failure to thrive ds being admitted tomorrow. Any ideas before we see pead and dietician?

[noodlesoup]

Ds is 21wks and 10lb 11oz.

His birthweight was 6lb 11oz.

He was 'following the line' until 10wks but has only gained 13oz in the last 11 weeks.

He has 5 (sometimes 6) breastfeeds a day. I tried giving him more on the advice of the bfc but he was much more unsettled and didn't gain weight.

I have tried switch feeding but he won't go back on the first 'side' again.

I do breast compression.

I am feeding him to routine mostly has he does not demand to be fed.

I wake him for his last feed, if I didn't he will sleep 12 hours.

He hardly ever crys or becomes unsettled.

I think my supply is ok.

He doesn't have a thyroid problem, celiac disease, allergy or chromosomal abnormalities. He has had a lot of tests which have shown nothing but he was severly aneamic at birth and is recovering from that. He has slight developmental delay (but not much and he is bright/alert).

He hardly ever poos.

It does look like I am starving him but I really feel like I'm not. I can't make him feed more often or for longer, he just pulls off.

I really don't want to give him formula and I am sure that I will have to have a conversation about it tomorrow.

I am flummoxed so please, please give me some ideas. He is tiny.

[Grendle]

That must be very worrying noodlesoup. I do hope they're able to give you some more info soon. If they work out what it is then it might be worth asking or searching to see if there are any patient groups of people with similar things where you could find people who may have been through something similar. Keep us posted too.

[noodlesoup]

It looks like he has some sort of metabolic disorder. I still don't really know anything though. I'm even more worried about him now. It just goes on and on. I'm still hoping that it is going to sort itself out when he is weaned. It is very helpful to hear from others in the same situation so thankyou.

[1stTimeMummy]

Hi Noodlesoup

Hope things are going well for you.

I thought I'd post just to let you know you are not alone. I posted something similar 2 years ago and Verylittlecarrot (Hi!) very kindly posted to me at that time.

DC was 6lb 13oz at birth and 11lbs 5.5oz at 21 weeks. I was in a state constantly for the first 4/5 mths over her agonisingly slow gain. I never actually had her tested but did supplement with EBM in the early weeks to get her on the right track.

Very similar to your DC, she had around the same no of feeds at that time and could not be convinced to feed more/for longer. If I tried to force her (keep her close to the breast for 1/2 hour after she was finished) she would eventually spit up. She actually developed relux (happy massive spitter around 5 mths and was on Gaviscon from 7mth to a year). She took to solids at six months really well and always ate much larger amounts than her peers (in fact I had to learn to stop her or she would keep going and then throw up). I stopped breastfeeding at 14mths as she was still clinging to the bottom line of the charts and I couldn't take the pressure any more. Somewhere between 12mths and 18mths she started gaining and at 2 she was almost on the 50th percentile. At 2.5, she is very slim (but not scarily so) and food is a major issue in that she eats around 3 times what her pals eat. She would eat all day ALOT. I stop her continuously. We went to a mexican last weekend and she ate the same no. of fajhitas as I did. I'm 8st and she is 26lbs! So I think that she has a fast metabolism, both my sister and I do also. I think that some babies are content on less milk, she was such an easy baby and slept so well (still sleeps very well and more than her friends - probably trying to digest all the food she eats) but I would comment that as a 1st time mum I didn't realise that a baby could be too sleepy/disinclined to demand milk and I am convinced that I didn't feed her enough (she didn't demand) in the early weeks and that hence my supply was capped and nothing I could every do would increase it. She also sucked her thumb constantly and hence never nursed for comfort which didn't help.

I'm currently feeding my 7mth old DS and at 4mths he outweighed his big sister at a year! I miss my small baby.

I wish you all the very best and just wanted to let you know that even though my little one probably had the bare minimum of milk, she is absolutely fine and caught up in her own time. She has never been to the doctor (other than for jabs), never had an antib, earinfection etc She was slightly late in terms of sitting (8mths) , crawling (10mths), walking (15mths) but hasn't drawn breath since she started talking (early enough) and at 2.5yrs could negotiate for NATO!

