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!

We had tics early on especially as we upped the dose quite quickly

we increased vitamin support (magnesium, B6) and it totally disappeared

james Greenblatt - US psychiatrist- recommended the above as meds deplete magnesium

you might want to try?
if that’s the reason behind it it’s very easy to fix x

Interesting re stomach ache. My son seems to be getting stomach ache as the meds are wearing off/have worn off. So much so that yesterday he was in tears at school. For now I have stopped his XL version and returned to fast action as this seems to have less side effects.

I agree it is such a minefield

Definitely sounds as though a decrease for both our children may be the right way forward. Got to be worth a try before trying different meds.

Interesting re tics.

What sort of thing are people seeing?

My DA has started banging his chest (!) and chewing his tongue.

Seems worse when he's off meds and never was an issue before.

@LoveMyADHD
I will look into the magnesium thank you.
I hope they ease off. His dad is against medication (but hasn't offered any other alternative on how he will help me and his sons symptoms 🙄) so I don't want an "I told you so" if this carries on.

@WesternEasterner
Oh tongue munching sounds very painful.
My son seems to have a thing with his eyes; he opens them wide (bulges I think) rolls them. Constantly blinks, looks left and right. All very fast but very noticeable, kids at school have started asking him why he's doing it

Been a while since I’ve posted, but DS is doing ok in school despite not being allowed to up his dose due to low weight. His high school does set them for most subjects and I do find this frustrating (as does he). He’s pretty much set 4 across the board based on SAT results (out of 6 sets) so fairly low down the pecking order. He has heard of some kids being moved up and down sets since Christmas, but not many really. Year group of 330. He himself (thankfully) wants to do well, but finds it hard to concentrate when the classes are noisy, which seems par the course. He tells me that virtually everyone in his set has adhd or dyslexia and the classes aren’t particularly calm places at times. Also, if there are tests then there does seem to be disruptions, noisy chairs, tapping pencils…..anything that distracts him! So it feels like a continuous circle - wants to do well, needs to do well in half term tests, gets distracted with noises, doesn’t do well…..doesn’t get promoted to next set. So before Christmas I told him we’d focus on one subject and see what we could do.
He’s done really well and scored highly in both tests he’s sat for that subject since we made the plan, that he got told yesterday that he’s being moved from set 4 to set 2! I just hope that he likes the teacher after half term and settles well. Then we can focus on maintaining that subject and boosting another. End of March for next check in regards meds…..hopefully he’s gained weight!

Quick update from me just to say it’s been a crazy time since Christmas in all areas of life and I’m hanging on in there but not been able to post much.

We seem to have the weight thing pretty much under control now and I think the long med break over Christmas helped the medication be more effective.

Hope everyone is ok and we are halfway through the school year now!

Anyone else dealing with the Sunday night scaries before restarting school again tomorrow?
Think I’ll be dealing with a full on meltdown in the morning. He’s doing ok in school, trying hard, but I think the social aspect of it is very hard for him.

Yup! It’s been a week of half term here as well so extra stress tonight. For my DD, it seems the idea of school is worse than the reality. Once she’s there, it’s not so bad. She’s almost 18, I don’t know when she’ll understand that.

@MissHavershamReturns Hang on in there! Interesting that a med break helped.

Yes @Hapagirl48 I think it’s the case for most of them, just the end of a holiday is always worse than an “average” Sunday night.
At least he’s getting dressed at the moment……with an awful amount of noise!

The anxiety of going back to school after a week off hits our house too…

Just an update.
I've been reading everything that has been posted and honestly I take my hat off to all of us. This journey with our kids is one hell of a rollercoaster. I genuinely think I've lost hair as a result of the stress.
So my DS is 6, and is on 20mg of Medikinet 6 days a week. We give him some breaks on school holidays but nothing consistent. The crash at 5/6 ....till bedtime can sometimes be very very monumental...like he's an emotional wreck but a bit of Melatonin and 10hrs sleep definitely helps. He's gained weight and grown surprisingly in the 4 months he's been medicated. I'm not doing anything extra if I'm honest, I blame it solely on his dad's genetics. Which I am grateful and lucky for.
In terms of the medication he can engage all day almost with curriculum input and its been nice to see the change. However the mainstream environment is still a huge impact on his ability to learn.
This has been the reason for "radio silence" as I battled against Surrey Local Authority (for the last 3 years) but the last 2 months have been intense and we've had to use a Education Solicitor to basically push through an in transfer move to a COIN. End of this week the school we want named have said they will accept him. I assumed after years of getting him all the support he deserves and the struggles, countless emails and threats that hearing I'd succeeded would have brought me nothing but pure joy, and actually all it did was bring a release of tears to actually think that finally he'll be in the right environment. There is still so much more obstacles to jump but this week I raised a toast to me. To my utter relentless. And I raise one to ALL of you because without you, your children would be forgotten, lost and unheard.
We all deserve a MEDAL!
HAPPY SUNDAY

Just thought I'd ask a question about homework. How do you handle it at home with SN child?

My son is 12 in year 7 and ADHD. Still tweaking the medication
The homework he gets is a lot and half of it he doesn't have the book or cannot remember exactly what was said in class.
He's getting a lot of detentions for not doing them (even if I provide a note to say he doesn't have the book/link doesn't work on the app etc)

I do try but the dramas and fighting that comes with it just makes me so frustrated. The ones we can do get done but some he just can't get to grips with and some I've even ended up doing them myself so he doesn't get in trouble. I've emailed the school and asked them to remind him to pack his book or help him and they reply "they can't help all children"

Any tips?

