Worried about 22 month old DS development

[SquillosMum]

I am worried about my DS as he doesn't seem to be moving forward very quickly in several areas, mainly speach and eating (which may be linked?). He was seriously ill aged 13 months and spent 3 weeks in intensive care. When he came round he had to relearn everything as he was as floppy as a newborn. Eventually he has and is now pretty much as he should be physically, although still not good at climbing & a bit clumsy. But his speech seems to have ground to a halt. Before he was ill he could say a few words/recognisable sounds (like moo, if he saw a cow, banana and apple) and he could do quite a few baby signs. Now he doesn't do much signing (although I probably don't do as much with him either) and some words he knew are no longer there and he hardly says any new ones (uh-oh, wow, mammy - to both me & dh is about it). He does babble quite a lot and definitely understands things. He doesn't eat much and seems to prefer non-lumpy food, although he's quite happy to chew on breadsticks or a piece of pizza, for example. If he feels like it, he will feed himself, quite messily, but most of the time I am having to gently cajole him into eating.

I worry that he has some lasting damage from his illness and that I should be doing something about his development - any advice welcome.

My ds is 21 months and his speech is quite similar to your ds. He said about 6 words a few months ago and doesn't say them any more - has about 3 now. Eating is very up and down and he is certainly messy with feeding himself which he doesn't do very often.

He has also given up on the signing that he did do although like you I haven't done it for ages either.

Anyway - really just trying to say that your ds is probably very normal and he will start speaking and eating more when he is ready

Have you spoken to your hv about this?
As a general rule, the advice they give on speach is that as long as your boy understands what is said, then dont worry but in the mean time they may refer him to speach therapy as the waiting lists are long and it could take ages to get an appointment.
In the mean time, his speach will probably improve/catch up.
Can i ask why he was in intensive care, what was his illness?
This can have a bearing on cognitive developement.

Thanks for replies. He was in intensive care due to acute liver failure which causes problems with toxins building up in the body, including in the brain. He waited 5 days for an urgent liver transplant which failed so he had a second one 2 days later, followed by further complications meaning that he was sedated & ventilated for 3 weeks.
We go back to clinic every week (still) so the doctors see him regularly, just that they are obviously concentrating on his liver, not everything else. The HV saw him in July, and he was still recovering at that stage, and being fed through a tube, may be I should get them to see him again - I think he'll be due a review soon anyway?

ok so due to the transplant he will not have a fully normal liver function will he, additionally he will be on medication for anti rejection AND he will have been through a traumatic experience of intensive care, been on drugs to sedate him (some of which can linger in the system especially in liver failure as the liver metabolises many of the drugs).
So...if this were you, your body going through all of this trauma, do you not agree that indeed it will take many many many months to recover?
Im just trying to look at this with logic i suppose.
You may have been advised that for an adult it can take upwards of a year to recover from critical illness.
I think that under the circumstances he sound as bright as a little button and will progress in his own sweet time.
HTHxxxxxxxxxxxxxxxxxxx

squillo ive got to pop out now but will check in on this later.
I hope ive not offended you. Sometimes its good to bounce ideas and put a different slant on a subject.
How have you coped with the whole ordeal? I cant even imagine what it must have been like.

I know we can't go back and are very very lucky to have him here at all, but I just can't help wondering what he would have been like if he hadn't had to go through all of that. I'm not normally a worrier but this last year's experience has turned me in to one.
Thanks for your advice, I'll probably talk to the docs at the next clinic appt.

we cross posted, no offence taken. The whole thing just upsets me as I wish it had never happened...can't really change that now and just have to get on with things. I find it very hard to balance being back at work (2 days a week)and feeling like I can do all I need to for my ds - he goes to a lovely childminder, the same one he was with before he was ill. In the ideal world I would quit work, but we have to pay the bills somehow!

