Positive stories of ADHD treatment?

[Smorgs]

DS (6) has recently been diagnosed with ADHD. We are hopefully about to start treatment with medication and behavioural therapy. I swing between being wildly optimistic that medication will solve our problems and despondent that it will just create a whole new set of problems when we deal with side effects.

We are not in the UK so even getting his diagnosis recognised here and getting the prescription medication is a big hurdle.

He's doing school in his second language and is really struggling with reading and writing. I constantly wonder whether to pull him out and send him to an international school, which is in English. I've just been told that he will most likely be told to repeat this year as he's made no progress. He's a bit more on the attention deficit side than the hyperactive side, but he can be very impulsive and a bit too in-your-face.

In my weak moments I just see him floundering through the system forever and never leading a really fulfilling life.

I suppose I just need to hear some positive stories about children who have struggled with ADHD but have improved with treatment. Thanks

Anyone with anything positive??

Two people in my family are on meds for years and it is all absolutely positive. I ' ve seen a few long thread on MN, maybe in SNchildren about medication full of posts about positive experiences, so maybe you could search if you are interested.

I am not sure where you are coming from, the very premise of your post suggests that meds lead to negative experience. I don't understand. The side effects are very mild and fade in comparison to the benefits. Yes, DS is not very hungry during the day but raids the cupboard at 7 pm when the dose wears off. So what? He is tall and well nourished. The rare cases of growth suppression could be genetic or other family circumstances could be the reason. If you feed your DC and have reasonable meal routines, it shouldn't be a problem. Yes it makes falling asleep difficult if taken late in the day, but this is part of managing meds appropriately. You need to plan to take the tablet in time for the dose to wear off completely 2 hours before bed time. It is all up to you.

All medication has side effects, by law they are required to report possible risks. If you read the notice, you can die of paracetamol and ibuprofen. But you don't ask about positive experiences of fever and pain relief...
There is a lobby of ableistic attitude to ADHD and medication and it does not really help our DC. The real risk is of leaving ADHD untreated, that has real consequences for DC.

With methylphenidate it is important to avoid the dose phasing in and out rollercoaster by timing the doses very carefully. This requires discipline, organisation, OR the continuous release medication which solves the problem. Usually they keep you on fast acting tablets for a while to see how it works, the evidence of rollercoaster is recorded and you can ask for slow release.

This said, with my DC ADHD was not a problem with learning a second language. If your DS is so behind at school, other factors could be at play, but you can only really start to untangle this after you have ADHD medication sorted. The school situation really highlights that you can't wait with meds IMO.

I don't know OP but my 6 year old is being assessed for ADHD too and I'd be terrified to medicate him for it. Cakesandtea, I'd be worried that it would suppress his personality and emotions, make him feel detached from reality, that kind of thing. Like a chemical prison. Is this not the case?

Like a chemical prison. Is this not the case? - No, there is no such thing at all.

[assuming appropriate diagnosis and medication by appropriate professional]

I'd be worried that it would suppress his personality and emotions, make him feel detached from reality, that kind of thing

??? But methylphenidate does nothing of this sort ! This is not at all how it works. Really, believe me and read the notice, read reputable sources on internet. This is very surprising for me. Both DC started on meds 1O years ago and at the time there was no such nonsense information floating about. If your doctor said this, he must have little experience be a charlatan or talks about a wrong medication, which is charlatanism all the same. I never heard that before.
(If they want to prescribe an antipsychotic, I don't know anything about that and I would refuse that for my DC. ADHD is not a psychosis. Methylphenidate and Strattera are meds for ADHD)

Methylphenidate makes neurotransmitters in ADHD brain to work properly, like they should in normal brain. In ADHD brain it does not has effect of a stimulant that it would have on a person without ADHD. So it is not 'drugging', nothing of this sort. And it does not modify the personality and emotions. It cannot chemically, biologically it is not what it does. It has the purpose and effect, trust me with real experience of more than 10 years, of being more able to attend to the reality, to better respond to it, to have fewer incidents which do upset and create adverse consequences. There was a thread recently in Secondary education where in the middle/end of the thread someone was telling some DC with ADHD were not officially diagnosed/medicated to prevent stigma but grew up being totally erratic, rude, failing at school, developed antisocial attitudes and did become failures in many ways. For me it was an example of parental discriminatory prejudices ruining DC' future by denying the diagnosis and appropriate medication. The real risks and consequences are in not giving medication. ADHD does create problems. Medication mitigates them.

