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Having trouble feeding my spastic quadriplegic 2 year old little boy, help?(34 Posts)
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.
Madwoman.and dev...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
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 . 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
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?
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.
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.
Oh, gosh. That's a worry. 23 weeks! How far did she get with dgs? Are they monitoring properly? V stressful time x
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!
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. 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.
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!
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??
That cup is ace, sneeze. Not seen it before. Is it really made out of the recycled honey containers? It is exactly the same!!
I have to say it was thickening regular food that was the answer for dd2 as well. She still can't cope with food of two different consistencies! Definitely a no lumps kid! (But she'll have a good attempt at ribs, lol)
Dd2 has four titanium caps on her molars. she has them fitted a couple of years ago - same thing. They did them two at a time, and we called them her 'princess teeth' as they were so shiny and silver... <whistles innocently> fortunately her front teeth seem fine - I guess we can get to those!! (She brushes herself now - electric toothbrush, obviously. It's always been the only way we can hope to attempt a clean!! Dentist today, and all good. )
DGS has just turned 4. He is also very cute He had major fits in the first week of life but came home on no meds at 3 weeks. Then developed one second vacant episodes from 6-10 months (he was desperately anaemic though which couldnt have helped). They werent medicated and stopped spontaneously. Also no reflux meds. He's had major ongoing issues with vomiting but no pain as such so we were never convinced it was simple reflux. He has never had swallowing issues, no aspirating, can suck easily from a straw (not blow though ) and has ended up with a PEG! (a feeding tube into his stomach). It was because he would just not be interested in eating and was being almost force fed by mum and just not gaining any weight. Real tearing hair out anxiety. With the PEG he put on weight immediately but has recently started obvious reflux with the formulas and puking load. Anyway we have taken advice from MN experts and now blend all normal food and amazingly it stays down despite far greater amounts! Thickening it is the secret, but why use formula when food is healthier, so we're sticking to BD! We were looking into medicating him but have found the perfect answer so no need!
Have heard of plenty of children who come off siezure medication but they do take it very slowly. Children are more likely to outgrow epilepsy than adults who have late onset epilepsy.
We still use a tommee tippee cup as it free flows as madwoman says. There is a bear bottle with a built in straw which is good and DGS uses it from time to time and looks at us like this "And..."??
We are currently fattening him up for Christmas after yet another nursery tummy bug. Oh and he only has his 4 molars as the others were taken out for enamel hypoplasia that doesnt exactly help eating or speech but he happily munches on cheesy wotsits, kit kat and crisps. No idea what his tongue does though! Quavers are just as good as wotsits but we have to aim it to the back of his remaining teeth and he cant be bothered to feed himself which is frustrating as he could. He feeds us instead
honey bear feeding cup with straw
Dd2 was only them early (phenobarbitone) and they were stopped before first birthday. We spent the first couple of years on different refluxy type stuff, but tbh it was mostly due to low core tone and general muscle laxity. The most successful thing was just infant gaviscon, lol. Nowt else seemed to have any effect. Her swallow was quite weak, and she had issues with aspiration, so in the end we gave up. Thickening the food more seemed to have a far better effect. Fluids were always completely pants. She hasn't needed anything since about 3 (she sill had a lot of feeding issues, but none requiring medication).
Bottles etc - we switched to a soft sippy cup that didn't require a suck, iyswim. Tommee Tippee used to do one, no idea what's about now! She amazed everyone by being able to use a straw around 4 or 5 though!! She had a lidded cup from around 4 (it wasn't great for around a year as of course if she flailed it would spill, and it had a tendency to spray stuff en route to somewhere in the vicinity of her mouth. So it was a messy year, but she did get there eventually).
We finally got dd2 off purees using quavers btw. I was convinced that the SLT was barking mad, but she was right. So somewhere around two we started introducing that sort of bite and dissolve quaver type thing.
Have you heard of new-vis.com? The 'feed your mind' sections were really useful when I was struggling with feeding dd2. It's run by a specialist feeding slt. Worth their weight in gold if you can find one. Ours saved my sanity for two long years.
I have so many questions.......
How old is your DGS? My DS is 2 yrs. old and he eats 3 pureed meals and has 2 bottles a day. Eventually it won't be very acceptable to be drinking from a bottle. What comes next? I can''t imagine him being able to use a sippy cup but I don't know.
