Recently Jan Gambino and I conducted a survey on sleep-feeding infants. Sixty one parents of sleep feeding infants took the survey and at least 60% of the parents answered all questions. Remaining 40% parents could not answer all questions because in many babies, sleep feeding had not been resolved by the time they took the survey.
Our survey results have been listed below:
A. Among all sleep feeding infants (children of parents who took the survey) here is a general birth history:
1. All i.e. 100% children sleep fed as infant between 2005 to 2011 (February)
2. More than 50% of these children were born in 2010 (this explains why some parents could not answer all survey questions)
3. Of all the sleep-feeding infants 51% were female children and 49% were male children.
4.Ethnic background: predominantly White and Asian children (more details confidential)
5. Seventy two percent are first born children
6. Mother's age in 27.5% mothers was more than 35 years at the time of their child's birth. Almost 16% of the mothers had gestational diabetes.
7. 56% babies were born with a C-section.
8. 51% of the babies had to stay in NICU either for a short or long period; 37% had jaundice, and 37% had low birth weight (there could be overlaps)
9. 32% of all sleep feeding infants are IUGR babies.
10. Poor oxygen or low blood sugar after birth was observed in few babies (more details not available)
B. These were some of the most common symptoms observed in sleep feeding infants between the ages of 0 to 3 months.
1. Poor weight gain or some weight loss.
2. Back arching
3. In 40% to 50% infants: Constant and frequent hiccups, GER (common reflux), Gas, and GERD was noted.
4. In 20 to 39% children: Eczema, choking, congestion, cough, colic, constant crying, gas, small but frequent spitting up, vomiting, projectile vomiting and poor oral motor skills were reported.
5. In contrast, fewer children (less than 20%) had: Allergies, MSPI, Lactose intolerance, Bloody stools, wheezing, apnea, illnesses, infections or other life threatening events.
C. These were some of the most common symptoms observed in sleep feeding infants between the ages of 3 to 6 months.
Most symptoms mentioned above resolved or became insignificant except in 50% of babies following symptoms continued or increased:
1. Vomiting
2. Projectile vomiting
3. Back arching
4. Poor weight gain
D. Diagnosis was made for 44 out of 61 babies (as reported by parents). The most common diagnosis for the first year after birth in these babies was:
1. GERD: 72%
2. GER: 60%
3. Feeding disorder: 57%
4. FTT (failure to thrive): 30%
5. Allergies: 25%
6. Developmental delays: 21%
E. When asked about the feeding history of the child 95% of the parents responded that the child had to be asleep or drowsy for bottle feeding (rarely for breast feeding too). Some parents skipped this question but we still have a good number to predict other common symptoms in sleep-feeding infants.
When presented with the bottle, and while fully awake the babies respond in following ways:
My daughter was born 9 weeks premature. She is now four months actual and two months adjusted. When we returned home from the NICU, she refused to breastfeed so I bottle feed her EBM. She never woke up to feed, so I kept her on a regimented three hourly schedule as what she had been on in hospital. She exhibits all the classic symptoms of GERD, so when I presented them to her pediatrician, he prescribed Zantac and Motilium and then later Losec and Motilium. She refuses the bottle when awake, will only take up to 25 mL at a time, then will start to gag and throw the bottle out with her tongue. If I persist she cries inconsolably as in pain. The rest of her 125 mL bottle is finished once I get her drowsy or asleep. She is still on a three hourly schedule during the day; if I try to go by her cues she'll just cry inconsolably but will never accept the bottle awake. She just cries herself to sleep and then I pop in the bottle and she finishes it in ten minutes flat. So far her weight gain has been very good because I've perseveared with her feeding, even hiring a maternity nurse to feed her through the night. So her Pediatrician thinks there is no problem and I am now onto the next specialist; however I doubt very much he will provide any further insight on her case. We live in Dubai, and access to health professionals who deal with bottle aversion and feeding issues are scarce. I have yet to find one. I feel so disheartened and frustrated by this whole experience. I have another daughter who is two and a half years old that I spend no time with because I dedicate all my time to her younger sister. I am at a loss and feel so helpless at the moment!
Dear Lama,
I am so sorry for these struggles. Nearly all parents who completed our servey had almost similar experiences (including myself). Motillium is a drug of choice everywhere outside US and due to it things get better much faster if they are the result of a sluggish motility (reflux most of the times). Losec is called Prilosec here in US which belongs to PPI class of drugs (omeprazole) if you move to the next specialist find out if changing from Losec to lansoprazole /lanzol/prevacid will help. Some kids do better with one or the other.
