Who has chosen NOT to medicate their ADHD child?

[Peekaboooooo]

I really want to hear experiences from parents who have chosen NOT to go down the medication route for their child. Forums are filled with stories of medication being amazing for ADHD and don't get me wrong, I know it's been hugely helpful for many children and adults but it would be good to get other experiences.

I'm a primary school teacher and I've taught an increasing number of children medicated for ADHD in recent years. I can clearly see the benefits in the classroom but I also see the side effects - low mood and depression, loss of appetite and weight loss, difficulty sleeping resulting in children coming in late or falling off to sleep in school.

My son is 8 and was diagnosed with ADHD at 6.5. He is textbook ADHD. However, for now, I feel like we are managing his symptoms and behaviour at home and school. It can be hard work but we just don't feel that medication is right yet. We've worked hard on his sleep routine and for a child with ADHD I think we've got it pretty good so don't want to rock the boat there. My son is naturally quite a lanky, thin child and a loss of appetite and weight would be very concerning for his health I feel. He really can't afford to lose weight.

In the future, if things get harder, we wouldn't rule out medication but for now we feel that the negatives would outweigh the positives.

There definitely seems to be a pressure and bias out there now to medicate so please share any non medicated stories. As a balance is always good. Thank you.

My children had to go to 18 without a diagnosis and therefore medication. We could have pushed for private assessments but had already broken the bank for the ASC ones and the one attempt for each was a nightmare as we had come out of lockdowns and the teacher/3rd person reports were useless as they hadn’t seen or observed either child. So they were unmedicated, just not through choice.

My DS nearly failed his GCSEs because, despite being very clever, he could not manage his anxiety or sustain focus for the full exam period plus the extra 25% time allocated. Lost his 6th form place and ended up in a local tech with little choice over A level subjects. However, as soon as he started medication his results lifted from C/Ds to A/Bs, which he achieved in the final exams and is now at university doing an MPhys. Meds corrected the course of his life and his self esteem and confidence has blossomed.

My DD did GSCEs under lock down conditions and no meds - papers broken down into mini 1hrs exams, got 8/9s. But when lock down lifted and she moved to a large 6th form, she imploded. Tried 6th form twice, had a complete burnout, spent a year in bed with depression, self harming etc. Then we got the diagnosis and medication. For the first time in her life she discovered how NT people must feel with the muting of the white noise in her head. She went back to college (the same tech as her brother), now nearly 20, and did an access course. She has just completed the first year of uni. The meds are not perfect and it has taken a lot of trial and error to get the right mix, the right doses, and the anxiety is so deeply imbedded after 5 years of unsupported ADHD that she needs therapy and medication for that too. But we are getting there.

I too was diagnosed last year, stress from the kids, menopause and final year of an PhD meant I was really struggling to keep it all together. Since taking the meds I have written the 85k novel and 40k accompanying academic paper. In 7 months. Due to the focus, positive mood effects and a while host of other benefits.

My advice would always be that if you have been bothered enough by the symptoms and impact of ADHD to seek a diagnosis in the first place, then you absolutely should TRY the meds. If they don’t help, then you can explore other options. But every member of my family has found medication pretty life changing, even where it has taken time and patience to get it right.

As an adult who went through education unmedicated..because ADHD didn't exist in the uk.

I can hand on heart tell you that education is so much more accessible to me on meds.

I managed a degree with a lot of support and tears along the way. But the courses I have done since being on medication make me weep for the child and young woman who could have achieved so much very more.

My ds chose not to pursue a diagnosis until he was 18, even though I had steong suspicions from around age 7 or 8. He started medication right away aftwr diagnosis at 18.

He wanted to start taking it because he was struggling in work. Kept forgetting to do things, late back to work after lunch. He's so much better now so taking medication was definitely the right choice for him. He doesn't take it at weekends or in the holidays.

We respected his right to choose for himself but in that time he ended up with a handful of quite poor exam results that did not at all reflect his capabilities. So maybe we should have pushed it more. Who knows.

He has an apprenticeship which suits him perfectly. Moving around all day, busy with his hands. So you could say it's all worked out just fine. He'll get an HnD after a few years if he keeps going.

But his options were pretty limited if he hadn't got this apprenticeship. So you could equally say we did the wrong thing leaving it so late and he would have done better in school if he'd taken medication earlier.

But would he have managed at uni or even full time at college anyway? I think he'd have been incredibly stressed trying to manage the independent workload.

So all in all there's no right answer. But on balance I'm mostly glad we were guided by ds and started late. He's still the same person on medication, just a better organised and on time version.

I hope you find a good solution for your family. Don't be afraid to experiment. You can always change your mind.

