Starting Medikinet - any experts around?

[MissHavershamreturns]

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious so I want to start on a weekend or half term which is now only ten school days away, where I can support if there are side effects as they may be very frightening for dc, given they are currently pretty vulnerable.

The paed has suggested that the most likely effects will be headaches, appetite suppression and difficulty getting to sleep. Is this what everyone found?

Does anyone have any advice on what time to take it? Paed said best to take with breakfast but dc is a very early riser (up from 5.30 am). We currently have breakfast at 6.45 am and then dc is into school for 8 in early Club and is collected at 3.20 but some evening club nights until 4.30pm. It’s the 8 hour version of Medikinet.

So grateful for any advice on what worked and what didn’t

@MissHavershamReturns we have PRO-Teen at the mo. We have a chocolate shake she likes. It's hard when we all need to loose a few pounds and she needs to gain it. I'm worried about it effecting growth

Miss H. Glad the drink idea is a help. You can really load the calories into can't you?

I don't know if anyone else has had this but my DS pre meds was very obsessive about food and eating, over ate and constantly begged for food/ tried to eat leftovers from his siblings etc - felt like it was a bit more obsessive than normal general love of food.

Since meds this has stopped and he's lost weight he eats ok some days but not interested others - glad the milkshakes have gone down well

@HauntedPencil we haven’t personally had this with food as my ds was never very
food focused. Does your ds only have an ADHD dx? My son has ASD too and definitely gets really interested in things (although not food in his case) and it can seem to be a combo of ASD special interest and ADHD hyperfocus!

So my own learning point on food that I wish I had known when I started this thread is the following!

If when you start ADHD meds your dc is already on the slim side or close to the underweight line on BMI, it would likely be worth concentrating on bumping up their calories proactively BEFORE the weight loss becomes an issue, so they sit closer to the middle of the normal BMI band. That way they have a bit of a buffer if the meds do cause them to drop weight.

I’m finding this link really useful in case helpful for anyone else www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/

What it explains as I understand it, is that rather than trying to increase the amount someone on ADHD meds eats (which would be v hard when they are appetite suppressed I guess) the best way ahead is to ensure every bite has maximum calories. Also to pick times of eating when they are hungriest.

This morning was pancakes for ds, which I “fortified” as explained in the leaflet with added butter in the mix.

I used this recipe for the whole family - 250g plain flour, 600 mls whole milk, one large egg. Then fortified his half of the mix with one heaped teaspoon of butter. I cooked his in half butter, half olive oil. Encouraged him to have them with (full fat) cheese as savoury and chocolate sauce for the sweet ones. He ate three!

What I’m finding is that by focusing on getting him to take in more calories I’m paying much more careful attention to what he likes eating and he’s starting to enjoy food more again which may also be helping.

He’s still looking very thin on the legs, but his face at least seems to be rounding out a little I think.

I’m going to do his weight at the end of this week and send across to the NHS consultant’s secretary so they know he’s lost quite a bit of weight.

Sorry screwed up my recipe above as missing one egg - I used two eggs!! One for his half of the batter with butter and one for ours.

In case it helps anyone else:

Fortified batter was:
125g plain flour
1 egg
300 ml milk
1 heaped tsp of melted butter

I put flour in first, added egg, half milk, whisked up, then rest of milk then butter. Then made his using half oil, half butter in the frying pan.

Ours was:

125g plain flour
1 egg
300 ml milk

I put flour in first, added egg, half milk, whisked up, then rest of milk. Then made using only a little oil in the frying pan.

You can obviously make the batter all together and divide in half before you add the melted butter to their half.

I've used pancakes too recently as egg & milk also adds protein. They actually only take 5-10 min to make too

@belowfrozen great you are doing them too!! The only slight issue is I’m 6 kg out of normal BMI and dp pretty overweight so we are meant to be doing an NY diet

@MissHavershamReturns I've just taken your tip and added butter today! It's one thing she'll reliably eat - lots of

It’s actually ok with the butter isn’t it @belowfrozen? I was worried it would taste greasy or too rich as ds really doesn’t like overly rich food. It actually tasted fine at that amount!

Trying to work out what the heck we should all eat in the next few weeks and do a bit of meal planning - tricky combo of trying not to increase my other dc’s weight at all, reduce mine and dp’s, while boosting ds’ as far as possible

I'm looking at differentiating packed lunches even more. Lots cream cheese & ham for DD sandwiches and high cal foods but not for DS

That sounds like a brilliant idea @belowfrozen. My ds is still on school dinners, but I’m not sure how much he actually eats as that’s the time of day when he seems to have least appetite. If this weight thing doesn’t come under control in the next month I will switch him to packed lunches too.

I just weighed ds and it’s early days but after one week it seems to be working and he’s put on 0.3 kg. I know home scales are inaccurate and weight does fluctuate a fair bit anyway across a day, but I think this has to be good news. At the very least he isn’t continuing to lose weight.

Thinking ahead, in three weeks from when I started adding on the calories it would hopefully be 1kg gained.

Going to continue the calorific and protein-heavy snacks and yesterday bought a tiny pack of king prawns as he loves these. Will do those as a snack today.

I think breakfast is going to be potato waffles with butter and grated cheese to boost calories. I’m also going to suggest a raspberry smoothie.

In case useful for anyone else wanting to boost calories because of meds and appetite difficulty/weight loss, this morning we had potato waffles so that I could load them secretly with butter and offer cheese. I spread 4 with a heaped tablespoon of butter then grated cheese on. This got it up to 500 cals approx.

I only expected ds to eat 2 so put only that on his plate initially. I think it doesn’t help to overface him as then he seems to eat less. I kept back the rest and put them out of view. I offered him the choice of one or two more, saying I think you probably can only manage one? This was my attempt at reverse psychology as I don’t want him to be aware we are trying to shovel the calories in! He then asked for 2 which was a result.