The book you recommended sounds wonderful, I'm going to order it asap!
Anyone out there have a child who was on seizure or gerd medications, that were eventually able to get off of them or do they usually need them for good?
DGS does to hinged in the middle thing still He drops forward after a while and then his knees fold! We think its to do with his weak trunk but also not being able to isolate his movements. Something very difficult with CP children who are affected in all 4 limbs. They have difficulty 'connecting' with their whole bodies. Its complicated to explain because they should be able to say to the legs (on an unconscious level) 'you stay still and support me now and I will concentrate of moving my right arm'! Its also balance, proprioception and other strange factors. Its overcomable but needs hard work. Congratulations on how well your DS is doing. Everything so easy to NT babies is a hard fought but ultimately sweeter victory for CP children.
This book here is absolutely brilliant. If you buy nothing else get this!
Honestly, I am not impressed with the long line of PT, OT, SLT and Special Ed. people that come to my house. I am the one who has to tell them what I think my DS needs!! I find out more important information here than I do with all of them put together. They just don't seem to know what to do with a 2 yr. old spastic quadriplegic baby. I don't mean to be harsh, but it gets frustrating sometimes. I feel like time is on our side right now for learning verbal skills and motor skills, because from everything I have read, the 1st five years are critical for the development of these things.
I'm going to look into the lateral movement of his tongue to see if he also has that problem. I know his tongue tends to push foods back out. He is starting to eat things like yogurt bites, which are hard to the first bite, but then dissolve very quickly. He is so proud of himself when he bites into them and "chews" like a "big" boy!
He does have a gait trainer and is doing very well walking all around in it, even though he doesn't have the ability to steer it yet. You can tell he is so happy to move around on his own. When he is playing with us and jumping up and down on my lap, he can stand upright for just a second or two, but then he quickly drops right over as if he was hinged in the middle. Puzzling to me.
Madwomen, he is adorable. I can hardly stop looking at him, he is so adorable! He is so clever. Recently he has started to try and play "scare" me. He will put his head down and after a short time he quickly lifts his head and we both shriek with fright. Everything about him is just amazing. <3
Soon as I have time I'm going to look for that cp support group. So thankful you're all there!
Mm, on the feeding side, has slt given you any exercises to do pre-feeding? We used to do 'wake up' facial tapping, just to get the oromotor muscles stimulated and ready for action...
<and I remember well the poking in the face stage... Trying to get her to bend her arm enough to find her mouth was soooooo hard. >
Trial and error is where it's at. None of our kids are identical, so it's more of a 'oo, that sounds a bit similar to x, have you tried y?'
And don't feel overwhelmed. There are bags of us around. Did you manage to find the cp specific support thread?
Ooh, cross post.
We had to thicken everything for dd2. We didn't find out until she was, um, 3 or even 4, that she has no lateral tongue movement (you would have thought the slt might have noticed in the preceding 3 years, but no), so essentially she couldn't use her tongue to form a bolus. Added to which, her swallow was always pretty pants (she was born with no gag or swallow reflex after the hypoxia, so was tube fed to start with). Fluids were a freaking nightmare. I spent more time crying in the gp's office because I couldn't feed her than any same person. They just used to ship me to the hospital. so, we thickened food hugely - it gave her at least something to work with - she has/ had? Very reduced sensation around and in her mouth, so even later when she was helping to self feed, she would overstuff hugely. She had real issues with knowing how much food was in her mouth and what to do with it!!
We spent a long time placing food deliberately between her teeth in the corners of her mouth, so that she could practice chewing. Do you have a good feeding slt? Get them to do a joint assessment with the OT at home, at a meal time, so that they can advise on a suitable chair.
The holding two hands with one and scooping with the other does take a bit of work.
Just keep plenty of face cloths handy!!
That stander sounds completely crap... Ours didn't have a table, but it did have a base. We used to position next to Thomas the tank engine table that was the right height, and run distraction. At nursery they used it for all of the standing activities once she was stronger. The rest of the time they put her in her chair with the tray table and everyone else used her table for the activity as well. . I would go back and tell them to have another rootle in the stock cupboard...
He sounds adorable. As long as you don't think he's in pain at night, I think I'd stick with being as reassuring and close as possible if it's working. Hopefully he will become more confident and relax on his own space and not need you so much during the silent hours in good time!
don't hold your breath about being able to relax muscles on command you should see me trying to persuade dd2 to relax her arms/ hands/ fingers when I want to cut her nails... . And her toes, feet and ankles for her toenails.
