fine but I can tell he's hungry.

Thanks for any help you have to offer!



Offline GingerPye

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #1 on: June 21, 2012, 06:21:43 PM »
We've been in a similar situation when DD was that age.  That Neocate is nasty. 

Neocate's website has some recipes for smoothie-type drinks --- perhaps you can whip up something that way??

They also have recipes for other things. 

My DS was on the Neocate drink boxes for a few years, the orange-flavored ones.  He loved those things --- but he was 2 when he started.  Check with your doctor about starting your 1 y.o. on the drink boxes.


DD, 25 - MA/EA/PA/env./eczema/asthma
DS, 22 - MA/EA/PA/env.
DH - adult-onset asthma
me - env. allergies, exhaustion, & mental collapse ...

Offline rebekahc

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #2 on: June 21, 2012, 06:24:32 PM »
Wow, it sounds like you're in a real bind! 

I'm not sure I have any advice for getting him to take the formula.  Also, I'm not sure you really have time to work on it and to force him would likely backfire in the long run.  I would suggest adding extra solids over the next few days and having your wife pump some of the time to get some supply built up for while she's gone.  Since she's only going to be gone for a week, I think I'd just feed him anything and everything he'll eat and give him any pumped breast milk she manages to save over the next few days.  I don't think a few days of less than stellar nutrition will have lasting effects.  Maybe he would find rice milk palatable?  I know it's not a substitute for formula or breast milk, but at one year old he's old enough to switch to whole milk (if he wasn't allergic), so I think rice milk would be okay.  For long term, you'd probably need to supplement with extra fat (maybe olive oil) since rice milk has less fat than whole milk, but for short term probably not necessary.

Maybe others will have better suggestions.  Good luck!
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

twinturbo

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #3 on: June 21, 2012, 08:32:58 PM »
hurleyreyes,

I was in this exact predicament at nearly the same age with my second child. I'll be back to help you prep for the week so let's check in daily even if we're in different time zones.

For now buy some medicine droppers or oral medicine syringes. We had to start on a different method for child to drink because he was too used to breast. It's a slow, frustrating process but when the choice is hungry infant/toddler or anaphylaxis you have to do what you got to do.

It's your call but I'd even go so far to start mixing Neocate with some breast milk now using a completely different method to ingest like a medicine dropper. You might start to think I don't know what it's like to have a 1 year old who has already anaphylaxed twice -- I have. First known reaction was blood in stool at three months most likely from my dairy intake that day. I went through weeks of Hemoccult cards making sure not even microscopic amounts of blood remained in stool during an elimination diet.

It's summer, it's hot. If 'all' that's happening with the breast milk is some rashing then I personally would risk mixing it now with Neocate and syringing it in small amounts and resorting to some sort of distraction like a toy (heck, TV under dehydration risk) interspersed with a solid or semi-solid you know he'll eat. I'd even mix it in with something like applesauce and syringe it -- anything to get that hydration and nutrition in. It doesn't have to be perfect... just enough to get through the next few days.

Neocate is formulated with electrolytes (according to our per) and the nutritional balance is such you won't get it in alternate 'milks'.

What is his menu like? Are there some jarred foods you can depend on along with snacks? Our list is at least as long as yours and we are largely formula dependent (as per Sinai dietician instructions) for key nutrients.

jarred sweet potato (no additives, read label)
jarred turkey, chicken
jarred apple or pear puree
^these can perform as an infant MRE short term, especially if you are short on time alone as a caregiver

I would take the time if you can to test out Ancient Harvest quinoa and quinoa noodles. Assuming child can have chicken (we are currently avoiding red meats until we can test) you can try browning plain ground chicken (read label) in duck fat. We use duck fat or corn oil for cooking to boost fat content per nutritionist's instructions.

Thus far we've also had good luck with Erewhon crisp brown rice cereal for self feeding.

Last question: Are you going to have any help while your wife is out of town? Will you be alone with child? And are there other children that you must care for at the same time? Hang in there.  :console:


Came back to add about Pedialyte. I'm no hippie but I'm one of those people who abhor the idea of giving a child artificial colors and flavors. I didn't even let my oldest child eat "safe" peanut free jelly beans until he turned 6. But an infant with dry lips with breast milk supply leaving town calls for doing the necessary, so grab some Pedialyte. My super MFA child has had it without issue. He doesn't like it but he's had it. If you start getting those dry lips and your back is against the wall use it to keep hydration up if things start heading south. You don't want to overuse it and check with your pediatrician for usage if you're unsure but best to have it on hand especially if the child has had diarrhea and vomiting in the past.
« Last Edit: June 21, 2012, 08:41:04 PM by twinturbo »

Offline CMdeux

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #4 on: June 21, 2012, 09:29:46 PM »
Yes to Pedialyte and to this, which is precisely what I was going to suggest:

"It's your call but I'd even go so far to start mixing Neocate with some breast milk now using a completely different method to ingest like a medicine dropper,"
and for the same reasons; we had to do this with supplemental feedings just to get my DD home from the hospital after birth... because DD refused to breastfeed* at all, instead she just screamed and turned blotchy and scratched at herself...

