Selective Eating - help with energy supplements please - Scandishake or similar?

[tricot39]

Hello.
I am not sure whether we qualify to post on this board but my son has reduced his diet down to a bare minimum. Now that he is at school his intake has taken a complete nose-dive and I am terrified we will be heading to hospital if this continues. We read about Scandishake in Can't Eat Won't Eat by Brenda Legge. When I went to buy it I saw a whole host of other things on offer and Scandishake contains palm oil which pricks my environmental conscience. Any advice please? Thanks so much in advance.

hiya, have you spoken to your gp? I spoke to my gp and he referred my ds to see a dietitian. The dietitian reviewed his diet and advised what supplements I should give him. You must be very worried. I have been very worried about my ds and have found speaking to the dietitian very helpful. Best wishes x

I should add that I have never heard of scandishake. I probably would not go down that route with my ds. Even though my ds's diet is very limited he does eat something out of each of the food groups. What does your ds eat?

thanks for responding. we dont cover all of the food groups. we saw dieticians 2 years ago and they couldn't offer help. we had chosen supplements and they suggested some alterations but we were left to.find suitable products. that's why i didnt even consider going back to them :(

we are mainly dry carbs and smoothies. we have analysed his intake and he is getting nutrients but it is now calories which are the problem. all the advice says 5 small meals (2 snacks and 3 meals) per day but now.he is at school he is eating very little and his weight (combined with a tummy.bug) is of concern whereas it was previously surprisingly following standard curves.

we find it impossible to run with the "no stress"/division of responsibility approach when his weight is faltering!

it is not good that you are left to deal with this on your own. I feel the same about my ds's eating problems. Even though I have been told he eats enough he has problems chewing and there is no one to help me with that.

It sounds like you are thinking things through very carefully. I am sure you will do what is best. What about speaking to your gp to find out if there is any where to refer you to. I have had advice from clinical psychology and Salt for eating issues. I am hopeful that the referal to occupational therapy may help. I keep trying to find the right person to help me.

best wishes x

Supplements like scandishake are for use under medical supervision. See a dietitian who will choose the correct one and arrange for it to be prescribed.

thanks tacal. it is so hard isnt it? last year the "selective eating" problem became "official" in the american manual of psychiatric problems. A diagnosis doesnt help.day to.day but hopefully it will lead to research into what can help. i hope you find the right person - ot sounds good if chewing is the trouble.

starfishmummy - scandishake can be bought on the net and there were no limits on use over 5 years old. i had no idea it might be available on prescription so that's a good thought.

We have come to the conclusion that we will speak to a dietician for advice. We waited months for poor advice on the nhs 2 years ago so we are considering raiding the savings for a private consultation. That way we can get immediate advice and would get continuity of care in the future if we needed follow up.....

Hi Tricot, I've found the same lack of support. DD's diet is still very limited - worse at the moment due to a bad cold. Generally its carbs, milk, juice. GP thinks its all to do with the possible autism diagnosis and has declined to refer to anyone else til that is done - only thing is its a 12 month waiting list for the diagnosis. We give WellKid liquid vitamins and she looks quite well but is often tired and I worry her about iron levels. going private sounds like the only option - be interested to hear how you get on.

hi constant.i read that 50% of those with asd.have selective eating as part of their need to control and limit change. when we went to the nhs dietician we took food diaries that we had prepared and the details of the floradix and vegepa supplements that we use. they generally said this all looked ok but could we reduce the calcium supplement? they didnt give advice on how we could do this and still get the supplement concealed within a smoothie. so we have carried on regardlless and i worry about it occasionally. so it would be good to get help on that as well as the overall calorific intake. i will let you know. apparently a woman could maybe come to our place within the week. dh has also been looking into hypnotherapists as we have heard that relaxation might be of help..... sigh..... so many possible things to investigate

how is your dd?

Well... I met with the autism specialist support worker who observed her in nursery and she can't diagnose but said that she believes she has Autism - high functioning .has suggested we keep her in nursery an extra year (she has an Oct birthday, so we can do that) as her social skills are non existent but is academically very bright - so would do better going into year 1 after a year of intensive support on social / emotional development. I'm relieved as I was very stressed about sept - but desperately sad that it is ASD. She seems to be getting more noticeably 'different' as she grows older. Food is a massive problem still (although I try not to stress...). She has a cold at the moment which always makes it worse so she is existing on croissants and milk.
Hypnosis sounds interesting... I would try pretty much anything!

Hi Tricot, I hope you get some good advice by going private. Best wishes x

Oh Constant, it is bewildering. On the one hand it is comforting to have some answers, but then to have no comfort from that same terrifying answer. We are very likely to be in Aspie territory but of course this will not become clear for much longer so we live in some sort of limbo understanding that it might be a possibility but hoping that this doesn't come to be true!

The dietician's appointment, as expected, did not wave a magic wand but neither did it provide any practical answer to our immediate problem that DS is not getting enough calories. Our bank account is also quite a few £££s lighter.

I spent 1 hour listening to ill considered and contradictory advice in addition to running through all of the "beginner level" stuff like no TV, no toys, set meal/snack times etc etc - mainly because she didn't plot his weight on the chart straight away. She suggested that not offering preferred foods at mealtimes and offering only fruit for snacks over 3-4 days would mean that "he would not starve". "Have you tried telling him to eat banana/apple?" "kids are clever when they know what they want to eat" (ie he is just wilful)......

