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What would you do?

(54 Posts)
claw3 Tue 08-Sep-09 13:03:33

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.

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?

Seuss Tue 08-Sep-09 13:24:03

If it were my ds ( who does have a limited diet but just about covers the food groups and doesn't object too much to teeth cleaning) I would err more on the side of the dietician and would be reluctant to cut anything from his diet - apart from maybe sweets. Do you have access to a community nurse, or similar, who might have stratagies to help increase his tolerance for brushing?

claw3 Tue 08-Sep-09 13:44:56

Hi Seuss, he is supposed to be having OT who is supposed to be desensitising him. This hasnt materialised yet and he hasnt had any treatment, im currently chasing this up. I also have a referral to a feeding clinic, which should be through soon.

To be honest, if he has been having a few 'non eating' days, im probably the only mum in history, who is glad that her son has accepted a sweet and eaten it!

The teeth that he will be having removed are 'baby' ones, but im so worried that if i cant make changes, this will affect his 'big' teeth.

The dentist advises me the tooth decay is mainly due to his diet and the snacking. But i feel helpless. I know exactly what is causing it, but there seems to be little i can do to change it

Seuss Tue 08-Sep-09 14:02:59

Trust me you are not alone - DH and I were stupidly happy when ds1 ate a McDonalds chicken nugget!

Your ds is still young and you are getting changes underway- with the OT and the feeding clinic - so I wouldn't panic about the dentist. I'd wait until you've managed to add foods/regulate his meal times a bit more before removing anything - just my opinion though. (my ds has chocolate ready-brek with a bucket of sugar on though, so may not be best person to advise???)

claw3 Tue 08-Sep-09 14:16:07

Oh i would be excited about a chicken nugget too!

Just feeling a bit frustrated today i suppose, looking for a 'magic' fix that i know doesnt exist!

Does your ds have sensory issues?

Seuss Tue 08-Sep-09 14:35:23

It's hard knowing things take time, have found that most things have improved with age though (my ds is 9 now)so there is hope. Ds does have a few sensory issues but nothing too debilitating but just a bit hard to explain to your average parent! (likes to bounce off things to test boundaries/ jumper on when boiling hot, then t-shirt when freezing cold/addicted to salty things like marmite and pringles)

Hope the OT/feeding clinic helps - fingers crossed!

jasdox Tue 08-Sep-09 14:45:49

probably not much use but, my nephew has a v. poor diet, again mainly crisps, cakes, burgers, no fruit, chips: Over the years we have tried various things

Muffins with hidden veg in (turned into a puree - carrot is sweet, even used little bits of broccoli, peas etc), courgette is fairly common in choc cakes, carrot and orange cake. When we make cakes/bread always sub flour with about 5% quinioa flour (full of amino acids and proteins) can be bought from health shops.
Make veg crisps (about 10mm think (shrink alot)160C oven, dip in olive oil, salt and cook till crispy, sometimes up to an hour -beetroot, parsnip, sweet pot). make sweet pot wedges.
made bread sticks with cheese snicked in - dip in choc spread, maybe.

truffles - 50galmond/8dates/2tsp carob and lime juice, whizz together, add lime juice if required till mouldable, can cover in choc.
dried apricot (meant to a bit of iron) dip in choc

I drink spa tone add it to orange juice, as I am a bit anemic.

claw3 Tue 08-Sep-09 14:47:39

Seuss ds seems to be getting a lot worse the older he gets. I suppose this could be because he hasnt received any treatment yet.

Thank you for your support and yes finger crossed

claw3 Tue 08-Sep-09 14:53:23

Jas - Thanks for the suggestions, will certainly give some of them a try.

Seuss Tue 08-Sep-09 15:42:49

jasdox - didn't know about quinioa flour, good to know as I'm quite a fan of 'hiding' stuff in ds' food. Choc spread is quite good at helping foods go down - but not much good from the dentistry perspective! Hiding things in gravy is our other great stand-by - ds will eat most veg if smothered enough.

carrieonly Tue 08-Sep-09 16:04:47

claw3, do you have any links to more info about Sensory Modulation Disorder? ds can be obsessive about food and seems to have a huge appetite.

tibni Tue 08-Sep-09 16:12:46

ds (ASD) also has sensory dysfunction. Teeth brushing has always been a problem but we are making inroads.

