Increasing calorie intake

[streakybacon]

Ds is 13, has AS/ADHD and is prescribed methylphenidate (Ritalin). It can suppress appetite so we have to keep an eye on his weight and ensure he eats enough.

In the last few months he's stretched like elastic but hasn't had proportionate weight gain. He's 5'5" and 7st 10lb, which marks him as just underweight.

I need to find ways to get more calories into him and looking for some ideas. He's always had a limited food range because of his AS but it's widened over the last couple of years and he eats better now - nutritionally very good but socially not so good (no pizzas, burgers etc, we struggle to eat out as there's so little he'll like).

My main concern is that if I give him more calorie-laden snacks between meals (as recommended by his psychiatrist), he'll then not be hungry enough for the meals and his calorie intake overall won't change. He does eat a lot of fruit and veg with meals so I have wondered about substituting some of those for higher calorie foods like bread etc.

I'm also bothered that his current dosage is losing effect and I think it's time to increase, though his psych may be reluctant if he's not eating enough. We see him again at the end of May so I'd like to have some improvement before then.

I'd really appreciate the wisdom of MNers with similar experiences .

TIA

Streaky, I resorted to giving my DS a Complan milkshake, made with full fat milk, as a supper time snack, not long before bed. It was after all other food so didn't affect his appetite for tea, etc. There are about 400 calories in it when made with milk. It did the trick.

How about using nuts as a snack, along with fruit, or cheese cubes or even cheese strings. I know what you mean about spoiling his appetite, though, which was why a milkshake in the evening worked for us.

Thanks EllenJane. He already has a hefty snack of toast, whole milk and bananas in the evening, and ice cream. I know a lot of people recommend Complan shakes but it's not something ds would stomach, unfortunately. I could try 'little and often' snacks just to get more inside him, but it does seem to be finely balanced and even small additions affect what he'll eat at the table .

They are quite sweet and artificial tasting! My DS actually liked them. It's high calorie but low bulk you want, then. So giving him the calories but not filling his stomach. Milk shake smoothies made with real fruit? Peanut butter or Nutella on the toast?

I think it may be more the texture than the taste that puts him off milk shakes, though he hasn't got that much of a sweet tooth anyway.

And yes, he has Nutella on the toast in VERY large quantities! Perhaps I could suggest he has an extra slice? Every little helps, as they say.

We use maxijul - available on order from boots , used to be available only on prescription but you can get it now without a prescription. ds2 first had it years ago from the consultant paed but now I keep it in the cupboard for when we have blips and his calorie intake gets too low.

Complan is always in the cupboard too, sainsburys do a similar thing called build up which comes in all sorts of flavours (sweet and savoury) but if you look at the ingredients its not quite up to the quality of complan

Maxijul is a tasteless white powder which you sprinkle on food like icing sugar or add to drinks. see here

That sounds interesting eatyourveg. I'll have a word with our tame pharmacist . Can your ds tell when you've added it? Mine can tell a rogue ingredient at 50 paces so I'd need to be super-careful.

This was a big problem with ds1 between starting Ritalin (age 8) and the age of about 13. Does your ds just have a morning dose or does he have anything later on? Ds has 54mg Methylphenidate in the morning but if he is doing anything in the evening needs 10mg of short acting ritalin. We used to give him an extra meal at 9pm but this didn't work when he took the extra dose and there was a while when he was quite skinny.

He is now 16.6 and it just doesn't seem to be a problem anymore. He sill eats very sparingly during the day but grazes throughout the evening and is a sturdy 5'10" (so it didn't stunt his growth as everyone was keen to tell me it would). It has affected his appetite less as he has got older. Ds is quite fussy with food but loves things like curry with naan bread so I would make a creamy curry for him and he likes things in pastry (sweet or savoury). He also likes ice cream lollies.

jubilee10 thanks for your reply. The longer lasting version of Ritalin didn't suit ds so he's on slow release all the time, 25 mg per day (10 mg in the morning, 10mg at lunch and 5mg evening meal). He also takes atomoxetine 18mg in the morning. The medication has been effective but is starting to be less so as he's getting bigger - we've discussed this with the psych before and we've anticipated that he'll need an increase as he moves through teens, as hormones can also influence effectiveness.

