Dd12 just started ritalin

[Babystepstoteenager]

Hand hold perhaps… or just some advice.
Following diagnosis for combined type ADHD my DD has started on 18mg ritalin. I has only been 2 days. She cried this evening trying to finish her homework, asking me why isn’t it making a difference yet? She says all she is feeling so far is quite mood swingy, some itchy skin and a bit tired. She is very bright, so she performs very well academically but at a lot of cost - she gets very tired and emotional trying to focus.
She is supposed to start on 26 (I think) mg after 2 weeks.
Can anyone share their experiences of starting on Ritalin? Thank you

Bump! Anyone?

Bumping for you!

We haven't tried Ritalin but my understanding about methylphenidate when first starting is that there is often a real rollercoaster of emotions as the brain is being flooded with a new chemical, tearfulness is common. This does settle and improve but you just have to ride with it for the first week or two. Not a great help but the early days are very much a wait and see period, the brain needs time to adjust to it. Keeping a daily diary for calm and focus can help chart progress. Hope you see a positive difference for your DD soon but do spk to your prescriber close to the 2week mark if you're concerned about increasing dose.

This is helpful thank you. Is there a better adhd forum? With more traffic?

She was upset last night, saying nothing had changed for her. It feels like a bit of a rollercoaster, but very early days 🤷‍♀️

Hi again
Ive had some support from my local ADDISS group in North London, its more face to face meet ups although often during the workng day which is tricky.
www.addiss.co.uk. Worth a call. I also find it quite hard to get much info on meds as every person reacts so differently to them. We are still in the titration period 8 months on and not found the silver bullet yet although there's autism in the mix too which rather complicates things.

Think theres a thread all about ADHD meds on mumsnet in the SN section close to the top.

It may take a while to find the right meds, and in many ways it's not a magic bullet.

DD (14) is on methylphenidate - but Equasym not Ritalin (her consultant said not Ritalin but no idea why other than he doesn't like it). We started on 5mg instant for a week, then 10mg instant and only moved to 20mg XL after a couple of months.

For us it's been life changing but the 'focus' has probably been the part with the least demonstrable difference. She doesn't think it's done much at all - but teachers have noticed a difference.

DD has always had extreme hyperfocus on anything she's interested in and zero on anything she's not. She's now probably got about 50% focus on stuff she doesn't much like on a good day and the hyperfocus on the things she does is the same.

Mainly she just became much more rational and less inclined to fly off the handle and feel life was a disaster over every little thing. She is also less anxious and hyper and generally nicer to live with - and a lot less fidgety.

If you don't have it, 'The Parent's Guide to ADHD Medication' is a really worthwhile read.

Ohcrumbs, interesting to read your post. My 9yr old trialled Equasym for some months but we couldn"t go over 10mg as he became quite spaced out. Does your daughter just have ADHD? I've heard the meds are much more effective if it's just ADHD alone, my son is autistic also which adds another layer of complexity.

Definitely just ADHD (plus severe dyslexia)

She has cousins with various combos of ADHD, ADD, ASD and ASD standalone, and I would confidently say that she has very, very few ASD traits.

The ADHD has been pretty obvious since she was about 4 or 5, but for various reasons we didn't seek a formal Dx until this year when it was becoming more of an issue for her on a number of fronts.

The psychiatrist did tell me he predicted dramatic results - I was expecting very little - but even he was surprised just how well she responded.

I know of her cousins, those with ASD alongside have had either zero response to stimulants or it takes the edge off - so worth taking the meds but they're not really getting a good response, would just be a lot worse without them. (Hence my not going into trying the meds expecting very much).

Thanks everyone
@OhCrumbsWhereNow I find it particularly interesting that you say she doesn’t notice a difference but others do, ie. Teachers.
I think my DD was expecting something to change overnight for her. I didn’t think we had implied that, but it’s not always clear what her expectations are. She sounds similar to your DD in your description: hyper focus when interested in something, 50% when not. The meltdowns are hard, and the impulsivity.
As her symptoms improved did it affect or change her friendships in any way?

I was quite careful not to give DD any information on the medication at all - other than it might make her less fidgety. Being severely dyslexic I knew there was zero chance that she would go and read up on it, and she's a bit suggestible so I asked the consultant not to give her any information on side effects or anything. Thought we'd just see what happened!

So I think she had no preconceived ideas or hopes of what it might do.