(guess PB crackers weren't the greatest thing to give a new mom who had recorded, stated concerns about FA in her newborn after all, eh??   ~)  )



Anyway.  Yes.  What twinturbo says.  I'd risk very tiny amounts of the breastmilk from the freezer if that is what you have to do-- if you're using a dropper (or gravity-feeding with tubing) you'll know right away if you have a "REALLY bad" batch and can just dump the rest.  KWIM?

Eczema-covered isn't ideal, by any means, but it beats dehydration.

Welcome, by the way, and-- good luck!! 

Pedialyte is sometimes better-tolerated if it is quite chillded, by the way.  My DD hated the taste of it otherwise, but she, too, has had it, and was soy/wheat/peanut/treenut/milk/egg allergic at that point in time.
« Last Edit: June 21, 2012, 09:32:13 PM by CMdeux »
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline hurleyreyes

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #5 on: June 22, 2012, 12:31:24 AM »
Wow - you folks are awesome!  Thanks for all these suggestions.  I really appreciate the time you all took and your moral support as well!  (special shout-out to twinturbo - thanks!)

Based on all of the input here and elsewhere, our initial game plan is to:
1. increase his solids (he loves chicken, beef, rice, fruit  and veggies and I think will be game to eat more than he has been)
2. use some frozen milk (only some have caused rash, and only a rash - so we'll risk some in small amounts)
3. use some neocate with juice added or mixed into something he likes to eat
4. water, rice milk, and pedialyte if I get into a hydration crunch
4. just get through the week, doesn't have to perfect - and then figure out the long term post-breastfeeding plan

I will have help, thankfully.  During work week, I normally watch him 3 days a week and nanny watches him 2 - but I'm going to have her come for some extra hours and then both sets of grandparents will be in town at end of week because it's almost his one year birthday (for which my wife will fly back just in time).  It'll be the first time it's not both of us at night and in the morning - so I'm sure that will have it's challenges but I won't be alone the whole time.

Thanks for all your posts.  We thought we were totally prepared for this scenario but the recent uptick in his allergies threw our frozen milk plan in flux - nice to get so much assistance here as we scramble to adjust.

I will be back to report how it's going (and probably to ask for more advice as the week unfolds). 



« Last Edit: June 22, 2012, 12:51:09 AM by hurleyreyes »

Offline Jessica

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #6 on: June 22, 2012, 03:42:12 AM »
Slightly unrelated but if your wife is planning to nurse again after she gets back, she should try to pump while she's gone. Even if she throws the milk away it will keep her producing for when she gets back. Good luck!
USA
DD18-PA/TNA
DD16 and DS14-NKA

twinturbo

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #7 on: June 22, 2012, 06:24:13 AM »
The support is going to help. Make sure everyone follows routine, I've noticed things get 'lax' on hand washing and 100% adherence to cross-contamination protocols when mom (me) isn't there to referee.

Get your menu planned, have a few instant meals on hand for baby AND you, assemble your arsenal of substances food and drug that you'll need to survive three days. Pack a hospital bag to include in your emergency action plan for an allergic event. Know where all your epinephrine is, have plenty of freshly opened children's diphenhydramine (Benadryl) on hand complete with known dosage to EVERYONE, reserve some of your oral syringes for Benadryl use. In case.

The hospital bag should have nearly the same items as a hospital bag for birth and delivery. Comfort items, food, OTC drugs for parents and/or child, canister of Neocate or some premeasured doses, extra bottles/nipples, water to mix formula*, small bottle of Clorox wipes, photocopy of insurance card, change for drink machines, phone numbers (you can't always use your cell inside the ER). Include a bottle of Benadryl here and some epinephrine. I've had experiences waiting on a backlogged ER pharmacy to send out emergency meds. They even made mistakes and had to reissue the med. Yeah, that's a great experience. Lesson learned.

The plan is to not need the hospital bag. But when an allergic response starts rearing its ugly head you'll be incredibly relieved to have all that you need on hand.

BUT... I've done days at a time absolutely alone with both my kids. It's doable. The night routine could be rough if your child nurses to sleep. In that case fill his belly with other nutritious stuff then go for a car ride to see of the rumble of the car and carseat is enough to knock him out. Feeding with syringe in the middle of night could be the toughest part but again, been there.

The bright side is you will engineer new survival tactics. Necessity is the mother of invention.  ;)

*You don't want to use the sink water to mix formula in the ER. The water from vending machines is also too cold for formula to mix. Clorox wipes are to wipe down extra surfaces since you have NO IDEA what was there before you (superbug?) and the child is so young.
« Last Edit: June 22, 2012, 06:28:26 AM by twinturbo »

Offline krasota

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #8 on: June 22, 2012, 09:41:01 AM »
It would be super pricey, but can your wife overnight milk home?  What about the two of you accompanying her?  With a doctor's note, sick leave would be possible for your leave, I imagine.
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DS (04/07) eggs (baked okay now!)
DD (03/12) eggs (small dose baked), stevia
DH histamine intolerance
Me?  Some days it seems like everything.

