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

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

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?

well I.d get him checked over asap...is he choking on fluids? Or just refusing....try and give solid foods with fluids in i,e porridge has milk in it....as it don't have to be totally 'fluid' until you see dr next day or so!

Don't worry not cruel...he will end up on drip if he don't drink. Get medical assessment for him, hope he is ok and drinking soon x

oh yes agree with PipinJo about getting him checked out.

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......

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

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).

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

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

OK so he refusing before you even put fluid near him....?behaviour

To be honest I'd get him down to A&E now as they will do full tests instead of farting around with GP referrals to other professionals....if your ds is on medication i.e epileptic I would be worried about dehydration as liver not work as good and medication not being digested as normal. His minerals in his body can go dangerous levels also so I would not mess round and get ds seen asap. Also weather warmer ds needs more fluids as sweating....please get him seen.

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

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

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?

Well no you don't need A&E as he is eating but I was thinking of all hasttle with gps as they don't give a toss ds had ear probs other week and gp refused to look as ds would not sit still...I tried to restrain him....so I was sent away nothing more they can do. It is just at hospital they will do the job lot ie assess swallowing fluids (different to solids) etc and with your ds epilepsy they will want to do a MOT. If your GP is good leave to morning then. But get him seen tomorrow...let me know I'm over concerned again Didn't mean to frighten you...sorry!

Well no you don't need A&E as he is eating but I was thinking of all hasttle with gps as they don't give a toss ds had ear probs other week and gp refused to look as ds would not sit still...I tried to restrain him....so I was sent away nothing more they can do. It is just at hospital they will do the job lot ie assess swallowing fluids (different to solids) etc and with your ds epilepsy they will want to do a MOT. If your GP is good leave to morning then. But get him seen tomorrow...let me know I'm over concerned again Didn't mean to frighten you...sorry!

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

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

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.

Shit slow typer here....if you are getting normal fluid amounts down PANIC OVER just read it!

You are worried he is regressing? Every child do esp after a chest infection....give him time to build his strength up he still not 100% if nnot wanting fluids...its hard work though, so worrying. Still get him seen though....you are doing great job getting fluids down though.....beside syringe ask GP or HV for advice (and here of course).

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...

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!

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

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

Sounds like teething....Phewwwwieeee!

I yhink I need an ambulance now

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

Hope he's OK Cjmum. DD has had brilliant help from speech therapist re problems with drinking, eating etc--has DS got one?

We've got the same problem with dd (4). Still eating, stopped sucking the bottle overnight and now we're dripping liquid into her and worrying ourselves sick. She's getting about 60ml's of fluid a day.
I have a refferal to a feeding clinic as we're thinking its time for a tube but its could be up to a years wait!
Let me know if you get any answers caitlinnjacks cos it might apply to dd too (sorry for the butt in)

Morning everyone, thanks, called nhs 24 last night, knew nothing, to b expected, they r not specialists with Jack's case, gonna try get paed this morning..... still making grunting noises, rubbing mouth, but wat a don't get is why is he still suckin his dummy? Weird, but now gonna try feed him, let u klnow wat happens

HeY, called paed, he thinks v ulikely tht Jack has lost ability t suck n that he is sucking his dummy is good sign, got appointment next week and he will check him over, told me t try persevere and as long as he is gettn fluids then that is ok, asked if he had virus, thrush etc but told him he is fine, even tried cup just now, tried suckin a bit, but gave him bottle again, just chews or will not do anything, will just sort of hover in his mouth and have t drip it in, wonder wat is wrong then. The paed sed if a baby is generally good at sucking bottle usually (which Jackhas bn since day one) then very unlikely he has lost ability, and this has only bn problem on and off last 2 mnths from horrendous chest infection

DS2 always had probs sucking from a bottle anyway & even worse during & after colds & infections.
He wasn't able to co-ordinate breathing through his nose well enough to suck the bottle & swallow all together.
To be able to suck & swallow you have to close your mouth around the teat & if your nose is a bit congested its very hard breath as well.
ds2 would also still suck his dummy, I think because he could loosen his grip on the dummy & was still able to breath through his mouth.

Hope this makes sense? I'm rambling.