We always use a countdown system 10 - 0 then orally announce "finish" so there is a clear start and end. Much to our surprise he prefers an electric toothbrush!

Diet was v restricted until he changed to a school where he had to have school dinners and he has to stay with his class until everyone has finished their food. Initially he was just eating dry bread and apple but after a few weeks he began to try new food and foods that he would gag at (mash) he now will eat small portions of.

OT suggested things like frozen ice pops, fizzy water for sensory feedback and desensitisation. Watching him try spacedust the first time was very funny (cruel mum i know).

DS is now 8 and it has taken a long time to get to this stage and we have bought every possible brand of food and toothpaste getting here!

My instinct is to follow the dietician and follow up OT help.

Hope your everything goes ok with your little ones visit to hospital

wigglybeezer Tue 08-Sep-09 18:33:17

What about sugar free gum, its supposed to be good for protecting teeth in between meals.

Tesco's strawberry icecream toothpaste is good.

Those rubbery toothbrush that slip over the end of your finger (for babies i think) might be good to use to get him used to things in his mouth.

don't be to scared of trying stuff out, most of the things OT's tell you to do are simple common sense things.

claw3 Wed 09-Sep-09 08:09:51

Morning Carrieonly - SMD is a sub type of Sensory Processing Disorder.

I found this site useful, link below is a checklist and site contains lots of other info too.

claw3 Wed 09-Sep-09 08:18:51

Tibni - I did think about school dinners when he started school in January. Im not sure he could handle it. He is also fearful of others peoples food being near him or touching him, any food that is not on his OK list, he will get hysterical if it goes near him. School dinners are definitely something i would consider in the future once he has overcome his fear of food.

Teeth brushing i get about a 2 second time slot in which he will let me brush his teeth. He finds it very painful and having a mouthful of decayed teeth doesnt help. He also grinds his teeth, so all the nerves are exposed, but i will give the count down a try and see if that helps.

LOL @ spacedust.

Is good to hear that you have made good progress and that there is light at the end of the tunnel.

thank you x

claw3 Wed 09-Sep-09 08:23:11

Wiggly - Yes sugarfree gum he will tolerate and he does chew this after meals.

Dentist has advised us to use adult toothpaste and told us the most important thing is to get a layer of toothpaste onto the teeth, so i do sometimes use my finger. Tooth brushes always go 'missing' in this house, he hides them!!

Thank you for ideas x

bubblagirl Wed 09-Sep-09 08:26:01

hi claw good to see your on here still

i know you probably have tried everything in the book but my friend has fussy eater not so much sensory so not sure if it will work but she was advised to play games with food small amounts out at a time and had to taste and play

im not sure how his would go with your ds because of the sensory aspect but of a weekend at lunch time she would set different foods up and tell him about each food and make stories up such as sponge bob would have some of this and would give him lots of energy shall we try some then just get small amount and try it

i guess anything is worth a try or just look at his diet and see what changes you can make are chips fried or oven chips? could you get the plain crisps that you add the salt to and just add less salt
will he eat fish fingers as you can get omega 3 fish fingers ds loves them or look up high iron foods and see if you can add some in under disguise

i know you have probably tried it all but i guess once big teeth come in and for his benefit you need try but i know plenty of kids who live off certain foods and are ok

we use boots tonic vitamin not sure if you use this already but can be disguised if need be

my ds is another who doesnt like to brush teeth we have got to a compromise of 5 times on front back sides of teeth and all done its a start

bubblagirl Wed 09-Sep-09 08:28:11

what does he drink? can you get drinks with added something in most just taste like juice now so could be easier to do it this way

bubblagirl Wed 09-Sep-09 08:28:58

will he eat any meat or fish at all?

lingle Wed 09-Sep-09 09:04:03

Sounds hard.

