Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of the benefits of the medication, management of potential side effects, as well as practical tips on how to make taking the medication more straightforward, taking med breaks etc.

This is a really good place to read about recent medication journeys from the supportive crowd on the thread. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

A really good starting place for reading about the range of drugs available and what they do from a Great Ormond Street specialist with over 40 years of experience prescribing the medication is the Parents’ Guide to ADHD Medicines, by Professor Peter Hill, which is available on Amazon. A really accessible, honest and overall reassuring read, which helped me when I was very doubtful back at the start.

The tips on diet from this NHS factsheet on managing reduced appetite in children on the meds are also really useful www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/ My ds was already very skinny when we started the meds, so with hindsight it would have been good to feed him up a bit so there was a bit of a buffer when he became a bit less hungry.

This is thread 2 and thread 1 can be found here: www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38. I’ve posted my path with my dc from starting meds through to the end of titration here, as have many knowledgeable mumsnetters, so it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

@WesternEasterner we asked & were told it's fine to give a 20mg dose by giving 2 x 10mg. That's Medikinet but assume it would be the same.

@OnePlusOneEquals we were given a top up of 10 mg even when ds was on a 10 mg of the extended release! It seemed weird that top up was 10 as well, but seemed to really work for him. How are you finding the top up?

Also medikinet- should have said!

Hi @WesternEasterner welcome to the thread!

It’s great that you have managed to get your ds diagnosed at 8. Mine was 10 when diagnosed and with the difference meds have made I really wish we’d gone for diagnosis younger.

Good news that you’ve gone up to now 20 mg of Equasym and hopefully you will see even better positive effects at that level! You will have to keep us posted.

My ds also has some traits of dyspraxia and a thorough OT assessment has been really useful to us. It’s actually shown lots of sensory issue that I would have denied he had, but which I suddenly realised definitely are there once I started paying attention to sensory points. We’ve been able to address and reduce the load of things he finds difficult, eg ditched a few scratchy t shirts and moved to ultra soft socks. Being able to tell school and clubs about his gross motor skills issues confirmed by OT has helped him get more support in PE etc as well.

Our ds does have ASD and it’s great you are getting that assessed too. Even if it comes back as a no or just as ‘traits’, it’s a really useful part of understanding them. Our ds has really embraced his ASD diagnosis and loves reading All Cats Have ASD if you’ve seen that. We also really like All Dogs Have ADHD.

My ds also has struggles mostly at school, which can be really confusing as his behaviour js very different between home and school. But the meds have made a really dramatic difference for him, so hopefully you will also see positive changes.

@HauntedPencil do you mean a school-only plan like an IEP, or do you mean the one which is official and mandatory - the EHCP?

We have something for ds similar to an IEP which has really helped. We have also applied for an EHCP, which we may or may not get! If you want to chat about it please do message me and I can tell you what his teacher said about getting one - she’s very on it.

There are some good Facebook groups on EHCPs which are a mine of useful info. There is a local one for most counties eg there is one for ‘EHCP in Surrey’. If you search for that replacing Surrey with your county it should come up. There is also ‘EHCP Experiences England’, which is UK-wide.

This looks useful as well https://www.adhdcentre.co.uk/how-to-get-an-ehcp-for-adhd/

@SiouxsieSiouxStiletto did you get anywhere with chatting to ds?

@NurseP thanks for the flowers! How has your week gone?

@rhubarb84 great that your dose has gone up! I’m sorry you had such a bad night after titration. We actually did the same as you I think - 10, 15, 20 and we found that helped ds as he seemed to be reacting a lot to med changes, so it sounds like a great approach to me. Did you manage to get a chat with the teacher about whether they could see any improvements yet?

For ds the improvements were really obvious at home even at 10, even more so at 20 and dramatic at 30, but school saw no real improvements until 30. I remember coming home in tears when they told me they saw nothing at 10, but little did I know the changes on the final dose would be so dramatic.

Final quick update from me. It’s been a big week at work with lots of urgent deadlines so the juggling of the dc and work has felt even more challenging than usual.

Ds had a bit of a difficult week as there’s a few changes at school this week that he’s scared about and he has needed some time to process that. Hopefully next week will be better again, as I usually get stressed and then things come back to normal! It would be nice to learn not to go on the emotional rollercoaster quite so much. If anyone has any tips for that I would love to hear them. Feel like I need a spa weekend

Thanks a lot Miss H that's really useful I'm going into the school soon to discuss so I'll check that all out

Our capsules have been one for the increased dose they tried to give us 10mg the last month but I changed it, DS is ok with one but three is a bit much I thought! GP Peescribed as 10 3 x in the morning so should be ok

We have been doing well with wee on the toilet this week! The eating is still not great. I can't believe how suddenly his appetite and weight has dropped. I am worried that if I raise this with his consultant they may stop more reduce the meds and they are helping him so much so will just keep trying to feed him up!!!

