What would you do?

[claw3]

Ds5 has Sensory Modulation Disorder. He is unable to regulate his appetite or thirst ie he has days when he doesnt eat/drink or eats/drinks very little, then days when he wants to eat/drink every 5 minutes.

He is also orally defensive (so limited teeth brushing) and has a very limited poor diet.

Chips
Potato waffles
Ready salted crisps
Chocolate spread sandwiches
sweet breakfast cereal (no milk)
Most fruit
Certain cakes, biscuit, sweets etc.

and thats all he has eaten for the last 4.5 years. He is anemic and takes calcium supplements.

Now he is going into hospital this month to have 5 teeth removed because of decay, caused by his diet, medication etc. Dentist is advising me to cut out ALL sweet/sugary food from his diet, which would leave chips, waffles and fruit, (he wont eat bread unless it has choc spread on it). Also telling me to stop him from snacking in between meals (but the days when he snacks every 5 minutes, make up for the days, when he eats nothing)

Dietitian is telling me to only make small changes within his diet, ie he craves sweet stuff, so to try introducing things like custard to broaden his diet.

Im feeling terrible, i want him to broaden his diet, without rotting his teeth and having to go through the ordeal of having teeth pulled out.

What to do? Any suggestions?

[silverfrog]

I think the key thing is that change must always be small and slow (so as not to be noticeable - as much as that is possible. dd1 is ASD, and notices the tiniest things)

so just 5% flour change at a time. would your ds be suspicious if, say, you put one differetn crisp in a bowl of crisps for him? noticing is not a bad thing, but being freaked by it is, obviously.

you say he freaks if any food comes near him - is this because of attempts made in the past to get him to eat? is he ok with other messy play stuff? ie play doh etc? have you tried making gloop for him? (cornflour and water I think - great stuff to lplay with). then small bits of colouring/flavouring (for smell) can be added at a time to build up in non-threatening manner. even bits of chopped up fruits that he likes, like grated apple etc.

I think the basis is to get him playing around with something that he will accept (eg apple - you ssay he likes most fruits) to see it is not a worry at all, and that he doesn't have to eat it - it is just there for playing. if he wants to, he can, but the emphasis is not on that.

then slowly, slowly, move on. keep gradually pushing boundaries. try something liek dropping peas into coloured flour to see the patterns they make. drawing with salt on a piece of black paper (or cornflour). rolling balloons around in oil on tinfoil to see the patterns/noise they make, then maybe using milk or juice one time.

I think the school do a lot of work with herbs - totally non threatening, but give lots of sensory feedback, and once accepted as a smell they are found in lots fo foods, so give an impression of "knowing" a new food iyswim?

they also do a lot of the more traditional stuff like potato printing etc, but extend it - I've had pictures come home painted with bits of onion or garlic, and more than one containing bits of fruit like blueberries or blackberries.

the aim is to get away form only seeing food as a battle ground, and to start seeing it as somethign to be enjoyed as a whole experience.

I'll have a look when I pick dd1 up this afternoon and see what else they suggest.

[r3dh3d]

I've had this sort of clash of professionals - in our case OT and SALT or, indeed, SALT and dietician. Dietician says get the veg in whatever way. SALT says don't mash them; as she's not talking she needs to chew. The only solid vegetable DD1 will chew is a chip. Impasse. [sigh]

Is this a specific SN dentist? If not, are you able to get hold of one? I remember as a child I had my teeth treated with fluoride which given my appalling dental hygiene in those days is probably the only reason I have teeth at all now. ops: I don't know if you've tried that already but I was thinking maybe a dentist with more experience in SN might come up with that sort of suggestion rather than asking for impossible diet changes.

Betty Crocker's chocolate fudge brownie mix is a winner in this house btw, might be worth trying if he likes chocolate? If you add 2 grated courgettes to the mix, it comes out like chocolate cake. The courgettes are completely undetectable. And of course you can add progressively more courgette over time.

NB - this seriously affects its keeping power, so you will then have to eat within 2 or 3 days, unlike the brownies which seem to keep practically forever. But I can be brave and force myself to eat chocolate cake where my children's wellbeing is concerned!

[lingle]

r3dh3d's idea has the added advantage that the fluoride treatment tastes delicious - very very sweet.

[sphil]

DS2 has this issue too - decayed milk teeth because (in his case) of drinking watered down juice between meals. But he takes lots of supplements, which do him good, and has to have these in juice otherwise they taste even more disgusting! So - what to do? Give up the juice and get less supplements into him or go with the tooth decay?