I guess the dentist is telling you how it should be. Whereas the dietician is telling you how is actually is. Small steps and all that.

I think dentists say that bedtime snacking is the worst of the worst - even more so if you brush you teeth straight after a snack. Could you work on avoiding bedtime snacks?

claw3 Wed 09-Sep-09 10:01:57

Morning Bubblagirl - oh yes im still here, MN is my life line, its so helpful to know ds isnt the only one, without it id go insane!

No he doesnt eat any meat or fish, the list i gave is it. He did eat a mini sausage roll once, when he was about 2!

The chips are oven chips and they have to have salt on otherwise he wont eat, i do try to get away with as less as i possibly can.

I think as well as the sensory issues, we have a food phobia going on as well. He is literally scared of food, he gets hysterical if i even put food near him. Perhaps i could do the food game you mention with pictures of food?

kreecherlivesupstairs Wed 09-Sep-09 10:10:41

For the tooth decay would he accept a fluoride mouthwash?

claw3 Wed 09-Sep-09 10:17:21

Lingle - You have hit the nail on the head, the dentist looks at me in disgust, you know what this is doing to your child, yet you continue! Ive tried explaining, but he just doesnt get it.

The dietitian is much more sympathetic, but she doesnt really get it either ie her report stated that now i am more aware that sugary foods cause tooth decay, i will make the necessary changes!! head, wall and doh spring to mind.

Avoiding bedtime snacks is really difficult, because he cannot regulate his appetite, he often goes all day without eating or drinking anything, then come 8pm for example he wants to eat and drink every 5 minutes.

He doesnt go to sleep until about 3am every night (he cant regulate any of his internal senses either, he is NEVER tired) and evenings are when he does most of his eating.

silverfrog Wed 09-Sep-09 10:18:36

I am sorry you are getting conflicting advice form professionals - I think Lingle has summed it up well; the dentist is advising on an ideal, he is not really in a position to understand how the reality is.

dd1 has had moments in her time, although not as severe as you are decribing. her isuues centre around smell (she will often reject a food as it is being brought to her based on smell) and drinking - for a long tie she would only drink one type of juice. I had her dentist recommneding I water it down, etc for tooth health, but it was not possible. It was a striaght choice between her drinking nothing at all (she gave up once for 9 months) or drinking juice. Her overall health won out, and I gave juice. 3 years on and she will now accept watered down juice.

dd1's school have a programme for fussy eaters, and it seems to work well. they too play with food, all the time.

so mashing up bananas with forks etc, dropping cubes of jelly into water . freezing things in ice cubes and watching them melt to discover what's inside (aided by a hairdryer if no noise sensitivity). I'll have a look in the food play folder if you want, and see what else they do? (dd1 not too bad an eater, so idon't always take in what they say!)

cake wise - beeteroot also makes good moist cakes (good in choc cake) and Nigella Lawson has a few recipes using ground almonds instead of flour - good for protein intake! there's a clementine one (fruit too!) and also a choc brownie one too. for recipes, try looking up gluten free recipes, as these often make use of things like ground nuts/banana/quinoa flour as sustitutes, and these are all quite nutritious.

I hope thing improve soon - dd1 went through a phase of not eating (thankfully relatively shortlived) and I was literally tearign my hair out in frustration.

try looking on dietary needs direct, or goodness direct for GF snacks too - I have seen quinoa crisps before, and cereal too. not solving the foods issue as such, but if you can get more nutrients into your ds without stressinghim, that would solve part of the problem, i guess?

claw3 Wed 09-Sep-09 10:24:54

Kree - Mouthwash is something i have been working on, i have a fruit flavoured one and we have made a bit of progress, he will put a bit on his finger and taste it, so i suspect in a few weeks he might well tolerate a bit more.

The dentist tells me mouthwash contains a lot less flouride than toothpaste and shouldnt be used after brushing or applying toothpaste to the teeth, just in between.

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