My Daughter's feeding problem... a cry for help and support :(

Hi lemon drops I'm facing the same issues with my 1 year old she is a former 26 week preemie we have finally started feeding therapy but every bite is still a struggle and our whole life revolves around her meals. Can I please contact you via email if possible? Thanks

I've often wondered how you got on lemondrops, so pleased to hear you've come so far!!

Hi Sasha, I remember when DD was really fussy with food. She still is and will only eat certain things. I take it that DD can take solids? What I was suggested was leave food everywhere in the house for her in her bowl. Say, 2 baby carrots in her bowl by the coffee table. 2 biscuits in another bowl on the chair. 2 cut up grapes at another spot. Maybe she will nibble at them. Try making home made milk shakes for her. Strawberry, ice cream and milk. And bring one cup out for her and another for you. Make a big deal about it. If she has even sip, make a big deal about it. I also notice that with my DD, she'll eat better with kids around. When other kids eat, she tends to follow suit. So, if she's at home alone with me, I have to be the one eating with her, sitting next to her and keep on saying oohh yumm!!! Oh, also, I noticed that if I involve DD in the cooking process, she wants to eat them as well. Like, choosing the fish, helping pretend cut the veges etc etc.. :)

Hi I know this is a really old thread but it's closest to the problems I'm having with my 15 and a half month old daughter. She's had feeding problems from the beginning, thankfully I never had to resort to syringe feeding but I've had very little support regarding the feeding problems. Everyone seems to conclude I'm doing something wrong or that my daughter is just a picky eater. Also, I've met ppl who's kids are not either good with drinking milk or with eating but never both! I thought once it gets to solids it might get better but it hasn't. And it's not that she's not hungry, she'll only eat or drink when she's really really hungry, sometimes not even then. What really scared me was a few days ago where she hadn't eaten or drunk anything for five hours since waking in the morning and she was getting cranky cuz she was hungry. But she drank 2 oz milk, was still hungry, then I tried to feed her Plain yogurt (which is the only thing she eats), and that too she just had a few spoons. The scary part was that she had beads of sweat pouring down her face!!! Which means low blood sugar, that means she was sooo hungry but still refused to eat or drink milk. And now since the past 3 months she has resorted to exclusively drinking milk while sleeping. I tried to put her to sleep and then fed her milk. I really don't know what to do. It takes me over two hours to feed her bottles (while she sleeps) because she'll take 2 oz realize she's drinking milk, then reject it and go back to sleep. Right now she's only takin 3 bottles a day ( while sleeping, and that too she doesn't finish, so hardly 15-18 oz a day). One after bed time, one before she wakes up in the morning and one during nap time. And if no nap then no bottle!! Other than that it's just yogurt, and that too half a cup, and maybe some vegetable purée. But it takes me an hour to do that too, while distracting her with cartoons and holding the spoon in front of her mouth forever till she decides to eat it! I thought it would get better by now but it's just getting worse and her intake just keeps reducing everyday. I think she has some sort of oral aversion but I don't know what to do. I live in Saudi Arabia but am visiting my parents right now in Dubai. If anyone could suggest anything that would help I'm really open to anything! As to her history, I had a natural birth full term, and everything was fine with me and the baby. My milk came in late, like after 6-7 days, and I really wanted to ebf but couldn't. Also because when I started feeding her she became an extremely colicy baby! I have now learned that it was unrelated because after 6 weeks I completely stopped bf her and the colic stayed. I changed her milk to Similac total comfort, no help. Switched to hypoallergenic, no change. That was a very difficult time of my life, she would cry 7-8 hours everyday all night, during which....not feed, get tired sleep for 10-15 min, wake up crying for another 20 min and the cycle continued the whole night. Then she would finally collapse into an exhausted sleep, I would feed her while asleep and the next day it was the same thing all over again. This 8 hour crying thing continued for about 8 weeks, drs did nothing, said everything was normal. Then at 8 weeks, we had really bad 4-5 days. On the final day, she cried all night 8 hours, plus all day 8 hours, same cycle, not a drop of milk, she stopped sucking on pacifier, and was hungry but wouldn't suck the bottle. My DH and mil tried to feed her with a spoon and she was drinking hungrily. Then my mom realized what the problem was, the closest translation that I can do is a partial sterno-clavical dislocation. It's sort of common knowledge in subcontinent culture, or atleast the midwives there and family elders know of this condition. (the peds that I spoke to know nothing of it, but I know that's what helped fix most of my daughter's "colic".) My mom did a minor adjustment ( she knew how because it used to happen to my elder bro when he was a baby, and my older aunt