What we've done is to get referred to an SN dentist (ours is called an 'Access Clinic' as they see people with phobias etc too). They are fairly aware of the dietary problems of children with ASD and are keen to work with me to make his diet as good as possible without being unrealistic.
We've restricted between meals juice to as little as possible and always with a snack (usually fruit). We've cut out rice milk before bed, as it contains a lot of sugar (but this means he's getting less calcium now, so again it's a compromise). He has also had his teeth painted with fluoride varnish - it took 6 weeks for him to allow them to paint just one tooth, but they were really patient and just took everything in small steps - so week 1 he just had to sit in the chair, week 2 go up and down, week 3 hold the mirror, week 4 open mouth etc etc.
Soooooo much better than the regular dentist!

Silverfrog - your DD's school sounds fab! All that food play stuff is very creative.

[sphil]

Sorry - meant to say that these are the only things we've been able to do as changing what he actually eats is very very difficult. I can hide veg in things, but something unfamiliar on the plate is a complete no-no.

[claw3]

Silverfrog - He wont eat ANY cakes i make, he used to eat fairy cakes, but because i tried to hide things in them, i suppose he now doesnt trust me and will now only eat French fancies.

I have always been very laid back about eating, even with my older boys who dont have a problem. I have never tried to force him to eat or showed disappointment if he doesnt etc. The fear of food is that it will touch him or get onto his skin. He is tactile defensive too and doesnt like messy play. He is ok about play dough and sand, although he avoids it, he doesnt freak. Its more about anything that makes his hands sticky or leaves a residue on his hands. Corn flour, hand painting etc is a no,no.

For example we will all sit down to eat to dinner, say we have meat, veg, mash and gravy, he has his chips. Now if my plate is too near to him, he will tell me to get it away from him, if i dont he will run away. If one of my older boys spill a bit of gravy from their plate, it has to be wiped up otherwise he will have to get away from it. Or if one of my boys is eating something and offers him a bit ie putting it closer to him, as you do, he will scream and run away.

Thanks that would be helpful, im willing to give anything a try.

[silverfrog]

ooh, I'm off to a SN dentistry talk in a couple of weeks - am hoping there's a clinic nearby I can take dd1 to - she's not been to a dentist since she was 2ish...

sphil, the school may be fab with food play, but this is the same school that won't let me send dd1 in with a lunch she can/will actually eat. they can't cater for gf/cf (and admit it) but won't let me send in suitable food for her either... she is on her first full day there today, so will have to eat something. I took soem pork chop in this morning for her (wheter she wil eat it by lunch time, god only knows, will prob be horrible!)- we have agreed on me taking in meat and her having potatoes/veg from school kitchen as a compromise for now, but I can't see it continuing tbh, it's just not workable.

when she will eat stuff like lentil curry at home, it really makes me that they are prepared to set up food issues in her... (and can't see why she can't have her lentils at school either, hardly a coveted food for most ASD children )

how this can be the same school, i don't know. In a couple of weeks they will have their food talk again, and the first thing they will sya is "don't push the issue. if your dc will ionly eat bixcuits, then feed them biscuits and work up slowly form there. some eating is better than no eating" etc, etc. then they have a blanket ban on all packed lunches and serve the samle old (manky) school dinner to each child regardless of any food issues/sensitivity

[claw3]

R3 - He goes to the community dentist, referred by our family dentist.

He goes every 2 weeks for hour long appointments and she just talks to him, shows him the equipment etc. He has sat in the chair once, until she tilted it backwards and that was it, he wont sit in it.

He wont let her touch his mouth or put anything in it, he just stands up and will open his mouth, but just for a look, nothing else.

Hence he has now been referred to hospital, they are going to put him out and take a proper look, from what she can see at least 5 teeth need to be removed.

I wasnt aware they had sensory dentist, i will google.

and i will certainly give cake making another go, he is very suspicious of my cakes and has refused to eat them, but then again so does DP

[silverfrog]

hmm, yes dd1 used to be extremely tactile defensive (and dd2 is now)

we did a LOT of work on getting her over it, and it is also the best thing that schools have done for her.

have you heard of BIBIC? they are great with alls orts of things, and gave us some really good advcie on dd1's tactile defensiveness and a sensory diet for her. we had to use all sorts of textures/temperatures/sensations onher hands daily (just 5 mins a day) as a programme to help her build up - it was really good at getting her over havign messy hands.

again, I think you start out with non-threatening things like fabrics and dried rice etc, and build up slowly slowly.

I can't recommned BIBIC enough, as they have all sorts of advice on so many different aspects - you get a full assessment rundown, and can speak to dieticians etc there too.

[claw3]

Sphill - Ds wont take any vitamin supplement, he can taste them, no matter how i try to disguise them. He takes iron and calcium supplements hidden in very strong milkshake 3 times a day (i know terrible for teeth, but only way i can milk and medication into him)

Also the calcium supplement is not sugar free, they dont do a sugar free variety.

