Consultant wanted to put PEG into DGS(CP) - Furious about it

[SayItWithWine]

The Disability Cons. suggested to my DD that DGS(CP) have a PEG fitted as he is still not on the chart for his weight (he is for height) (Cons thinks he cant swallow!)

Why does my DD have to explain that he can chew and swallow fine (he eats toast!!!), but is just a very picky, tiny eater. She gives extra vitamins, fish oils, adds pro cal powder and dense calories to his food - she literally cant do any more and doesnt need the stress of that. She shouldnt have to point out that he was 4 1/2 lbs at birth (37 weeks) and following a steadily increasing line just under the chart, and if he'd just been 2 lb heavier at birth he would be on the flaming chart! He was also exclusively bf for 6 months and the chart she uses is not for bf babies!

She also is determined to start him on baclofen and convinced he is quad spastic even though the Neurologist says he is not. He does not have spasticity but goes rigid when she mauls him around! Then sits back all relaxed and floppy!! If he takes baclofen he will be like a stranded jellyfish!! DD is not giving it by the way, except a small dose at night to see if it relaxes him with sleeping (he doesnt have muscle spasms btw doc - he is just a crap sleeper. My DD would KNOW! So cross and ranty as he is doing well and so was DD

Sometimes a child can swallow and can eat but the effort, co-ordination and strength required exhausts them and uses up the energy that they would have gained from the food.

It sounds like your DD is doing all that she can in the form of vitamins, fish oils, procal, etc., and it still isn't enough.

The charts, although a nuisance for most NT children, are actually there for a reason. You don't give your GDS age, but presumably he is past the age where milk is his main source of nutrition.

Additionally, children do most of their growing and strengthening during sleep, so if he is not a good sleeper, that will have a knock on effect because he is using energy at a time when he should be conserving it.

A PEG isn't a sign that your DD has done badly, or your GS. It is a sign that conventional feeding is not supplying him with enough calories to thrive.

It simply isn't logical to say 'well if he was 2lbs heavier at birth he would be on the chart.' If he was, he might be on the chart, but it is part of his overall condition that he wasn't 2lbs heavier at birth, and most children that are born at 4.5lb jump up the centiles as they grow to reach a normal weight.

Sorry, but I do think that sometimes doing to best thing for the child means getting past your ideals as a parent/grandparent. It isn't about either of you, it is about him. How would you feel if you were running on empty all the time? I wouldn't like it.

To be honest your DGS sounds more Dystonic rather than Spastic, particularly with the fact he tenses up when getting manhandled but relaxes afterwards, this is very like my ds and they said at the start he was Spastic as, like Riven says, they only see a snapshot of the child so anytime they handled him he was stiff hence spastic diagnosis, Neuro however saw right away that it was dystonic CP rather than spastic!

DS also can eat but is ridiculously picky, he will only eat what he wants to eat and is very stubborn!

He was always off the charts weight wise, he was born at 26 weeks weighing 2lbs 6oz and always struggled to get in enough calories, we used all the supplements but he just followed a line that was way under where he should be.

They suggested a PEG to me at around 2years old too but i fought it for ages, made me feel like a failure and i wanted to keep trying myself.

Eventually it got to the stage where if we didnt get it done soon he might not have been strong enough to handle the surgery.

He was 4 and a half and 8.7kgs but now 2 years on he is well over 19kgs and for the first time is in the right clothes for his age...they are even a bit tight round the waist!!

I know exactly where you are coming from as i was there too but just try and keep an open mind about the PEG if you can as everyone i know who has fought it has then gone on to say it was the best thing ever!

Hi all. Your comments are very interesting and I think DD will keep an open mind regarding the PEG. Riven DGS has not had a formal swallowing assessment, but SALT saw him glugging away at a beaker of water and was quite happy with that. He has never choked on food or fluids, just never liked it. Will eat chocolate buttons for England though.