Medication isn’t for the rest of the class’s benefit. A parents obligation is to their child only

There is an allergy unit in Australia that has had very good success with calming a lot of autistic traits (sorry if the terminology is not right).

https://slhd.health.nsw.gov.au/rpa/services/clinical-immunology-and-allergy/about Head Dietitian has done a lot of work.

https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/FoodIntoleranceIntroduction-FriendlyFood.pdf

https://slhd.health.nsw.gov.au/rpa/services/clinical-immunology-and-allergy/supporting-our-patients/books

Support can be found here. Included on this site is a list of dietitians trained in the RPAH elimination diet. Some are in the UK, others will domSkype appointments. https://www.fedup.com.au. If you decide to go down this route, you will need a good dietitian.

More support on fb https://www.facebook.com/groups/128458328536 (active) and https://www.facebook.com/groups/380347182034474 (not so active).

Ah yes, those terrible expectations that my son should get an education and reach adulthood with the ability to take care of himself and be a productive member of society. It’s fine if you or your children don’t wish to take ADHD medications but there’s no need to deride people that need them to get through childhood/life/school/work.

My DS is not currently medicated after having bad side effects on methylphenidate. But I'm still glad we tried it. We will try a non-stimulant in due course but if that doesn't suit him he will stay unmedicated. For my DD medication has been life changing.

None of the people in my family have been disruptive students - the opposite, often being model students, in fact as they are engaged, talkative and inquisitive. Its the anxiety, burnout, migraines in ability to cope with exams where the extra time given for co-occurring issues like autism or dyslexia, is actually counter-productive!

One of my children almost certainly has ADHD and we're waiting for a formal diagnosis.

Those of you whose children take it, what sorts of issues does medication help with please? I know ADHD affects people in different ways, and at the moment we seem to be managing (or at least school haven't said we're not) but I'm worried about how good it's possible to be at masking, and so I won't have realised how much they actually struggle with...

I have a child with AuDHD. She is already close to being underweight due to food sensory issues and severe allergies. She is already under a dietitian. I will never medicate her as I want her to grow to be as physically healthy and strong as she can. For me her education is secondary to her physical health. She might get slightly better grades while medicated but the risk of her losing weight and future bone loss is not worth it for me as a parent. If she chooses medication as an adult that’s her choice

There are at least half a dozen medications available and they work their way through them depending on reported sideffects. We started my DC in holidays so that if there were any it was less likely to impact school. They start low dose to minimise the impact and gradually build up and advise taken them with a meal that contains protein and to drink lots. There is other advice specific to each type.

DS and I experienced a little loss of appetite, so made sure we ate well at breakfast before medicating, and then again in the evening when they wear off. You can have short release ones that just last 4 hours, which minimize side effects, but mean that if your child copes with mornings, but less so as the day wears on, they could just take a short release at morning break to take them through to 330? We both experienced headaches the first day we took them (the crash) but never again, even as doses were increased.

We now mix and match - we use Elvanse when we need all day coverage, and top up with short release methylphenidate if in exam season and need evening support; we also often skip the elvanse/all day meds at weekends/holidays now and might d that and just use a short release med if we just need to be alert/focused for an afternoon of lessons or an exam. Ie you can adapt how you take the medication and you are not drugged up all day and every day. It does not change who you are, just allows you to be more yourself, if that makes sense.

DD struggled with nausea on methylphenidate and tried quite a few brands and different drugs. She also now takes Elvanse (Lisdexamfetamine) and copes better. Her autism is aspergers in form, unlike DS and I, which may in part exlain her different reponse. It can impact her sleep (which has been tricky since birth) as she has PDA and will not take her medication consistently and before 9am, so it’s important to work with a prescriber/clinician around your child’s individual needs and personality.

For DD it was not the magic pill she had hoped, but when we found the right one it really did impact her. For DS and I, we’ve responded quickly and with little adverse impact, but every child/person is unique so I would be wary of hard selling it to you. Really recommend trialing it in holidays or on a weekend.

Similar thing happened at a school I worked at. The mother said at one of many pre exclusion meeting the mother said ‘we don’t want to medicate as it might change his personality’. The Deputy Head was brilliant and said ‘that may be, but his personality right now is highly unpleasant’.

I absolutely didn't deride anyone! I even said we may do the medication route for gcse's. But at this time I don't feel like the right thing to do is medication for my family circumstances. It would have been to try and get them to fit into the mainstream system better, instead of getting the education type that meets their needs.

There is a massive problem in this country with us saying this 50% of children can do a thing, so anyone who can't must be disordered. We force square pegs into round holes instead of changing the system make sure more can thrive.