However, my DS also has ASD in addition to ADHD. When we started on meds, DS's atypical reaction to people, interactions and the whole autistic symptoms became apparent, which was news to teachers and to us. Some of them felt he was looking a little aloof, 'zomby' like compared to his hyperactive self. But that was his autism showing up, becoming apparent without being hidden by hyperactivity. It was not him 'having suppressed emotions and being detached from reality'. It was his autism idiosyncrasies, symptoms. The doctors told us this would happen, this is how it enabled to officially diagnose ASD, because without meds the picture was muddled.

Again, with long term and extensive experience of ADHD and methylphenidate, I assure you, it mitigates symptoms, enables to do what DC are capable of, enables to function closer to their potential, but takes nothing away it terms of personality and control. Trust me.

Thanks cakesandtea that's good to hear your DC have had positive experiences. My post wasn't meant to seem anti-medication - far from it. I can't wait for him to start meds but im worried I'm pinning all my hopes on it transforming our lives when it might not. All the literature I've read and doctors I've spoken too say it will, and I have faith in them, but I'd never heard any first hand experiences. The posts I've seen on mumsnet all talk about the difficulties of getting the balance of medication right. The side effects worry me just because DS is very slight anyway and can't really afford to lose any weight. He goes to sleep brilliantly at the moment (although he has a tendancy to wake in the night) and I'm worried the meds will change that. But exactly as you say, the alternative of having him unmedicated and falling further and further behind and becoming more oppositional and defiant are far worse.
Thanks for sharing your experience.

It suppresses appetite to some extent, not completely, they still can and do eat, when the dose is active. When it wears off DC tend to catch up on eating as it were, so you basically need to feed them later in the evening. We dine at 8 pm.

Concerning 'all hopes' and solving 'all the problems', as I said with meds it might become apparent that there are additional problems that were hidden before, that might not have easy solutions. You have to proceed step by step. But methylphenidate really mitigates ADHD visibly and fast.

DD 16 started on meds about 18 months ago. She was a late diagnosis. She started on ritalin then tried a couple of others. She is now settled on Elvanse long release.

She was due to get middle ish GCSEs, the meds though enabled her to concentrate and work super hard. She ended up with 2 x 9, 6 x 8, 1 x 7 and a 5. So in old money that is 2 x A*, 6 x A, 1 × A and a C.

DS was diagnosed at age 8. We've not scared him in meds yet but are going to need to soon. He is gong to need it in the next 18 months or so as he is faking behind a bit. He's very bright but just can't apply himself.

I wouldn't hesitate to recommend medication. It's helped DD socially too.

That's great to hear CatherineCawood thanks

Sorry for terrible spelling errors! I was on my phone.

Thanks for this thread. My daughter has just been diagnosed and we have the medication or not decision to make. We are minded to do so. She also has epilepsy but we received assurances from her neurologist.

I too feel like you: I can't wait for him to start meds but im worried I'm pinning all my hopes on it transforming our lives when it might not.
I think we will have a lot of learned behaviours (on both sides!) to untangle once the medication makes its impact.

learned behaviours on both sides I think you've hit the nail on the head there.
The books I've been recommended by our phycologist are:
Dr Christopher Greens book, Understanding ADHD
123... Magic by Thomas Phelan
Easier, Calmer, Happier Boys by Noel Janis Norton
Russell Barkley's website

Unfortunately yesterday we were told that DS is being asked to leave the once-a-week English school he goes to with immediate effect. The reason being he is not accessing the curriculum and his behaviour is unsettling for other students. He's not violent or aggressive, he just can't sit still and listen for long periods.

It's so frustrating as he is a week away for his appointment for medication. He is devastated too as he loves going there.

How upsetting, Smorgs!

I've seen a few of those books mentioned in the literature we've been sent, though if it is the same Christopher Green as Toddler Taming, not sure I want to read that one. 123 Magic pops up a lot though.

My son has ASD and is to be assessed for ADHD shortly. He has very poor concentration and has trouble keeping still so is in poor sets at school. I've sped read this thread, if he was diagnosed would meds bring his autism out further? Just concerned about the zombie statement above. I'm really grateful for threads like this.

@BGD2012 medication shouldn't make them zombie like if it's at the right level. We have started low and slow with our boy and don't experience this. Our boy has a diagnosis of ADHD, he has a lot of autistic traits though that are more apparent now that his ADHD is well managed, they have always been there, the medication hasn't brought them out further.

Thanks for your response it is good to read other people experience.

I think if you have WAY WAY too high a dose a child might be "too passive".
Our consultant did also say if DS has any ASD symptoms (there has been a query about this) they may show through - not get worse. So they have always been there.
We have recently started on methylphenidate short acting and there was some improvement in the daytime but the bounce back at the end of the school day has been awful.
The consultant has now changed to a slow release but we couldn't get DS to take the tablet reliably so we were crushing it into juice, and the consultant has switched us to dexamphetamine as he said it has a slow release form that can be takin in juice. I'm very nervous about this as it's a different drug so I feel like we're starting from scratch, if we were seeing improvements with methylphenidate I would really have preferred to go to slow release with that one.