Hiya, it’s so hard so please take a breath and take time to appreciate the things he does very well. As he has a recognised disability ADHD the school legally have to make adjustments to support him. Ask for a meeting with Senco but don’t worry if you feel they’re not really ‘getting it’ as I’ve never met a Senco yet that’s very informed. Also speak with SEN team at your LA and ask whether he needs additional support that could be met via EHCP. The education inclusion team at your LA may also be able to advise. Sounds awful but sometimes we just have to make a lot of noise to ensure of little ones are having the smoothest ride possible school.

Sorry to jump on and ask a question, I've been so busy lately but I will come back and check on everyone!

DS is on concerta 18mg and then methylphenidate 5mg at lunchtime. We have been on this since November and it's fine, except for the last 2 weeks. Since January I've been giving the methylphenidate every day 12pm; before it was an "as and when" drug but homeschooling means we need it everyday.

This past month, the methylphenidate I've had to restrict and go back to "as and when" as my MIL lost a strip when he went to hers for the weekend. That was 10 tablets gone out of 30, and we were going on holiday at the end of the month. The past week he's had none, and behaviour has really escalated. We are now giving it everyday again, I started that on Monday.

Would this have an effect on DS, that we have gone from everyday to barely having it? Is this withdrawal?

DS's teacher (he's on a reduced timetable... still) are blaming me and the fact DS has been playing on his Nintendo switch more. I know, ridiculous.

Any help? Miss you all. I'm back at work after maternity and I feel so lost.

Hi @AndrewGarfieldsLaptop sending you support on coming back from mat leave. I’m so sorry to hear you are finding it hard and I hope it gets easier for you as you get more used to being back.

In short yes I think it could have a big effect. My ds has a lunch time methylphenidate immediate release top up and without it gets very overexcited and loud. Can also impact sleep. At weekends dp and I have looked at each other if he’s wild about 4 pm and realise from that that we forgot the med.

If tabs get lost surely gp should be willing to prescribe early if you tell them? I would certainly hope so.

Could half term and transitions with you going back from Mat leave also be relevant here? My ds really struggles with change and even starting school holidays (which he loves) and certainly going back after them is a big thing for him. He has AuDHD though, whereas I know some dc on here just have ADHD only, so may vary.

Please don’t let negativity from the teacher make you feel bad - you are an amazing mother and might have needed to do a med break over Half Term on medical advice anyway. We wee certainly told to.

@AndrewGarfieldsLaptop nice to see you again. It's a hard journey we are on, you have my every sympathy.

We do the same top up as you, the 5mg of methylphenidate. When we were on 20mg we topped up every day. Now we are on 30, we only top up occasionally, maybe 1/2 days out of 5.

We absolutely notice a difference at about 5/6pm when the meds wear off if we haven't topped up. But I don't think it's withdrawal, I think it's just a harder come down from the 30 to nothing. I believe the 5mg makes it a slower journey back to 'normal' and this makes him calmer. He's definitely much more frantic when we don't give it.

Hope that helps 😊

Hey all

hope everyone is doing amazing (or getting by 😂)

@AndrewGarfieldsLaptop definitely GP as suggested, they don’t let people get by without meds that’s be brutal!

we re definitely having a regression on our side, DS is bigger and with puberty coming in it’s not looking great! Already increased to 40mg he’s kind of better but not like before so we have a doctor call on Saturday about further increase ….

out of interest has anyone here tried strattera? Or even considered or discussed with your doctors?

sending love x

@AndrewGarfieldsLaptop we always find DS Is affected by changes to meds for a spell but many have breaks and are fine - could be a number of things couldn't it. Mine has console time in the hols more than usual as do most kids!!

@LoveMyADHD you sound like your where we were, 30mg was working brilliant for almost a year then we had a horrendous 6 months leading to a first exclusion for a day, and now on 40 it's better but not as good as before. Interesting to see what they advise you.

oh dear …. What did your doctor say?

please remind me how old is DS? Wondering whether it’s a puberty issue

have you tried supplementing with quick release morning and midday ?

Hey everyone. God I'm so stressed. I'm not sure what is causing this change in behaviour. I'm back at work but DS truly believe that I was at work during maternity as I usually work nights! Switch time has increased, and that's because baby sister is needing me more (1 in a few weeks!) so he gets extra time. Also it could be the fact that we still haven't heard from the specialist school and DS keeps asking when is he going.

God it's been hard. We are currently on holiday in Wales at the moment and I'm trying to enjoy it and failing!

It's so hard. I am at a loss what causes our increase in symptoms, generally being more tired, out of kilter etc. but there is often no real explanation.

@LoveMyADHD no we don't, mainly as the school cannot seem to administer a top up reliably. So we've had to stick with a one a day.. he's fine at home in the evening generally it's school that presses all his buttons

(Could well be puberty he's 11)

@HauntedPencil mine is 11 too. They were insisting at school
testosterone is very much a factor for regression

i ll ask about strattera when I see doc.. apparently it does wonders for stress anxiety etx and not much impact on growth!