Wanting reassurance for DC10 starting ADHD medication 🙏

[Return2thebasic]

Hello!

After so many years coping with his ADHD symptoms (diagnosed last November), we are going to try stimulants after all. Just paid the prescription and might start this weekend.

I'm really nervous about it. Two things:

One is that after all, it's a drug which affects his brain and his body - I just feel awful having to come to this especially the gene was inherited from my side. Utterly guilty and nervous. Will he be fine taking the medication? How much it would affect him negativity (his appetite, his heart and everything)? I know each person react differently, but the fear of something goes wrong is there.

The other one is that can stimulants really work on him and provide the right help? By how much? In the past few months, he's gotten worse in terms of forgetfulness and self-care. I literally have to remind him everything for 3 times and he still can forget about it. Been doing 11+ too. The frustration, the tension, the tears (both from him and me) got to the level that I just feel I can't carry on doing it anymore. I know it's really not realistic to hope the drug would fix it with magic, but what if it doesn't work on him at all?

Sorry for so much mumbling. I'm just really wanting to let this out. If anyone could have some reassuring words to offer, I'd be really grateful...

(Posted it because it's just too quiet in SEN). But if HQ feels this needs to be moved over, please do so.)

I went on stimulant adhd medication at 10 and it caused me a lot of issues I wasn't able to articulate at the time. Made me feel anxious and socially awkward and I think was probably linked to a suicide attempt after I was asked to redo some school work in one night after losing a work book and couldn't.

I've usefully used medication on a needs basis as an adult, but you're right to be careful. It's properly heavy stuff. I've taken class A drugs and it's really not that different.

Hi

My DS (10) has been taking medication for ADHD for a year now.

Like you I was nervous at first but once we found the right dose DS himself appreciates the difference it makes for him and willingly takes it on school days. He has combined ADHD and it has made a huge difference to him in school. He tells me it makes his mind feel much clearer and calmer and his thoughts are less tiring. It sort of gives him a break from himself.

It does affect his appetite however which can mean we have meltdowns after school as the medication has worn off and he doesn’t quite realise he’s hungry. Partly because of this we don’t use it on weekends or in holidays - which feels the right balance for us. I know lots of friends that do.

One thing I would say that I wasn’t fully prepared for is it took a long time to find both the right medication and the right dose - and school weren’t particularly helpful with this which was frustrating. So - for example - we discovered that one type of stimulant didn’t really work ( made a slight difference). When we switched to the other type the effect was noticeable instantaneously. My DS probably also needs a top up dose but he doesn’t want to take this so I’m leaving it for now.

Also I find it comforting that the medication leaves the body very quickly - so you really can stop over night.

Good luck and I hope you find it improves life for your DS.

To address the PP - please don’t be scared of trialling the mediation. You will work closely with the doctor prescribing and there are many different kids of medications now ( some non stimulant of stimulants don’t work). Even within the two main types different medications can be trialled to manage side effects.

Im not disputing Hidden Giraffes experience but would counter that I know lots of children now ( many teens who are articulate) who feel meds have made a huge and positive difference to their lives. Untreated ADHD can also cause mental health problems for many people - particular anxiety both in and of itself and due to the way they are treated.

There is a great book for parents on adhd medication by Peter Hill.

@HiddenGiraffes , thank you for sharing your experience. My worry is partly due to my DB also had medication when he was in school years. Not sure what age, but after decades, he still resent whatever he was given had "muddled up his brain". They stopped fairly quickly. Obviously I fear there's a history in family that doesn't respond well.

May I ask you, if you remember the negative effects were displaying fairly quickly after you started medication? Was it more like ups AND downs or mostly adverse effects that you felt?

We will start trying on the weekends to monitor. But when in school, it would be out of our sight and we will have to rely on the school.

I can only answer as an adult who got the diagnosis last year. My meds have killed my anxiety, quietened the chatter in my head and given me the ability to focus. Yes, my appetite has reduced so I supplement with shakes. I've only lost 400g due to these.

I've now been promoted, as I'm confident in my abilities and don't second guess myself. They've been life changing.

DD now 16 has been taking the meds since she was around 12. First Ritalin now Medikinet XL 40mg at brekkie and a top up in the afternoon. She has some appetite loss, and a bit of anxiety but she has led the way in wanting to take and keep taking the meds.

She has a great set of GCSEs and is doing her A levels. This would not be possible without the focus the meds allow her. She is well and healthy, the anxiety and social issues she has are still very present but related to her autism not really the meds.