I must sound like a fruit loop 'relax, relax, like a rag doll, go all floppy, relax, RELAX!' So I still use distraction now to get her to forget I'm about to chop her fingers off. It's the only way.
And, and (not a problem either of you ladies are likely to have) imagine trying to get her to control and relax her facial muscles to get a full face load of slap on for a ballet recital. I drew the line at false eyelashes. There was literally no way to do it. And I have to leave lipstick until the last minute, and then dab wildly whilst she twitches... She is so excited and desperate to get make up on like all the other girls, but she literally can't relax her face enough for me to do it.
Did I know you'd got a re-dx, sneeze? I know it was likely, and we'd talked about dd2 and presentation and whatnot, but can't remember reading that it had definitely been changed... I probably had a long convo with you about it. Sorry! How funny. Little twins.
Wow, so much wonderful information. Thank you all so much! Madwomen, we just got a stander for him but it is horrible. It takes 2 people a lot of effort to get him in it and then you have to hold it the whole time because there isn't a base. It doesn't even have a tray table. So, we need to address that. Thank you also for bringing to my attention the use of my little boy's name. I have asked for it to be removed. I'm new at this.
I will ask his doctor's about the use of botox and baclofen. I have heard they may be able to relax his muscles so that he will be able to use them more.
My instinct on the sleeping is to give him what he seems to need, which is the comfort of knowing I'm right there. I think he will eventually sleep longer and longer on his own when he feels more secure. (I hope I will try putting a weighted blanket on him though. That was a good suggestion. I don't think he is having spasms or anything like that. I just think he wants to be snuggled close by.
I checked out the giraffe chair and I think you are right. It might be time to move out of the tumble form chair and into something better suited for him.
The only problem with a more upright position for feeding, is that gravity works against him. The food doesn't stay in his mouth as well. He still has to have his baby foods thickened to be able to eat. I may just need to thicken a little more.
Today I tried a couple of your suggestions, 1st to gently hold his arms down while feeding and the other to give him a spoon to try to feed himself (hand over hand). The 1st went better but it was a bit awkward to hold down his arms whilst spooning his food and holding the bowl. Haha! But it was better than him holding his spoon because he was trying so hard to get that spoon to his mouth that he kept poking himself in the face.
I can see that trial and error is going to be the way of it for a while. It really helps to know that you all have gone through the same difficulties and the children have done so well.
Thanks again for all your support!
nelli. My DGS is similarish to madwomans DD. Initially spastic quad now at 4 athetoid! Also rubbish fine motor skills and the arms are worse than the legs. No contractures, tightness, botox or baclofen here! More like pinnochio with the strings cut
Madwoman is spot on and helped us in the beginning as she had travelled the path sooner! re Tumbleform chair. Personally they have their uses but not I've read for functional use of the hands. Try to sit in a chair tilted at the same angle and use your arms - dreadful! Gravity is against you and the leaning back position doesnt allow for the trunk to strengthen, and nearly all CP children have some degree of weak trunks. We just used a normal fisher price high chair until his legs dangled too long and OT sorted out a proper chair for us.
Yes the harder they try to do something hand wise the harder it is DGS looks like a bow being pulled out further the more he reaches forward with effort. Try telling a 4 year old to relax! If he does it all works but he cant do it if he gets excited. Good news is as the older they get the more you can explain and they use their brains to overcome the extension pattern, more than the mixed up signals they currently get.
DGS had a horrific birth and was a nightmare sleeper, co slept with DD, sometimes hysterical night crying DD is an attachment parent - did the sling, co sleeping, bfeeding etc (not from philosophy but necessity!). Now she puts him in his bed, kiss goodnight and he's asleep! He still wakes some nights and she brings him in with her and he usually goes off again til 7.00ish. Sleep Solutions (via Scope I think) maybe be able to advise you, but DD just thought the little mite had gone through so much in his young life that he could take as long as he liked to feel comfortable with sleeping on his own. He is on melatonin but frankly I dont think it made much difference except in the short term, but the paed will advise on it.
