Posted By Posting
Mar 25, 2010
shan
Gastroscopy results... still no answers
Hi there

My son is almost 2 & a half & still has a terrible food aversion & therefore poor weight gain. He is on an appetite stimulant Periactin & is extremely difficult to feed even on it. He won't feed himself & only accepts food from me. He takes up to an hour each meal & i have to entertain/distract him the entire time to get him to eat anything. He does not like food, has no favourite foods, shows no interest in any sort of food ever, moves away from it etc

He has just had a Gastroscopy & biopsies taken for suspected EE due to the food refusal but it just showed mild chronic inflammation of the lower eosophagus. The plan is to keep him on the Omeprazole & Periactin - so nothing has changed!

I just wondered if anyone has any suggestions on how to get him interested in food, to start feeding himself and to start enjoying food??!! (he won't even eat an ice-cream or any treats)

Thanks!! :-)

Mar 25, 2010
shan
p.s he has refused to feed from a few months old. I fed him when he has asleep for many months as a baby, as he would not breast or bottle feed when awake.
Mar 26, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Real fast as I just got off work and I'm heading to bed (iit's past midnight here now)

Are you cycling the Periactin?? Kids I know that are on it do better when they cycle it. Like, take it for 3 weeks stop for one week. Each child reacts differently and their cycle length would be longer or shorter depending on how they do.

I'd ask the GI about it and see what he says.

Are you working with Early Intervention or a Feeding Clinic of any kind???

Mar 26, 2010
shan
Thanks for replying so late! It's the middle of my afternoon at work down here!

Yes we do 5 days on Periactin, 2 days off per week and sometimes if it doesn't seem to be working we'll do 5-7 days off, then when we re-start it, it has a good effect for a few days.

Unfortunately in New Zeland we don't have any sort of early intervention or feeding clinic. We did see a speech language therapist who wasn't helpful at all.

The paed gastro-enterologist hasn't prescribed the Periactin, our original reflux Paediatrician did, and in fact he doesn't 'believe in it' and said it's up to us if we give it or not! It definately had a dramatic impact for us, but as i said feeding is still a BATTLE EVERY DAY and EVERY meal.

I don't think the reflux is too bad anymore when on medication, and the gastroscopy only showed 'mild' chronic inflammation - does this mean it's behavioural?? How do we change this feeding behaviour after 2 yrs of Reflux? (p) Thanks for listening/reading! :-)

Mar 26, 2010
shan
p.s. again

jeddsmommy - i often read your replies to other people and get alot out of them myself. You have also replied to a couple of my queries in the past and are always so helpful and full of so much info/experience. Thanks for taking the time to respond!! I hope your little man is doing well.

Mar 26, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Thanks, sometimes we take for granted the opportunities we have here in the states to have access to clinics and such.

The first "rule" of treating a feeding aversion is to get the child out of pain and get the GERD under control. Depending on how bad those photos were from the EDG....there may still be some underlying issues there that need to be resolved before feeding will take place successfully.

Can you tell me what you do at each meal? Where does it take place? What kind of seating? What textures of foods? What types of utensils? Tell me whatever you can about HOW you do a feed......

I'll get back to this tomorrow. :-) ((HUGS))

Mar 26, 2010
shan
Umm... i think our feeding methods are pretty dysfunctional, it's almost embarrasing to write here - but we've had to do what we could to get food into him over the last 2 years!

He almost never eats breakfast, but if he does it's on the couch in front of his favourite TV programme and i have to talk about what the characters are doing the whole time, to keep him distracted enough to eat and he has to be holding a toy in his hand. I am strict about keeping his hands down, as he would always hit the spoon/food and this seems to have stopped for the time being. He turns his head rapidly from side to side and bangs it backwards on days when he doesn't want to eat. As well as screaming, crying, yelling 'no' and 'all done', gagging, spitting out food, saying he needs to wee or drinking lots of water to avoid the food.

For snacks and lunch the only way i can get him to eat is if he's busy playing(eg at park or doing an activity) and i break food up into small pieces and put it in his mouth.

I am most strict with him at dinner time and make him sit in his highchair and feed him pureed food. He will not feed himself and won't eat finger food. Again, we need toys, TV etc and have to work hard to distract him during the meal, keep his hands down. It usually takes 2 of us - me feeding and my mum or husband helping with the distraction, and takes 45 mins to 1 hr, i try not to go longer than this.