I know he isn’t as hungry at lunch as by then meds are at full force so getting in as many calories per bite at breakfast is currently vital. I did him on the bmi thing again and he’s less than 4th centile.

Peanut butter and salted peanuts are other good ones for a calorie boost.

Ds lost 8lb when he first went on medication and only being 4 stone to begin with he looked skeletal, CAMHS wanted to stop medicine because of it and had started mentioning anorexia to us. (He’s severe adhd, so stopping meds is not a possibility)

Ds has autism too so his diet is very limited in normal circumstances.

Ds eats plain pasta so I add a tablespoon of olive oil to it that’s high in calories and he has a handful of salted peanuts a day, he eats hot cross buns and plain bagels he doesn’t eat much during the day but breakfast he eats shit loads, then bedtime he eats shit loads.

He has a high calorie shake once a day prescribed by the gp now which is what CAMHS said he had to have to stay on his medication.

Ds doesn’t eat meals as I mentioned on my last post, he grazes on bits, but I’m not fussed so long as he’s eating. I just make sure what he grazes on is going to fatten him up but it’s such a pita with his autism.

A cup of full fat milk is another good one for calories.

My husband forgot my sons meds on Friday. He ate all of his pack lunch although he was a little lively!

@danni0509 definitely with you on the peanut butter! Annoyingly ds won’t eat peanuts or other types of nuts or seeds which is a shame as that would be handy

He also won’t drink milk @danni0509 and I’m jealous yours will!

Mine has asd too and I’m thinking the appetite issue is perhaps generally more tricky with dual dx kids

@NurseP oh no about meds but then bonus about the packed lunch! I’m wondering about taking a medication holiday for ds in the summer for two weeks and I’m expecting if I do to get him fed loads in that time

@MissHavershamreturns I told my ds the dietician had rang me when he was at school (she hadn’t, more chance of winning the lottery than getting a call back from her 🤣) I told him she had given me a list of food that I should buy that ds needed to try that would help him grow to be as tall as me (I love his naivety and often use it to my (or his) advantage)

I put things on the list like those mini cheeses, shreddies, pots of jelly, boiled eggs, soreen fruit loaf, tins of tuna, carrot and cucumber sticks, grapes, teacakes with jam etc.

I also told him his friend (who he adores from school) his mum had phoned me (she hadn’t, I don’t know her, she doesn’t even know I exist lol) that she had told me than x had been eating x y z and did ds want me to buy those items for him to try. Things like sausages and French fries and beans etc.

Ive sunk to desperate attempts to get ds to eat.

I have nutracheck on my phone that I use for myself but thought ds might like to help add his food to it, (you search for the food and it’s all photo based and it tells you the calories for each item) so he likes to search for it and add it, I tell him we need to get the total calories for the day over a certain number, I googled how many calories a 9 year old should eat in a day and used that number. Then spend an age explaining that each food he eats adds up to make the magic number we need to get each day.

I also encourage him to stand on the scales in the bathroom once a month or so and say oooh ds you’ve put weight on since last time, I wonder if we can get the scale to say this next time etc.

The only other thing is, you can change to a different medication, ds was much worse on a stimulant with his anxiety and eating, and it never did much for his adhd anyway, so he’s on atomoxetine now which is not stimulant based, but still affects appetite to a degree, but not so much as the methylphenidate. And he’s much more settled on this one.

Just an update from us , DS had Medikinet holiday since early December

In the meantime we also trialled out a natural approach (certain vitamins/minerals as recommended from an American psychiatrist who believes certain deficiencies can make adhd much worse )

have to say the difference especially last week has been remarkable
first day at school yesterday and we already lowered the dose to 30mg (was 40mg before) and still reporting pretty good at school (also not been on the drug for a month helped as he seemed to have already developed tolerance)

fingers crossed if the natural approach continues to work we ll drop even further to 20mg in Feb but obviously have to wait and see

hoping this helps somehow! hope everyone is coping ok!

Great news @LoveMyADHD. Really glad to hear all going so well for you and ds.

@danni0509 thanks so much for posting. I’ve re-read your post quite a few times as it was so useful. Really helped me to understand what will be happen if ds’s weight continues to be low. Plus so many good ideas on encouraging weight gain!

So our main update is that we’ve managed to boost ds’s weight by a full kg since I realised he was far too skinny. This has been such a relief! His appetite has recovered a bit as well and he is now eating his school snack for mid-morning break almost daily (previously his snack box was coming home untouched) and also eating toast at breakfast as well as the protein based foods we give like eggs etc.

Sneaking those extra calories in to his meals seems to have boosted appetite a bit. He’s also a bit more interested in food overall maybe as I’ve made it more fun and cooked his all time favourite meals.

He’s still only 3rd centile for weight, though and his legs are looking really thin. He seems more tired than usual which could possibly be because he’s very light for his height. So I’m keeping going and my aim is to get him at least a third up the normal BMI chart.

I’m Today’s weight gain breakfast for him was three fried eggs done in olive oil, slice of toast with thick cream cheese and slice of toast with Nutella, plus a yoghurt.

Then snack at 11 am was fortified hot chocolate - full fat milk, cocoa powder, plus a heaped tablespoon full of full fat powdered milk to fortify it. Served with four marshmallows.

Lunch is going to be pancakes.

Dinner will be toad in the hole. Pudding will be this ice cream I’ve found which is very high in real dairy.

We are taking ds to be weighed at the clinic next week to get his weight on record. Given he’s very thin I want his weight to be regularly tracked on accurate scales and taken into account in prescribing.