Failure to thrive baby - help!

[Dobsd]

This isn't my baby, but a friend's.
He's now 22 weeks old and consistently loses weight. She started off breastfeeding but struggled with supply issues. She was diagnosed with IGT (insufficient glandular tissue) and baby was put on formula. Since then he just hasn't been able to keep a bottle down or put on weight. Obviously he has gained small amounts here and there but at most weigh-ins, he has lost weight. This week he lost 140g 😟
It's a very long story but I will bullet point what she has tried so far:
- Normal formulas
- Prescribed formulas
- Goats milk formulas
- Breast milk (donated)
- Donated dairy free breast milk (he was keeping this down for a couple of weeks but now back to throwing up and losing weight)
- 3 different reflux medications

The doctors and paeds just haven't listened to her and passed her from pillar to post saying it's normal!
She eventually paid $350 for private allergy testing. She's still waiting for the results but in the meantime, that doctor sent him for an ultrasound and x-ray to see if he had Pyloric Stenosis - these tests came back clear.
She's at her wits end. He's constantly vomiting up his feeds, still losing weight and the health professionals just aren't helping her!
Does anybody have any experience of this and could offer advice?? Any help would be greatly received!

 

[mara16jade]

How did he eat when she nursed him? Did he keep it down ok? If so, I'd try breastmilk again and see if maybe it was the donor milk he didn't do well with (maybe something in her diet).

Has she tried soy formula?

I'd get a second opinion on bloodwork, x-rays and any other tests that have been run on the baby to rule out other major issues (probably very unlikely).

How stressful. I'm so sorry for your friend.

Another thought, bottles. Has she tried different bottles and also double checked any cleaning detergents being used to clean the bottles. Sorry I'm all over the place - I'm trying to think how I'd try to attack this problem if I was in her shoes.

 

[KatO79]

Wow so sad for your friend, that must be awful to see and her poor baby

I don't have any advice really but if it were me in that situation, I'd get more insistent that the doctors take the problem more seriously. Maybe if she becomes a real pain and really insists that they test and do something, it'll help? Unfortunately sometimes that's what it takes to be heard, especially when doctors often have so many other patients. Maybe also look into a specialist and generally try and find another doctor that listens to her concerns?

I don't know if this helps but I found this article on why babies vomit: https://www.newbornhub.com/baby-vomiting.html

Also maybe try going back to the dairy free breast milk and try another donor like the PP suggested. How long has she been trying each option before moving on to something else? If she's doing it too quickly, she may not be giving him enough time for his digestive system to adjust, maybe??? Also maybe try, if she isn't already, with using a slow flow bottle nipple (I'd probably start with one made for newborns) in case he may be gulping it down too fast. Just some random ideas after reading that article.

I hope she finds out what the problem is very soon and her son will soon put on weight and get better

 

[jessmke]

Has she asked for a referral to a pediatric gastroenterologist?

 

[gingmg]

Agree with above, has she been to a gastroenterologist? If so maybe a second opinion? Sounds like this baby needs more of a work up to rule out what's wrong.

 

[Left wonderin]

I'd thrid the request for a refferal to a gastro specialist ? Has she considered it maybe this
Jump to Is it normal for my baby to vomit? - Persistent or forceful vomiting in a newborn within half an hour of eating: This may be due to pyloric stenosis, which is a rare condition. ... Pyloric stenosis causes the valve leading from the stomach into the intestines to thicken so much that it won't open up enough to let food through . This causes your baby to vomit.

 

[Left wonderin]

Oops sorry just read your post again obviously this was already ruled out . Has anyone looked at a possible thyroid issue or a metabolic condition ?

 

[tommyg]

Other than not gaining lots of weight how is the baby himself.
Is he alert, does he sleep, is he unsettled lots of crying, does she get lots of dirty / wet nappies, is he growing in length?

She has tried an awful lot and of different milks in a short period of time. A minium of 5 milks and 3 meds in 22 weeks.

Given the lactose free breastmilk seemed to work. I think I would try lactose free formula, feeding him little and often.
I keep hearing FF babies will go 3 hours between feeds, but BF babies rarely go that long so I would try 3 or 4 oz every couple of hours, esp during the day time.

I think I would steer away from donated milk, unless she is able to get it from a regulated source. Milk banks in the UK will only supply to hospitals and accept milk from mums with babies under 6 months as BM changes as babies get bigger.

