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Please please help- 16 month old falling off curve and dairy intolerant

(7 Posts)
Giraffe999 Tue 15-Dec-15 21:07:51

Please help. I am tearing my hair out. I have 3 sons, 4.5, 3 and 16 months. Older two growing and developing well, eat normal diet, walked at 13 months. Eldest a bit atopic- eczema and occasional wheeze. All breastfed, youngest stopped a month ago of own accord. He has had faltering weight gain since birth, lost a lot of weight when I started weaning and has cows milk protein intolerance. Manages baked milk. Can't have eggs unless baked, and intolerant of soy. Reacts by skin getting inflamed and itchy, sometimes hives. Was 50th centile, then down to 25th. Now just above 9th. Fiercely independent with eating and won't let us help. Very communicative but only one or two actual words. Bum shuffler and beginning to pull himself up.

Saw dietician at children's hospital twice- discharged in October. Saw paeds in July. They said weight was a concern but otherwise had no specific concerns and did not do any tests. We are due for review in February.

I try to stay positive but am beside myself. He is so tiny and has no reserves. Anything calorific just doesn't work for one reason or another- except peanut butter. He loves chocolate mousse and doesn't appear to react to it, but I kind of feel I should just lay off. I am really struggling for simple, calorific recipes for all the family with ingredients I can get in the north of Scotland. Does anyone have any tips or experience they can share? Any cook books that might help? Should I offer snacks plus meals? I never really had to think about this with the other two. He only has his 4 front teeth too, which can't help, but eats a good variety of food- just not much and not esp high energy. I feel constantly guilty about having to work- feel I should be at home making calorific recipes! He has put on 45g in last 3 months. Aargh.

Please, please, advice gratefully received!

MayfairMummy Thu 17-Dec-15 10:28:24

Giraffe,
there are lots of people around who can help. I highly recommend joining the cmpa facebook site (it's what helped me when i started the whole allergy journey).... and in the interim, perhaps we can think about a)why no weight gain and b) high calorie foods.

To start with a), I am told that weight in itself is no longer determined to be an allergy identifier, (but height is), but I know that some allergy babies do have trouble gaining weight. Is it possible that your little one's gut is reacting to something that means it's not absorbing nutrients properly? My middle child was always fat but dropped down below 9th centile for height until i finally clicked on wheat (we'd stopped eating various other allergens already), and he's grown normally ever since. he's now average height (dad is 6'3"). Are you doing a food diary to track what reactions he is having? Sometimes the only reactions are gut reactions; you may not see them externally (though look for behavioural issues too). With regard to 'testing', the gold standard is to do food challenges - which need to be done at home for the challenges which aren't necessarily IgE. my DS had been eating wheat regularly (though little of it) for quite a while ... wasn't until i upped the amount to a piece of bread a day that it became obvious what was going on (he turned into devil child). having said that, once we stopped wheat, he slept through the night for the very first time (at 18 months) and his eardrums stopped bursting (had happened more than 20 times). Wheat doesn't come up on our 'tests'... so it really was trial and error. (i'm not saying your issue is likely to be wheat; just suggesting that it could be something you've been happily feeding your little one).

To b), avocado is great for good fats. Try googling a 'raw chocolate mousse' recipe. You'll get something made of likely honey, cocoa powder, avocado and maybe banana. Sounds awful but tastes divine and no need to feel guilty!. The whole family will like it (you'll have to trust me on this one). There are also a lot of other 'raw' recipes that use nuts (just google raw food recipes), which would probably be good for you, also many of them are dairy/egg free which might help stop irritating his gut. Coconut oil is great for cooking with; olive oil is good for drizzling....

best of luck!

yorkshirejo Sat 19-Dec-15 22:25:26

This book is great and i second all the above too. Good fats are so important. We add 1tsp either coconut / cold pressed olive or sunflower oils to meals. Sadly we are intolerant to avocado (tummy pains), but we do nut butters too (meridian is a good brand)

www.amazon.co.uk/The-Allergy-Free-Family-Cookbook-delicious/dp/1409155811

BumWad Sun 03-Jan-16 21:35:44

So does he eat any dairy? Some say milk protein intolerant babies are OK on butter?

As somebody mentioned avocado is excellent and very high in fat. Have you seen a dietician?

Giraffe999 Mon 04-Jan-16 16:17:51

Thank you so much for the advice. It is enormously appreciated. Interesting with wheat: I have coeliac disease and so does my sister so I stopped gluten in his diet fairly early on. And weight gain was erratic after that. The dietician (who has been next to useless and discharged us in October) said to reintroduce gluten. In ways quite reasonable to suggest this so that Paeds could test for antibodies, but it is since reintroduction that weight gain has essentially halted and the time between that appt and Paeds appt was nearly 5 months. We are due to see Paeds in 4 weeks so I was planning to continue gluten containing diet till then and ask them to check his antibodies.

Also behavioural element: insightful comment above!! This is definitely a factor. Very early on this took the form of raspberry blowing and spitting but ignoring this eventually did the trick. He still mucks about though and I have perhaps let him off with things a bit as I just want him to eat. The paediatrician did say that children in the UK almost never "starve" unless parents deliberately withholding food I've let him go without a bit if it means he gets the message. So I have been much stricter of late and he does seem to get the message.

I will check out the cookbook on Amazon, and will definitely try the avocados: great idea, thank you all!

MagratGarlikAgain Sun 10-Jan-16 09:49:33

DS2 has multiple allergies, including dairy and nuts (as does ds1 minus the dairy), but ds2 (who is now 7 yo) was considered to be "failure to thrive" at about 7 months on because he dropped two centiles from the 9th to the 0.04th. He projectile vomited up to 6 times per day, every day and did not eat voluntarily until he was 3yo. It was a very difficult and distressing time, which became worse when I stopped breast feeding him at 13 months and he moved on to hypoallergenic formula, neocate (that's when the projectile vomiting really kicked in).

The dieticians insisted we could not stop giving him neocate, even though I was sure a lot of his symptoms became worse when he started on it. One day I just decided to stop giving it to him for a week to try and within 2 days he ate voluntarily for the first time in his life. A few days after that, we heard words we never dared hope for, "I'm hungry". We still give him 6 small meals per day instead of 3 normal ones and find if we don't, he struggles even now.

He's still tiny, even now, his weight is still on the 0.04th centile and his height on the 2nd. He's still under a paediatrician to track his growth, but it's not the worry it once was. It's been a long and difficult time, but we got there.

No particular advice, but I just wanted to say that you're not alone. It is worrying when they don't grow and it makes you question everything sad.

pashmina696 Thu 14-Jan-16 14:43:23

My DS appeared to tolerate a lot of milk products but i didnt actually see him well until he had been entirely dairy and soy free for 5 weeks - it allowed his gut to heal. He saw Dr Fox at st thomas hospital in London who diagnosed delayed milk protein allergy. I make dairy and egg free cakes and biscuits for them which they occasionally have a snacks,(my other DS is egg allergic..) and always try to add fats to his meals. bamba crisps are good - 55% peanut - as a snack. good luck.

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