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!
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.
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?
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
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.
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.
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).
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