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February 10, 2006 at 2:20 pm #1295AnonymousInactive
Hi Lori,
Just wanted to let you know – my son is 22 months old and has had a full fledged food aversion. He drinks about 6 to 10 bottles of formula a day and eats very little solids. Sometimes a few bites of something but there are days when he doesn’t eat anything at all. He won’t drink anything but one type of formula and only if it is thickened with Gaviscon. He is huge and developmentally on target so it is possible to sustain them on just formula for quite a while!
I have had specialist help with him since he was 6 months old to overcome specific aversions around food (such as texture/temperature) etc. The single most important factor, however, in all of our professional help was that we did not force anything on him and that we never let him experience our frustration. His own aversions were easier to overcome than any psychological ones that we created by giving him negative associations around food.
We started with bite and dissolve foods. That was the absolute key to our unlocking his food aversion. This is because the food essentially disappears once it mixes with saliva. If you can give her some bite and dissolve foods, that might be helpful. Some reflux kids find swallowing foods distressing so the dissolve foods are great psychologically for them. I am not familiar with Canadian foods but here there are Wotsits or Quavers that are bite and dissolve. Mostly these are the puffed corn type of foods. (Cheetos?) They have some mild flavour ones here and some organic healthy ones now too for kids. Stronger flavours stimulate the swallowing reflex so don’t be afraid to offer strong flavours.
This type of food that seemingly disappears will enable her to increase her confidence with foods in general. She can suck or chew them. For a long time my son sucked Wotsits for a second then would spit them out but eventually he got to where he would munch and swallow them. I cut them up into tiny pieces in the beginning because he didn’t want to bite into the whole piece but would put the miniscule amount into his mouth.
My son finds the whole highchair restraint combined with food far too intense for him so he runs around the house and takes his bites. I put finger foods in little pots around the house so he can *find* them and eat them as he likes. Control is often important to kids who have food aversions which is why the bite and dissolve foods are so great, especially when they are too small to feed themselves with a spoon.
While he doesn’t eat enough food to sustain him (as I said his primary nutrition is milk) he has overcome his aversion to food. Now we have to establish the link between solids and hunger. He still doesn’t associate food with hunger – he only associates milk with hunger! But we are well on the way.
He will now take a bite of almost any food no matter what temperature, texture, smell, colour, etc. as long as he is in control of it. You say your daughter will hold food and belive me, that is a good sign. There are kids out there who literally cannot touch food or even have it near them so she will probably come along with a lot of patience and some advice on desensitising her to foods.
If you have any questions, please ask. I’ve had feeding therapists hopping around my house, watching my son eat (or not eat as the case may be!) and have had lots of help and advice.
Don’t get discouraged, it is so tough. I have finally accepted that this is the way he is but when he was 9 months old I was still REALLY raging against it and trying to sort out where I had gone wrong or what magic trick I could do to fix it. It is a slow process but he has come far with educated support from his mommy and daddy.
February 10, 2006 at 3:33 pm #1302AnonymousInactiveDarla, thank you so much for your detailed reply. I am glad to hear that your son is doing much better, but I have to admit, that I am also scared to think that it can get that extensive. I hate to imagine that we could be dealing with this for so long. While I have never forced food on Hailey, I have forced MEDS, and I really believe that has made things much worse. She hates medication, and has hated a syringe from the first time I put it in her mouth. Every time I have had to syringe her meds (I usually put them in her milk, but if she refuses too often then I have to syringe them), I have noticed that her aversion has worsened. So it’s certainly a catch 22! At this point, it really saddens me that we have gone from a child who eagerly had interest in solids, to a child who was cautious of solids, and finally to where we are at now- a child who won’t take solids. Did your son always accept a bottle, but just not solids? Our issue is that Hailey also won’t take her bottle unless she is sleep-fed. It is really insane, and scares me as well.
As for bite and dissolve foods, she was interested the first day I put them out (I tried veggie stix, cheezies, and veggie booty), but once she realized that these things were for eating she was no longer interested, and she now won’t even touch them.
Did they ever find out why your son had a food aversion, or was it just attributed to reflux? I truly believe that there is a reason that Hailey won’t eat. I believe that she is in pain, and everytime we have a reflux flare-up, things seem to go downhill. Trying to get people to take us seriously has been very difficult… it seems that unless they’re FTT no one really cares.
Thank you again for your help.
February 10, 2006 at 3:40 pm #1305AnonymousInactiveSorry it took me so long to get back to you on this! We were really concerned that he wasn’t eating solids. He would turn his head and cry when he saw the spoon. I told the ped about and he said that I need to get him to eat solids (well obviously i knew that) and that we would start weight checks if he was still not eating solids at 9 month checkup. It seemed like he started eating them around 7 months old. I know that he still doesn’t eat as much as he “should be at this age” but i know it is a start. I am sorry that i really don’t know what changed!