I have also tried no juice, just water and he simply doesnt drink. I was told to give it time, but after 3 days of drinking absolutely nothing, i back downed and gave blackcurrant juice.

I just wish they would realise that its not just a case of him being stubborn.

[HairyMaclary]

Silverfrog there are 2 good SN dentists in our area, one excellent with lots and lots of ASD knowledge (but I can't remember her name, will see if I can dig it out!) and one that we use who is also very good at talking things through. DS1 was referred through paediatrician so I'm not sure how you could get on their books but they are there.

[claw3]

No Silverfrog, i have never heard of BIBIC, do you need a referral?

My ds has been like this since he could eat, he is now 5.5 years old and its taken me this long to get this far. I have been referred off into all different directions, but no help has been forthcoming.

I have recently made an official complaint about his care and hopefully the ball will start rolling. I have been told an urgent review of his care has been called for and i will now be referred to incontinence service, feeding clinic, sleep clinic, CAHMS and Paed and OT have received a swift kick up the arse to get the ball rolling.

[HairyMaclary]

Dentists name is Selina Master, Clinical Director of Dental Services in this area.

[claw3]

Sorry just googled BIBIC, referral was a daft question!

I have requested an info pack from them. Thank you very much.

[wigglybeezer]

Claw the tesco's strawberry toothpaste has 1400ppm flouride! it is not baby strength. i was really chuffed when i checked the small print on the tube as none of my three like strong mint (and DS3 has decay problems).

[claw3]

Wiggly - Just checked my adult colgate and it has 450ppm, are you sure the child one contains 1400pm? or i am reading the wrong thing on the back of mine!

[wigglybeezer]

At the bottom of the ingredients list it says Flouride 0.32% w/w (1450ppm F), I have also checked the Aquafresh Big Teeth 6+ tube and it has the same amount of flouride in it (three times the price! and too minty). Honestly, DS3 has decay problems and i have done a lot of checking recently, the srawberry flavour has made a big difference to how long he spends brushing his teeth and the amount of toothpaste he uses.

[claw3]

On the back of mine i dont have the percentage. It just states contains sodium monoflurophosphate 1000ppm F, and sodium fluoride 450ppmf.

Im assuming that sodium fluoride is the one that tells me how much fluoride it contains.

But strangely added together it makes 1450ppm, do you have a listing for the other one? Perhaps they have added them together?

Im confused now doesnt take much!

[wigglybeezer]

From looking at the various tubes I have around the house (have tried many!) it seems that 1450ppm is the standard amount of flouride in adult (well over 6's) toothpaste. I have one tube that states 1000ppm monoflourophosphate, i suppose that is the active bioavailable bit of the flouride.
The tesco strawberry icecream toothpaste looks a bit like a kids toothpaste because of the jolly picture on it but it doesn't say children's toothpaste on it and it is definitely adult strength. It is also British Dental Health foundation Approved. think they should send me a few tubes now after that plug.

[claw3]

I chose Colgate cavity protection because it says fluoride with calcium on the front. I honestly didnt realise that strawberry childrens one might contain just the same amount, if this is true, my dentist has mislead me! My ds would much prefer a strawberry one and i would most definitely switch to using it.

Ive just tried to google what brand has the most fluoride in it, no luck im afraid.

Have to pop out to pick my car up from the garage.

[wigglybeezer]

It isn't specifically a children's toothpaste! just a strawberry flavoured one. Most of the other fruity toothpastes have much less flouride in them as they are designed for toddlers. I only found this one after reading all the tubes in tescos in desperation and was pleasantly surprised when i saw the quantities.
i bet your dentist hasn't read all the toothpaste tubes recently! i would buy one, try it and phone your dentist if you need more info.

[claw3]

Wiggly - Yes sorry i did read that in your earlier post, i havent had much sleep!

I bet he hasnt too, most of the time i find MN much more informative and helpful than some of the 'experts'!

I will most definitely give it a try, he hates the minty adult ones, he says they burn his mouth and runs to rinse it off anyway, so minty ones are a bit pointless.

Thank you all for your input, i will get cooking, creative and strawberried

[silverfrog]

ooh, thanks, HairyMaclary. I'll look into getting dd1 on their books.

She was ok-ish when I last took her, but she was only little and the dentist just went for a quick look. Getting someone who understands the potential issues is half the battle, and would cross one thing off the list of everyday things that we should do but don't!

[silverfrog]

claw3, there is also a book called "can't eat, won't eat" which I found a good read when dd1 was having her phase of not eating.

it is ASD related, but gives lots of people's experiences of non-eating children, with some info on what they did to help matters.

[sphil]

Silver - rather a lot of posts between your one about school and this one but . How can they be so hypocritical? Are you brave enough to point out the gaps in their thinking at the food meeting? It beggers belief, it really does.