Serenity’s Diet

Please note I am not a dietician, I have no dietetics background, my degree is in Construction so far from it! All this information I have learnt from guidance from the hospitals, our dietician combined with my own research.

Serenity has always been NG Tube fed from birth. Serenity had my breast milk down her NG tube for about the first 2 weeks of birth. However due to her low birth weight, she has to be put on Infantrini, a high calorie milk. This would help her catch up with her weight. This milk has roughly 1 calorie per ml, so a lot more calorie dense than regular formula. After about another week she was on fully Infantrini. I was happy I could get a few weeks worth of breast milk but I think the stress and being at the hospital all the time affected my flow. This didn’t really matter in the end anyway as after we received the diagnosis, Infantrini is recommended as it has a lot more energy in, so she would depend on this energy to stay awake. To be honest this didn’t really help. When she was back home she slept pretty much 24/7 but it did help with the weight catch up.

We were lucky to get this milk on prescription, therefore it was delivered with all of her NG Tubes and feeding equipment. She had 8 feeds a day, 30ml a day to start off with and this gradually increased. This was difficult as Serenity would never wake for her feeds, so she relied on me to get up every 3 hours to feed her down the tube. Eventually the milk feeds increased so I was able to take away the 3am feed. For the first few months she was just on Infantrini, I cant remember the ml she was on but this was guided by our Dietician based on her weight and growth chart. Serenity would never wake for her feeds.

I completely disagree with the growth charts and when your consultants look at these I wouldn’t even take any notice. That’s bad advice, I know, but these growth charts are based on babies with no extra needs or conditions, a PWS baby will never grow like this and should not be measured against. I think there needs to be a chart for PWS children, so they can be measured against other children with their condition. Serenity wouldn’t even be on the lines, and I was so worried thinking ‘what if they think I’m not feeding her,’ ‘why isn’t she growing?’ etc, but that isn’t the case, Serenity will catch up in her own time.

Once her weight caught up, she was allowed to move onto regular baby formula. I chose Cow and Gate purely as they sold this in most shops, some formulas you can only get in the big supermarkets. I put her on stage 2 as she was after 6 months old. At this point weaning was still a no go. She couldn’t drink by herself yet and I was giving her water down the tube. I did stop flushing the tube as I found this gave Serenity bad reflux. She had Gaviscon mixed in with every feed. I gave her about 80ml of water down the tube about twice a day, this kept her hydrated and didn’t affect her reflux much.

I did notice when she came of the Infantrini she did lose a little bit of weight. Following advise from our dietician she was on the same volume of milk, but the calories went from 100 calories per 100ml, to about 68 calories per 100ml, looking back she was bound to lose weight so this was a bad move. The lesser energy didn’t really affect her, after 6 months she was awake pretty much most of the day.

At about 8 months old I started weaning. I didn’t know anything about weaning or portion sizes. I was so worried about developing any ‘bad habits’ that would affect her and her condition later on in life. The dietician gave me the amount of calories Serenity should be consuming a day. This helped me as with her milk intake, I could work out the amount of solids she needed to consume to grow and be healthy. Serenity could only manage a small amount of purees at this stage. I didn’t want to get anything shop bought, there is nothing wrong with this, I just wanted her food to be as pure as possible with no added salts, sugars or oils.

Serenity’s favourite was orange vegetables. I boiled these till they was soft, and blended them boiled water. I blended these to quite a loose consistency with no lumps. I started of just doing 1 vegetable / fruit at a time, then started mixing for different tastes. Some examples are:

Sweet Potato
Butternut Squash
Carrot
Banana
Broccoli
Tomato
Pear
Mango
Red Pepper
Sweet Potato and Carrot
Tomato and Garlic
Tomato and Red Pepper
Mango and Carrot
Tomato, Onion, Red Pepper, Carrot (I used to make this, and blend this down with stock for me to have as Tomato Soup)

I would do this minimum once a day from about 8 months old, then increased the frequencies. Her milk dose didn’t change. I continued doing this for a few months increasing the portion and learning about different textures. At this point Serenity was still having really smooth paste like ‘meals.’ At about 10 months old I didn’t have much dietician input as we were moving house out of the postcode, which meant our consultants had to change from a different hospital. This has taken a long time and I have my first dietician appointment tomorrow! As I had little guidance I contacted the PWSA for help on recipes and portions. They sent me a few simple recipes over of home made purees. I then just started getting random vegetable and fruit combinations. Serenity is not fussy at all, she loves everything I give her. I do not add any extra oils, salt, sugar its as natural as it can be.

After 1 years old I wanted to introduce meats, her portions have also grown at this stage. I did manage to get hold of the dietician and she recommended a rough daily calorie in take for Serenity of 700 calories. This was based on a rough weight but I should get an accurate daily calorie count at my appointment tomorrow. I wanted to know the calories so I would work out the amounts in her food, so I knew how to wean her of milk and on to solids fully and know accurate portion sizes for her age. Some of her favourite meals are:

White Fish, Brocolli, Sweet Potato
Chicken, Tiny bit of peanut butter, Tiny bit of curry powder, Broccoli and Red pepper
Beef, Carrot, Spinach, Sweet Potato
Mince beef, Tomato, Spinach, Onion, Whole-wheat Pasta

The meats were cooked in Coconut oil which is also weighed and counted in her portions. The Vegetables are all boiled and combined in a food processor. Hot water was added to get the consistency right. She can manage small lumps now.

Sweet Potato is fantastic, it blends up really nice and Serenity loves it.

It seems a lot making all of Serenity’s meals and working out the calories, but i tend to make a large portion, split them down and freeze them. Knowing the calories has really helped me learn about portion sizes, eventually I will stop calculating the more I learn about foods and I will be able to do this intuitively.

At about 1 year old, Serenity can manage to drink water and squash by herself from a Sippy cup. She still cant drink milk from a bottle, but after watching her and trying again and again, she can do it I think she just doesn’t like the taste of milk. So to get her of her NG Tube we have started combining her meals with her formula.

Serenity is about 1 year, 2 months old, her current diet consists of:

Breakfast: 1, 1 half Weetabix, with 160ml of her formula milk

Dinner: a home made meal, one of the above and 1 small yogurt

Tea: Sweet Potato and Veg blended with her formula milk

At the moment this works, I imagine following her appointment her calories may go up so I will have to include more calorie dense foods. I have been advised by the Prader Willi specialist that we must create discipline and routine around meals. We have been advised, 3 meals a day, no extra helpings, no desserts and no snacks for when she is older, but I like to try and get into this routine now. I give her a yoghurt with one of her meals for calcium and to help with reaching her daily calories.

I do worry about the future, and certain occasions like kids birthday parties or being left with relatives as I have developed such a routine with her and work hard on her meals. These things will be things I have to overcome when it comes to it. The above is a ‘cake’ I made out of watermelon for her first birthday. She couldn’t eat this, she could only suck the juice out, but I think this is what I will make a yearly routine in our household so she doesn’t feel like she is missing out.

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