Cystic Fibrosis, Family, Food

Making mealtimes easier

Recently I have started listening to Podcasts, particularly when I go out for a walk in the evening to try and get a few more steps in on my Fitbit!

One of my favourites has been Bringing Up Betty- a Podcast about special needs parenting, it’s front woman is a lady called Sarah who has two children, her youngest is called Betty and she has a rare genetic disorder called Potocki-Shaffer Syndrome. The Podcasts partly tell the story of what life is like bringing up Betty and partly discuss a wide range of other issues in the world of special needs parenting.

betty-at-the-pool
Betty- from bringing up Betty 

You can find the Bringing Up Betty website HERE  which has links to the Podcasts, or you can search for them in the I-tunes Podcast app.

Although I have enjoyed most of the Podcasts in particular I found her “Making Mealtimes Easier” episode really useful. In This episode she is in discussion with a Speech, language and feeding Therapist called Don Winkleman and they discuss a whole range of eating and feeding problems from picky eating right through to tube feeding in a light hearted yet very useful interview.

In fact, it was so good I took notes!

Joe, our son who has Cystic Fibrosis, has some issues regarding feeding and Gastrointestinal issues as I have mentioned in previous posts. He suffers from gastroesophageal reflux disease and possibly has some sensory issues around food although we are waiting to see a child psychologist about this as we are not sure wether a lot of his eating problems are physical, behavioural or psychological.

I just wanted to share with you some of the tips, advice and information I picked up from the Podcast as I think it would be helpful for other parents out there who have children with feeding problems, whether they have additional needs or not- many of these tips are useful for any parent when it comes to weaning, picky eaters or just making mealtimes easier for kids on a day to day basis.

  • The feeding therapist Don was very keen to mention EZPZ products as a way of helping children with eating problems or for babies who are going through weaning. They are a company that makes a range of products to encourage independent eating making mealtimes easier and less stressful for the child and the parent! You can visit their website HERE.category-happy
  • She is also an advocate of Food Art- presenting the food in a way that makes it fun and appetising for kids- this is a good way for picky eaters to become more engaged and open to new food. Obviously not every meal time will you have the time or inclination to make a masterpiece out of your toddlers dinner, but I think it’s a good way to introduce new foods or textures and to take anxiety out of mealtimes. Here are some food art pics to whet your appetite that I found on Pinterest! a9646303d507860843ff674548aef3bb679948dca045b61d45b5b4319a2720ce9b1fd696521425dcbfbb9cb4c497bc88470bc84dd1b575b27e70a71636000ef0
  • One of the tips she gives is to try preparing the same food in different ways. So for example if your child won’t eat carrots raw, instead of just thinking that they will never eat carrots try cooking them or presenting them in a different way- try steaming them, roasting them, grating them or mashing them before giving up on that food.
  • If your child has textural issues she suggests finding out what the texture is that they love best- for Joe it’s crunchy or dry food for example- and introduce first new foods with the same texture. When describing them to your child don’t tell them what the food is, just describe it as a plate of “crunchy” food or “smooth” food.
  • She advocates using positive language around foods. She asks you to imagine what people’s language and reaction is around food such as a birthday cake or a giant ice cream and compare that to how people talk about a salad and boiled chicken. Children pick up easily messages about the food they are about to eat from your tone of voice and body language.                               e4f02742a6ef1ad2206f6659d723ee5asad-salad
  • She suggests instead of trying to fix everything all at once try having a goal to work towards every month or few weeks, e.g this month we’re going to try two new vegetables or this month we’re going to try introducing a protein or a different texture.
  • She suggests having regular meal times where the whole family serves themselves from a selection in the middle of the table including the kids- that way the child can have a feeling of control over what they are eating but the parent or caregiver has ultimate control over what’s put on the table.
  • She reveals that a “normal” child will need to be introduced to a food 15 times before they are comfortable eating it. A child with additional needs such as autism may need to be exposed to a food 100’s of times before they feel safe trying it. It’s all about persistence.
  • Exposure to food includes serving the food, having it on the plate, watching others eat it and playing with the food.
  • She suggests that if your child has 20 foods or less that they will eat regularly then they are a problem eater, otherwise they are most likely a picky eater. She suggests that if a child has a meltdown when a certain type of food or new food is put on the plate, if they only eat a limited type of food or skip entire food groups or if they refuse food altogether despite hunger then that also suggests there is a problem.
  • One of the big issues with children who have a very limited amount of safe foods is that eventually they will get bored of eating even the safe foods and this in turn will make their list of safe foods smaller and smaller- this can ultimately lead to the need for tube feeding, which is why it is important to have early intervention.
  • She mentions specifically GERD (gastroesophageal reflux disease which Joe has) and recommends never forcing a child to swallow food that they have gagged on or regurgitated. This is because the food may have stomach acid on it which will taste disgusting and be painful to eat which will in turn possibly put the child off eating that food again. She suggests having a small bowl where the child can safely and hygienically spit food out into if they are gagging on it nearby at meal times. She also recommends keeping on top of anti-acid (Joe has omeprazole and gaviscon sachets) medication and ensuring that the dose is looked at regularly as it will need to be increased as the child grows.
  • Other tips for introducing new foods include; eat what your child is eating, if you are trying to get them to eat carrot sticks for example, you need to eat carrot sticks too- in front of them- so they can see you enjoying the food and can mimic how to eat it. A child with physical problems chewing and swallowing can be helped by letting them look in a mirror while eating.
  • She is also an advocate for playing with food and sensory play but suggests that play time and meal time are separate. For big occasions such as Christmas she suggests letting the child play with the types of food that you will be serving in the days and weeks beforehand so they can get used it it- rather than have them regurgitate it at the Christmas dinner table in front of great Aunt Fanny!
  • She also has some tips for relieving constipation, she suggests eating P Foods- pears, prunes, papaya, pineapple (if you can get them to eat it!), and to drink plenty of water- she says that you should half your child’s weight in lbs and that is the amount in ounces your child should drink  every day.  So if your child is 100lbs they should drink 50 oz of water a day.

Overall she suggests that our medical communities often don’t take feeding and eating issues seriously- we know it has taken a while for our doctors to realise that something wasn’t right with Joe’s eating and we are still struggling for help now. So if your child has problems with eating please keep persevering and asking for help .

Hope this has been useful to someone else out there and remember to give Bringing Up Betty a listen!

 

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