February 10, 2006 at 4:44 pm #1311AnonymousInactiveLori, Alex has waxed and waned with what he would and wouldn’t take. There were times when he would take pureed foods from a spoon and even times when it seemed like we were making steady progress but then something would happen – like he would get a cold – and we would be back to square one. Sometimes he would take one particular food for a few days then never eat it again! He was always changing. So like your daughter, he has shown an interest and then dropped it only to again show an interest then drop it…..persistence coupled with creativity are really all that have helped.
As far as the bottle, he started refusing the bottle at 4months old and I just persisted. I mean really persisted. I was so determined that he was not going to go on a GN tube. I did everything to keep him comfortable with the formula and was eventually able to coax him into taking it during the daytime. But if he had his way he would not have taken anything at all. Now he is usually quite happy to take his formula but there are still times when I have to comfort him and relax him to get him to take it.
One thing – statistically it is unlikely that your little one will continue to reflux as long as Alex has – I’m sure you know that. His reflux has not improved at all so that’s probably the main reason that he is still reluctant to eat solids. I think his food aversion is a combination of things, no one thing and I agree, pain is involved as is the forced medications.
His Ped says that this feeding aversion is quite typical of reflux kids and the ped is quite pleased with the progress that we’ve made. Do your Dr’s think your daughter is unusual?? The ped explained to us that just the mere smell or sight of food starts the digestive process (just think of salivating at the smell of a favourite food) and can release stomach acids and trigger reflux episodes. So, yes, the food could be causing her pain or at least sensations that she finds unpleasant and she will develop a negative association. It can take a while to develop the negative association so this could be why she started out ok but then lost interest.
Alex has always hated his meds and still has to have them given in a syringe and often only by me. I have to sing to him and coax him into taking them. It is tough and I agree it can definitely increase their oral defensiveness but there isn’t much that can be done about that. The meds definitely help him so we aren’t stopping them.
I really hope the Docs are taking your daughter seriously. It must be desperately frustrating if they aren’t. And I hope to god they aren’t blaming you for it, GGGGRRRRRRR. Or telling you that she’s manipulating you……GGGGGGRRRRRRRRR!!!!! That attitude makes me furious. My son has always been a big boy but thankfully we’ve got a ped who knows that FTT isn’t the only feeding problem that reflux causes.
Lordy but I can write a long post….!!
February 10, 2006 at 5:19 pm #1314AnonymousInactiveDarla, thank you again. And BTW, I too can write a long post. Our doctors aren’t taking Hailey seriously because she has gained weight, so they don’t seem to care that she won’t eat. As for them blaming us, well let’s just say that we spend 3 hrs at an infant psychiatrist and they didn’t ask more than 5 questions about Hailey, and the rest of the time was about our childhoods, and how we enjoy being parents, how we play with Hailey etc. The psych kept saying that I must have force fed her, or that if she is gaining weight then she’s eating enough, so basically we have the problem and not her. Yes, it is very frustrating, and also extremely discouraging sometimes. I really appreciate you taking the time to post for me. Thank you again. I hope that your son continues to improve.
February 11, 2006 at 4:34 am #1330AnonymousInactiveOh my gosh, Lori! That is awful. We’ve had a few General Practioners tell us that Alex’s troubles were our fault but once we got to the peds they all recognised his aversive feeding pattern as quite typical of a refluxer. How terrible for you, I know that even with support and everyone telling me that his aversion is due to reflux, I still question my own influence. I’ve spent hours racking my brain trying to figure it all out but have finally come to understand that this is about him, his aversion, there wasn’t much I could have done differently to help him.
I hope you really really know that her feeding difficulties are her way of coping and have nothing to do with you, in spite of what anyone else tells you. Good luck with the appt you have coming up.
March 9, 2006 at 12:09 pm #3406AnonymousInactiveLori,
Have you posted about your feeding clinic appointment? Just wondering how the feeding is going and if the appointment was helpful at all?
Hope things are getting better,
Darla
March 9, 2006 at 5:17 pm #3434AnonymousInactiveHi Darla,
Thanks for asking. Unfortunately, we are still stuck in feeding-aversion-he**!!! It’s awful, and she won’t take any solids, and still only sleep feeds about 18 oz or so. We are now on 24cal/oz formula.
We ended up having to cancel at the feeding clinic because Hailey’s case was too severe, but were referred to someone from Home Care- an SLP- who deals with the more severe cases. She has been here three times. The first time Hailey just went nuts and screamed like crazy the whole time. The second time and third time she was a bit better. So far no real improvement. She is trying to get Hailey to feed herself bite and dissolve foods so she feels more secure with eating. She will now hold them, but doesn’t really eat them…she’ll put them near her mouth though (I guess an improvement…I think?).
Do you have any advice now that Alex is eating better. Was there anything that the feeding therapists did that really worked with him? Any tips might help. Thanks again.
