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I wish we'd have done this years ago. It has been an absolute game-changer in terms of what we can consistently get my son to take and therefore the results we are now able to get from those things.
We still need to put some things into his food but those things don't have any unpleasant taste and are easy to mix in.
He is diagnosed as low-functioning Autistic with severe learning difficulties. He is extremely defiant. The slightest hint that we want him to do something, rather than it being his idea, results in resistance. He has no focus for almost anything. He does not imitate. He does not speak. We frankly didn't think he was capable of learning this but we are realising more and more that there may actually be a normal mind trapped in a body that has an "output problem" as Ido Kedar calls it (a boy with the same diagnosis as my son but who learned to write using a letterboard - his book Ido In Autismland is amazing and I feel strongly should be read by every parent with a child with Autism).
Here's the story of how we went about it.
It was really just lots of trying to get him to do it, persistently, for weeks and months.
We started out with the cake decorating balls ("pearls"? see the picture below) that were only about 2 mm in diameter. My wife managed to find organic ones without scary colouring. But honestly, I think I would use scary coloured ones regardless if that’s all I could find. This is so important and they seem to work so well.
No, it does not matter that they are sugar, for three reasons:
They are tiny! The amount just isn't worth considering.
You're using them to teach what might be the most valuable skill they will have: The ability to take things to change their life.
They will only ever take five or six, once per day, at most. As soon as they can swallow them, you'll swap to an actually (tiny) capsule of some supplement.
Here's what I mean by "cake decorating balls":
We would always take one first ourselves; we'd put it on our tongue and then swallow the water before showing our empty tongue. Then we would eat some piece of the treat we were offering him.
In our case, the treat was dried fruits. The same dried fruit he got anyway, but we couldn’t think of any other option that didn’t also cause his gut to flare.
He fairly quickly tried putting the cake decorating ball in his mouth, but always spat it out again.
After what seemed like weeks of trying this once a day (so as not to make a huge battle of it) he got the idea of holding it in his mouth and taking a sip of water, but he always cunningly spat it into the water glass. Again that seemed to go on for weeks. We felt we couldn’t press it, or else we would get into a battle of wills. And that would’ve ruined it.
And then one day, he just swallowed the ball. BUT I did make sure he took a big enough swig of water: I raised the glass he was drinking from a little so he extended his neck and had to take in more of the water.
So we gave him lots and lots of praise and lots of treats. And the next day… He didn’t do it. And it was hit and miss like that for… I’m not sure. Maybe two weeks? Maybe longer.
Then it stopped being hit a miss, and he started swallowing a little cake decorating ball every day.
I think we went on like that for a week. Just because we didn’t want to change anything and mess up the whole process.
But one day instead of the cake decorating ball, I got a tiny little Jarrow Pterostilbene cap (size 5 maybe?) instead of the cake decorating ball but as I was trying to put it into his mouth, I dropped it and it rolled into the hallway.
And to my astonishment, he went and picked it up and handed it back to me and waited for me to put into his mouth. And he swallowed it without blinking.
And that was that.
After a week on those I started making up a size 2 capsule (I'd bought empty ones from iHerb) that I filled with some of the nasty things we were getting him to lick from a spoon each morning. Then after a week onto a size 1 capsule with all the nasty things from the spoon!
The first day I made up a capsule I also made up the "nasty spoon". When he saw the spoon he got really upset but then I told him that he wasn’t going to have to take it because he just taking the capsule. He took the capsule and was so happy! He didn’t stop running and hooting for fifteen minutes!
A few minutes later, he ran over to the plate with the nasty spoon on it, pushed it across the table and shouted “No! No!” (he doesn't speak!).
I still make up a nasty spoon using just some of the Now B50 (because that was the main ingredient and is bright yellow and so it looks identical) and lay it out on the plate just like we have done for a year. And each day I show him and tell him he doesn’t have to take it. And even after three weeks of doing that I saw him clearly grin.
