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Feeding disorder/sensory feeding issues due to reflux

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#1 Wonderstruck

Posted 14 March 2019 - 08:53 PM

Lily is 2 and has severe reflux and a dairy and soy allergy. We have been doing feeding therapy with a speechie since she was 14 months old.

Frustratingly the small gains we made have  been lost - she was chewing apple and pear and trying more foods.

She's back to mostly puree, she wont eat meatballs and still cannot manage anything mixed at all - no sauces, no lumpy foods, nothing mixed together.

She eats like shes just starting solids and it is exhausting. Water drinking us terrible and she doesnt like other fluids other than her oat milk.

I'm exhausted and tired of thinking of what to feed her. I'm sick of people thinking shes just picky or I didn't offer enough textures or I'm not strict enough.

It feels like this will never improve.

For those who've been through this- when did your child manage to eat normally?

#2 Jenflea

Posted 14 March 2019 - 09:02 PM

I'm assuming a tongue tie was ruled out?

#3 Wonderstruck

Posted 14 March 2019 - 09:18 PM

Yes. It seems she has the skills to chew just a whole lot of aversions and sensory issues.

#4 blimkybill

Posted 14 March 2019 - 09:32 PM

Hi there,

It may be that her reflux is still not fully under control. so the loss of progress could be to do with pain. From what I have heard there are great support groups for reflux (RISA?) and I am not an expert so i don't want to suggest much. But I have heard - look out for subtle signs of unmanaged reflux, eg gulping, swallowing, drooling in bed. She may need more active management.

I do know of kids who subsisted mostly on elemental formula until about 4 or so before becoming effective eaters. Due to severe reflux or eosinophilic oesophagitis.

I would just make sure the reflux is well managed, then roll with purees if that's where she is at. Eating trauma can take a long long time to overcome.

#5 Wonderstruck

Posted 15 March 2019 - 05:29 AM

Thanks RISA has been helpful. It is anticipated that she may be scoped by her gastro if her eating doesnt improve.

Thankfully she has a few professionals watching her. Its just so stressful.

#6 MrsG2

Posted 20 March 2019 - 10:43 AM

My niece didn’t have reflux or intolerances but she definitely had sensory aversion to all textures - my sister needed to give her smooth purées until she was 2.5/3 otherwise she would vomit everything. Not even the crumb of a chip or Cheerio could be consumed. Now my little niece is almost 4, and eats everything - somehow she just learned to experiment and try the new textures on her own.. hang in there, I know it’s frustrating especially when you can’t hand her a piece of toast for a snack , and need to meal prep different things for yourself and her .. she will get there !!

#7 AliasMater

Posted 20 March 2019 - 10:50 AM

My son is 10 and has been having feeding therapy since he was 9 months old. Not reflux, but he was intubated and extubated a lot in this early months and it created oral aversions.

Ignore well meaning advice, and continue the therapy.

Look up ARFID (Avoidant Restrictive Food Intake Disorder).

#8 Ellie bean

Posted 20 March 2019 - 11:03 AM

Do you think the reflux is controlled enough. I’m sure you’re all over this, just thought it’s worth throwing in that there can be a need to increase the dose with weight gain- I know my dd went backwards at around 18 months when we tried to wean her off the meds- please ignore if not helpful

#9 Wonderstruck

Posted 20 March 2019 - 11:33 AM

View PostEllie bean, on 20 March 2019 - 11:03 AM, said:

Do you think the reflux is controlled enough. I’m sure you’re all over this, just thought it’s worth throwing in that there can be a need to increase the dose with weight gain- I know my dd went backwards at around 18 months when we tried to wean her off the meds- please ignore if not helpful

We halved dose just before she turned 2. She is handling it well in all other eaysm her gastro will see us in early may and will revisit I think if things dont improve and is also considering a scope. It's in the back of my mind - so hard to tell