March 10, 2006 at 9:17 am #3492AnonymousInactiveHi Lori,
Yeah we had the same – an SLP who came to the house. She did the same with the bite and dissolve foods. Funnily enough, I did not think Alex would EVER actually eat any of the food but as the weeks went by he finally did put the food in his mouth (although he shivered and gagged A LOT) but then he wouldn’t let the food stay in his mouth long enough to dissolve!!! At first he used his fingers to take it back out but eventually he got to where he would eat a few pieces. It took a long time and a lot of patience. I had to cut the bite and dissolve foods up into small bits so that he didn’t have to crunch down on it, just roll it around in his mouth using his tongue.
I was like a maniac with the bite and dissolve foods, lol!! I had them everywhere…I was constantly handing them to him, in the car, out on walks, when he was playing, everywhere except his bed…!! He got so used to holding a piece of food in his hand that he would look for one if he didn’t have one. But I think the best advice is just to make sure that Hailey doesn’t associate “frustration” or “tension” with food, sometimes I had to leave the room and count to ten to stop myself from letting him see my frustration….whatever it takes.
It sounds to me like she is making progress but you will probably only see it as the months pass. It is REALLY tough to be where you are, you are right when you say it is HEL*. It is the most frustrating desperate experience I’ve ever been through in my entire life and absolutely no one understood what we were going through. People say things like, “Oh, yeah, my little Susie doesn’t like fish and it makes her gag so I know what you are talking about.” and I just wanted to punch them!! Or they would say stupid stuff like, “Have you tried raw carrots? My little Johnny loved raw carrots.”…..ARGH!!!
Now that he is over his food aversion and will taste pretty much anything and even swallow it and doesn’t shiver and doesn’t even GAG anymore (wooohooo) I realise that most of the impediment to his establishment of a regular eating routine is because he gets sick so often and so severley (as I posted in my other post). Hopefully Hailey won’t suffer setbacks from other illnesses as Alex has and will progress much more swiftly.
So I think it is wrong when I say that he has a “food aversion” – he actually quite likes all kinds of foods now! I just haven’t managed to keep him well for long enough to get him used to a feeding routine that resembles “meals”.
I don’t know if any of this helps but I know what you are going through and it is damned tough, hang in there.
March 10, 2006 at 12:42 pm #3521AnonymousInactiveMy daughter is only couple weeks older than yours and she’s exactly the same way. I cannot get any solids in her. She fights and cries. We have been going to feeding therapy for 5 months and i don’t see any improvement, but we go because we like the physical therapy part of it. My GI doctor put her on appetite stimulant so we are going to see how that is affecting her. I will let you know.
March 10, 2006 at 4:21 pm #3548AnonymousInactiveOMG, Hailey sounds so much like Johnny! Johnny also relies solely on 18oz of formula to survive (sleep-feeding mostly). He gags and tries to throw up almost every solid food, which he loved before. I am really at lost as to what’s going on with him and always worry that he might develop food aversion if he keeps going like this.
I know exactly what you are going through, and I am sure you must be like me, wonder all the time when they are going to outgrow this. Hang in there & big hugs.
March 10, 2006 at 4:32 pm #3549AnonymousInactiveThanks for the support. It’s awful having a non-eater. We just saw a feeding doc today who was supposed to evaluate the need to up Hailey’s prevacid (which he prescribed 2 weeks ago). The first thing he said to me is “well she doesn’t look malnourished so I think things are all right”. I was like, HUH??? When I told him that Hailey was taking about 18 ounces, he said “well, that’s up a bit from the 14-16 she was taking when I saw you 2 weeks ago, so I’d say that the prevacid’s working and we don’t need to up the dose. Her increased intake is reflective in her increased weight and I’d say things look good. I know you say that nothing’s changed, but I’d say to you that you’re not being totally objective, because you’re stressed out about this. Let’s leave her for a month and see how things go”.
We were out of the office in 10 minutes. I was left baffled. How does he think that 18 oz a day is fine, all sleep feedings, with back arching? This has been such a puzzling journey. I hope that your appointment with Johnny goes well. Keep us posted.
March 10, 2006 at 5:03 pm #3551AnonymousInactiveWhat an a****** the doctor was!!! Unfortunally, we hear that from doctors all the time, don’t we? I hope the doctor Johnny is going to see is the exception.
March 10, 2006 at 5:18 pm #3552AnonymousInactiveIt’s so strange, because he’s actually a really nice guy and was so kind to us last time. Maybe it’s because I told him that there was no way I was putting Hailey on propulsid, especially if she doesn’t have DGE, and especially if we have motilium available (the one upside to having reflux in Canada, it seems). I didn’t feel stressed or upset when I was talking to him, so I’m not sure where that came from. I’m so used to it now that I don’t care. I’m just going to have to take matters into my own hands, because it seems that no one will take a child seriously unless they’re FTT.
March 11, 2006 at 8:42 am #3597AnonymousInactiveThat was so stupid for him to say and it makes me so angry! Hopefully he was just having a bad day! Have they talked about an endoscopy or ph probe yet?
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