As an ex co sleeper myself with my brats I would just do what your instinct says is right. If you think he is uncomfortable and frightened snugggle him up with you and just sleep yourself, you wont harm him if he's a good sized 2 year old
<racking my brains to work out what else we had going on at the not yet sitting stage - has he been assessed for any sort of standing frame yet?>
I think you need a different chair for feeding - we used a tumble form when dd2 was tiny, but changed to a jinx giraffe around the same age as your wee man (you mentioned his name by the way, so you may want to message mnhq and aske them to remove it from your post, esp as a foster child?). The jinx was a little more upright (I know you can tilt and angle the tumbleform but in my opinion the jenx chairs allow an easier position for feeding bigger (not) toddlers. There are loads of different chairs, and depending on his specific requirements, the OT should be able to suggest something a little more age appropriate.
I found that the tumbleform exacerbated dd2's extension patterns and it wasn't great for her posturally (it was great when she was tiny, but by two she needed something else.). The jenx giraffe (there are loads in the range) has a table attachment too - also great if you are trying to get him involved, for sensory reasons or dissection or whatever!
The movement getting harder with effort is very common. Dd2 had intention tightening, and often, as her movements were getting more purposeful and she was fighting to control it, she would make very repetitive uncoordinated swings and attempts. it's very difficult as the harder they try to do something, the more difficult it is! She also went through a phase of mirrored movement, where she would try to do something with one hand and the other one would mirror the movement - this got tricky with feeding too! V messy!
When is his next OT appointment? I would definitely ask for a new assessment for a feeding chair. The tumbleform will be great for him learning to feed himself (or supported) with a bottle, but I think for 'meals' he might need something else.
Re the sleep - do you know why he is waking? Do you think he is suffering from painful spasms? Wanting to change position but unable to settle? Or genuinely suffering from a need for company, possibly due to some attachment issues or difficulties associated with any previous placements?
Sometimes children with very limited movement do benefit from a sleep system - it might be worth asking your OT or physio if they think he would be a candidate, and ask their advice. Dd2 still benefitted from being almost swaddled at that age - she needed to feel very secure or her Moro reflex would kick in - she even felt unsafe lying flat on her back if she wasn't able to feel some pressure on her limbs. We used a grobag (just a light one) and a further blanket. As an aside I have also know children with cp who benefit from a slighted weighted blanket, but again, discuss with OT.
If you think he might be waking from muscle spasms or pain, then it might be worth chatting to the gp or his paed. Has he ever had baclofen or similar? Likely to be a candidate for Botox on the future? He's a bit little, but it depends how certain you can be about the cause!
Later on, some children do get a melatonin prescription, but I think you are probably a long way off that.
The other thing I will mention, as it exactly the age where we had it with dd2, is bog standard night terrors. for six months, she screamed the house down during the night, every night. And then they went away. We went through the whole checklist of every plausible sn complaint, and it turned out to be a completely NT issue. it's so easy to assume that everything is connected to the disability, but sometimes, just sometimes, it isn't.
Night terrors are the pits. I would just grit your teeth and try to stay sane, if that seems likely. at two, we had no idea what was going in her head, and it seemed v likely that she would have a learning disability etc. it hadn't occurred to us that internally she was following a fairly normal development curve and so was hitting the 'beginning of imagination' and this was causing nightmares and all sorts... Hindsight is a wonderful thing.
Dd2 was a little ahead of your wee man. She finally got rid of her walking frame after yr r. In yr r she was verbal, but it was really hard work for anyone to understand her speech because of her dysarthria, so she was statemented for communication primarily. These days (for the love of god) she manages to convince the teachers to let her join the school choir. It's a tragedy. I'm all for inclusion, but there should be a limit. she loves to sing, but it is largely monotone, and she has little to no volume control <weeps silently>. In all seriousness, I'm very proud of her, but we aren't going to be seeing her on X factor any time soon! At school concerts I never quite know whether to laugh or cry! Her nursery worker learned makaton, and I do believe that this really gave her the impetus to communicate. Her gross and fine motor was so impaired that this seemed a bizarre thing for st to choose, but we had been through Big Mac and little Mac, and it seemed plausible, so we have it a go. It was a long time before she tried it herself, and it took longer for us to be able to grasp her approximations of the signs, but there are all sorts of methods that might work out.
What are SLT suggesting you use to communicate currently? Is he able to gesticulate for PECs or similar?
I do talk a lot. Sorry!
Do check out our cp support thread, by the way. Lots of mums with littlies on there too! It's somewhere on the sn children board, I will try and bump it...
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