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 have pointed out the inconsistency before (as has dh) - not in public though. COuld be worth a try I suppose, but not sure I want to set up that kind of non-relationship tbh.

I am already known as a PITA parent, because I won't let dd1 use their antibac soap (full of stuff she reacts to), and always state my case if I think what they are doing is wrong. it is a pre-school, so they aremore used to parents of newly-diagnosed children, who fall upon them happy to listen to any and all advice. Don't get me wrong, they are brilliant at what they do, but while it works for 80% of children, it isn't working for dd1, and they won't listen to what WILL work for her, which could be achieved without, as they put it, "destroying the ethos of the school"

I was told this morning that they are working on her drinking this term, apparently - I will be telling them at collection that they are not to (last time dd1's drinking was messed about with, she stopped for 9 months). they probaby won't listen - I think they think I pander to dd1 too much. HOwever, if she will drink a reasonable amount of liquid form a toddler cup (about 300ml daily) then as far as I am concerned she can use a toddler cup for the rest of her life. they are desperate to get her using a "proper" cup, as there is no physical reason for her not to do so.

I really do wish people wouldn't mess where there is no need to. or only intervene if there is actually a problem.

claw3, I couldn't find the food folder the other day - I'll keep looking, and see what it suggests.

[sphil]

Sigh....I am also a PITA parent and know that in some quarters I'm seen as 'cruel' for depriving DS2 of foods he is intolerant to! Like you though, I try to maintain as positive a relationship as I can (and most of the time DS2's school is very good ) so that when I do go in for the jugular they don't just say ' Oh Mrs Sphil is going off on one again'. Bloody tiring being such a diplomat though...

[claw3]

Thanks Silver and i read the book you suggested about a year ago.

Im one of the new diagnosed parents (October 2008) and i have been exactly as you describe, listening to all the 'expert' advise, i didnt have the confidence or the knowledge to disagree!!

But since October 2008 i have done nothing but read about my ds's condition and i have found MN much more informative than any advise i have had from experts. I have now started to trust my instincts

Experts have a way of making you feel like a failure, without even trying!

Ds drinks more from bottles or with a straw (not the baby ones, the ones with sports lids) than he does a 'proper' cup. I think he is worried about spilling any onto himself?