DGS is 24 months old and weighs 9.2 kg. (9th centile for height but skinny and tall looking) He is only slightly under the bottom line, and if it were a bf chart he would be on it. He would be constantly pulling at the tubing and as his sleeping is a big issue would be very difficult to PEG feed overnight. On purely practical levels it would be difficult. DGS is just 2 so may be it is around this time they start suggesting it?

I really think if he was just an underweight toddler as seen on Child Health threads noone would suggest this. There are same age toddlers there weighing less than DG and no one says PEG! I think it would interfere with his increasing mobility too. But as you say he needs extra calories! DD is going to syringe in 10 mls of procal shot between meals (an extra 100cals!)

glittery you have it spot on with the rigidity thing - DGS is athetoid, I would put money on it, DD (Mum) is sneezecake, btw. so you probably know her! He doesnt have any involuntary movements apart from a bit of finger twidling (only sometimes) so is not wasting energy there, and actually sure he uses fewer calories than a NT toddler as not very active, but when he does do things uses up more energy fighting against the muscle tightening.glittery your DS 8.7kg!!

DDs attitude is so long as he is putting on weight and following an upward line its not an option, and for now he is healthy and happy, doesnt get colds and bugs, and the sleeping is more an issue. Does baclofen build up in the body? Is it good as a sleep aid. He is on melatonin already.

DGS doesnt appear to have muscle spasms (I'm assuming they are painful?) Just the excited rigid thing. He then overcomes it and visably relaxes which allows him to hold objects (clumsily, and only left hand) His legs seem better and could crawl easily only right hand/arm hasn't a clue what to do. He has basal ganglia damage which fits with the athetoid. Other bits of brain were OK.

Physio is against baclofen. He had fits at birth and minor vacant episodes for the first year, so DD very anti anyway, but prepared to give a small dose at night just for sleeping. Not spasming at night, just wakes up winging and tired - she thinks habitual. Needs to bf to go back to sleep and she co sleeps (can't face any more trauma regarding sleep training just yet!)

PS He can wobbly sit with propping. Has a walking frame and surprisingly good gait, can weight bear. Can feed himself chips, holds head up but it gets heavy! Weak trunk and big issues with balance and coordination, but has made a steady improvement over the 2 years and is starting to use his right arm. Good understanding of everything, follows instruction ('push here') says about 6 words (since 18 mo) not increased number but now making more sounds. He is doing well and this is what I mean regarding having bombshells dropped on poor DD

Baclofen made ds worse, it lowered the tone in his trunk and made his arms stiffer as he was trying to work them harder.
we tried melatonin but it didnt work for him either.
i think the sleeping thing will always be an issue with ds to be honest, we have tried several drugs over the years, some have worked for a wee while until he got used to them and we have had to change.
the best was Triclofos but they dont make it anymore so we are currently using chloral hydrate, sometimes it works sometimes it doesnt!
on wednesday night there he slept 13 hours straight through but on thursday night it was only 7 hours and he was up 6 times in that 7 hours!
he was at his grans last night tho so i managed a wee night out and a long lie this morning!

Another one here who ended up with a tube at 4, but did have a couple of barium video-fluoroscopies which showed deteriorating swallows. And she was getting more chest infections from aspirations. She is now 8 and nbm.

You can feed both ways - orally and then top up with the tube. Doesn't have to be either/or.

Someone has said to me that there is a bit of a "fashion" for tubes atm. Don't know if that's a widely held opinion?

Rifton gait trainer so all strapped up at top. Laughed like a drain yesterday at visual joke on CBeebies, and rolls over. He does lots of stuff, why put him through the trauma of an op for the sake of a few extra pounds in weight. He already has one lined up to remove his front teeth as they crumbled away because of IUGR. Not helping the eating! What you say about snapshots is so so right, but surely they should look these other issues up?