It was her best friend at school who noticed first - just said that she was less annoying and distracting in class - and then some of the poor teachers, who have the dubious pleasure of teaching DD the subjects that she has to do for GCSE whether she likes it or not, said that she seemed more focused.

Recently we've started seeing a big difference in terms of her scores in tests in subjects that I had basically got to the point where if she scrapes a pass I'd have been happy. Now heading for potentially really good grades.

With friendships there has also been some big differences - mainly because she's so much more rational and logical - although I do think Y6-Y9 are fairly gruesome for girl friendships. She's a lot less melodramatic and I've stopped feeling that she seems a lot younger than her peers (despite being developmentally/chronologically at the same stage). There has also been a rather toxic friendship around for the last 5 years that I didn't think was at all healthy and where DD was very much at the beck and call of another child.

Any suggestion of this from me would result in utter fury and hysteria. Within weeks of starting the meds DD was suddenly being more assertive and saying 'hold on a sec' and has gone on to complete end things - and is so much happier as a result. I was quite impressed how well she coped as she was under a huge amount of pressure to resume the friendship and dance to this child's tune again.

Meltdowns we have some fairly epic ones when the meds wear off, but moving to XL helped and it seems to be worse for first couple of weeks on any new dose. Starving hungry, hyper and exhausted all in one is always joyous when she gets home from school! We do have instant releases that can be added in to help this a bit - but I've found just gritting my teeth for a few weeks seems to be enough.

Oh Crumbs, hope you don't mind me asking about the cousins in your family who take meds. Are any on non-stimulants do you happen to know? We're trialling a combination of Strattera (Atomoxetine) and Equasym, both very low doses as my son is so sensitive to meds and to some extent focus at school is better and he also is more willing to get his homework done independently. CAMHS' protocol doesn't enable combining meds so we're still trialling privately. What I find hardest to manage though is his highly strung temperament, like a wound up coil at times and can fly off the handle at small things although it's fairly short lived and not constant. The meds seemed to have calmed him down for a while but now the outbursts are back. Are the members of your family with both ASD and ADHD of similar temperaments and how is that managed? Doesn't help I've got a slight auditory sensitivity myself and find the shouting/ screaming painful to my ears!

So...
Cousin 1 - ASD plus ADD plus GAD. The ADD is the least problematic part for them. Very bad reaction to stimulants and no discernable reaction to non-stimulants so currently unmedicated. Could well be that they are just ASD and the things ascribed to ADD are just part and parcel of that.

Cousin 2 - ADD plus GAD. On Strattera but not great results. They don't have a highly strung temperament though.

Cousin 3 - ASD plus ADHD. More like my DD in presentation, but with the additional ASD. On Concerta XL - it's very effective for him but not as good as it has been for DD.

(Cousins are all my side, but different families - the genetics on this are very strong. Strong suspicion that mother of Cousin 3, my dad and I would all get an ADHD Dx if we were to go down that path...)

For me as a parent, the lack of outbursts has been lovely. It's also changed our relationship. Because she's now calm and rational most of the time, I'm much more calm and rational and have stopped expecting a massive row over everything. So I probably ask things in a different way (no longer anticipating a fight or meltdown) and we've stopped pushing each others buttons so much. It took a while for that to happen - I was prepared to prostrate myself in front of the consultant and beg for weekend and holiday meds at the start!

Ahh, I do hope we ever get to the stage you're at with your DD. re. horrible outbursts, worry what he'll be like as a teen! I'm sure I'd feel much less tense inside if our interactions ran more smoothly and it wasn't like walking on eggshells much of the time. Also constant overthinking and anticipating how to avoid triggers, it's very draining and not nice for him at all. This morning it was just because he ran out of time to play before school although it could be anything really. I was so hoping meds would take the edge off that which they did for a while, he was noticeably calmer, but it's like the ASD always finds a way to come out on top in the end.
Is your DD on Concerta XL, I understand that has most of it's effectiveness is later in the day - does it affect sleep though? And how is she when it wears off?
Wow that's a lot of relatives with dx and definitely does lend weight to genetics at play! Suspect my partner would also get a ASD dx too!

DD is on Equasym XL

It's one that is a 20% instant, 80% slow formula iirc (or 30/70). She seems to get a good 10 hours or so on it. She has 5mg and 10mg Tranquilyn for top ups if needed.

She's never been a sleeper even as a baby, so has had a midnight bedtime since she was 2 years old.

The big trigger for getting the Dx done was that she started being unable to sleep at all because her mind was too busy. I started her on 1mg of Melatonin last year and that worked really well. She now has 1mg and 2.5mg gummies to choose from. (I buy them from the US rather than on an Rx here).