It's encouraging that your ds has improved as he's got older and that he's moved past his skinny phase. I'm hoping that mine will even out after what's been quite a sudden growth spurt but it would be nice to help him balance his height/weight a bit. I think it looks as though the best way forward for now is to increase that evening snack and offer some less bulky foods between meals during the day. I'll look into Maxijule too.

Thanks for all the replies. Most helpful .

Yes, I think you're doing the right thing. The only thing I would say is that I often think "all that worry," worry about meds, food, school, social aspects etc. you will know what I mean and I look at him now and think why was I worried! He's great!

ds2 says he can't taste the maxijul now but has become rather obsessed/anxious about being ill so will take anything we give him. When he was much younger though he had it with paediatric seravit which was also prescribed and although we had the unflavoured version he used to know when I'd put it in his milk/juice. Can't be sure if it was the maxijul or the seravit he was tasting. seravit might be something else to ask the pharmacist about. See here

It's not easy is it?

The dietician has advised adding extra calories whenever possible to my son's food such as double cream, butter, olive oil. This was a lot easier when he was younger but is becoming increasingly difficult. We have just been prescribed high calorie drinks to try him with which I shall be collecting from Superdrug on Tuesday. I hadn't thought of trying Complan - I think he'd love it. Will see how these other drinks go first though.

So he needs empty calories then, the ones we're always being told to avoid, calorie-rich but not filling.
Would he eat crisps? If you read the labels you can find ones without nasty additives.
Hi juice squash (not sugar-free.)

That's exactly it SilkStalkings, and he doesn't do junk food at all (apart from Pringles, but they're shite and only for 'special occasions'). Doesn't like squashes either but I might be able to get another glass of whole milk into him occasionally.

Last night's 'snack' consisted of three slices of wholmeal toast with Nutella, a Twirl, two bananas and a glass of milk. And a Magnum. Let's see where that takes us .

jubilee can I ask you who now prescribes your son's medication now that he is 16? Is he still under children's services or has he moved over to adult? Ds sees a private psychiatrist for his meds and I'm starting to wonder what will happen when he hits 16.

Thanks.

Can I ask what differences you have all seen with medication. Ds,nearly 8 has asd and has been assessed as having the in attentive form of ADHD. It has been suggested that we might try a low dose of Ritalin. What have been your experiences?

Much younger child (2) so apologies if this is totally off point for your boy. But shes been not gaining for ages (i think mainly because limited motor and communication skills mean she just wasnt getting enough in) I now add cream, butter or oil to everything she eats. She put on a kilo in a month - another kilo and I will be happy.

googlenut , - ds didn't start taking methylphenidate till he was 11 although he got his dx (after AS, as you suspect with your ds) a year earlier. He'd been under so much stress in school that we thought it sensible to wait and see how much he settled once he came out for home education at 10. He did lose a lot of the anxiety but the worrying ADHD symptoms were still there so we decided to go ahead with a trial.

Once he started the effects were almost instant. He was calmer, easier to reason with, accepted support strategies more easily. He was less fidgety, a bit more focused and able to concentrate, just overall nicer to be with and this reflected in his temperament. He was overall a lot happier than he'd been in years. Mind you, it was still far from ideal and it took us about 18 months to jiggle dosages until we found a plan that worked for ds. He is still on short acting Ritalin as the slow release didn't suit him - a good psychiatrist will ask you to observe and monitor changes in temperament and other side-effects and report straight back so that you can make adjustments.