I try and eat with him whenever i can, try and encourage him to handle/play with food between meals, have tried feeding him with other kids, at his little table and chairs, at the big dining room table etc. and there's no difference in his behaviour. I have given up on solid/finger foods and getting him to feed himself. He will play with a spoon and very occassionally will get a little bit in his mouth. He likes to play with knives and forks. I have found lately now he's a bit older i can bribe him a bit to eat - eg we won't go to the park unless you have a bite of this sandwich.

At birthday parties when all the other kids are around the food and cake, he will get himself as far away from it as possible!

Sorry for the rant and all the detail..... thanks again :-)

Mar 26, 2010
shan
Also, i don't think he is in too much pain anymore, in the last few months for the first time ever the reflux seems to have settled down. He very rarely vomits now and even when he was sick recently (would usually flare up) and off the Omeprazole for 2 weeks prior to the scope (which i was dreading) it seemed pretty good. The gastro-enterologist thought the scope looked pretty good, and doesn't want to follow us up - has just referred us back to our regular paediatrician. He did say at the entrance to his stomach is a hole, where it should be closed.... He advised to continue on the meds for 6 months or so, then trial stopping them and see what happens. But none of this helps our NO EATING problem! that we have to live with every day!!
Mar 28, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
If you don't think he is in pain and believe it to be a learned behavior you might want to see if there is an OT or someone who works with feeding issues. Even if there isn't a feeding clinic maybe your GI or a Children's Hospital in your area could find someone for you to work with?? ((HUGS)) I know how hard food refusal and meal time battles can be.
Mar 28, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry it took me a bit to get back to you, worked this weekend and then hubby went out of town so it took a bit being by myself to get back here.

From the sound of it you are really dealing with just a food aversion. Sounds just like what Jedd did to us, but he was younger. The older the child, the harder it will be, I'm not gonna lie to you ((HUGS))

To start, I suggest you set on standard for feeding/mealtimes.

Use methods each time. Do not, do not, do not, vary from it at all. Children can spot a weakness from a mile away.

What it common practice in most clinics here in the states is to use the high chair and set a time for the time of the meal. Talk to him as you are doing it explaining what you are doing.

Offer him a bit off the spoon and let him know that if he complies, you will turn the TV on. Try to use his favorite show KWIM.

Over time, you can make it 3-5 bites to get the TV turned on. If you are seeing any food swatting or spoon swatting or batting with the hands at you, keep the TV off, let him know that it NOT acceptable behavior in a stern firm voice and hold the spoon back out for a bite request him to take a bite.

As far as food to use, I'd start with what you KNOW he is capable to eat, if that means using puree foods, use that. It's OK. You have to start where he is ready at.

Consistency is the key. Each and every meal must be done with the SAME protocol by each and every person who is feeding your child.

For this reason, it was pretty much ONLY ME feeding Jedd forever......it needed to be as consistent as possible. This will really wear on you, it will tire you out and will be the hardest thing you have ever done. Again, I'm not one to sugar coat things....the end result will be worth it though.

I like to tell people that teaching Jedd to eat was the number one hardest feat I ever accomplished. But it was worth every second.

Jedd used to like to gag and puke thinking that I would end the meal, as he started gagging, I would tell him sternly, Jedd if you gag and puke Mommy will keep feeding you after she cleans you up. And I followed through with it....he after sometime, learned that even puking would not get him out of eating a meal.

It is a S-L-O-W process. It has taken us about 2.5 years of in home therapy to get to the point we are at and Jedd still will not self feed every meal and still tries food refusals. Over time though, it has gotten much much better. If you were to watch us eat as a family out to dinner, you could tell something was a tiny bit off....but you wouldn't be able to put your finger on it. I still do ALOT of his feeding for him. He does most of his drinking now. I have his meals times to about 30-45 mins. a good time frame for his age.

FWIW, I wouldn't stop meds. I would make sure you stay on them for a long time. We just did a med wean and lasted 30 days and we were seeing GERD issues. By day 45 we were seeing full blown food refusal again and gagging and puking. It was horrible. We will not med wean again until Jedd is 5 year old. He's 3 now. It's just not worth it. Esp. not while you are doing any type of feeding therapy.

Do you have a Facebook page???

Apr 13, 2010
shan
thanks
THANK YOU so much for your replies and valuable information. So sorry it has taken me a long time to reply - I have been on holiday! :-)

jeddsmommy - thanks for the tips. Some of it we are already doing so it's great to know we're on the right track, and a few other things i have now started doing, so thank you!! I visited jedds website and yes i'm on facebook, will private message you details so you can find me! :-)

Check with your
doctor first!