 

[noon_child]

When you say he keeps loosing weight, is he now always on a lower centile each weigh in or does he put on weight for a few weeks then have a week when he has lost weight and this has happened on and off for a few months. If the latter, the yes this is normal - weigh ins look for average weight gain over time (usually looking over a period of a month). If the former then I'm surprised they think it is normal, unless it's because they have ruled out everything they think is "serious" and are ignoring the distress of the mum.

While waiting for the allergy tests, I'd go back to basics and treat his tummy as if he is a newborn with reflux. So aim to feed him every 2hrs but on smaller bottles of maybe 2-3oz. Try paced feeding too (give him a break and a burp every ounce - if he'll let her) and if he doesn't want to go back on to the bottle after the break, don't make him. She may have unconsciously thinking bigger bottles would help get weight on but this may have made him throw up, as some reflux babies only want to get rid of a little but end up getting rid of it all. Keep him upright for 30mins after a feed (this may mean him sleeping on her and possibly her getting covered in sick - I'm sorry, I know it must be so tough for her).

 

[Itsychik]

Nothing to add in addition to the other posters but sending to your friend! How awful for them!

 

[xdxxtx]

My second-born had FTT as well. It was so awful. He was so skinny, and I hate looking at pictures of him because he looked so ill, just skin and bones. We had to change a LOT to get him healthy. My baby was also clear of Pyloric Stenosis, and he had a cow's milk protein intolerance. At 2 years old, he was also diagnosed with celiac disease, and he is now in the 21st percentile of weight for height (35th for age). When first diagnosed with FTT, he was under the 2nd percentile weight for height (1st percentile weight for age). This is a list of changes I made to get my baby up to a healthy weight.

1. Feed every 2 hours, even through the night. 2.5oz per day per pound of body weight. My baby would throw up bigger bottles no matter what. My baby was 7 pounds at this rate (born 7lb14oz). We offered 12, 1.5 oz bottles at first. Yes, this meant very little sleep for a while. My OH and I switched up on night feedings so we could each sleep as much as possible in a stretch!
2. Similac Brand Alimentum (we live in the US). He still threw this up if given a larger bottle, so the small bottles were an absolute MUST. (I BF for the first few months but now make my own goat milk formula for my fourth-born... and chunkiest baby by far! Let me know if you/she want(s) the specific recipe I use. I'll never go back to commercial formulas, but it is a bit of effort to make - and controversial since not everyone is as much of a hippie/naturalist as I!)
3. When my baby kept throwing up the small bottles pretty frequently, we added 2 tsp of white rice cereal at the very end of each bottle. So, we'd feed baby, and then feed a couple of bites of cereal. He was under 6 months and still had tongue thrust, but we HAD to get his weight up.
4. Feed baby sitting up. Keep baby upright for at least half an hour after each feeding. We had a Rock 'n' Play sleeper that he would stay in for half an hour if it was during the night, so we could get as much sleep as possible. I'd only recommend this if baby is also going to sleep and won't try to climb out of the thing, but there are straps to buckle baby in and make sure he's safe.
5. Probiotics in baby's evening bottle (which he was least likely to throw up). I thought this was important because a low-weight baby isn't going to have the best immune system, and probiotics will help a lot. I use Garden of Life Raw Probiotics for Kids, which is safe for babies.
6. Early weaning. My baby started putting on weight with all of this effort, but we had to get him on solids sooner to help hold the liquids down as much as possible. We started with cereals (mixed with formula) and eventually mixed 1st fruits in with cereals to keep them heavy and add sugar and calories.

It felt like all we were doing was feeding the baby or talking about feeding the baby or holding the baby after a feed, all the time, for months. But he'll be 4 in June, and he is amazing, bright, funny, wonderful, and thank goodness he is so very healthy! I hope your friend's baby follows the same path and gets healthy, too. This is a huge struggle. Sometimes, babies just don't seem to wanna keep anything down. Keep a change for at least 2 weeks before deciding it's not working, and I really hope you update on the state of this baby!

 

[luz]

I know a lady whose baby had severe severe reflux and couldn't ever keep anything down. The doctors gave him a ng tube (feeding tube) until about 7 months when he could start eating solids and then he was able to keep more down.