Can anyone give me hope by sharing positive experiences of adhd medication?

[coodawoodashooda]

Too much has gone on to post here but my dc is not being successful at school. It is awful actually. I've finally relented and agreed to adhd medication. Can anyone give me any examples of how this has worked for either yourself or someone you know?

My ds has severe ADHD and has been on meds since he was 5.5 years old he literally can't sit still or concentrate on anything for more than 2 mins without it. He started off on Equasim xl it has an 8h effect (when at the correct dose) we started at 10mg and slowly upped it as he got bigger/older roughly 10mg per 2-3 inches until last year when he had maxed out the dosage and we had to move to a tear 2 medication (Lisdexamfetamine) which has a 13h effect (supposedly we've only ever got 10h max) we started 10mg and went up in 10mg increases every 6 weeks until we got the right dose. I'm going to be honest and say the change to the new meds was hell as even ds new he was massively undermedicated and even said so himself but now we've got the correct dose he can function at school again. We have been very lucky in that he has never had any side effects and actually sleeps a bit better when he's had his day time meds than without. He's 12 now and getting organised in the morning is still quite difficult as his meds take about 30-40 minutes to kick in properly but that's ok we just get up early and I have to keep reminding him to do things like getting dressed as he forgets part way through.
The main piece of advice I'd give is to make sure that they eat breakfast before they take the meds

@Hoardasurass

My ds has severe ADHD and has been on meds since he was 5.5 years old he literally can't sit still or concentrate on anything for more than 2 mins without it. He started off on Equasim xl it has an 8h effect (when at the correct dose) we started at 10mg and slowly upped it as he got bigger/older roughly 10mg per 2-3 inches until last year when he had maxed out the dosage and we had to move to a tear 2 medication (Lisdexamfetamine) which has a 13h effect (supposedly we've only ever got 10h max) we started 10mg and went up in 10mg increases every 6 weeks until we got the right dose. I'm going to be honest and say the change to the new meds was hell as even ds new he was massively undermedicated and even said so himself but now we've got the correct dose he can function at school again. We have been very lucky in that he has never had any side effects and actually sleeps a bit better when he's had his day time meds than without. He's 12 now and getting organised in the morning is still quite difficult as his meds take about 30-40 minutes to kick in properly but that's ok we just get up early and I have to keep reminding him to do things like getting dressed as he forgets part way through. The main piece of advice I'd give is to make sure that they eat breakfast before they take the meds

Thank you for that. Why is it important that breakfast happens before the meds?

@Simonjt

No thats fine, but focus and time keeping goes to shit. I was off it a few weeks ago and I was supposed to be tiling our bathroom, instead I spent about two hours pissing about with the little tile spacers. Or I can do routine, so I wouldn’t get up, run, shower, breakfast etc, I’d just do whatever I fancy and not really even comprehend that I may be making myself late for something. My memory can almost be a bit foggy, as I don’t really listen when I’m not medicated so I don’t remember having conversations with people.

I have type one diabetes and I’m not capable of actually managing it when I’m not medicated as I just won’t test or I’ll struggle to workout what I’ve eaten, how much insulin I need etc.

I can get hyper focused on things, on my last medication break I took up crochet and I had to be severely nagged to so anything else.

Thank you. It must be so frustrating. I can't imagine.

@coodawoodashooda

This is so wonderful to read. I just cannot imagine. The last few weeks have been awful. He has basically given up and doesn't even hide the fact he's not going to try. Its awful.

You have my sympathy OP. Unfortunately we had to hit rock bottom before DS realised what was at stake if he didn’t take responsibility and choose to manage his symptoms. I told him he didn’t have to take his meds, he could try and manage it through a quite rigid routine of an excellent diet, exercise, bedtime routine, limited screen time- managed by me. Doing nothing was not an option I was going to accept. He decided to try his meds. It also helps that I got him into a local support group for children with autism and ADHD and he feels really secure there and not like the only one who is different. You could see if there is anything similar near you, your DS might feel differently if he meets other children who have ADHD.

That's a really good idea.

Out of interest, what did rock bottom look like?

Concerta XL (extended release, over 6-8 hours if I remember correctly) here.

On a day without it I'm forgetful, disorganised, struggle to use my coping tools (diaries, alarms, a whiteboard in the kitchen). I can get 'stuck' in dissociative executive dysfunction black holes where I can't do anything, even things I need like drinking water or going to the toilet or brushing my teeth. I struggle badly with binge eating.

When I take them, it's not a magic cure, but instead of sitting on the sofa for 2 hours getting a dehydration headache but being unable to just get water, I can just...do it. Instead of avoiding work tasks which seem boring or complicated instead of the quick, dopamine-rich 'win' tasks I like being able to tick off, I'm able to start things and staty focused. I don't binge eat. I remember to put important things in my diary. It makes the other symptoms easier to bear.

Finding the right dose and medication and timings can take a bit of adjusting (e.g. I now take 54mg in the morning and 18mg at lunch, which sees me through til bedtime without a big emotional and hangry crash at 3pm) but it's 100% been worth it.