Offline GingerPye

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #9 on: June 22, 2012, 11:26:33 AM »
just adding that I wish I'd had this board when my DD was a year old and we were having similar problems.  DD ended up with a feeding tube at 15 months.  You really want to avoid this!!!  (not our fault -- we were doing everything drs told us to do --- and dr finally said we'd have to do the G tube.  We'd had an ng tube before that for a few months in hopes of not having the G tube.)  If I'd had these suggestions posted here, I would have tried them and possibly would have avoided that G tube.    :-/
DD, 25 - MA/EA/PA/env./eczema/asthma
DS, 22 - MA/EA/PA/env.
DH - adult-onset asthma
me - env. allergies, exhaustion, & mental collapse ...

Offline rebekahc

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #10 on: June 22, 2012, 12:18:04 PM »
One other thing I just thought about.  You might try giving him the formula in a sippy cup rather than a bottle.  When my son was a baby, I breast fed him and once he was old enough he had juice from a bottle.  Once, I needed to have an MRI with contrast and couldn't breast feed until the radiation was out of my system.  He absolutely refused to take my expressed milk from a bottle.    When he weaned himself at 11 months and we had to give him formula the same thing happened.  For him, bottle = juice and he would NOT drink anything else from it.  However, he would drink breast milk, formula, water, etc. from a sippy cup.  Maybe your son is the same way?

My daughter was even worse - she wouldn't drink anything from a bottle.  Ever.  She had to go straight to a cup.
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline hurleyreyes

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #11 on: June 22, 2012, 06:48:04 PM »

TwinTurbo - We hear you on the hospital bag - we've had one assembled for a while and, sadly, put it to use a few times.  BUT... I had not thought about the water!  GREAT tip!

And thanks to those of you who commented about my wife's milk supply.  She's a world-class pumper (pumps all the time for work).  We thought about overnighting milk but for at least part of her trip she won't be able to maintain her exclusion diet.  She may send back a few bottles early on.

T-Minus 2 Days Update: Nanny was watching our son today and began the switcheroo... his bottles were half neocate and half milk... and it's gone fairly well.  The particular bags of milk were apparently clear of allergens and he drank the stuff with only a little protest.  We're going to transition over the next two or three days... and will probably keep some milk in the mix unless he really takes a liking to the formula.

Funny about the containers you give kids - we've been experimenting with which works better (the same bottle as the milk or a different container like a sippy cup).



Offline CMdeux

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #12 on: June 22, 2012, 07:27:11 PM »
Oh, that is TERRIFIC news!  What a relief it must be to know that you can mix with the Neocate, at least. 

One other tip about a "911 bag"-- we used to keep a tiny version of a comfort object in my DD's epipen bag.  We learned that lesson the hard way when she was little.

  She had a thing for satin/smooth textures, so we used some inexpensive blanket binding to make her a tiny "blankie" about the size of a hankerchief.  It was a life-saver.  Well, not like epinephrine, obviously, but when you're tiny and you're being poked and prodded and you're just plain scared and exhausted, it's nice to have.   :)
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline Linden

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #13 on: June 22, 2012, 11:26:26 PM »
It's good to hear things are going so well.  A few notes for others who may read this thread some day.

My DS hated the Nutramigen until one day my mother heated it until it was the temperature of breastmilk. (At which point the probotic is not active, but we were okay with that).  He happily drank it that way.

We also had an experience similar to Rebekahc.  DS liked breastmilk enough that he would take it from the Avent bottle.  But the formula had to be given to him in a different brand that had a different "flow".   

I don't know about the rice milk combined with the almond allergy, though.  Many rice milks are made on shared equipment with almond. They may not be labeled as such either.

My sympathies to your wife and trying to maintain a safe diet while traveling.  I traveled a lot in those days and lived on pre-packaged, well-labeled snack food, salad (with no dressing), Corn Chex, and Rice Chex -- to the point that even now, more than a year later, I still can't get used to eating regular, non-snack food again.  But it did manage to keep the milk safe.
DS TNA/EA, avocado, environmentals, asthma

Offline hurleyreyes

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Re: Need help ASAP - MFA 1 year old - won't take formula.
« Reply #14 on: June 25, 2012, 09:50:10 PM »
Hi everyone,

Thanks again for all your help.  A quick update:

We're on Day 2 and my son is doing great.  The mixing milk and formula transition idea worked like a charm and he now will eat a bottle of 100% formula as long as it's warm.  This morning I remembered another trick from when he was 6 months old and my wife first went back to work... I walk him around the entire apartment so he can see for sure that mom is not around (and therefore that he has no other options than the bottle) and then he seems to drink the bottle more willingly. 

I'd say the only hiccup in the plan is some constipation issues.  I think it's both the formula and the sudden increase in the amount of solid foods he's eating.  We're gave him a bottle of water and a little prune juice - hopefully that will help things along.