your little boy sounds just like mine in the developmental stakes! ds is 21 months... doesn't say very much but babbles away all day in some foreign language... he calls dp mummy (much to dp's disgust) but has very few 'actual' words, but a few made up ones we understand... he feeds himself but is a messy little so and so... not that he eats much anyway, too damn fussy!

agree with donbean, he's been through so much and is gonna take his body a long time to recover from what he's been through.. and you need lots of time too to get over it.. but i hope this reassures you some that he's doing ok... should be coming up for a 2yr development check soon... ask your hv.. in fact i'm suprised you haven't seen a bit more of her considering what you've been through as a family!!

goodluck x

Thanks Sarahlou - I made an official complaint about my HV after my ds was diagnosed as I had been worried about him for weeks before hand, took him to GP about 8 times and rang HV in tears (not my usual self at all) and she did nothing then - I would have expected her to at least offer to come & see him. it was investigated and apparently she didn't do anything wrong. Anyway, the HV I saw afterwards was a different one and I only really saw her because I bumped into her at my friend's house as she was leaving after seeing her new baby. She knew all about my ds and also about the complaint I'd made. I think I said to her that I'd contact them if I had concerns & otherwise to leave it till his next review. So I guess it's up to me to ring them if I feel I need to.

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You poor thing, you and your family have really had it hard, its all of our worst nightmares isn't it. I agree with the others, my DS didn't really speak well til about 2 and he also appeared to go backwards rather than forwards for a while. Now (3yrs) speaking well. Also stopped eating at around 18mnths and only really eating well now, I really worried but think it was just independent streak and seems none the worse for it now. I also agree that you should keep checking any worries with health professionals as you are. Don't feel bad about working, my DS was born with clubfoot and doesn't walk yet, I too keep questioning whether I shouldnt work so that I can try to encourage her walking more. BUT they practise walking at nursery, she loves nursery and at home she has to share me with her bro so still doesn't get all my time. Its about balance isnt it? You sound as if youre coping really well. J

Does he point and show you things of interest? How does he let you know if he wants something? Speech varies wildly at 22 months, but things like pointing (with own index finger) should be in place by then.

Does he have regular checks on his development after his illness etc?

yes, he point/reaches and says/signs "more". Also shouts if he doesn't get what he wants! I suppose I'm being overly concerned & don't really need to worry. He hasn't had any checks on his development since he was ill, just an informal chat with a hv. Maybe the hvs are being a bit slack cos they know all about him...they probably have no experience of this situation though as it's quite rare.

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It sounds like you've had a really stressful time as a new mum - it's hard enough when it goes well. I've hated seeing my DS in hospital this year twice with pneumonia and found it heartbreaking seeing him connected up to drips and injected etc. I can't imagine what it must have been like for you waiting for a transplant. Don't beat yourself up over worrying, it sounds as though you feel like you're quite unsupported by the health care professionals who are supposed to be keeping track of his development with you.

My DS1 has just turned 2 and until a few months ago his regular vocabulary stretched to 'no', 'train' 'car' and 'tractor'! He often said words once or twice and then we wouldn't hear them again for months and we were quite concerned about him. He very suddenly came on and now we're having proper conversations with him. He's also a rubbish climber like yours - tall for his age he's only just managed to climb on/off our bed by himself.

Food-wise he also missed the 'lumps' stage and went straight on to 'proper' solids. My HV says some kids just do that. We've recently introduced lumpy food again and he's eating it happily this time.

It sounds like you might benefit from going to a toddler group or somewhere you can spend time around other people's nearly 2 year old boys. I'm sure seeing them and talking to other mums would reassure you.

I agree with the other posters, considering what he's been through he sounds amazingly well and happy - enjoy him

squillosmum - that's all he "should" be doing at this age- don't worry (eldest son is severely autistic - have analysed the younger 2's development to the minutest detail!)

More's a pita isn't it- ds3 (same age) signs it all the time as well (for biscuits maybe). He doesn't have much speech either but I'm not worried because he points, signs, gestures and generally communicates very well. He's far from passive (has amazing tantrums- but still normal toddler ones over normal toddler things).