He had not taken his meds at the weekend so his mood was already low when we got to Monday morning. He refused to take his meds Monday morning and went into school, his 1:1 CA was off sick and no one could replace her so he was left all at sea in class. Recipe for disaster. He started acting out in class, being silly to the point he had to be removed as they couldn’t carry on with the lesson. He has a very extreme fight or flight response when he feels he is in trouble and he ran. Luckily they managed to contain him in school and prevent him leaving but he was running round the school inside when I arrived and refused to come with me. Teachers couldn’t touch him to catch him and when I tried to he attacked me very badly. He was in a total state of unawareness at this point. Didn’t know what he was saying or doing. He was on the floor in floods of tears. Police were called. Took him to A&E as an acute mental health episode. He refused to be seen. Got him to agree to go with my parents where he stayed for a week. Refused to go back to school for the last 5 weeks of term. Cahms refused to accept it was a mental health emergency and wouldn’t see him urgently- just their normal waiting list which turned out to be a 3 month wait.

^that was the rock bottom incident in response to your question OP

@MrsRobbieHart

He had not taken his meds at the weekend so his mood was already low when we got to Monday morning. He refused to take his meds Monday morning and went into school, his 1:1 CA was off sick and no one could replace her so he was left all at sea in class. Recipe for disaster. He started acting out in class, being silly to the point he had to be removed as they couldn’t carry on with the lesson. He has a very extreme fight or flight response when he feels he is in trouble and he ran. Luckily they managed to contain him in school and prevent him leaving but he was running round the school inside when I arrived and refused to come with me. Teachers couldn’t touch him to catch him and when I tried to he attacked me very badly. He was in a total state of unawareness at this point. Didn’t know what he was saying or doing. He was on the floor in floods of tears. Police were called. Took him to A&E as an acute mental health episode. He refused to be seen. Got him to agree to go with my parents where he stayed for a week. Refused to go back to school for the last 5 weeks of term. Cahms refused to accept it was a mental health emergency and wouldn’t see him urgently- just their normal waiting list which turned out to be a 3 month wait.

That sounds horrific. Im so sorry that happened to you.

It really was horrendous at the time. I couldn’t see how he would ever be back in school. But he went back happily in September and now he is doing so well, he even has a friend. A proper one who wants to spend time with him. He never had that before. Never!

@MrsRobbieHart

It really was horrendous at the time. I couldn’t see how he would ever be back in school. But he went back happily in September and now he is doing so well, he even has a friend. A proper one who wants to spend time with him. He never had that before. Never!

That sounds absolutely wonderful.

OP regarding food and medication please follow what your doctor advises.

All medications are different and the ones my son is on have to be given before he eats breakfast, others might be afterwards.

@coodawoodashooda eating before taking the medication lines the stomach and helps avoid nausea and if the meds interfere with their appetite (which can happen but only whilst the meds are in their system) they've atleast had food. If the meds do affect appetite having snacks like nut bars after school and a good dinner slightly later than normal helps aswell

It’s best to eat breakfast before meds kick in because they can suppress appetite. His nurse monitored his weigh quite closely for the first year as he was dropping down the centiles. We made sure that he had a really good breakfast as he often didn’t eat much of his small,packed lunch. By the time he’s gets home from school, med have worn off so we do s good snack and he’ll have a decent sized tea too. And supper 😅.

Yes to eating loads in the evening catching up from nothing in the day!

My DS has been through the ringer with friendships. He had loads aged 3-6 cos he basically will play anything anyone wants and has loads of energy to run around. It got a lot more complicated as he got older cos he was so emotional and unable to talk well and express himself.

He has now settled more or less with 2 good friends and a wider group of pals. The 2 friends are fairly understanding of his emotional outbursts. The wider group are ok but aren't as understanding. Only the 2 friends know about his adhd. Its not very accepted where we are (France)

Me (aged 40!) - diagnosed at about 25 and take it on and off. It helps a lot as I am so lacking focus. I don't take it when working structured hours but take it now my 1yr maternity leave became semi-permanent (Born July 19 so covid baby and stayed home to reduce risks. Going back when she is 3).

I worked with kids with adhd students (grammar - it IS possible! I went there myself many years ago and returned to work there) and gave the meds from a locked cabinet myself. For what it's worth they all took the short acting ones like Tranquilin (methylphenidate) but perhaps age related. I take those myself. Off licence to adults but they give me them with monitoring and they are great. Saw it help a lot of kids.

My own eldest shows signs of adhd (or add, like me, no hyperactivity) and I am reluctant to go to meds myself at her age so I fully understand your concerns. Speak to your adhd team about it again if you need to, they are usually great.

@Colleen92

Me (aged 40!) - diagnosed at about 25 and take it on and off. It helps a lot as I am so lacking focus. I don't take it when working structured hours but take it now my 1yr maternity leave became semi-permanent (Born July 19 so covid baby and stayed home to reduce risks. Going back when she is 3).