When the meds wear off, we have 1-2 hours of nightmare child. Hyper, exhausted and starving hungry and v argumentative. Always worse just after a med break but seems to be settling down more. I think she's now aware of what's going on and so tries to control it a bit.

I totally get what you are saying about the walking on eggshells - that was us for many, many years. Whoever invented methylphenidate has my undying love forever!

So interesting to hear other peoples' stories. The one advantage of the non stimulants is that they work 24hrs so there's no come down although the jury is still out here as to how well they're working. Can barely remember DS pre meds now except that i was desperate to try something to help.

My DD is 6 days in now on 18mg if Ritalin (though actually it is the generic methylphenidate modified release tablets, and I don’t know if that makes any difference) She says she feels exactly the same. I wondered if she is a bit calmer in the day, but she seems to hit a wall around 7pm… tonight she was in tears saying she is so so tired. It is hard to witness, I really hope we are doing the right thing. Feeling nervous about upping the dose this weekend to be honest

We have tried many medications over the last few years for my ADHD/ASD DD. A couple of things that jumped out at me from your post, OP:

• 18mg is quite a low dose, so she may notice more change as you augment it
• you mention 'hitting a wall' at 7pm and struggling with homework after school - the medication will have worn off my then. Can you set aside time at the weekend instead? Different people metabolicise medication at different rates, for me it lasts about 7 hours, for my DD it's even quicker (so we take top-up slow release at lunchtime).
• ritalin does not suit everyone so go back and ask for something different if it isn't working for your child. There are so many to chose from, they just start with ritalin because it's cheap.

Good luck!

The precise brand does make a difference.

The way XL meds are designed are for a percentage of the drug to be used instantly, and then the rest is covered with different coatings that dissolve at different intervals so that the drug is absorbed at different times (more complex than that but you get what I mean). Some brands give a small amount straight away and others give a larger amounts.

I believe some brands were developed in places like Germany to correspond well with their school day which starts early and ends much earlier than others.

The 7pm wall is not uncommon - we have exactly the same. Exhausted, but also hyper and very emotional (and hungry). It took about 4-6 weeks for that to level out a bit more. What we do have a 5mg instants that DD can take if she needs to focus on homework or after school classes. She's on melatonin anyway to help with sleep and has never gone to bed before midnight so it hasn't made any difference to that if she does take a top up. However as she's got used to it - and realised that the 7pm misery is due to medication drop off and not 'her' - we're finding we need fewer top ups.

If you don't already have a copy, definitely get 'The Parent's Guide to ADHD Medication' - it's incredibly helpful for understanding all of this.

@OhCrumbsWhereNow
really helpful thank you, and I have ordered book. Feeling anxious about raising for tomorrow but trying to trust the process. I hope we are doing the right thing

Hi Pompom or Ohcrumbs
Do either of you know anything about Elvanse? Camhs are suggesting we try this for my ASD/ ADHD DS (primarily inattentive) , although our private doc wasnt so sure he would respond well as it starts at 20mg and as it was 15mg of Equasym was causing him to be quite spaced out.
Because we havent had brilliant responses on either Equasym or Starterra was wondering if Elvanse was worth trialling?

Another relative of mine takes this and gets on well with it, but I thought it was hard to get hold of at the moment. Both the drugs you mention are stimulant drugs. Personally I would listen to your doctor, assuming they are a specialist, but even then it will act differently in different children. Trial and error seems the only way, hard as that sounds.

Thanks, had never thought the titration would take this long and do feel a bit disheartened that anything will work that well but such
such is life.....

I know adults who are taking Elvanse - I think it's first choice med for over 18s.

I wouldn't say that they seem any less hyper or any more organised on it at all... but they feel that it is considerable better than being without so I'm guessing that is a positive.

I'm also thinking that if 15mg of Equasym spaces DC then you may find the same thing, especially as that's a pretty low dose of Equasym. But probably worth a try - or trying a non-stimulant.

Why is Elvanse used more for adults do you happen to know?

We are trialling Straterra (non stim) at present, just 16mg. Any more than that DC becomes very irritable, hyper and spacey. Does seem to calm him a bit but does zilch for his focus.

I've started to even wonder if he has ADHD at all and his symptoms can be explained by ASD but his Connors questionnaires, QB Test and all the forms we filled in led the psychiatrist to being pretty sure that was the correct Dx. Could just be the ASD upsets his focus/ attention too.