Feeding issues in 7 month old, please help

[Parents2017]

We are at our ends trying to figure out what is wrong with our 7.5 month old baby boy (first time parents) and how to fix it. I am posting here in a desperate attempt to see if some peer advice can be of use. The long story is below and summary below that if you want to get to the point.



We have been to our pediatrician, a GI specialist, and feeding therapist with no answers or improvement.



Here is the background:

Baby born without issues - full term. He couldn't latch/I didn't know how to have him latch on in the hospital properly. Was feeding ok prior to d/c home. We re-presented to ER 2 days after d/c home with jaundice and fatigue since I was only trying breastfeeding and couldn't get enough into him. His jaundice recovered with bottle feeding but still was difficult for him to latch on.



For the first several months (0-4 months), feeding was horrendous:

Took 30 min to 1 hour to get 2-3 ounces per feeding into him. Despite that, he was taking the bare minimum and we were having to almost force-feed him to get proper nutrition - since he didn't guzzle milk down, we would wake him from naps even at an older age to get enough milk into him. We had him evaluated by dentist for tight frenulum/tongue-tie and she said has a slight one but not enough to warrant any therapy at this time.



He was straining and found to have microscopic blood in his stool, secondary to a presumed milk-protein allergy so I was put on a strict diet before he turned 1 month since we were only feeding pumped breast milk (no dairy, egg, or soy for me). Between the hour long feeding sessions, requiring immense amount of distraction, frequent feedings since we thought he must get a certain amount of milk, being on a strict diet, having to pump several times throughout the day and night, and him being extremely fussy when trying to sleep (so I had to hold him for 30-45 min after feeding to have him sleep), I was exhausted.



On top of this, at around 2 months, we self-diagnosed him with reflux (husband is a physician) and self-prescribed Zantac. This worked for a couple weeks (his feeding volume increased and pain subsided) but then the effect wore off. At this point, we were referred to GI, who started nexium. This again worked for several weeks (now he is around 3 months). The GI specialist told us to start early solids around 4 months. We did at around 4.5-5 months old.



At around 2-3 months, we saw a feeding therapist who gave some tips that worked initially. Since transportation is difficult and the tips initially worked, we did not follow up after the initial visit.



We sought a second opinion from a different GI doc around 4-5 months of age, who stated that reflux is not the reason he is taking forever to feed - it is a sensory issue most likely. To prove his point, he placed him on double dose nexium. He was correct and the double dose did not help him so we decreased back to the original dose.



At first, he loved solids and was very interested. Around 5 months, he was feeding ok (the lower limit of suggested volume) but still requiring a lot of distraction to do so (and me still on that special diet, with pumping). We started to sleep train him which eventually succeeded. However, after sleep training, he regressed and his intake decreased again so we stopped sleep training him.



At around 6 months, something changed and he started feeding more (dream-feeding as before, but he took in more), but he wasn't sleep trained. We took him on his first plane ride and after we returned, he worsened to the current point.



At present, for the last 1 month, and worse in the last 1-2 weeks, his intake has dropped to about 10-12 ounces a day. We had weaned him off nexium and he did fine but then restarted when we thought that might be the issue, which has not been the case. He reluctantly takes a few spoonfuls of food before becoming fussy and what is unusual is that for the last several weeks, distraction and dream feeding does not work. He takes the milk into his mouth and lets it drool out rather than swallowing it. Most of the time, he hates being in the usual feeding position and is scared to even look at the bottle (pushes it away). The last two weeks, he has hard stools (daily bowel movement but very hard, which we attribute to lack of fluids in the stool). Over the last few days, his regurgitation has worsened and any little gag reflex he has triggers intense vomiting of all gastric contents. He has always had a dry cough several times a day, which we attributed to his reflux.



We saw the pediatrician in the middle of this recent dip, and he remains on his growth curve, but still on the low end and that was prior to him becoming much worse in the last 1-2 weeks. We also saw a feeding therapist closer to home, but she did not provide much information - stating we should try and get as much into him as possible and to distract him (opposite of the original feeding therapist).



SUMMARY:

Born full term, now 7.5 months

Diagnosed with milk-protein allergy and reflux. Tongue-tie ruled at at 1-2 months age.

Started on zantac, and then nexium, with some benefit initially with both that later faded

Sleep trained and got worse, so stopped and got better (since we could again dream feed).

Went on plane ride and worse since then (last month).

Now sleep trained again but feeding is down to 10-12 ounces of force feeding with about 75% of milk dribbling out and not swallowing (or pushing bottle away and not taking it at all), with a ton of distraction.

Initially liked solids, but now gets fussy about 1-2 minutes after starting to feed him.

Hard bowel movements last 2 weeks (daily bowel movement but hard, which we attribute to lack of fluid intake to keep them soft).



Otherwise, developmentally normal - very active, crawls, no teeth yet, babbles (no first word yet), can hold himself up.



On the 15 and 25% of weight chart (depends on which graph you look at) and staying on it up until 2-3 weeks ago.



I don't know what to do - we have been to the pediatrician, GI doc, and feeding therapist and no one can give us any useful tips. If he continues on this path, he won't last long on his weight curve and will eventually need some other intervention.