Just to clarify on 'zombie':

Sorry for creating a misunderstanding. No, my DS didn't get zombie like and his ASD symptoms didn't get worse. Simply his ASD symptoms became apparent and recogniseable as ASD related when hyperactivity was 'removed' by the medication. Normally DS was 'lively', very hyper, very talkative, excitable, attention seeking. This is how the teachers experienced him. It was detrimantal to DS learning and to teachers ability to manage the class, so they also complained about it. When suddenly these behaviours disapeared when we started medication at the full dose, these 'lively' behaviours subsided, so there was a perception of sharp contrast amongst the teachers. From a hyper talkative attention seeking disruptive child to a child that sits still and quiet, you see. (some hyperactivity and attention seeking reappered a year later and every time you need to review the dose and every time in the evening hen the medication is out of his system, so it is temporary dose in the blood related). One teacher felt she was missing the old 'lively' DS and described his new non-hyper self as 'zombie like' in comparison to the hyper DS, but he was not that, it was just his ASD became apparent, for example, his inconsistent eye contact when he was sitting still became apparent, while before it was perceived that he couldn't keep eye contact because he fidgeted all the time. I hope this makes sense.

Thanks for your response cakesandtea it is very helpful. Can I ask how old your son is please?

Hi OP, and welcome to the wonderful world of ADHD! My DS will be 10 this year and was diagnosed 3 years ago. His ADHD (combined type) is severe and I therefore had no qualms about starting him on medication as he was effectively a danger to himself and was really struggling. Before meds he would beg me to make his brain 'be quiet' and was getting very distressed because he realized that he should be acting differently but just couldn't. I did a lot of research on the pros and cons of medicating and for us, it was an a no brainer. An ADHD child has a chemical imbalance within their brain and sometimes this needs to be corrected with medical intervention. It's a crude comparison but if a diabetic does not produce insulin, we give them medicine to replicate this and help them to live their life. There are many, many anecdotal stories from adults with ADHD who describe their medication as a game-changer and wish that their parents had given them medication earlier.

There are many misconceptions about medicating for ADHD. There are side effects and it is trial and error to find what works best for your child but for me the benefits far outweigh everything. There are many options too - the stimulant meds and also the non-stimulants that work in a slightly different way. My son is now on his 4th medication and we've found a relatively happy balance. He also has other dx's so balancing everything is hard!

Good luck on your journey x x

We're two weeks in and things are very positive here. Still some flash-points behaviourally, but life is a lot calmer, and I think school has improved too, based on the three (3!) certificates DD came home with on Friday. We took the first increase after about 10 days, rather than a week, mainly as we were still working on DD taking the pill without issue, and will increase further maybe in a few days. Back to the Dr next week for the first check up.

Hi all, just a quick query:
Does anyone use slow release methylphenidate?
If so, is it a capsule, a tablet, or what?
If it's a capsule, does it say you can open it up?
We started on short acting methylphenidate and DS was crashing after school.
But we were crushing it up in juice as DS was struggling to take the tablet (as in, refusing, spitting it out etc. not as in, trying and reluctantly failing).
We didn't want him chewing a slow release tablet so the consultant switched him to a slow release dexamphetamine that you can mix in juice.
But I'm concerned this one isn't actually helping (though we are on a low dose as it's still the first week).
We did feel that the methylphenidate WAS doing something. The consultant says there isn't a methylphenidate slow release that you can mix in juice but I thought I read that there was.

@drspouse Our boy started on Medikinet XL (Methylphenidate) which was a slow release capsule. He had no problems with swallowing it but his consultant did say that it could be opened and sprinkled onto a spoonful of yoghurt. He said that as long as it isn't chewed then it shouldn't effect how quickly it's absorbed.

Right I think that is what we need.
We will try one or two more weeks on this one and maybe up the dose but if it's not working (or things continue to be completely explosive) we will ask to switch to that.

I'm anticipating moving to a slow release soon, but not sure of the exact type yet.

Really not having a good time of it...
1st week of slow release: DS didn't seem any better but wouldn't go to bed, on a half dose.
2 nd week day 1 didn't go to sleep till nearly 11 on a supposedly full dose (but lower than usual full dose).
Day 2 we tried a half dose again and he had a fit (he has epilepsy and it can lower the effectiveness of his meds). Consultant says please try the full dose for a week.
Day 3 today he threw up in the car. I could tell it included his epilepsy meds. Not sure if he absorbed the ADHD meds but it was too late to give them again. DH has just taken him into town e.g.and he's thrown his lunch in the bin and cried.