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

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