Hey mymatemax, that is interesting, jack has always bn quite snuffly, and grunts wen put bottle in mouth....so what did u do with yr ds1? xxxxx

yr ds2 even? xx

I hope he's better soon. Would he take some milky cereal as a way of trying to get some more liquid down him?

do you a baby vic etc to put on clothes to try and clear blocked nose...i remember this with ds when a baby. Sounds like virus or chest not 100% better yet. Keep fluids up it is hard work and a worry.

Thankyou, will go get baby vic, have karvol, but not soo sure it is his nose, worried sick, if you's have any more ideas pl, feel free, am up for ANYTHING, just had t squeeze milk from teat into him again

When Ds2 had a bad cold and was off his bottles I put his milk into a dish and gave it to him on a spoon.

bullet123 tried that, does work, but,just want him to suck...........

Wish had a magic wand

Hi - this is probably silly but you can get dummies that you add medicine to - the idea is that the baby sucks in the medicine. Could you put milk in one of these ? I got one in Boots a long time ago.

That dummy idea is good.... definitely a good idea. Will have look for one, thanks!! It is just a nightmare, dread feeding times!!! As if he needs this on top of everythin' else

my daughter did this too at a similar age. I took to spoon feeding her soup to get liquid in her

My DS4 did this too. He has GDD and hypotonia. He would go through bouts of not drinking whuch was alwayss linked to teething (he teethed very intensively in that he got almost all of ghis teeth through in about 6 months flat).

My DS4 grunted because he was constipated due to lack of fluids.

We used a syringe but also tried to get him to eat lots of melon and pears anything juicy.

oif oif how long did it last? du no why she did it? it is so worrying

Hey megha legs, wat is gdd, sorry, am thick lol , yeh pretty sure he is teething, can see all along the top that teeth r there just not through, started teething late, only has two fron teeth at top, he is 14 mnths, also has two big lumps on bottom as if teeth are ready t break through....so does look like teething, doesn't it? And nose does sound stuffy, but he has always bn stuffy sounding t me

gdd is global development delay I believe

yes dd was late teething too, which made it worse. It lasteda while. Cant remember how long tbh

right ok thanks , any tips on ds1 twiglett?

Hey, Jack did try sucking for few secs earlier, still t give him his last bottle b4 bed, but waiting a little while as don't want him sicking up meds

Hi. Sorry you're having such problems. I can't tell from what you say whether you're having to just use a teat to squeeze the milk into Jack's mouth or are using a squeezy bottle? Dd has a cleft lip and palate and so can't suck, so we have to squeeze the milk in for her using a squeezy bottle. If you haven't got one, the cleft lip and palate association sell them and are usually quite quick at sending them out (here's a link to their website: http://www.clapa.com/feeding_equipment.php - you want the standard soft bottle). Could be a bit easier than using a teat or a syringe? Dd hates us feeding her with a syringe...

Thanks mrsbigpants lol , lovin the name, am actually using a tommee tippee bottle and squeezing teat into his mouth, he did suck a little this morning, but stopped again, he is also grunting like he is struggling t breathe wen I put bottle in, also had little seizure wen was feeding him, so disappointed as they seemed t b controlled to the point where he was jus doing it after bath every day, since addin lamotrigine to epilim and nitrazepam, so I feel like bk at square one, gutted

Thanks re the name - v apt cos am still in belly button warmers since my EMCS 5 months ago!

Hang in there - maybe the seizure is related to the chest infection he had?It may be just a phase Fingers crossed.

No, mrs big pants, his chest infection was ages ago now n he has bn drinkin on and off as he feels since..., but for the last 2 weeks he was just takin seizure coming out bath, every day still, but he used t take 3 or 4 a day, but was strted on lamotrigine, but yesterday he had seizure at 8.30am outta the blue, but thought ths was down t him sicking up meds night before but did it this morning as i was trying t give him bottle, and hasn't sicked up meds, so prob back to square 1

oh, no. I'm sorry. hopefully dr will help next week.

