Feeding Update

I have been intending to write an update on Lilian’s feeding progress for a long time but have been so busy and wasn't really sure where to start. It's been a bit of a roller coaster with loads of highs and lows but overall we are making progress. Initially Lilian was bottle/breastfed and she seemed to enjoy feeding. As she was so small from being three months premature she was never able to take enough volume and needed the tube to supplement her. With time she became tube dependent and stopped eating completely. She vomited multiple times a day and became oral aversive and would cry when seeing the bottle or being exposed to wet textures. We worked very hard with our OT and SLT on the sensory issues and eventually Lilian started to enjoy playing and touching food. This was done by firstly introducing wet or sticky toys as part of her play and then moving onto messy food play.

Lilian 5 months - enjoying her bottle

Lilian having some milk via the tube

We came to the point were Lilian loved food and would taste (lick) it but not eat anything. If you saw her in a restaurant you'd probably think she was a typical child just not a very hungry one. We decided to get help from the Graz net coaching team as we felt a bit stuck on what to do next.  We started the programme and we knew we had a long journey ahead of us. Lilian was 100% tube fed with nearly no oral skills. But we struggled with the net coaching programme. Every time we made progress Lilian became ill and we then had to start all over again. We felt a more intensive and hands on programme was needed to help us move on. The main problem we had was that Lilian insisted on feeding herself but she wasn't able to take enough volume. Lilian was also not drinking anything and for us to move forward we needed her to allow us to feed her. The hardest thing is that you cant put any pressure on Lilian because if you do you take 10 steps backwards. It has to be fun and she has to feel in control

The Graz net coaching team recommend we held play picnics as part of the food therapy program. Kids can do what they want with food. No intervention is allowed from parents. It's all about fun and exploring the different tastes and textures with no pressure on eating. If possible you should invite eating children to the picnic and serve the food on colourful dolls plates etc.

Another play picnic - no friends around so invited teddy

Lilian's friend Anabelle having fun at the play picnic

Lilian enjoying pretending to eat

Lilian licking / tasting her food

Lilian eating with her spoon

Deciding to go to Graz was one of the best things we have done. I don’t think people know how stressful and isolating it can be when you have a child that won’t eat. Eating is just one part of it but the worst thing for us was the tube feeding and constant vomiting that comes with it. For example she would vomit if you gave the milk to quick, she cried, had a cold, got upset, coughed, moved her around to quickly afterwards, you had to bring spare coats/hats etc every time you left the house in case she vomited after her feeds.

When we left Graz Lilian was still partly tube fed but we could now feed Lilian with a syringe and she would also open her mouth for food. Lilian opening her mouth for food was the best feeling ever. I had been working on this at home for months and she always turned her head when I attempted to offer her the spoon. The vomiting had also stopped by the reduction in the milk given via the tube. This meant more sleep for mummy and daddy no waking up a night and having to change the bed sheets because Lilian vomited during her feeds. Note: She is still fed on a machine overnight but we have reduced the volume and also mixing her formula with water.

When we came back from Graz Lilian would allow us to feed her when we went out to restaurants and family dinners (not at home). MDS at Graz thought the reason for this were that Lilian had a lot of memories about eating and went into her old ways when at home. So in the early days we took Lilian to coffee shops and cafeterias almost daily. I think Lilian watching other people eat plus the distraction of other people around her helped to encourage Lilian’s eating. Luckily we live in London and have everything on our door step. Also had my mum staying to help us out.

About 3 weeks after coming back from Graz Lilian suddenly allowed us to feed her all the time regardless of where we were. She would open her mouth at each mealtime and just eat and eat. Her oral skills were still poor and most of the food came back out again but she was getting loads of practise. We were so happy and excited.

Unfortunately a couple of days later she caught a vomiting bug (we all had it) it took Lilian a very long time to get over it. She couldn’t keep any food in her (including water) and we worked with our dietitian on finding some milk she could tolerate. We were back to a 100 % tube fed child with zero oral intake and vomiting all the day long. We had to take two trips to A&E due to worries about dehydration. I know from the Costello support group that children find it very hard to recover from these sorts of bugs and it takes a long time to get back to normal. It took a couple of weeks to get her to tolerate her milk. By then she had lost a lot of weight and we needed to get her weight back up  before reducing the milk again.

When we eventually reduced Lilian's milk the interest in food did not increase and we missed the hands on therapy we had in Graz. After about 3 weeks of having decreased Lilian's milk I was about to give up and decided to increase her milk intake again to up her weight and also her energy levels so we could crack on with her physio. I was at a stage where I just had enough of spending so much time and effort on the feeding. So I offered her food when feeding Oskar and didn't worry too much about it. If she didn’t eat anything I would just give her a bit more with the tube. If she did eat something then I wouldn’t. Then for about 2 weeks ago she suddenly started to wanting to get fed again. See the video below

The next step is for Lilian to improve her oral skills to allow her to take more volume so we can reduce the tubefeeds even more and also get her to handle different textures and tastes. We are working with Graz, local SLT and dietitian on these steps. I will try and write a separate post on this topic. We are also far off from getting her to drink anything due to she wants to hold the cup herself and doesn’t bring it to the mouth if there is anything in the cup. More to follow.

A lot of people have asked me if I recommend going to the Graz notube clinic. It all depends on your child. We were lucky in a way that Lilian is in good health and have no other medical issues apart from the challenges that Costello Syndrome brings. What surprised me the most is that Lilian was 100% tube fed for about 14 months and since starting to take food orally she never had any problems with swallowing. Her problem seems to be lack of practice and good oral skills. So going to Graz was the best thing we did for Lilian and for us. I am sure she would have started to eat if we didn’t go to Graz as well but Graz just helped us fast-forward the process. If you haven’t got the time or money to go to Graz there are still loads of things you can do at home. The parents support group named tube fed kids deserve to eat was a great resource to me and you can find lots of advice from other parents

We always include Lilian in our mealtimes

Lilian's danish cousins showing how to eat cheese puffs. They are perfect role models and very keen to show her how its done

Dummy full of cream yum yum

Eating is fun

We have been working on getting Lilian to close her mouth. Licorice did the trick as seen on the photo

A big thank you to Lilian's brother Oskar who is the perfect role model for Lilian. They are both partners in crime when it comes to throwing spoons / food on the floor. A big thank you to grandma (mormor) who has spent many weeks working with Lilian on her feeding and making up all sorts of food for her to try.

Lilian licking her sweets while standing in her standing frame. she is female after all and very good at multi tasking..