Molly

[verylittlecarrot]

I remember someone posting something similar about weaning making a big difference, when I was going through this and I really hung my hopes upon things turning out the same way - which they did.

I remember also pleading with my dd to take MORE MILK PLEASE!, to no avail. I still don't really understand why she gained so slowly, but I know she wasn't the only one like that.

She is the healthiest, brightest child I know (biased, obv), and eats everything with gusto. But she still looks very dainty in build next to her peers. I think she may have a very fast metabolism, perhaps.

How are things now, noodlesoup?

[verylittlecarrot]

At 21 weeks my dd weighed only 9lb 1oz. She had been gaining 2-3 oz a week since birth but began to plateau at about 20 weeks, and plunged below the charts.

Like you, I felt she took exactly what she wanted from me, and no amount of persuasion made a difference. (although she fed much more frequently around the clock than your ds)

There never was any medical cause found, and she was very healthy, although skinny. I chose to focus on what high calorie solids I could introduce at 26 weeks rather than formula, as I felt, rightly or wrongly, that I preferred to give her natural whole foods rather than processed formula. I flung cream and butter into all her foods at first and her weight skyrocketed as soon as we did this.

I believe that some babies just seem to content themselves with far less than others, but biologically they are normal, just tiny.

I completely understand the worry of a slow gaining baby and really hope things look up for you soon.

[CookieMonster2]

This sounds like the same problem I had with both of mine. There was plenty of breastmilk going in, but the weight wasn't going on.

I just topped up with formula (with the first DC a prescription milk) and this made a huge difference. I think the key to this working is making sure you get help with mixed feeding. I didn't have much option to give in and do this first time just because she was so dangerously small. Second time round I was happy not to fight it even though he was a much healthier weight - just because I had experienced how well mixed feeding had worked first time.

Given that you are close to weaning I would ask to be refered to a specialist health visitor to help with weaning. We got a lot of help with this the first time and I was really grateful for all the help and information we got.

BTW - 10lb 11oz at 21 weeks isn't tiny to me - my first was a lot smaller than that!

[noodlesoup]

pead thinks the quantity of milk is unlikely to be the primary problem although he might not be getting much, he doesn't want any more than he is getting. He might be getting enough milk but not using it properly. She has seen that I am feeding him and he is very content. There is talk of a high calorie formula but we will see what the bloods are like first.

[AcademicMum]

I hope you get to the bottom of it and are back on track soon.

[Grendle]

Sorry to hear there weren't immediate answers for you. What did the paeds and dieticians say about the bf?

[noodlesoup]

I'm back.

Its still a mystery. Fed round the clock and topped up with ebm and he managed to lose weight while we were there. Blood results back on mon so that might shed some light on it.

[AcademicMum]

Belgo, you are right skin prick test is not reliable at that age (can vary very much before about 18 months-2 years). However, the "diagnosis" for an allergy is evidence of a clinical reaction plus a skin prick or rast test. The skin prick on its own is not absolute proof. A clinical reaction on its own may be enough, depending on how obvious it was.

However, the point in my second post was that dairy is not the only food that can cause similar symptoms, others can as well, so don't automatically assume dairy as it may be something else causing a similar type reaction and there is no point compromising your own health by cutting out dairy without good evidence that dairy causes the problem.

[belgo]

noodlesoup - I hope all is going well today.

[belgo]

Acedemicmum - my ds was diagnosed with a cow's milk allergy aged 12 weeks, even though the skin prick tests were negetive. They then went on to tell me that skin prick tests are not accurate in babies this young, and that he probably still did have a cow's milk protein allergy.

He is now nearly 10 months and he can tolerate milk in my diet (he is bf), but if he eats anything with diary in including babies' biscuits, then he does come up in a vibrant rash.