Don't b sorry!!!!!!!! am just grateful 4 any help n tips anyone has tbh, at breaking point now, he is STILL not drinking, and wed appointment with paed seems soo far away, my fear is that he can't co-ordinate breathing through nose &drinking from bottle/cup at same time, as wen we got results of Jack's mri 3 weeks ago nearly now, they sed left and right temperal lobes hd malformed in pregnancy....which is obv causing seizures, we were also told they will never stop, altho they will try best t control them, but sed they will continue t b difficult t control and that his memory, sense of smell, and co-ordination will be affected

if it's teething I'd just recommend any of the standard responses to it: give him something cold to bite on (you can buy teething rings, or a metal spoon); try calgel (or similar); try teething powders (can get from most chemists)

good luck

Thanks. Actually bit worried cos seems t b grunting more, his nose sounds bunged up, dr not open today though, he needs nose cleaaring, but dunno if this is why he isn't drinking

Hey, had Jack at nhs24, doctor thinks he has hayfever hence the grubting, sed his nose is blocked and thinks this is why he is not drinking as he cannot breathe thru his nose, I sed t dr first tho did he think it could b hayfever, and he sed he was thinking it ust b4 I sed it, but was he really? have i put words in his mouth?, my dd, 6 has hayfever from around age 1, and I too suffer badly from a young age , as does my sister and dad, but I am not convinced tbh, he sed if it is a cold(as he isnt ruling this out) then it will go away on its own, but gave him piriton fr hayfever, gave him some earlier, still grunting badly and not drinking, feel like I am losing it, need reassurance, can't cope with this....

Go to see your GP as soon as you can on Monday. Antihistamines take a time to work once an allergic reaction has set away, anyhow, but if Jack's behaviour is worrying you so much, then he needs seeing ASAP. If, in the meantime, he shows any signs at all of dehydration, take him to A&E without posting for advice, first.

Hey all, I know I am posting early but Jack had seizure lasting more than an hour at 4.26am, gave him 2 diazepam, still didn't work, he evntually fell asleep, phoned childrens ward and they want him in, explained about his grunting and not drinking, they sed it could b a chest infection or bacterial chest infection, and he may need treated so, gotta go in in a little while, hope he gets sorted out, bn crying my eyes out, so scary n stressful plus dd, nearly 7 got up in middle of it and has bn up ever since, will keep u posted but may not b on again for wee while if he is kept in, hopefully not though

Morning CNJM, sorry to hear about your night. Hope the hospital visit is OK, he'll be in great hands so try not to worry (easier said than done though). Take care.

thanku, just leaving now, one of many hospital stays , hate it

Caitlinnjacksmummy, so sorry to hear about Jack, poor little one.
Hope that you get some answers and Jack gets better. Hospitals are horrible places, but hopefully he will be home soon, and back to his usual self again.
Virtual hugs, for you and Jack, and to your dd.
x

CJmum, what an ordeal, big hugs to you and jack and your DD. I know how horrible hospital is for you but at least he'll be getting the treatment he needs. Thinking of you lots xx

Thanx all, we r home, had t stay in til 4pm t make sure no more seizures as he had had his 2 diazepam, but saw my paed, happened t b on another ward, fate a think, anyway he checked Jack over, gonna increase lamotrigine, to 5mg from 2mg, this has bn gradual, and although he had massive fit this morning he has bn a LOT better since lamotrigine was introduced, he doesnt have any sort of infection and he sees no reason for him not drinking, and so we have t bear it 4 just now, but he says as long as he is getting it some way, which he is and sed whatever I am doing I am doing right, he is putting on weight, round 2Ib, so pleased, and was really really pleased with Jack's progress, he sat hm up and was surprised Jack did not just flop as he did last time, was amazed, sed he is very optimistic now with Jack, and was soo pleased t hear he is crawling now, sed it is big achievement and what is holding him back are the seizures, sed also that wen they gt better controlled then he will come on a LOT more, so I am ecstatic, also sed he is soo proud of me for how I am with Jack, which I was v. touched at, also hspital are gonna try get me respite, some1 t come in t help me every now and then, so Ican spend time with dd, do housework, sleep, watever, overall, gr8 outcome, but want my baby t drink, did suck a lot more today tho, ths morning, not since praying he does it any day

c&jmum, it's good to hear things are sounding more positive!

glad the chat with the paed went well, a pity that the drinking problem is still there though.

Am glad there is some good news and you were allowed home. Hope you have a restful night and the meds do the trick xx