I worked with kids with adhd students (grammar - it IS possible! I went there myself many years ago and returned to work there) and gave the meds from a locked cabinet myself. For what it's worth they all took the short acting ones like Tranquilin (methylphenidate) but perhaps age related. I take those myself. Off licence to adults but they give me them with monitoring and they are great. Saw it help a lot of kids.

My own eldest shows signs of adhd (or add, like me, no hyperactivity) and I am reluctant to go to meds myself at her age so I fully understand your concerns. Speak to your adhd team about it again if you need to, they are usually great.

Thank you everyone. I feel so hopeful. It is still difficult to understand though. Do you wake up on day one, take the meds, get on with things and then suddenly realise how productive youve been? I guess i just cant fathom how it must feel internally.

We honestly noticed a difference from the first day at 5mg. He's now on 30mg Equasym XL (he's 10) and it's like it's freed up the real him inside. Life changing, genuinely.

Adhd medication is ab-so-lute-ly brilliant. DC was on track for a lifetime of special school and now they are heading towards university with ease. A family doctor said to me early on that many men in jail have undiagnosed/untreated ADD/ADHD, which was shocking but also made sense, seeing the direction DC was going in without meds.

@teleskopregel

Adhd medication is ab-so-lute-ly brilliant. DC was on track for a lifetime of special school and now they are heading towards university with ease. A family doctor said to me early on that many men in jail have undiagnosed/untreated ADD/ADHD, which was shocking but also made sense, seeing the direction DC was going in without meds.

Omg that is heartbreaking.

@PenguindreamsofDraco

We honestly noticed a difference from the first day at 5mg. He's now on 30mg Equasym XL (he's 10) and it's like it's freed up the real him inside. Life changing, genuinely.

That's what i am hoping for. It sounds amazing.

There are two main types of ADD medications, stimulant and non stimulant.

The stimulant ones are similar in action to a massive shot of caffeine. They wake the relevant areas of the brain up so that they can work properly. They take effect very fast (20 mins) and wear off after the specified period of time (usually 4 hrs or 8 hrs). Side effects can include feeling a bit jittery, not being able to sleep and not feeling hungry. so the advice is to take them after breakfast so you have already eaten and then focus all the work you need to do in the time period they are active. So if you have to do homework late at night, you might need a second short acting dose after an early dinner. Some people dont tale the meds at the weekend as they just need them during the week. Meal replacement drinks are often a good option for lunch as they are calorific but easy to take when you dont feel hungry.
The second type are non stimulant and they build up slowly in the system over about 6 weeks. You have to take them every day. Some also have a secondary impact of being helpful for depression/anxiety.

Both types of drugs can take a few tweaks to get the levels right amd the stimulant ones can often take several tries to get the exact right ine as some agree with people differently in terms of efficacy and side effects. The good thing about that is that you can try a new one/dose level at the drop of the hat and know in just a couple of days.

My ds started the stimulant ones aged 12. After the first week I asked him what he thought. He said “its amazing Mum, now I can see the boy I can actually be. Its so nice to know I am not actually a hopeless mess”. At which point I hugged him and went away and had a little cry that I hadnt listened to his despair and helped him any sooner . He is now 19 and at University doing really well. We have tried a few different drugs and he now takes the non stimulant ones as it works better for him.

@SeaToSki

There are two main types of ADD medications, stimulant and non stimulant.

The stimulant ones are similar in action to a massive shot of caffeine. They wake the relevant areas of the brain up so that they can work properly. They take effect very fast (20 mins) and wear off after the specified period of time (usually 4 hrs or 8 hrs). Side effects can include feeling a bit jittery, not being able to sleep and not feeling hungry. so the advice is to take them after breakfast so you have already eaten and then focus all the work you need to do in the time period they are active. So if you have to do homework late at night, you might need a second short acting dose after an early dinner. Some people dont tale the meds at the weekend as they just need them during the week. Meal replacement drinks are often a good option for lunch as they are calorific but easy to take when you dont feel hungry.
The second type are non stimulant and they build up slowly in the system over about 6 weeks. You have to take them every day. Some also have a secondary impact of being helpful for depression/anxiety.

Both types of drugs can take a few tweaks to get the levels right amd the stimulant ones can often take several tries to get the exact right ine as some agree with people differently in terms of efficacy and side effects. The good thing about that is that you can try a new one/dose level at the drop of the hat and know in just a couple of days.

My ds started the stimulant ones aged 12. After the first week I asked him what he thought. He said “its amazing Mum, now I can see the boy I can actually be. Its so nice to know I am not actually a hopeless mess”. At which point I hugged him and went away and had a little cry that I hadnt listened to his despair and helped him any sooner . He is now 19 and at University doing really well. We have tried a few different drugs and he now takes the non stimulant ones as it works better for him.

So many of your posts have made me cry. I'm so pleased for your son.

@SeaToSki , that's really interesting about the move to non stimulant medication. My ds sounds similar, has been on stimulant for the last four years, now 19, but trying to get him to discuss any other medication with the psychiatrist is proving difficult. He wants to try slow release but no one seems to listen to him. To be honest, the non stimulant might be better as the up and down timing of the fast release really bothers him.