We had the tube version of Keto - cue blocked tubes and blocked guts!!!

hi mum told me about the thread, I've calmed down a bit now.
Although I have thought about this before I'd never thought that it would be suggested to me while ds was gaining weight.
ds is a puzzler, I would say he has a small amount of tightness in his abductors but it doesn't cause any deformity, he just crosses a bit when he walkes.
I also would have said his right arm was stiff as he tends to hold it out, that was untill yesterday when I was demonstrating to mum his tightness, but I was able to bend both arm with no resistance what so ever!
he has mostly low muscle tone, especially core, his head control is good now.
no problems with eyes or ears.
as far as functional ability, he can sit with propped arms (when in the mood) does a bit of crawling in his own fasion (imagine a catapillar!)
he is walking with his gait trainer, he can't quite push it along, put we've only been trying him in it for a week.
he mainly uses his left hand/arm for everything, but the right one lately has been joining in.
I was really reluctant about the baclofen, mainly because of the seizure threshold, (its been just over a year since his last one) and the dr said it may help with his sleeping which is so variable, one night he can sleep through with 1 wake up for a drink, and easy to settle again, whereas othernights he can wake up 8-10 times and fusses an awful lot, sometimes dh needs to get up and settle him, (without me - booby too much temptation) this is usually when I have to work a 13 hour day!
so at the moment he is having 1mg at night the past 2 night have been okish but he has still woken up, but easily settled again, big test will be tonight, (working tomorrow)
I'm not convinced about the suggested muscle spasms at night, In my experience they are quite painful, but ds wakes up with a tired cry, not a 'I'm in pain' one.
it's all so very confusing we were supposed to see the neuro dr again but no appointment as yet, he did seem quite sensible, and examined ds while he was sat with me and more relaxed, and not plonked on a table where he just screams! and that when he said that he has no spasticity in his upper limbs. I thought if they were a spastic quad (like ds) the spasticity would be there all the time, not just when he was distressed/displaying his independance/excited!
anyway thanks for reading my ramblings!

Glittery The baclofen effect is what DD fears too. A Mum said recently that her DDs arms improved when her trunk strengthened, this is what we are hoping for. Makes perfect sense that baclofen will worsen the situation for DGS. Does your DS have a sleep system bed? Probably does so I just guess he is an even rubbishier sleeper than most rubbishy sleepers!!! Sleep deprivation is the curse of SN!
melted wouldnt surprise me if there was a fashion for this, just don't think DGS is needing this. PS I have seen this done on an adult and its not nice at all.

Riven Think you are right about the night waking. DD herself was a little bed wanderer! Its that lack of quality sleep (in DD and DGS) combined with the need to be enthusiastic for the physio and extra activities - DGS cant be plonked down to 'play' - that wears you down, without needing the added stress of him not gaining weight fast enough.

was you dd steadily gaining weight?
see ds has never lost weight, or suddenly crashed his weight - I could understand the suggestion if he had.
Sometimes when your on a bit of a high abut their development, they cant wait to find a way to crush you again!
she could have been feelign the waters to see what I thought about it, I suppoose she has to ask.
also the past half week he's been eating so much better and wanting what we're having etc. showing a bit of an interest, it could be the start of him wanting to eat more??????

Don't you think that sometimes Paeds suggest things that they want you to think about for a year or so anyway - to sort of "wear you down"?

yes melted, exactly, that what has happened with the baclofen!

hehe yes totally melted, they have been mentioning the Baclofen pump to me for a few years now and im starting to think about it!

sneezecake they may be mentioning it just now as even though he has been gaining weight steadily, he hasnt been gaining as much weight as they would like IYKWIM?

sayitwithwine no he doesnt have a sleep system, he tried a few but they didnt agree with him!
P.S. think you should change your name to sneezecakesmum!

or sneezecakemajor!

or sneezecaketheelder? lol

ita that they mention stuff years ahead to get you used to the idea. We've had all sorts "mentioned" and I always approach whatever-it-is with an open mind because at some point we may need it so might as well be open to the info from the start.

I have to say I've started turning that round on them ... they're likely to want to artificially induce puberty in DD1, & I've already started dropping hints that this may not be as cut-and-dried a decision with DD1 as it is with other kids, to give them time to research the pros and cons for us before we're faced with a snap decision.