Cystic Fibrosis BLW

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Cystic Fibrosis BLW

Postby Meemite » 18 Sep 2015, 08:27

Does anyone have experience of BLW a 6 month old with CF? He is a twin and was born 4 weeks early. He currently has no interest in food. Anyone with experience please contact me. I'm worried about him losing weight!!
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Re: Cystic Fibrosis BLW

Postby pimento » 18 Sep 2015, 19:04

I didn't want to read and run. I dont have a child with CF but CF runs in my family and I have done a PhD in CF research so your post resonated with me.

Although not having an interest in food at 6 months is not really an issue in itself (it's pretty common), like you said, weight loss and fat intake is a concern. High- fat healthy foods like avocado would be a winner. Also remember that BLW is not anti spoon- you could mash some avocado and put it on a spoon and see if your little man wants to lift the spoon to his mouth and have a go. How about hummus? Again, either on a spoon or with cucumber to dip.

I'd do a search for high fat foods here on the forum or start a new thread asking for high fat foods so that more people read and reply.

Hope that helps.
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Re: Cystic Fibrosis BLW

Postby Meemite » 19 Sep 2015, 22:06

Thanks Pimento, very kind of you to reply. I'm very committed to BLW but just want to ensure it is right for my babies. I appreciate your help x
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Re: Cystic Fibrosis BLW

Postby Treeb » 20 Sep 2015, 02:04

I don't have any experience with CF. But, as pimento says, BLW doesn't rule out the option of using a spoon for foods or even giving purees if you thought your child needed them. Some babies need a little help holding/balancing the spoon at first or will guide your hand to their own mouth with a piece of food in it but not yet fully feed themselves. There are ways to make BLW work for you and your needs, even when your needs are a little different from the typical baby's.

Many babies don't start eating right away at 6 months, but they keep growing just fine from their milk intake. Is there a reason to think that milk won't be enough for your son to keep gaining weight just fine while he works on figuring out eating? (Sorry if this is obvious, as I said I have no experience with CF.)
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Re: Cystic Fibrosis BLW

Postby Raktajino » 20 Sep 2015, 07:56

I don't have any ecperince with CF either. Are there any associated developmental delays in sitting, coordination, head or neck strength to consider? From what pimento and you indicated there is a concern about weight gain or weight loss?

Milk is very nutrient rich and fatty, more so than pureed veg certainly, so the blw focus on continued milk feeds and only dropping them at your baby's pace may be beneficial. In terms of high fat content food, you can replace cows milk with cream in your cooking of sauces, custard, mashed potatoes etc. Fry or roast vegetables in butter, or goose fat instead of steaming or boiling them. Use nut butters as a spread, tahni and hummus are high fat too. Plenty of cheese, in a white sauce, as a snack, whatever! Full fat greek yoghurt is great as a first pudding idea, you can stir some fruit puree though, but its nice a think so good for not falling off the spoon!

And as treeb says, there's nothing wrong with making blw work for your baby. Blw is more of a mind set of respect for the baby in my opinion. You can use a spoon or not. You can help guide food to your baby's mouth, or not. Do what works for him!
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Re: Cystic Fibrosis BLW

Postby babydsmummy » 20 Sep 2015, 20:15

Hi, we thought my youngest may have CF when he was a baby - 5 borderline sweat test and a DNA sequencing finally ruled it out. We were lucky, but I know a little about what you are experiencing. J was very underweight as a baby so weaning was tricky and he was delayed in his development so that also made it harder. As everyone else has said, milk is the most important thing. J wouldn't feed himself but when I helped him with some yoghurt or Weetabix (the only things he would entertain at that point) he then wouldn't have his milk afterwards. I came to the conclusion it was more important that he drink his milk (going against HV advice) and letting him pick up the solids when he was ready. He went onto Infatrini at 9 months to help his weight gain and then he finally started to gain. He started eating properly at 21 months. I think what I'm saying is let your lo be your guide and as long as the milk is still going down, don't worry too much about the solids. If he prefers solids to milk, then you may need to make sure the food is higher calorie - cashew nut butter was our friend for a while!
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