Then she plotted his weight and realised that this advice wasn't appropriate as his weight is low. She was actually more concerned about his percentile weight than anyone else has been ever!! She said it was considered "faltering".

She then suggested all sorts of fortification of foods. Some of these we do already, some we will try and some he is unlikely to accept. The main reason we wanted to see her was to find out what calorific supplement we should now consider because we have been losing calories now he has stopped eating during school hours over the last month or so.

She stuck with her insistence on fortification before anything else and when asked how long we try this for she said "3-4 weeks" - eh? She really thinks that we will see an upward swing in his weight curve towards a centile curve which he has not been near for 4 years?! In only 3 weeks?!

FFS why not just cut the dogma ("we don't prescribe supplements at a first appointment") and admit that supplements might just possibly be sensible in this case? Why make us wait another 3 random weeks?

And she claimed to have had experience of very selective eaters..... sigh.....

If calories are concern, then experimenting with calorie-dense (i.e. high fat) foods (easier said, than done, I know -- I have a child with three daily staples) is a good idea. We cook everything we give DS with whole milk/double cream, and add extra virgin olive oil to his pasta. Coconut/MCT oil is an excellent source of calories from fast-absorbing fat, so good for energy levels. Almonds/cashew/macadamia. Butter. You get the idea.

PS: Whoever has an idea of mentioning "fat is bad for your cholesterol" after reading the above--please, don't :>

thanks kakty3

in one short post you have suggested more useful and novel suggestions than our dietician managed. i will look into nut butters and coconut oil - thanks. how strongly do they taste?

we had come up with the idea of using tofu which she supported but wouldnt have suggested herself. unfortunately we already use most of things she suggested (eg milk powder, full fat products and lots of dairy) so we had run out of ideas and thought a "product" might be required.....

thanks zzzzz!

we actually do ok on getting/being at the table and snack times etc it just has no effect on his eating. we have been ticking all of the "good practice" eating boxes for a few years now but it is only now he is a bit older and we are using incentives that we are getting him to try licking/kissing our family foods. There is just some massive barrier to him eating them.... we know it is his choice and we have done all that we can for him - which makes crap advice centering on our behaviour/change really irritating now that we have heard the same old stuff so many times...

typically we.dose him up with fruit, calories and vitamins/minerals via 2 thick smoothies at breakfast & dinner. he then nibbles a bit of cereal/toast at breakfast with maybe a chocolate sandwich/butter on pitta for lunch with petit filou. dinner would be fried potatoes,.chips, potato waffles, baked potato or similar plus a chocolate cake/cookie/mousse. He only drinks water. he will eat plain chocolate buttons/bars and the odd cracker/biscuit for snacks. Sometimes he might show interest in a bit of apple if peeled/cored/sliced. ice cream is occasionally acceptable but rarely finished so i would be interested in a fab recipe!

we were managing to keep weight gain fairly steady but what with the school insisting on fruit for morning snack and setting rules about which order the packed lunch is consumed, he is eating next to.nothing at school. so we need to up calories at home and/or finding something that he will eat at school willingly.

we are probably just having our annual panic as he drops more acceptable foods over the winter (again). this time though i just cant see how we will manage as he already eats so little. the school have realised that they need to relax their rules a bit which is good and we will go in to see them next week but i am not sure what we can/should do.... never mind what we should ask them to do!

tricot39, I am glad I could help. There is a distinct taste to all nut butters and coconut oil, but it's subjective anyway, so the best thing is to try and see for yourself. They should be for sale in most stores, but I normally just buy our stuff online from sports nutrition retailers (as these are a staple for many strength athletes) with an added benefit of value sized packaging. For example:

Extra virgin coconut oil
Almond butter
Cashew butter
Pistachio butter

ooh thanks for all that. i will try to find some time to absorb all the info tomorrow.

the school are ok. maybe a bit slow on the uptake but think they have realised that he isnt just another fussy eater. they invited us to.come in and talk about it next term so hopefully all should be well.

oops - i meant next week after half term! not sure what they can do to help really. we dont want them to apply pressure and i dont think that there is space to have him eat lunch away from the dining room bedlam. any ideas....?

ds2 is one of the case studies in the Can't Eat Won't Eat book by Brenda Legge (Case 8 pg 87) the dietician was useless in our case, just telling us what he should be eating for a balanced diet as if we didn't know. The paediatric consultant was the most helpful, she prescribed Maxijul (available to order from Boots without prescription) and peadiatric seravit

ds went for around 2-3 years solely on yogurts and milk and some 15 years on from Brenda first contacting us, he still has maxijul every now and again and when he gets over anxious will only want complan which the pharmacist tells me has enough nutritionally for him. He turns 18 in a couple of months, his growth was stunted as a result of years of food issues but he wears 26 inch waist and 30 inside leg and tucks in to a full Christmas dinner when the feeding clinic at GOSH said he would never eat solids. When he is reminded of those times he gets upset and says food/anything near his mouth used to scare him. He still loves to have yogurt at breakfast.

School should be able to let your ds eat away from the bedlam of the dining hall - ds had an amendment to his statement as the food issue "impeded on his ability to access the curriculum"

The SALT was quite helpful too in desensitising his mouth

I'll also be trying those suggestions Kat thank you, the butters look amazing. DD likes her bread / croissants plain, but I might be able to get her to have almond butter in biscuits... will have to keep DH off them though as he's got high cholesterol .