I have to say that medication alone wouldn't have given the progress we've had with ds. Overall it's been a combination of drugs, home education, appropriate behaviour management techniques and an amazing karate club - all of which have been esssential components. But it's possible that medication was the catalyst that made all the others work better. Nowadays he's doing brilliantly - socially active, a few decent friends, can focus well on academic work and does well with his tutors. He's well on the way to GCSEs and I'm certain he'd never have got this far had he stayed in school because his teachers were among the obstacles to getting medication when he was there.

If you're considering Ritalin, ask if you can start at 5mg short release to begin with. A lot of psychs start at 10mg but that can be too much. If you start small you can build on it if there are no side-effects. You may not see any benefits at that dosage but at least you'll know that he won't react adversely to the 10mg dose.

The only side effects ds had were a slight delay in getting to sleep, a little bit of nausea when he first started (which wore off after a couple of days), and the reduced appetite. I personally felt they were insignificant compared to the benefits he's had.

Hope that helps .

Bit of Nesquik in the milk to introduce flavoured milk with an eye toward milkshakes?
Home made cakes/cookies - if he prefers veg could make a big deal of that: carrot/courgette muffins, chocolate beetroot cake - get him to help make them.

Thanks again Silk. He used to drink gallons of Frijj chocolate shake when he was little - I wonder if he might take to it again? Hmm...

Home bakes good idea too. We always have a supply of chocolate banana muffins on hand so maybe I could force-feed him one of those after meals instead of apples - I think he has enough fruit that it would be OK to substitute some if it.

Thanks for the detailed account streaky. Ds has been assessed and they say he could get a dx of in attentive ADHD. We have tried some sensory stuff in the classroom but OT is now suggesting trying a low dose of medication.
She said it might also help with other issues like motor planning as it helps the brain to start firing better and making the right connections. That's what appeals to us but have any of you found that medication improved some of the ASD behaviours?

I think so, yes. The main ADHD improvements were with impulsivity and an ability to focus on behaviour management strategies, so anywhere that that applied to AS there was an improvement there too. He's far less obsessive because he has more of an ability to stop and think, analyse his behaviour (and acknowledge when it's pointed out to him) and act upon it. Anger, which was a massive problem for him a few years back, is a thing of the past now, which we're all very relieved about .

I mentioned earlier that there were a number of factors that helped to make progress and they all impacted on each other. So being able to focus on his karate class helped him to develop patience, discipline and respect that was being taught in the class. Focusing on music lessons helped him learn to be less of a perfectionist as he was able to go over a bar at a time when he made mistakes, which he couldn't before. Social skills development has rocketed and he has the confidence to be independent - he regularly gets the bus to HE classes and other activities on his own, and that in turn increases his self esteem. It's all interlinked and once progress starts in one area it tends to have a knock-on effect to others, iyswim, but I doubt any of it would have been possible without the medication to kick-start it.

I'm no expert but having seen the huge benefits of medication to my son I'd certainly recommend giving it a try, though I'm a little concerned that it's your OT who's making the suggestion. What does the psychiatrist who assessed him say? It's his/her call on medication, whatever anyone else thinks.

Thanks. OT is very experienced and always goes for trying sensory stuff first. But she had told us of the big benefits she has seen in children like ds with meds. Obviously would have to go back to psyc to get meds so just investigating at the moment.
Interestingly ds has problems with anger and really bad moods (like really bad PMT!) so was interested to see that it helped with that.

I should stress that IMO it was the support strategies that resolved the anger issues, the meds just helped him think clearly enough to respond to them. Ds still has a lot of problems but they're not insurmountable now because the drug gives him the ability to work on them, whereas before he was pretty much helpless and heading down a difficult path.

Your OT sounds good - you're very lucky . It's sensible to look into all the pros and cons before going ahead but she does sound like she knows what she's doing.

She's amazing, she actually phones me to tell me stuff! And I know how lucky we are to have her-she even volunteered to come to ds statement review to emphasise what the school should be doing. I have been known to hug her!