had taught her what to do. Symptoms are uncontrollable crying and not drinking milk or sucking on anything. The thing is my mom knew that the baby doesn't drink milk at all in this situation, but apparently the baby can drink some (if ur not fixing it and baby's very hungry, or if it's not a full on kind of partial dislocation, I know it sounds confusing but I don't know how else to explain it). Btw the same night I had spoken to one of my cousins, and the same thing had happened to his daughter when she was a baby, had been going on for two weeks and progressively getting worse (then his mom who was visiting at that time fixed it). Anyway, after that day she never cried uncontrollable for hours on end, and though she did have gas issues, as long as I had done a colic massage on her tummy once or twice throughout the day she would be fine. Maybe 1-1.5 hrs of crying and this lasted about 5 and a half months. But during those 4-5 days (at the end of 8 weeks) where she had been getting really bad and crying in pain and not drinking milk, I feel it was really painful for her to suck and she associated that pain with milk and never liked to drink milk. She would be hungry and rootin around but not latch on, or not take the bottle. Then i learned To trick her into taking the pacifier and quickly switching wih a bottle after she had started sucking. It worsened right after this one feed when I tried to give her aptimel anti colic milk, and I wasnt aware but it sort of has some bigger particles in it so it would need a nipple with a bigger hole for it to flow right. Anyway the poor thing was sucking for half an hour and was only able to get half oz out! I bet that must have been really difficult and painful for her. So even after her sterno-clavicle thing ( like a partially dislocated collar bone, due to mishandling baby's neck or something like that) was fixed she continued with this feeding problem thing. After that I ways had to try different tricks to get her to feed. Hold her a certain way, not move the bottle at all while she's feeding, not move myself at all. Dreamfeed as much as possible because that was easier. In fact I can't remember when I felt that she actually liked drinking milk or it gave her comfort. I always had to somehow try to put her to sleep so that she would drink milk. And u know the viscous cycle of too hungry to sleep and to sleepy to feed! It was sooooo difficult. I thought with her colic days behind it would get better and I could just forget it all, but I have just had to keep changing or tweaking things to get her to feed. I can't remember after 3 months when she might have actually fallen asleep after a feed how babies normally do. I would feed her in a quiet room, a dark room, then I started placing a small handkerchief over her eyes and she would somehow relax enough to take the bottle. ( all the while always having to give her the pacifier first and then quickly switch to bottle, something I have to do to this day). From Lemon drops post, I can really relate to the part where she says she has it down to an art and she is the only person her daughter will feed from, her and the night nurse. But same goes for me, my daughter only drinks milk if I feed her, even when she was 2-3 months, my husband would try and she would either not drink at all or drink a bit and leave it. Even now when she's really hungy she will drink just enough so she doesn't feel hunger pangs or something. Same goes for eating! Solids hae just been a whole other story. I don't even know if I can post that long. But someone please help me!!!!! It's five in the morning and I'm up feeding my 15 month old daughter 1-2 oz every 10 min. She still doesn't hold her bottle ( though she physically can, and also coordinate it to drink it) because she simply wants nothing to go in her mouth, especially milk! I tried sippy cups, she drinks water ( that also not too much) but not too interested in milk. She's fine with eating bits off the floor and put things in her mouth and everything! Then why is it just with food! I really don't know what to do. The poster who talked about cranial osteopaths, did it help ur baby with feeding problems? And the feeding therapist in AlAin do u think she will be able to do anything for me?? Please help me! I'm a first time poster so I don't know if I add to this thread I ppl will actually be able to see it. I'll try to start a thread of my own with a link to this one. <em>edited by Sasha21 on 25/06/2013</em>

Hello LD First of all I wish you and your family all the best in these though times. You sound like a great loving mum. I'm not a specialist at all in the matter, but I can share with you the experience of my sister-in-law. She had major troubles feeding her DD, even when she was turning into a toddler. She had been to specialists so many times, without results. Only know (she's almost three) did they find out she has severe allergies. She can only drink one very specific type of baby milk, and there are many kind of foods she is not allowed to eat. Due to her eating so little, she was sick all the time, as she didn't have enough strength in her body to fight a simple cold etc. Now that they found the problem, she is doing so well. I have no idea whether this is the same case, but might be worth it to look into allergies, and not just superficially, but very much into detail. Best of luck

LD you have mail.