[tutu100]

Sorry I didn't mean lactose intolerant. I meant dairy intolerant . I was very tired last night.

[AcademicMum]

Oh, I should also add that whilst CMPA can lead to failure to thrive, I notice the OP's baby has a clear RAST for cows milk. Other foods which can cause similar symptoms (even in breastfed babies) are egg, soya, wheat, gluten and fish which it may be worth asking the paed for a skin prick test, at least to rule out allergies to these.

Also, if you are going to go down the offering solids route, avocado's are great as a first food if you want something to put a bit of weight on. Much better (and tastier) option than baby rice.

[AcademicMum]

I would second others who have mentioned the need for clarity between cows milk protein allergy (CMPA, which affects around 2-7% of all babies and is diagnosed by skin prick test or RAST) and lactose intolerance (diagnosed from a stool sample). The two are very different with a lactose intolerance coming from either a lack of the enzyme lactase or inactivity of the enzyme lactase which breaks down lactose. CMPA on the other hand is an immune reaction and nothing to do with lactose. Lactose intolerance is generally unpleasant, but not life-threatening, CMPA can lead to life-threatening reactions.

CMPA can however lead to anaemia due to bleeding in the gut (a common symptom of this is blood in the stool, which is characteristic of babies with CMPA). Cows milk protein can also be transferred to baby via breastmilk, and symptoms of the allergy (which can include failure to thrive) can be reduced/eliminated by the mother maintaining a dairy free (not lactose free diet). It should be noted that this is not a small undertaking and not advised without confirmation that CMPA is the problem.

It is shocking the amount of HCP's who get CMPA and lactose intolerance confused. I had a junoir doctor do this with me - thankfully I teach biochemistry to pharmacists for a living, so have enough knowledge to be able to correct her .

[tiktok]

ilove - the paed needs to revisit his GCSE biology books

[ilovemydogandmrobama]

Paediatrician says: lactose intolerant.
Dietician says: cow milk protein intolerant

Confused? Moi?

[ilovemydogandmrobama]

Yes, I am saying that many b/fing mothers are being told to change their diets because of a medically diagnosed lactose intolerance and/or cow milk protein intolerance.

Myself included. Of course I would change my diet if it was adversely affecting my child. Didn't work and DS is on molecules split by NASA type prescription formula. And he's on a dairy free diet.

[anonandlikeit]

HI noodlesoup, I think i spoke to you on your other thread in sn the other day.

Firstly I would be very surprised if the paeds ask you to stop providinf breast milk for your ds.
What they may ask you to do is to express while they establish, what if anything is the cause. They will store your EBM for you & once they are sure his tummy is able to absorb it OK they will re introduce.
They may want him bottle or even tube fed at first so that they can accurately judge his intake.
I guess they will also test his urine & poo.

There are high calorie formulas that are used for prem babies, eg Nutriprem, these are on prescription.

Thye may just decide that your ds has been through an awful lot & he is just taking a while to recover, as he recovers medically he may improve with his weight gain. fingers crossed, I hope all goes well for you x

[tiktok]

Should clarify - bf babies who are LI with this temp, condition don't usually need to have a lactose-free formula - mostly they are fine with breastfeeding.

[tiktok]

Not an urban myth so much as a biological impossibilty! It's shocking if hospitals are recommending it.

Lactose is the milk sugar in all milks. Each and every one of them. Cows eat grass, and their milk has lactose....!

Babies who really cannot cope with lactose need a lactose free formula like soya which is not a milk ('cos 'milk' comes from animals only). Congenital LI is vanishingly rare, but more common is secondary (and temporary) LI after a bout of gastro-enteritis.

Some ethnic groups become LI after childhood.

Some babies are cows milk protein intolerant and a very few of these seem to improve if their mothers avoid cows milk protein, which can get through to the breastmilk.

I will seek out and post some references tomorrow. Are you really saying that many bf mothers are being told to change their diets because of LI?

That's shocking.