Please help!





Thank You,



Exhausted and Worried Parents

 

[IchigoMewMew]

I don’t know much about reflux but with the feeding do you only spoon feed? Does he have any teeth yet? My DD only wanted finger food from that age for a couple of months because spoons were uncomfortable while her first teeth came. Also not sure about the person who said the tongue tie was too slight, I thought it was a case of how badly it restricts feeding (I could be wrong maybe that’s just for referral)did you get a second opinion about it?

 

[jessmke]

Have you considered seeing an osteopath? My best friend's little girl has had all sort of undiagnosed GI issues since birth and the only thing that helped her was an osteopath.

 

[Parents2017]

Thanks for the responses.

He does not have any teeth yet. We have tried to feed through spoon and our finger without luck. We are scared of finger foods since he chokes/gags even with slightly thicker foods.

We will consider seeing osteopath.

Thanks!

 

[BunnyN]

DS1 had some similar issues. He had a lot of mucus and spots of blood in his poo. His weight gain was poor. I cut out milk, soy etc from my diet which helped but didn't resolve everything. Eventually I went on a very restricted diet myself which seemed to help more. I was never sure what it was I was cutting out that helped. Our other two children had digestive/intolerance problems similar to these but he also had problems with the physical part of feeding.

He latched on okay but didn't seem able to latch and swollow at the same time so constantly broke the latch. We were both getting so frustrated with feeding at 4 months old we took him to a breastfeeding specialist. She said he had lip tie and maybe slight tongue tie. She clipped the lip and the tongue too because I asked her to try it. She said he also seemed to have a lazy lip and mouth muscles that were making it hard for him to coordinate his feeding so she wasn't sure how much improvement we would see. Right away I wood say there was about a 20% improvement and it improved a little more once the swelling was down.

He took to solids very well and cut back on breastfeeding very quickly. He did have an over active gag reflex. Interestingly mushy food and pure was the hardest for him to swollow. He did much better with actual solid food.

Dont know how much any of that relates to your experience or if anything is of help but thought I'd share our story.

 

[jessmke]

Are you currently bottle feeding him? What about trying a cup of some sort. Both of my kids have been able to drink out of a Munchkin Miracle Cup since about 5-6 months old (with help to tip the cup up). I would also try finger foods with him. Gagging is common and not dangerous, it's actually a protective mechanism to prevent choking, so although it is stressful to watch it isn't going to do him any harm.

 

[Disneyfan88]

I’m sorry to hear that you’ve had such a rough time. How much does your little one currently weigh? Have you tried changing bottle brands or nipple flow to see if that makes a difference? How about changing the temperature of the bottle? My little one is on the low end of the growth curve, but her doctor isn’t concerned because she’s continuing to follow the growth curve. She’s currently in a phase where she needs to hold something that she finds interesting in order to drink her milk bottles (I exclusively pump). I know that you’ve said that you’ve tried distractions, but maybe changing the type of distraction (using props, playing music, etc...) can help. Hang in there!

 

[noon_child]

If he struggled with breastfeeding, bottle feeding and food I would revisit the tongue tie issue (what the tie looks like doesn’t always reflect how much it restricts tongue movement). This would explain a lot of the GI symptoms as he will be taking air in with his food and the cough could be due to him aspirating some of his milk when he swallows. If you really don’t think it’s that, there does seem to be some kind of other swallowing issue.

Unfortunately gagging is really common when all babies start to learn to eat finger food/family food. It’s part of how they learn what to do/what not to do but I can understand why you would be scared of trying as you suspect an issue with how he feeds in general.

Regarding sleep, yes it will be harder for him to sleep if he has reflux, gas or intolerance but I’d also not expect any baby to really respond (consistently for long periods) to sleep training, and especially if he is in discomfort trying to sleep train may just add stress where you don’t need it. I can imagine how desperate you were/are for sleep but sometimes we make things worse by trying to control the uncontrollable as the stress and guilt that occur when we fail is crushing.

 

[_Meep_]

Get evaluated for a particular type of tongue tie called a posterior tongue tie. You need to find someone who knows about these as most professionals are absolutely clueless. We had a rotten time with our first (lots of nursing strikes, coughing/choking and dreamfeeding) until we worked out this was the issue and found someone who would confirm and treat it. She is a developmentally awesome 4 year old now who eats, drinks, talks and STILL breastfeeds.

 

[Weebles]

As the above poster stated, it could be another kid of tongue tie or even lip tie. I'm sorry it's been such a tough road so far. At that age my DD would throw up if she had a food she didn't like. Gagging first and then throwing up. We just didn't offer the offending food again for awhile. She also got really constipated when she first started on solids. What we did that really helped was offer her puréed prunes once or twice a week. She really liked them so getting her to eat them wasn't a problem.

 

[noon_child]

How are things now? Someone I know in my breastfeeding support group had some of the same issues as you due to a "floppy larynx" (can't recall medical term). Also had tongue tie so that added to the issues.

 

[_Meep_]

Laryngomalacia I believe!