#10 Ellie bean

Posted 20 March 2019 - 11:43 AM

Yeah it’s really hard.
FWIW and only because you asked, my dd has a scope which showed nothing, she didn’t really eat much at all till after 2 (we were lucky though that she was obsessed with pepti junior and we never had weight gain issues), then she really did slowly outgrow the issues so that now at 6 she just has a lactose intolerance and has just now gotten over some lifelong constipation issues- and she eats normally- and her reflux as a baby was severe to the point of hospitalision. I never would have believed how well things would turn out 4 years ago. I hope that’s helpful rather than annoying- it does sound like your dds issues are more severe so I don’t want to be annoying.

#11 Veritas Vinum Arte

Posted 20 March 2019 - 11:56 AM

Another ARFID parent.

I have 3 very different children. An ARFID, a try on fussy eater and an adventurous eater who will try nearly everything (including wanting to try an oyster). Parenting the same way.

Mine took to eating fine, it was gastro at 15m which had him drop nearly everything. I have a 13yo who basically survives on Vegemite, Cheese and white bread plus v8 juice. Months of therapy at 10yrs added Maccas Nuggets and crumbed chicken. Still very resistant to a little bit of mince and plain pasta.

Life is exhausting, but mine is happy and healthy.

Just a post of commiserations.

ETA all 3 of mine were vomiting reflux until about 15m.

Edited by Veritas Vinum Arte, 20 March 2019 - 11:57 AM.

#12 RainbowDash

Posted 20 March 2019 - 12:09 PM

My child had feeding issues, reflux and poor weight gain. Our dietician was fantastic in suggesting different foods and ways to increase the calories/ nutrients of foods she would eat

#13 Wonderstruck

Posted 20 March 2019 - 07:06 PM

Thanks everyone. It's truly exhausting. Today she drank no water but tried some cheese which we've been trying to introduce for a while to see if she can tolerate it.

#14 SplashingRainbows

Posted 20 March 2019 - 07:36 PM

We’ve had issues with food aversions and restricted eating due to oesophagitis but not nearly as bad as yours and trust me I wanted to cry so many nights. Hang in there mama - it does get easier as they get older.

A wonderful dietician introduced me to Ellyn Satteryn’s division of responsibility in feeding last week (link below). We’d been so focused on getting our kids to eat (for good reason!) that it had made our lives very difficult and long term hasn’t done the kids any favors with how they view food.

I’m not recommending you do this in your situation right now. But maybe have a read, see if it fits. Discuss it with the professionals you’re working with. It’s actually been quite freeing for me. I’d gotten far too caught up in what they will and won’t eat and forgotten to teach them how to have fun with and enjoy food. The change in only a week by removing all pressure has been significant.


#15 Veritas Vinum Arte

Posted 20 March 2019 - 08:46 PM

I hate to say it but Ellyn’s Methods is the methodology I used from the very beginning. ARFID 13yo included.

#16 Wonderstruck

Posted 20 March 2019 - 09:14 PM

We follow DOR pretty much as per our speechie and dietitian but shes so stubborn and fearful due to the bad experiences she had I think.

#17 SplashingRainbows

Posted 20 March 2019 - 09:17 PM

Noted. I started out that way too.  But I can acknowledge in my family we’ve fallen away as the need to keep them functioning has overtaken. We’ve definitely gotten into some unhelpful habits that have been making meal times more stressful for all and me not encouraging my kids to learn, play and explore food.

As I said in the previous post there are so many other things going on for the op that I’m not suggesting she adopt this. Rather it was some information she may wish to consider and work through with her care providers.

Im not holding it up as a magic answer. Life’s far more complicated than that.

#18 Wonderstruck

Posted 21 March 2019 - 06:47 AM

It can be difficult to keep at it and I know we all can fall into the trap of doing what we need to, to get by.

I try to keep it up but it is tricky when you both work full time so most of her meals are with her grandparents (who are a little more lax) or day care (who do their best)

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