@NurseP we have been giving milkshakes with breakfast. Banana, Greek yogurt, milk, frozen strawberries and avocado! You can't taste the avocado, promise! We also give him a brioche roll on the way to school.

In the evening we do yoghurt just before bed. That's helped us I think.

Thank you. I will give something like this a go. He loves milk but not always keen on milk shake which is strange!

@NurseP I’m sorry to hear you are in the same boat as me with appetite suppression. Was very quick here as well.

We now calorie count like mad and find getting 600 cals in at breakfast really helps. Often Bacon, sausages, waffles, hash browns, yoghurts etc etc. I have to get up really early to cook but it’s made a huge difference.

DS is worst appetite wise at lunchtime but manages something like crisps, cake bar, one or two Jacob’s crackers, individual cheese portion, muller yoghurt for packed lunch. We’ve let school know about why it’s high calorie and they are fine with that as a result.

We then do a high calorie dinner. Plus pudding every day.

Weight is going back up here!

@HauntedPencil Yes lots of capsules definitely a bit much I think. Glad they will change it.

Hello would someone remind me of the name of the book we were peaking about about supplements etc and ADHD? I can't remember for the life of me

It’s James Greenblatt : Finally Focused

What has worked for us:

• magnesium, B6, zinc, vitamin d
• anything that lowers his histamines (he gets hay fever which is linked to ADHD): methyl folate, grape seed extract etc

hope everyone has a great weekend x

Ah lovely thank you

@LoveMyADHD that's interesting, we started omega 3 about 3 months ago and that absolutely helped. I'm going to buy this book but out of interest, do you have one vitamin that provides all of those supplements or do you give them individually? Does the author of the book mention using these alongside medication or are these just an alternative in his eyes?

Ah yes forgot about omega 3 thank you!

i give them separately as I don’t really want the other things in the multivitamins …

that US psychiatrist recommends starting with these vitamins and if nothing happens after couple of months, to give them alongside drugs

we obviously did not stop meds for the sake of natural approach so we give alongside. Things like zinc enhance Adhd meds (apparently lack of zinc in the body is one of the reasons drugs don’t work or they need high dosage). Also according to him magnesium is depleted due to the meds so good to give some alongside 😉

we lowered Medikinet dose since starting them (he was on high 40mg dose earlier and ready to move to 50mg). Now he’s nicely on 30mg

also med breaks not as bad as before
so perhaps worth a read 😍

I have found a really good multivitamin with all of these in and my kids will take it!! I give these to both my boys, even my youngest who probably doesn't have ADHD but is an absolutely bonkers 5 year old (aren't they all?)

It's got 75% of the RDA of zinc and 50% of the b6. It has all the vitamin d but only 20% of the magnesium. I might try and supplement that a bit more.

@LoveMyADHD can you link to exactly what you buy? I always find it such a minefield. Finding the right type of omega 3 felt like it took weeks 🤣

Here they are x

im quite particular about the quality so some of these sadly are expensive cause they’re US imported but any supplement from UK will do

the two on the right have massively helped with hay fever (its usually so bad he ends up in hospital with closed up eyes )

x

Hey everyone I did post a thread before someone pointed out this one 😆

DD 14 has just been diagnosed and was put on EquasymXL 10mg to start, it’s made he incredibly angry and she was very hyper in the evening when it wore off. She was so angry it scared her so she’s said she wants to come off them. Is this normal for this medication or could the diagnosis be wrong? Thanks everyone.

@TheWitchingHour I would definitely encourage her to try for more than one day - maybe 2 or 3? My DS didn't react like that but we definitely had an issue with hyperactivity at first as it wore off.

That being said, it is definitely possible that it's not the right medication for her.

I would encourage her too - a day isn’t enough to go off. Give it a week, then re-evaluate.
My DS has this afternoon given his top up dose a shot and the evening has gone really well. Not sure how bedtime will pan out, but we’ve had a really good conversation about education beyond high school (though he’s still in primary!), we’ve played outside with the football for a bit and we haven’t argued or had any silly voices/noises/trying to wind up siblings…..so a win for us!
He started out on 10mg too @TheWitchingHour and suffered headaches the first week, but those disappeared fairly quickly.

We are officially starting our upped dose of 20mg of Equasym tomorrow! DS is really excited as he's already loving the new him so much. I'm a bit worried we might get some side effects, but we will see....