DS1, 14 months will not drink and making grunting noises, pls help, so worried, what could this mean?

[caitlinnjacksmummy]

Hey all, V worried, for those who do not no me and my Ds1 story, Jack is 14 months, severe epileptic, myoclonic, tonic clonic etc etc, recently found out as results of mri that he has damage to left n right temperal lobes , affecting memory, sense of smell and co-ordination. Developmental delay, still cannot sit up , recently crawling and def coming on, just a bit slower, dr thinks he will walk but no guarantees and if he does may take long time, anyway he had horrendous chest infection around 2 mnths ago, and was off his bottles, but then started drinking again, sinvce then he has bn on and off, now AGAIN he will not drink, he is teething tho we think, and now making grunting noises wen forcing him t drink, this sounds cruel, but not, have t squeeze teat t make him drink, is it poss he has lst ability t drink/suck, still sucks dummy no probs, so worried, pls help, we r desperate, jus when his seizures are being controlled better too, this happens again, I have tried sippy cups, bottles, and now even changed him from cows milk which he was recently put on, bk to sma progress, pls help

[caitlinnjacksmummy]

Oh yeah, forgot t mention, he is eating solids brilliantly still

[TotalChaos]

Regard this post as a well-intentioned attempt to reply, but apologies if I am talking rubbish

if he's still eating solids and sucking his dummy fine wouldn't have thought it's any regression that's making him not drink, as would have thought it's the same skills involved. have you tried "forcing" some fluids in by putting a syringe into his cheek? Only other thing I can think of is whether a very small open cup without a spout would be more comfortable? or will he drink any fluids other than milk - is he the same with juice/squash?

[TotalChaos]

oh yes agree with PipinJo about getting him checked out.

[caitlinnjacksmummy]

Hey, thanks for replying, goin outta ma head here, worried he is goin bk the way, he is same with juice yeah, wolfs solids down , but will not drink, allows me t put bttle in mouth but will not suck, aarrghh!! Then after few attmpts he will gag n choke, then prob projectile vomit, it is a fuckn noghtmare (excuse my french, but at my wits end), squels a lot if I bring bottle near him......

[caitlinnjacksmummy]

I mean i am managing t give him his normal daily intake but squeezing it in, but can't go on like this , tried syringe, usually sick

[TotalChaos]

when DS had a chest infection at Easter he would eat bits and bobs but would hardly drink a thing, at one point I had to force fluids down him by syringe. Even at the point where there was one wee per 24 hours he wasn't dehydrated though! have you given him calpol etc in case he's got a bit of a cold/sore throat (assuming that calpol is fine with his epilepsy meds, apols again if wrong).

[caitlinnjacksmummy]

Not tried calpol, yeH it is fine wi his epilepsy meds, who will I speak to? Du think it is an emergency case

[TotalChaos]

I wouldn't go down to A & E tonight, but would try and get him seen at GPs as urgent tomorrow iyswim.

[caitlinnjacksmummy]

Yeah, I am so afraid he is losing skills, dunno if a can take bad news, MORE Bad news... wat does iyswim stand for?

[caitlinnjacksmummy]

No pipinjo, only sometimes he will refuse , mosta time he lets me put bottle in but will not suck... and he is not Not gettn anything, he is taking 360ml if not more every day, but dripping it in, Course ad b beside myself even more if he wasn't gettn any fluid, but he is...jus worried he isn't sucking the bottle or cups, altho sucking dummy

[TotalChaos]

hopefully it's just he is being an awkward kid with a sore throat/sore teeth than anything more long lasting.

iyswim = if you see what i mean

I hadn't thought of the point re:not drinking possibly affecting the epilepsy meds. Possibly give NHS Direct a call then?

[caitlinnjacksmummy]

There is good chance it is his teeth tbh, but could also b his age, bein a phas, but he IS gettn his normal daily intake 360ml and more, just having t squeeze teat, so isn't affecting meds or dehydrating him as he is gettn fluid, just that the little bugger won't suck

[caitlinnjacksmummy]

Pipinjo, it is ok, u didnt scare me, well...jus a little, i know too well wat u mean bout gp's tho, would fart around, as they r not specialised in JACK'S area, just general doctors, maybe a should phone paed's secretary in morning, get him t call me? He does have hand in mouth a lot, cheeks red, and biting everything within garsp, so praying it is his teeth

[deeeja]

Sorry if this sounds stupid, but you mentioned that your ds is not sitting up, do you think it could be reflux(sp?); he may have alot of mucous left after chest infection, making it difficult to swallow liquids.
I would ring NHS direct too.
Hope he feels better soon.

[caitlinnjacksmummy]

Well he was diagnosed with reflux funnily enuf, they thought this was wat his seizures were when he was weeks old....as he would wake making choking noises, but paed says that this is how they started as wen babies r tiny their brains cannot deal with big seizures, so they can b very subtle so they sed he had reflux before seizures got worse and eeg confirmed epilepsy...

[TotalChaos]

yes, I've caught up now, and see that's he's getting an OK amount of fluids down him on a daily basis, just doing your head in in the process! am off to bed now, hope that there's a new tooth or two tomorrow and some proper sucking!

[Twiglett]

my first thoughts are, and please ignore if it's nonsense...

grunting can be a sign that they're finding it difficult to breathe .. is his tummy pulling in under his ribcage? .. are you sure his chest has cleared up?

if he's eating just give him some ice lollies .. crushed ice .. ice cubes, whatever you're happiest with .. and fruit ... I'm sure he can get enough liquids through food

is he teething? that can make it difficult to suck a drink from a bottle or cup

[caitlinnjacksmummy]

speak in morning, everyone feel free t leave messages though t help me in anyway!!!will catch up in morning, n thanks loads xxxxxxxx

[caitlinnjacksmummy]

Hope t god he is teething......