Advice needed on possible gastrostomy

[mole1]

Hi, my dd2 is 9, she has GDD and microcephaly, but no diagnosis. She can't walk unassisted, has no speech and limited understanding.

Since birth, feeding has been an issue. She did ok-ish on breast feeding, but since then it has been a constant struggle to try to get her to put on weight. For the last 2 years, she has barely gained weight, despite increasing quantities of high calorie supplements. These just don't seem to be working.

She weighs about 15.3 kg and wears clothes for about a 5-6 yr old.

Her usual doctor has finally decided she might have to have a gastrostomy. He has referred her to a specialist and the appointment is on Thursday. I so don't want her to have this, we have got this far without it, I know she isn't really thriving, but she is still growing, just is very thin. She seems to have lots of energy, isn't tired and doesn't get loads of illnesses.

Those of you with experience of this, would you recommend it? I know she would try to pull it out, probably succeeding - she is always into everything! I just think we would end up replacing the high calorie drinks she has regularly every day with the same calories down the tube - is this wrong? A nurse friend I know also said it can cause major problems with diarrhoea?

Thanks in advance.

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Hi, my dd2 is 8 and has had a Gastrostomy since she was about 4 or 5. She has SLD and physical disabilities, and eating was very difficult and slow, she was aspirating and getting ill.

How well does your dd eat? Do they know why she is not putting on weight? Does she aspirate, or is the problem her slow eating speed?

You might start with an NG tube, which is worse than the gastrostomy, because the child can pull the tube out and you have to re-pass it, because it's irritating to the face, its unsightly.

Putting the tube down is easy and much less stressful if you learn to do it yourself - we found we would rather do it at home than traipse to the hospital to wait for a nurse to do it. Just wrap her up in a blanket to stop the fighting, and go for it, then a good hug afterwards. It takes seconds.

Some children have a silk NG tube passed each time they need a feed - maybe once a day for a bit of feed and liquid, then it is removed.

You have to withdraw and ph test some stomach fluid before you feed to check that the tube is in the right position - that is easy.

The mickey button easier to use because you don't have to check the position, you just connect up and feed. It is tucked away under the clothes just above the belly button, hidden from fingers and stares! . We empty and refill the balloon (which keeps it in place) with cooled boiled water once a week, and I change the whole kaboodle myself every few months - or you can go to hospital for that bit.

I don't know about the diahorrea thing its not something we have had - we have no more illnesses than with oral feeding - in fact less, because she gets a decent amount of food and hydration into her to keep her healthy, and we don't get nearly as much aspiration. Her weight gain is controlled by the diet, so she is not too heavy to manoeuvre.

Getting meds down the tube is much easier than orally.

So for us, the gastro feeding has worked out well, she would be much worse without it. At first I was like you, trying to resist it, but I see now how much it has helped her.

Any questions, fire away!

BTW, the decision is yours, not the doctor's!

Gosh, what a long post, sorry!

My dd has peg fitted in January this yr she is zero fluids atm due to aspirating we are also struggling to get her to eat she has a rare chromosome deletion and various health problems pre peg she was on a ng tube and her weight was falling off her constantly AND she always poorly..

Since having peg fitted she has been on overnight pump feed 500ml of paedisure a night and the weight gain has been amazing she has also not been as poorly as she was in fact only bad episode we have had is her ears perforating twice in space of 5 weeks

She is 24mths and is always pulling and tugging at her tube but it hasnt come out yet thankfully we waiting for the mickey button to be put in now x

Thanks very much for the replies.

I hope, if it happens, that it will turn out to be a good thing, like for your dcs. She is very thin, a doctor recently described her as skeletal, which was very reassuring...

She isn't a particularly fussy eater, however she just has a very small appetite. I still chop part of her meal in a blender as she has problems with chewing and swallowing - if not chopped, she will chew for ages and spit out. More definitely goes in if she eats the blended food by spoon. She also drinks high calorie supplements each day totalling about 750 calories.

Some days she's just completely uninterested in food, eating virtually nothing. She always has her special drinks though. She does also have some issues with choking, but usually only certain types of food, mainly soft slippery food like soft fruit, so we avoid those.

No one seems to know what the issue is, other than probably something wrong with her appetite control centre in her brain. Also some issue with co-ordination affecting her swallowing and chewing.

Could I ask which is better - the peg or the mickey and what is the difference? Thanks.

Could the lack of appetite also be due to poor vitamin balances? - if she is not eating enough of anything, she may not be getting sufficient of whatever it is (I've forgotten the details) that promotes a good appetite?

PEG = Percutaneous Endoscopic Gastrostomy feeding = generic term for this type of feeding.

Mic-Key: brand of peg-feeding button.

Ours is a low-profile button. I was about to post a link but that might be too much info atm!

Interesting about the vitamin connection with appetite. She has a supplement drink called Resource which has all the necessary vitamins in it, but does it have the same effect as eating foods with the right vitamins in?!

If you have a chance, please could you post the link - I guess I'm going to have to learn about this at some point soon... Thanks

If you have a dietician, he/she should be able to help you out with balancing your dd's diet. Not eating for a whole day does not sound like a normal child's appetite to me!

Resource is the brand of food additives, is it not? We have their soluble fibre to mix with our formula. I've just realised that it's owned by Nestle!

As I grow a lot of our food and cook from scratch, I found it hard to believe that gunk in a bottle could have the same nutritional value as our home food. However, we had to look at the bigger picture of dd2's lung function and her weight gain rather than focus on who concocted the gunk that she eats!

Google mic-key button if you want to see what they look like. here