Weaning baby who can't sit?

[crazycatlady]

My DS, 22 weeks, has no diagnosis yet (being tested for chromosomal and neurological disorders) but among other issues he has very poor muscle development in his trunk and neck. Even when sitting supported his body tends to slump into a c shape and his head goes over to one side.

He will be ready for weaning in a few weeks time I guess and I'm just not sure how to approach it? (I weaned DD (NT) with a mix of puree and finger food). Could I do the same with DS? He can bring his hands to his mouth at least... but he also does slightly unusual mouthing motions with his tongue...

Any advice very gratefully received.

[1980Sport]

I used one of the bouncy type newborn chairs - he was able to lie back but be up right enough to swallow if that makes sense. I set it against a wall so it didn't bounce, he then progressed to a bumbo and eventually a special chair for him which is more to do with his posture he can sit in a normal highchair.

I just did purée because he couldn't manage finger food.

[survivingsummer]

My dd also used to sit like this due to low muscle tone in her trunk. We left weaning as late as possible (over 6 months old) and then used a bouncy chair then a bumbo like 1980Sport.

I pureed for a few months but by 9 months she could manage some lumps, bread and finger foods.

[crazycatlady]

Wish I hadn't sold DD's bumbo! Will get a cheap bouncy chair then. His chair is one of those very reclined ones so no good I don't think.

Thanks so much for the tips. We'll certainly leave weaning for at least another month. He's getting so hungry all of a sudden the breast feeding is getting really frequent and newborn-ish again... hard work. I may introduce some formula in the meantime to give myself a break.

1980 where did you get the special chair?

[Sidge]

My DD2 had profound hypotonia and for a number of reasons (including aspiration) we didn't wean until ?8-9 months I think it was.

We had a Tumbleform chair from the physio/OT which was good for her, and also used a normal bouncy cradle that held her at about 45 degrees. I filled a pair of tights with rice which was great for stabilising her neck and head.

We had to stick with purees for a long time due to her very very low tone. I can't remember when she ate finger/table food but I think she was over 2.

[crazycatlady]

Tights with rice is a great idea sidge!

Did you get any advice from your HV at all? I'm not sure who to ask for support and advice with all this. We won't see his paediatrician again until October and haven't been to baby clinic since DS was 3 months (before we had any concerns) so the local HV teams have no idea about our situation.

[1980Sport]

His chair came from the child development unit he attends. He got a temporary one at about a year which we used for feeding and some OT exercises. At 20 months we started trialling various chairs specifically for him. And he eventually got one at 26 months. He can sit well unaided but he sits with a slouch and nearly on the back of his bottom so this chair keeps him nice and straight. We have an ikea high chair for DS2 and the OT actually said it was a great wee chair and keeps little ones nice and upright but it lacks footrests.

[crazycatlady]

We still have a Bloom Fresco highchair which we used with DD...

Bloom Baby

Do you think I could wean DS in it or would we be better off with the bouncy chair?

[1980Sport]

Did you get an OT/physio referral at your first Paed apt?

[1980Sport]

On the recline I think I could've fed my DS in this.

[crazycatlady]

We got a physio referral but I forgot to ask how long it might take. He's been seeing a physio privately for 9 weeks so I could ask their advice but any kit from them will cost us...

[survivingsummer]

My bouncy chair was quite reclined but I propped it up again the door or wall so she was a bit more upright!

We were offered a special chair by the physio but by the time it came dd didn't need it as she was sitting ok. If your ds is having physio you could ask about one.

[survivingsummer]

Sorry x posted with lots of info you got from others! Good luck with the weaning...

[Sidge]

We had help from the SALT re feeding as we needed quite specialist help. We didn't have a lot to do with the HV (as lovely as she is).

How low is his tone? Does he have any swallowing problems? I'm guessing not if he's breastfeeding. We were told that children with low tone need support for their legs and feet as well as their trunk - the idea being that as they need to consciously "hold" themselves up and so are using muscles to do that when they need to focus on using their muscles for swallowing etc.

[crazycatlady]

Thanks surviving!

Sidge I'm not sure tbh. His physio doesn't think tone is the issue, rather poor muscle development in his upper trunk, potentially as a result of him having torticollis and having been unable to move his head, neck and shoulders as babies normally would. Or it could be because of a condition or disorder as yet unknown.

I don't think he has swallowing difficulties. Hard to say. When he was very newborn he did seem to choke and splutter a lot, but I had a lot of milk!