Secondly, a bunch of kids will also have allergies that are causing these issues. Now a days the skin tests have become very reliable and there are other forms of diagnosis too. Please do not be afraid of diagnostic testing if it is recommeded. Unless they see the proof, specialists keep denying that anything is wrong.
My son sleep fed for 17 months and the answer to our prayers was domperidone (motillium) at least partially...so if reflux with vomiting/spit up is causing you little one lot of trouble, motillium will help at some point. A pediatrician outside US gave us the prescription for motillium and it took us about 3 months to get him better but after that all his spitting-up stopped completely.
Hope this helps you. Take care.
Sonja
Hello Lama,
There are many reasons a baby will turn away from a feeding. Certainly we are familiar with turning away due to pain such as reflux or a food allergy/intolerance. Does she continue to have symptoms of reflux? has she been evaluated for milk soy protein intolerance? Have eczema or rashes? mucous or blood in her stool?
Any reason to be concerned about a swallowing problem? Constipation?
Let me know a bit more.
Take care, Jan
Thank you so much for your replies.
Jan, my daughter was diagnosed with GERD almost entirely based on the symptoms I had described to her pediatrician, mainly fussiness and crying during and after feeds, arching her back, coughing, wheezing, vomitting and constant hiccups. She does not have a rash or eczema, and it does not appear that her stools contain any mucus or blood although no tests were run to exclude this possibility. So far all the pediatricians, lactation consultants and healthcare professionals I have seen for my daughter think there is nothing wrong and have not been willing to consider anything like intolerances or conduct additional tests because she is in the 75th growth percentile adjusted for her age. In addition, they believe intolerances are unlikely as she is exclusively fed expressed breast milk. It is also difficult to have my concerns taken seriously by pediatricians when all they see is a healthy baby infront of them.
The pediatric gastroenterelogist I am now seeing for my daughter firmly believes that I am force feeding her and that if I stop she will start feeding regularly. So on his request, I have stopped sleep feeding her and am only feeding her whilst she is awake. Her feeding quantities and frequencies have gone down drastically, from 800 to 900 mL a day to a paltry 200 to 300 mL; only enough to keep her hydrated. However, she is happy, smiling and alert. She does not care for the bottle or to be fed. I am to keep this up for another five days, during which if she exhibits weight loss, he will request for further tests to be conducted. I am finding this time quite painful, as I almost feel I am starving my baby, but have no other means to be taken seriously!
I am at a loss as to what is causing this behaviour in her. She no longer seems to be in any pain but flatly refuses to feed. At one point, I thought it was due to an unorganised, weak suck reflex; however when asleep she exhibits quite a good suck reflex. I have decided that if her volumes do not go up in the next five days and she does lose weight, I will go back to sleep feeding her even though the pediatrician recommends against this. Hopefully though the results will make him take note and request further tests.
Dear Lama,
I think you are taking all the correct steps. I wish you the best. Follow your instincts because you know your child well...and do not give up. Speak with the doctors and ask them for help with references to Occupational or Feeding therapists such as Speech Language therapists.
I exhibited to my child's feeding therapist how smoothly he can suck and drink when asleep, she ruled out any weak suck or swallow related problem. I went to an OT and she ruled out the suck related problem too, finally my GI asked me to demonstrate it and said there is no physical/physiological problem but that there is some discomfort when feeding while awake. He never accepted that it was reflux but gave us a prescription for an increased dose of 30 mg soluble prevacid (lanzoprazole) anyway and asked me to take notes on his feeding quantities.
In less than 6 days my sons feeding increased from an average of 12-14 ounces (1 US fluid Ounces= 30 ml approx) to 18 to 22 ounces after we increased his prevacid from 15 mg to 22.5 mg. Initially we had done a trial and error and started with the lowest possible dose of 7.5 mg prevacid (given by pediatrician), after a month nothing happened but when it was increased to 15 mg (by a GI) things got better and much better with 22.5 mg (after getting a 30 mg prescription).
The solutab of prevacid comes in 15 mg size and is easy to break in 1/2. We did not notice any difference by giving him 30 mg or 45 mg. However, the biggest difference in his retching/gagging/vomiting came after he got domperidone when we were traveling and he fell ill. 2 months of domperidone and my son completely stopped vomiting or spitting up. That does not take away the importance of selecting the right dose of a prevacid but after the domperidone treatment of 2 mo we stopped his prevacid because he started drinking with a straw from a bottle.
