Completely torn over whether to medicate high risk ADHD child. Advice welcome

[MarvellousMidgeMaisel]

DS8 was diagnosed with mild inattentive ADHD in October, which we had always suspected as he has significant struggles with focus and is falling behind at school.

He is also registered visually impaired with about 20% vision in one eye and 70% in the other. He is very high risk of glaucoma and the stimulant medications can raise ocular pressure.

As a result, the doctor advised us to try an manage his ADHD with other strategies as keep the idea of medication in our back pocket in case we feel we get to the point where we want to try it.

Both types of medication are a risk for him as the non stimulant type can lower BP, he is a fainter anyway and head bumps caused by fainting can put his eyes at risk. (AArghh!) He is also 4th centile for weight.

Fast forward to now, the gap between him and his peers is widening significantly, his behaviour veers between very babyish and aggressive and is starting to have fun made him by other children as they are noticing differences. We took him out for the day yesterday to an attraction and it was ruined by his behaviour.

I am so torn. I just can't bring myself to expose him to anything that could risk his eyesight, but the day to day issues are getting worse and worse to the point that I don't feel he can manage mainstream education.

This is now keeping me awake at night, I just want to help him but I don't know what to do for the best. getting a bit desperate.

Any advice/ ideas welcome.

I think you need to talk things through properly with the medical team so you can weigh up risks and benefits.

with Ds we had to start on the non stimulant medication because of risks for the stimulant and they did work for him. It’s hard balancing the risk factors.

That's really difficult. Can the opticians offer any advice?

Thanks both, his optician says that he considers the risk for his eyes to be fairly low, but he says the risk is there nonetheless.
Both the optician (actually he is a professor of ophthalmology so knows his onions/eyeballs) and the paediatrician have both pretty much put the ball in our court.
The risk is present but if we feel the ADHD symptoms are affecting his quality of life then it is a decision we have to make.

My son has adhd and he’s nearly 7. He’s been on medication for 6 months and it does really help.

however ds doesn’t have any other medical conditions so it wasn’t a risk for us.

i really don’t know what i would do in your situation. Is the risks of the meds affecting his existing condition great, or is it a very very small chance?

I’ve just read your update, how low of a risk though?

theres a big difference between 0.25% risk and a 5% risk for example.

Is it worth considering other possibilities re his behaviour - at 8 with some visual impairment it might not be plain sailing for him.. stress, friendships, ability to participate in sport, how is his learning. Other interventions including some child therapy might be worth a try.. if it is not just impulsiveness from the ADHD or stress from falling behind in school work? Just in terms of balancing risk and using caution.

If you can ameliorate the fairing issues the non-stimulant type might be worth trying - can you teach him to recognise when he is about to faint and sit down?

Otherwise, exercise etc etc

Based just off what you’ve written it sounds like non stimulants might be the place to start but monitoring blood pressure (easy at home) and if he starts fainting more consider stopping.

As someone else has said, it depends on how much the risk increases by, but honestly, the meds can be transformational. It sounds like you have reached the tipping point for his quality of life.

I think the level of risk is key too.
I had an eye procedure recently that carried a risk - I even had to sign something and take a flyer with me. Opthalmologist said he's never actually seen someone have the side effect but it's a risk they have to tell patients about.
I think empties makes a really good point though - his visual impairment is probably having an impact too. I was quite disruptive and chatty at school and found it very difficult to concentrate - turns out I'm actually quite deaf and it hadn't been picked up and was really affecting my behaviour in class as I couldn't hear the teacher so was rather bored and disengaged

Empties is spot on IMO.

It would depend on how high the risks of damage to eyesight were, but gut instinct is I wouldn't unless his ADHD was clean off the ADHD scale and something that management, therapeutic input, and age, would have absolutely no bearing on for the rest of his life.