We haven't yet got a SALT referral. Paediatrician didn't mention this but then I didn't ask either. Is it worth phoning his secretary and getting him to refer?

[Sidge]

Your care all sounds rather fragmented - have they mentioned a multidisciplinary assessment or something like that?

Obviously I don't know your child or his needs but if he has delays in his physical development or queries over his tone then I would be asking for a proper MDA including physio, SALT and OT. Easier said than done though I know!

[1980Sport]

Don't buy anything expensive! I think you could manage with your highchair on recline or a cheap bouncer until you've seen the NHS physio. I'm surprised you haven't had an OT referral too tho. We didn't see our HV either.

Our physio deals with gross motor so she's sorted out standing frame, walking frame, wedges while the OT has done fine motor and sitting! SLT has helped with progressing to beaker and moving to lumpier foods. But to be honest we've worked through the food and drinking stuff ourselves mostly.

[1980Sport]

I agree with sidge!

[crazycatlady]

No mention of MDA yet no. In fact we basically have no care at all at the moment. Physio we sought out privately as our GP referral to the paediatrician was taking so long and we could see DS getting worse and worse... private physio is all he has at the moment. Paediatrician has ordered a load of tests and has written us a referral to neurology and NHS physio, but nothing else yet.

Does this sound right? DS had no obvious problem at birth. It was only at 12 weeks the GP wasn't happy with his progress (after having requested to see him again a month after his 8 week check) and referred us to general paediatrics at St Thomas's.

[Sidge]

Sounds like the GP/paed are on the ball, unfortunately the NHS wheels turn slowly!

Some areas have a Child Development Team headed by a paed who arrange MDAs - could you phone the paed's secretary and ask if that's a possibilty? You could mention that you are planning weaning and would like their input for safety reasons.

IME you tend to have to push a bit to get things done sometimes; as long as you tread the fine line between polite and pushy it can get results

[crazycatlady]

thanks Sidge. I'm stumbling around in the dark a bit here and have no idea what to ask, or even what's reasonable to expect...

I will phone secretary on Monday and have a chat to him/her. I had to politely cajole to get DS's first paed appt as early as we did (9 weeks from GP referral). The St Thomas's booking team always sound so harassed I'm sure they get a lot of rude angry folk on the phone. I'm getting there with the polite-but-pushy tone of voice now I think! I think I've always been too meek before.

[Sidge]

It's hard isn't it? This whole new world.

I seem to have cultivated that polite-but-pushy tone of voice; I am so aware that the secretaries do a hard job and have so much to do but when it boils down to it I am my daughter's advocate so I have to push on her behalf.

[1980Sport]

I went to GP at 6 months and was told referral to Paed would take at least 3-4 months so we seen a private Paed who referred us to the local child development unit where we seen the multiple disciplinary team - developmental Paed, OT, physio, SLT that was at 11 months. So it took 5 months from initial GP apt before we seen anyone in the NHS and started getting actual help.

[crazycatlady]

Thanks 1980, good to know what to expect. Seems like we're not doing badly so far then having had first paed appt 9 weeks from GP referral...

At least we have the private physio to keep us going until we get further with the NHS system. DS has made real progress and without the physio I dread to think where we'd be at. He can now lift his head when lying on his tummy, and if I prop him on his elbows he will stay there for a minute or so. He can now also face forward and to the left, whereas before he was permanently facing right. He brings his hands to midline, plays with toys now and brings them to his mouth. This is HUGE progress for him! He was just lying there on the floor with no ability to do anything or interest in playing with anything when we first took him to physio at 13 weeks. All he could do was look about a bit and smile! I'm so proud of him.

A whole new world absolutely sidge. I'm just learning how to negotiate it all. Without MN it would be a whole lot harder!

[1980Sport]

That's great that he's making progress! We were the same with DS each little step was such a massive achievement! I think the first time he rolled - I cried all day! (with joy)

We certainly felt like we were left floundering for a few months. I ordered a great DVD called baby builders from
the US which is probably all the exercises your physio is showing you.

[starfishmummy]

Ds's disabilities meant that a bouncy chair didnt work for him so until we (eventually) got a specialist chair for ds we used a bean bag - got it from argos, it was a biggish one - probably teenager size iyswim (but fairly cheap). We just pushed it into shape with a seat bit and then raised behind him to support his neck and head, it also came round the sides of his head a bit and stopped him falling sideways (easier to do than to describe).