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Having trouble feeding my spastic quadriplegic 2 year old little boy, help?

(34 Posts)
nelliebell Sun 02-Dec-12 01:15:19

Hi, I'm new to this forum. I am in the process of adopting my foster baby. He has spastic quadriplegic cerebral palsy and I'm having a lot of trouble feeding him lately because he is constantly throwing his arms about and knocking the spoon and bowl from my hands. It's becoming so frustrating because I know he wants to be fed so I'm pretty sure he is doing it involuntarily. He is not verbal, but is very, very bright. Any suggestions will be greatly appreciated.

sneezecakesmum Fri 07-Dec-12 20:17:43

The bear is brilliant. the lightest squeeze eases the fluid up the straw so the suck can be the lightest ever and be rewarded. Mind you DGS ended up wearing the liquid til we got used to it. Dont think its recycled but DH (who keeps bees) did have some bear pots that looked the same. So maybe yes?

Did not realise your DD also had rubbish enamel. The dentist at the dental hospital said it was breastfeeding rotted the enamel despite our dentist getting it right. eejit so maybe his 4 1/2 lb birthweight was due to DD not eating enough instead of the rubbish placenta? We hope the second set come in OK as these molars are healthy looking and I guess they were more formed after birth and the others before??

sneezecakesmum Fri 07-Dec-12 20:32:04

btw have got a SPIO vest from USA SPIO vest
and DGS seems much more secure and sits far better. Its not like a corset, just gives sensory input so he knows where his trunk is. Early days but I am really hopeful. Feel so sorry for him sometimes - he looks like a man on a tightrope who hasnt got any safety equipment!

madwomanintheattic Fri 07-Dec-12 20:47:46

Yes - saw the vest thing before, looks good. Proprioception definitely a struggle!

I find the teeth thing quite hard to work out tbh. In theory, the 'before' birth stuff shouldn't have any effect on dd2, as it was the birth that broke her <sigh>, and what with being a 9lber, there were no issues with the placenta!! I fussed about it for ages, as nothing quite added up, but have kind of given up worrying about it. (We were coincidentally living in an area without fluoridation. Again, brain-ache. And one dentist will tell you one thing, and another the opposite. We had the same thing with eyes though - the first opth/opt team claimed that her squint was nothing to do with her cp at all, oh no. Um, right. Purely coincidental then. grin Everyone since has just rolled their eyes and said 'duh, of course it is')

Given that the squint surgery (v late at almost 8) was successful, and her adult teeth look fine, I've crossed them off the 'things to stress about' list. grin

sneezecakesmum Sat 08-Dec-12 12:48:49

How odd with the teeth? Doesn't make sense to me either though DGS it does. Loads of CP children have squints, it's really common with them. Weird dr! It's not on our 'worry' list at least!

What's on our worry list is DD is now 23 weeks pg and just been exposed to CMV. She has no antibodies to it. It's only as we know a little boy who was severely affected by it that we are worrying so much. It's so rare and the risk s very low (have been googling) ! but it's just a worry as she's got a sore throat now. Probably a cold and she will get tested in a week or so. Bugger bugger bugger. Not a nice few months until the babe is born, not going to bother again!

madwomanintheattic Sun 09-Dec-12 18:30:54

Oh, gosh. That's a worry. 23 weeks! How far did she get with dgs? Are they monitoring properly? V stressful time x

Dev9aug Sun 09-Dec-12 20:40:53

sneezecakesmum Hope it is nothing to worry about. I do remember the worries during ds2 pregnancy and I wouldn't wish it on anyone. Best wishes.

nelliebell Mon 10-Dec-12 03:48:35

All of your experiences are invaluable. Are your children all verbal and at what age did they begin to say words?

My DS has learned how to say "Hi". It took a long time and a lot of practice but he can say it with some effort .He babbles with the g and d sounds but not many more. Are there any oral exercises that we can practice with him that would help him to make sounds? Our speech therapist doesn't work on verbal speech with him, only playing with an i-pad.

Thanks Again,

madwomanintheattic Mon 10-Dec-12 14:54:02

We were told dd2 was unlikely to be verbal due to her oromotor issues, so we had a Big Mac/ little Mac when she was tiny (to get the idea of reciprocal communication) and then she was started on makaton. (I found the idea of makaton hilarious, as her fine motor was abysmal, so it was impossible to work out what she was 'saying'). She didn't sign for a long time, but then would use it to join in songs and communicate for snack at nursery. The makaton seemed to give her the impetus to communicate.

She started to speak about 3, 3 1/2, but was v dysarthric. She was statemented for communication, and a few times school called me as she had got herself upset and no one could understand her - mostly it was about working out the context and guessing until you got it right!! She's 9 now and v clear (well, in comparison!) she is able to self correct (swallow, use her lips) to improve clarity if someone doesn't understand. We do still get the odd comment from school that they find it hard to understand her at times, but she has been discharged from slt - essentially, she is now as clear as it is likely that she will get, as the issue is neuro-based. So any further issues are for school to cope with, not for dd2 to try to improve iyswim...

There are tons of slt exercises... All of the licking, blowing, to mouth aerobics etc. once dd2 was speaking, we used the Nuffield verbal dyspraxia programme from around 4yo.

At 2, it's about finding a communication method that works, that can hopefully be transferred to nursery/ school in time. Does he have a specific iPad app for comms?

sneezecakesmum Mon 10-Dec-12 21:39:25

Madwoman.and dev...thanks thanks DD now 24 weeks. She will get retested in a few weeks to make sure she has no active infection, but it is unlikely and she will take lots of care especially if DGS gets a nursery bug. She feels less anxious now as worst case scenario it's about a 1-100 risk of significant disability IF she catches it. I know we are both being neurotic so we have calmed down a bit smile

DGS 4 still not verbal but says a variety of sounds with lots of g s! Can't really understand why he spoke several words quite clearly at 15 months then lost it all. He also sat better then confused. We have seen a few signs of speech recently and we try to get him to copy sounds but he just tuts at us! He loves the Lingo show on cbeebies and makes an attempt at mandarin/Spanish and French! They say 'you say rouge!' etc and he sys some gobbledygook. NO idea what that's all about! He uses my ipad to play games, we try the odd bit of make ton, but speech has Taken a back seat to mobility unfortunately. He has SLT and she is v impressed with his receptive language. It's so difficult to use pictures to actually communicate except for simple choices. Tbh all we do is hold up our left hand and say this is chugging ton and this is Thomas with our right hand. Then ask him to point to his favourite hand....he gets that but we could probably do with a few additional hands grin

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