I would feel that an 8 yr old child worst case scenario was ending up not managing mainstream education could be managed, behaviors out and about can be managed, and future recovery over an adverse start will always remain for him as an adult, whereas if his eyesight was further damaged that's probably unrecoverable, permanent for the whole of his life, and not in his overall best interests.

My dc was on adhd medication from age 8 and it made a massive difference during the school day. However after a couple of years it started to affect their heart rate and they had to have a test at the hospital once a week to monitor it. Eventually the doctor wouldn’t prescribe any more due to the risks. Unfortunately all the problem behaviours returned and school fell apart.

Your child is younger though and I would be concerned about the eye situation. It would depend on the school situation for me. Can they manage in mainstream?

Thanks all.

I've never been given a risk level in terms of percentage. I will ask.
The visual impairment doesn't really seem to affect him too much day to day, although obviously it must do to some extent. We do have things in place to make school easier for him in terms of his vision but I think the brain is pretty amazing at compensating when its something you were born with and don't know any different. But the thought of any risk at all fills me with terror.

@empties yes, we've been down lots of roads with regards to factors impacting his learning, but I've never thought of taking him to therapy. I will look into it, thank you.

Oh I see your child is 8 also. I thought I read 6.

My dc is an adult now and struggling.

@Elleherd exactly my thought process. I don't want to do him a massive disservice by not taking the decision to medicate now, but also, can't take the risk.

@RainRaingoaway01 sorry to hear about the struggles your DC is having.

Yes, I was wondering if what has been diagnosed as “ mild inattentive ADHD” is actually the cause of his behaviour and other issues?
My experience of mild inattentive ADHD ,both in one of my own DC and pupils I have taught, is that they are usually quite well behaved, but need help focusing.
I think I would look into this a bit further before giving medication that could affect his sight.

I’m generally pro medication in kids rather than letting them struggle. But I think I would wait in your case, sight loss seems too big a risk.

...starting to have fun made him by other children... tends to be another way of saying getting picked on. Children have a nasty tendency to reject differences, and self affirm other friendships and group acceptance by who they reject.

You're describing an underweight sight impaired boy who isn't developing social cue related behavior at the same rate as others around him.
Having one ND condition can be a indication for others. Having a physical condition affecting development can stop other things getting noticed and change the age at which developmental differences start becoming more acute. Just a thought. (born from personal experience)

Medicating the ADHD will lower the ability to say it is his behaviors causing others to pick on him, but probably do little to gain him better acceptance.
Work and interventions on developing social skills is more likely to give him that.

I'm sorry if that sounds a bit brutal, and that all this is going on. Bringing up children with additional needs is hard going.

As with any medical intervention, you need to weigh up the risks vs the benefits. If the risks of trialling meds are lower than the potential benefits to his daily functioning, then they’re worth a try.

Although I agree with @Elleherd in that your son obviously has complex needs and ADHD meds aren’t going to stop him from being socially excluded, for example. You also need to consider the impact of meds on appetite considering he’s already small for his age.

Also, days out with ND kids can be unbelievably challenging (I took my two autistic kids out yesterday so I know 😅) and you just need to manage your expectations… or not bother in the first place.

So I’m not sure what the right decision is, really. Is he well supported at school? Or is there room for improvement?

I'm not an expert, just a classroom teacher, but I imagine a primary aged child being medicated for ADHD is actually less likely to injure himself/bang his head etc? I mean, aside from the blood pressure risk. So something to factor in.

If you where to trial the meds , would they be offering increased monitoring of his eyes? How quickly could the medication cause deterioration?

I have two dc who both had adhd meds. One it worked for but the other no meds made a difference.

Re the appetite side effects, there was one medication where dc didn’t want to eat at all. The meds lasted for a school day so when it was teatime they were ok and did eat. The other meds gave them such an appetite they visibly put on weight in two weeks as they could not stop eating and they were slamming doors in the evening demanding food. Unfortunately we had to give up on all the medication and they have always had difficulties even now they are older.