Gastrostomy - How do I decide??

catherine2

Hello

William is 3 years old, CP quad, no speech. He weighs about 22lbs - 3lbs less than his twin brother who has no problems with CP although until recently was a fussy eater.

Both of us parents are quite small so he's never going to be a strapping lad.

Here's the facts for us:

- Meals take about 30-45 mins
- He has reflux but this has been under control for several months
- He takes 1 sachet of movicol a day in his milk
- Food is all pureed, flavours and selection limited
- Nutrini milk is given by Avent baby bottle
- No other fluids tolerated
- For weeks he will eat pretty enthusiastically, having around 4 ice cube sized portions for a meal, then he'll spend the next few weeks refusing to eat savoury foods completely or just preferring one meal a day.

Because he has no speech and no detailed communication method I am unable to get much feedback on what the problem is or what he would prefer outside of his limited range of choices. He is though, able to make his refusal very clear.

The problem is this. I have lost all objectivity on what is normal. This life has become our normal. William is certainly not at death's door, he is happy to play although gets tired and needs little breaks regularly. Mostly, he will eat something, and is very reliable taking his milk - is Gastrostomy and 'over the top' decision for us?

I do worry about William's eating and drinking all the time so I can understand the convenience benefits. But on the flip side William is starting to vocalise more and more and he is quite bright. I am very worried that I will jeopardise his potential for words if he refuses anything oral post op and doesnt use his mouth muscles.

I've read most of the posts on this subject for Early Years and they all sound like more serious cases than ours - although as I've already said I seem to have lost all sense of objectivity.

Any advice or thoughts gratefully received.

C

mart72

Hi,

We also have a 3 yr old with CP quad, no speech and she weighs 24lbs. She is quite tall and looks quite slim. She had reflux for a long time and the ranitadine and domperidone she was prescribed made her vomit more, so we took her off it and slowly she seemed to grow out of her reflux, although if she eats too much she will still be sick. She takes 4 bottles a day of approx 4oz of Fortini milk, very poor breakfast, but eats a variety of lunch meals and follows with a custard based dessert, followed by a bottle and dinner without dessert, but followed also with a bottle. She can be fussy with some things and nothing with too many little lumps. On more than one occasion it has been suggested that we consider having her peg fed and we have resisted, simply because she CAN chew and swallow. She will eat crisp type foods as well as smooth and I personally feel that it is important to keep her oral skills active. The gastrostomy tube was suggested as a top up feed at night, but as her breakfast is fairly poor, I did not want to prevent her from having an appetite.

However, the doctors have advised that if she put on a good amount of weight, she would thrive, but I generally feel she is not the round peg they want her to be and she eats a good amount of calories and is still slim, but happy and never hungry. The doctors also told us that the length of feeds interfere with our lives and the peg would make it easier for us, which I did not feel was a good enough reason either. She can take 30mins - 1 hour to feed, but like you, it is part of our lives and we want to continue with encouraging her to use her ability to eat and chew as much as possible, which hopefully enable her to communicate in the future. She too is making more and more noises and although I would not rule out giving her a peg, I will resist until I feel it is completely necessary.

Obviously, how you decide is up to you, but this was my line of thinking and as a mother to a child with CP you know your child more than anyone else and you have to trust you instinct as you know better than anyone what is right for them.

I hope I have been of some help to you and good luck with what you decide.

M

renacahill

Goodness reading the 2 posts above sounds just like my grandsons story regarding weight and eating! He is 2.9 and weight about 23 lbs and supposed to be quad spastic but goes from hyper to hypotonic with no actual spasticity. He luckily has never had reflux, but gags easily and will frequently vomit meals, no pain or arching though. Same story with feeding - around 30 minutes, and he has slightly lumpy food but mainly because all his teeth were taken out (enamel hypoplasia) and he has since grown 4 back molars, which he tries to chew on!

My daughter has all the food supplements going, procal powder, high cal milshakes etc as it was suggested to her elli had a PEG to get him up to a better weight. He is normal height for his age but weight has never really got off the bottom line, so you can imagine how skinny he looks. He does tire easily because of all the extra effort the cp causes and it would be lovely if he were a bit chunkier, but both my daughter and her brother were skinny little toddlers and children with miniscule appetites, so I'm thinking elli's non interest in food is similar. Its a constant daily battle (and time consuming) to get enough calories in but my daughter was very against a PEG provided he was still putting on weight, however slowly. She didn't rule it out though but the practicalities of night feeding were not a good idea as he is a shocking sleeper anyway so unlikely to lie nice and still for feeds. Also he is pretty active and no matter what they say it cant be very comfortable. He is vocalising and the SLT told us that the more textured food we can give the better to use his mouth muscles and get them ready for speech.

Oh and he won't entertain milk, only drinks calorie free water!

kingyclan

Hi ladies, I am many years further on but finally gave in after huge reluctance when my son was 9yrs. We had followed the path you are on, encouraging eating, pureed food, supplements and many many McD milkshakes but by the time we made the decision he was looking too thin, his health was suffering and he was missing school and he was tired. I was making a daily trip to school to take him out of his chair, onto my lap to drink a high calorie drink from a beaker - he could suck but not manage solids well. School wouldn't do manual handling I was doing hence my daily lunch time visit. The problem came to a head when I was in a cafe and had to ask a stranger to help me lift him back into his wheelchair as I couldn't do it - he was too big.

The decision is very individual. You may feel its inevitable but you'll keep going as long as you can. Certainly when health starts suffering, the decision isn't really a decision any more.

On the plus side we haven't looked back. Oh the agony of mealtimes has gone, we can go out without worrying about needing to find the right food, a venue we can sit in for over an hour etc etc. Decide for yourselves whether this is a positive but he's one BIG lad now, taller than me, a good covering and weighing about 9 and 1/2 stone.

This all means he's very healthy and has come through several major ops in good condition (another advantage of tube feeding) but he's so big this brings other restrictions into play - the downsides.

He also refused to eat anything from the day of the op - which says much about how much he hated mealtimes and now only joins us at the table on Xmas Day which he recognises as being important. Meals out are a bit of a non starter and boring for him so we've lost the social element of mealtimes.

Hope that helps. Btw, Altacite is a good reflux med which we used for many years.