LD.... still have your email add. Have contacted SIL and once I hear back will get you guys in touch. I love Singapore.

Hi LD. Sending your loads of love right now. I cant offer any advice regarding the feeding issue BUT I have a wonderful and lovely SIL in Singapore who can help you out when you move. If you dont mind, I will talk to her and put you both in touch. They recently did an apartment hunt as well and she might have a load of info on moving, getting set up and just generally might be a good friend for you. I am making this offer in all seriousness so please do take me up on it if it will help you at all.

Hi LD, Did you get my email?

Hi Lemondrops, my heart goes out to you and your little angle. I might be able to help. Could you please send me and e-mail to give you more information: petra26 (at) gmx (dot) at xx

*Hugs* I'm so very sorry to read that things are not going well. You are very much in my thoughts and prayers. I am sure that you would have found a feeding specialist with expertise in oral aversion nearer home if there is one, but I am asking around just in case there's someone out there that you might not have come across yet - no luck yet, though :(. Lots of love Sian xx

Ok now I am just angry on your behalf, I feel like your pediatrician has been negligent in not finding you someone who could have helped you more but I guess there is no point dwelling on it. I have a few more ideas and can do some research and maybe contact a few people I know who might have more ideas. Could you email me and I'll try and draw you up some kind of systematic plan of attack. Let me know how she is reacting to the presence of the bottle in the room, it will give a good indicator of where she is at. As far as career changes, I already did a complete u-turn and moved from psychology to photography so DH might not be understanding If I were to flip back again :). Still, babies and feeding in any form is close to my heart and I'd really like to help you out in any way I can. <em>edited by kiwispiers on 12/06/2011</em>

LD I just read your post on the general forum where you give more info, so I should amend what I said below. I totally agree with you about insisting on having tests done to rule out the reflux and any other disorders which could be causing ongoing pain, I have to admit I assumed your Drs would have already done this. You don't mention if your daughter shows any signs of reflux pain now. This would be things like, waking in pain during the night, not being happy in certain positions and of course lots of refluxing (although it is possible she could show none of these and still have reflux and many babies can have reflux without any pain, and so not need meds). Its great that her aversion has not generalized, have you tried finger feeding her (dipping your finger or a dummy in milk or puree), how does she react (the taste of the milk itself could trigger bad memories)? Also you could buy a safe-feeder and put fruit in it for her to chew on, so she gets used to the flavours etc on her own terms. Depending on her level of motor co-ordination you can also let her hold fruit etc and gum it With my son my introduction of solids began with him sitting in the high chair while I ate and he watched and then occasionally letting him lick something I was eating I started doing this at around 4 months and didn't physically let him eat anything until he was over 6 months. I had planned baby-led weaning, and I still totally agree with a baby-led approach to solids but it became very apparent that his reflux was worsened with chunky foods and he also had a very sensitive gag reflex resulting in large vomits :(. I stuck with spoon-fed purees for quite a while but have always made it very on his own terms so I let him lean towards the food rather than bring the spoon to his mouth etc and never chase him around with the spoon or try to get him to eat more than he wants to. I believe this has contributed to the fact that he has never spat anything out and loves to eat everything with great gusto, often to the amazement of others in the room. It might not be so easy for you and you have a little more pressure on you to fast-track things so you might not be able to wait for your baby to have the correct level of motor skills (ie being able to sit unaided) but still following the basic ideas would be a good way to try to prevent any transference of aversion. There are lots of instinctive cues with babies and solids, ie they watch what you eat and feel safer eating from your plate. Even now, I always eat with him (generally I just eat spoonfuls of his meal, almost out of habit now and he goes ballistic if I eat something without including him in the deal). Also leaving an empty bottle on the floor near her toys for her to get used to as a plaything, and as she gets more used its presence, encouraging her to pick it up etc should help. The key to beating any phobia is a very gradual replacement in associations, so even just being able to see the bottle while she is doing something else (without seeing you holding it, or it being very near her) would be the very first step and you might do this for at least a week gradually moving it closer and closer but moving it away anytime she seems distressed by its presence. Any further negative experience surrounding the object will strengthen the phobia, so if she is upset by it, immediately throw a blanket over it etc and don't introduce it again on that occasion. As I said, I don't have specific training in oral aversion so I am just applying my more general knowledge of basic conditioning and phobia treatments to your situation, your therapist may have better ideas (I would certainly hope she does)