However, to this date I regret the fact that I did not push for a pH probe right away and the GI kept saying that my son has no reflux. Eventually when we did the probe there was mild reflux but by then even we could see that my son was getting better already.
In some ways you are slightly lucky that your child is at 75th percentile, although I can understand how frustrating it is when they see a healthy child and start judging the parents...this is my biggest problem with GI doctors and I feel that the cover their own shortcomings by blaming the parents. But look at it this way because of your efforts and her being in 75th percentile you can do the 5 day test and if her feeding is down--she will get the attention that she needs.
I also feel that the motillium could be helping to make her sleep feeding go more smoothly...
My son was at a 5th percentile and I was too terrified of doing this 5 day test---but eventually he fell ill and lost 20% of his body weight, needed IV and was labeled as failure to thrive. At this point I was outside US and he finally got all the attention in world with GI's and doctors immediately accepting that he has reflux and running 100's of tests...including pH probe.
Thank you for your reply Sonja. Well I have been to see the doctor today. He believes that Jumana's bottle aversion is down to either behavioural or sensory integration factors. He would like us to continue to stress feed her, i.e. feed her only when she is very hungry. If she refuses to feed and is at risk of dehydration, he would then recommend that she is admitted into hospital for 48 hours for observation. She will most likely be subjected to a barrage of invasive tests and further stress feeding. I am totally torn on what to do. I am worried that she may lose a lot of weight with no tangible improvement in feeding, which would be harder for us to put back on her as she becomes more awake during the day. On the other hand, I am wary of the fact that sleep feeding her is not a long term solution and by not addressing her oral aversions early on, she may never rid of them. I have re-introduced sleep feeding for now as she had lost 170 grams this week due to the stress feeding, however I will need to decide soon whether to trust this doctor and proceed with the stress feeding or to continue as I am and hope that she will grow out of it herself. This is such a difficult decision. I don't know what to do!
Hello! I would continue with the doctors plan. It is important to find out what is causing this problem. Maybe the doctor will not need to do a lot of testing. While she is losing a bit of weight now, it might start to go back up. A child in a feeding clinic often loses weight during the first few days or weeks before starting to gain the weight back up and learning new ways of eating more efficiently.
Jan
Hi Lama,
Oh boy, it is very hard to decide in this way, isn't it? I have been there and I chose to continue to sleep feed because I was not given this hospitalization option. I have a slightly different take on it based on what I know from the sleep feeding moms.
First advice: Do not be afraid of testing because if they confirm reflux it will only help you and the little one. This is a common mistake that many moms make.
Second advice: You don't have to stop sleep feeding in order to do the testing first...request them to start the testing anyway.
Have you ever done a flow chart? If you can make it or a decision chart on what if--Find out what other options are available in Dubai or nearby areas and then proceed.
For example:
1. If you continue to stress feed: either she will learn awake feeding or get stressed (dehydrated).
2. If she leans to feed awake--you are fine, if she does get dehydrated she will be in Hospital + IV + tests.
3. If they find something in the test that can be treated she will get treatment and will be fine. If they don't find anything wrong: a. she will be dehydrated, will be hard to put her back to sleep feeding mode and you have no treatment...
Before you step in this:
A. You have to find out if they will then refer you to a feeding therapist when treatment does not work? Are there good feeding institutes/therapists in Dubai or basically when treatments fail you go home with an NG/G-tube? Ask the doctor very specifically-your child is not an experimental guinea-pig and unless there is a clear POA do not subject your child to some experimental GI workshop.
B. Trust your own gut instinct.
We have a survey from 45 moms of sleepfeeders here and not one mother has said that doctors found out some conclusive reason for sleep feeding--treated it and the sleep feeding was gone...
It needs medications and/or therapy. Yes, you can be your child's therapist and moms have done it before. If as the doctor says it is behavioral/sensory how are they going to cure it anyway?
Ask the doctors for specifics and make an educated decision. Medical systems in US are far different than outside world and I have been in both places. I don't think that someone in US can understand the way your system works but if you make a logical decision, it will not fail. Again, please do not be afraid of testing but dehydration should not be a prerequisite for testing either.
Take care dear.
Sonja