One thing has been very important: Enough water when swallowing the caps! He otherwise treats the water as "just a thing you have to do" or a "box to check", not realising that taking a tiny sip of water is not enough to wash the capsule down in one go.
You can make your own capsules if you want to!
To make up the custom capsules I've found this setup to make it really easy:
Now Foods Size 00 Gelatine Capsules.
A small plastic funnel I found with neatly fits the cap in the end without it falling out.
An angled toothbrush with the head cut off with a small saw to make a "tamper".
So, do I have to fill my own capsules?
Absolutely not! I know people that do not.
One parent I know has their daughter swallow literally dozens of capsules every day now
My son absolutely would not put up with that so I package exactly what I need him to take into a fixed number of caps (6 per meal, in two groups of three, with a bite of food before each group). I do that every morning. I'd rather not have to, but we do what we must.
Don't forget to explain why they might want to take them!
We had no idea how much our son understood of what we said. Now we realise he's understood for years.
We're sure it has really helped to explain to him why we take the capsules, and to keep reminding him. We tell him they help him to sleep, to think, to stop his skin itching, to keep his belly happy and to speak! (All of which they are doing!!)
And once he was taking them, I told him that he'd learned to do something that very few kids can do, and even many adults can't do, he seemed very pleased indeed!
Once they are taking their first tiny capsule how soon, and how do I move on?
Soon! A very, very few days at most. And then move on to anything that's larger (preferably something with a lot of value to your child). Then move on to multiple at a time.
I find it easier to take some food between each few capsules taken, and so does my son.
What do the size numbers for capsules mean?
The numbers go the wrong way around! The smaller the capsule, the larger the number.
Size 5 is absolutely tiny. Size 00 is pretty big (a Jarrow Colostrum or a Microbiome Labs Mega IgG2000).
Size 000 is absolutely huge - but I know of an 11 year old that swallows them without any trouble (but I don't recall ever seeing a 000 cap that a supplement comes in - the largest I've ever seen is size 00).
How do I learn the capsule size numbers?
You don't need to learn them! I'm just talking about them here because there's no practical way of talking about them otherwise, and ultimately you may want to buy empty ones to fill.
It doesn't matter -just start really small and work up, in large steps.
It's not practical to use much less than a size 2!
Unless you're just using it to practice and build up, I don't think it's practical to try filling capsules that are less than a size 2. A size 3 is really small and fiddly and you'll spend ages trying to get anything into it.
Each larger size holds a lot more than the last one (economies of scale).
Once a child is swallowing the capsules I don't think it really makes much difference between a 2 and a 0. I'm not even sure that there's a difference betwen a 2 and a 00!
This might help: How often has your child swallowed great lumps of food without chewing them and you've seen it come out undigested in their poop? I've seen large, large slices of roast carrot, the size of the largest coins. Repeatedly.
Should I build up from size 5, to 4 to 3 etc?
The short answer is, no. It's just not necessary. As I mentioned above, I really don't think anyone can notice the difference between swallowing a size 2 and a size 0 (quite large).
Are Gelatin or Vegetable Caps best?
I'd certainly say gelatin caps are best. They dissolve far more easily than vegetable caps. Karen DeFelice (in Enzymes: Go With Your Gut) writes about her own experience with seeing vegetable caps not be as effective as gelatin (she then did a bunch of little experiments at home which showed how the gelatin caps dissolved far more easily).
However, if you can't get or don't want to use gelatin, it's obviously fine to go with vegetable rather than nothing!
We worked up to 00 - here are some links for that size:
Bulk do size 00: https://www.bulk.com/se/gelatinkapslar.html
Amazon has size 00 (on various EU sites - edit the Amazon address ending for you preferred country): https://www.amazon.co.uk/-/en/dp/B08CKFW2M1
iHerb size 00: https://se.iherb.com/pr/now-foods-double-00-gelatin-caps-approx-750-empty-gelatin-capsules-3-14-oz-89-g/891
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