Hi LD, I posted my email add at the main board.. can you please email me reg medical help in singapore xx

I think you should be incredibly proud of what you have done, against serious odds you have kept her alive! Although you feel you have missed out on the "bonding" of breastfeeding, due to your perseverance your daughter has not missed out on the benefits and I'm sure she loves her mummy very much. I know as mothers we seem to have in in-built capacity for self blame but truly her oral aversion is not your fault, she could NOT have gotten it from being "over-fed". The reason I suspected it was due to an immature swallow leading to choking/aspiration in her early days back home is that you wrote below that early on you felt her suck was "not quite right". She was born well before her reflex was fully developed so it is quite likely that she did have trouble (even intermittent) with breathing-sucking co-ordination at the start and there may have been an incident (even just one could do it) which triggered this fear. As muzza said, oral aversions are common anyway in prems or babies who have extended NICU stays as they have all sorts of things going on as far as suctioning etc, so yeah, you should have been warned and listened to but most likely this wasn't "preventable". End of the day though, as much as I'm sure you would like to know what the trigger was, it most likely won't affect your game plan for resolving it. It could have been something as simple as reflux, so feeding was painful and even with meds resolving the reflux the phobia remains, all of this was out of your control and as you say all you can do is try to best play the hand you are dealt. Is she having some sort of continuous therapy now? I do think that you will need specialized help in introducing solids, I wonder if, since the resources are not available where you are, it would be possible to get your insurance to cover a trip to somewhere where there was help, (preferably singapore if the resources are there so that it can be ongoing when you arrive) and you could be trained in what you need to do (with possible skype consults). Surely your pediatrician should have contacts and be capable of finding you the appropriate help, it might be time to try another more pro-active pediatrician if this is not the case. At the risk of being repetitive, you are amazing, keep fighting for your daughter!

Oh goodness Lemondrops, your post brought tears to my eyes. I'm afraid that I don't have any practical advice but just wanted to send you my thoughts and wishes, you are one brave admirable Mum. X

Lemondrops...I do feel for you... My DD (second twin) was in the NICU for 80 days, and now that she is home (been a month now), she will suddenly cry and push the bottle away from her mouth with her hands while being fed. She also arches her back and spits milk out at times. The only time she feeds well is when she is very hungry (perhaps twice a day) and over the past week I have noticed her intake reduce as well. And yes I do understand the guilt and the missing out part as well, as her twin feeds easily so I end up spending more time feeding her and enjoy the time with her as well. But with DD2, its very painful and stressful...thank God I have my mom here to help, so I end up giving DD@ to her or DH. Which then adds to my guilt of being a bad mom... I was getting worried about her these days and your post has answered some questions and given me suggestions...so bless you! I hope that this problem is solved soon and your daughter starts to feed well. If you ever want to take some time off and meet for coffee and a good vent, do let me know...

Oh and meals, no chocolate please!!!!! What?!?!? ;)

Lemondrops you are incredible and I feel for you so much - big hugs. It's tough enough going through the whole NICU experience but to endure this for so long is just awful. From my own prem books from having DD, oral aversion is something they can get from being on a vent for a longer period of time and all the procedures around their mouths - maybe thats why your LO is able to dreamfeed. Apparently those babies have less problems with feeding from spoons and cups later but maybe the teats are more 'intrusive'. I know you're probably sick of 'experts' and not sure who you have seen, but I have read that occupational therapists can look at the sensory and physiological aspect of eating but also speech language therapists can be really good and that is with babies who are quite young in age - I don't know of anyone specific but wondered if you had considered those possibilities. I don't know where you are based but please if you need some help, if it's doing a feed while you spend time with your other daughter or if you can, grab some sleep, then I will come and do it - wash bottles or whatever! I do understand how tough it is with a prem. I am on jennydotmurrayathotmaildotcodotuk

wow you've been expressing on top of all this, admiration for you just went up another level!