Finding the right dose will take a little while, rely on what your D's says rather than the teaching staff.also look at what support in school he needs, consider asking for an EHCP. A funded support plan.

Why are you paying? If diagnosed, he should be getting prescription through paediatrician and free

@Maestro12 , thanks for the reassurance. We really need some luck. As parents, it's hard to watch your child struggling everyday with what others see as basics.

Glad it worked well with your DC and made a difference! Thank you!

@Mabelface , thank you! Good tips about the shakes too! I'm hoping to get my prescription next year. Will bear it in mind. 😄

If it's Ritalin or Adderall it can cause a very similar effect to methamphetamines. I know several people who've lost a lot of weight but also become addicted to the high of being on them and have struggled to taper and come off. It's always a juggling act of do the pros outweigh the cons but something to be mindful of.

We nearly saw Prof. Peter Hill until he retired. Will check out the book!

I would recommend reposting in SEN btw

@Return2thebasic you’re very similar situation as me… Adhd and 11+! How wonderful!

DS in Medikinet for around 9 months now.. best thing ever (he has sever Adhd)

it works in most of the cases, sometimes it doesn’t worry but it’s related to his DNA hence the doctors in US do DNA tests before giving meds (our dna was brilliant for meds)

we figured out right dose within a few weeks (had fantastic doctor ) and as many moms here wil tell you, you might need to give extra fattening food in the night …

if this works (very likely it will) his confidence, achievements, grades, friendships, happiness will go up!

you ll do great x

@FlemCandango , thank you for sharing. I will look into the EHCP. I thought only severe cases would be eligible for it. DS is only modest. But will need to have a chat with the teacher - we are yet to receive the report, as the psychiatrist is quite behind with his paperwork.

@Endofmytetherfinally , thanks for the reminder. We will see if we can do only school days and maybe one weekend day, but spare at least one day out of the week without it.

Really appreciate all the kind thoughts offered here.

@Endofmytetherfinally - was this for individuals with diagnosed ADHD?

Its comparatively rare for Ritalin or Adderell( which aren't prescribed in the U.K. it’s a different brand) to have that affect on individuals with ADHD, particularly when used in prescribed doses - as their brains/bodies have a different reaction to these medications, hence them being used for ADHD.

It’s obviously more common when these drugs are used recreationally by non adhd individuals for these issues to arise.

@LoveMyADHD , thank you for sharing! So happy for your DC. Must be a boost to his confidence and everything.

Yes, my side's DNA may not favour the drug due to some recounts by my DB's experience when he's young. But I suspect they only tried one drug and dropped the whole thing as soon as it didn't work. So I'm just a bit wary.

I considered DNA test which the psychiatrist we saw did provide it. But he said it's not bulletproof and will cost a fortune. So I didn't pursue.

@Endofmytetherfinally very good point ! Yea it can happen they get addicted and then they need higher and higher dose. Happened to my DS, he had no breaks resulting in getting tolerant and having to increase the dose.

that’s the reason breaks are super important (perhaps for some kids not all)

@LoveMyADHD - we were one of those for whole Medikinet doesn’t work! My DS is now on Elvanse (lisdexamfetamine) which works for him.

The paediatrician told me it about 50% for whom either stimulant is effective, then 25% for whom dexamfetamine works and 25% for whom methylphenidate works).

@Return2thebasic - do bear this in mind - I was honestly so upset at first as I thought medication wasn’t going to work for DS when the Medikinet didn’t seem to make a difference. The switch to Elvanse have an instant impact.

Not expensive at all, you can order via 123andme and it’s just saliva test

its a specific gene you’d look for (feel free to ping me privately).

@Maestro12 so happy you found the right one!!!

I thought the particular type of test is to tell WHICH drug works better. Is the 123me one only testing overall drug sensitivity or it actually tells DNA reaction to each ADHD drugs?

That does make sense. Honestly this make me think I'd make sur he has two days break out of a week instead of one day. He can go to school drug free on Friday - mostly play time anyway!

My daughter takes concerta xl. She chooses to not take it at the weekend.

She is very bright but was only getting average grades at school (60-70). Her last set of tests were all over 90% and her teacher graded one essay piece as A grade a level standard. She's 14.

Shes a bit grumpy on it but otherwise it has been a huge success for us. She describes it as enabling her to concetrate and she can feel it as it wears off.

I'm not sure it has helped the social side though as she still rambles on
even if no one is listening.

@Maestro12 , thanks for the reminder. I'm prepared the first round wouldn't work or work adversely. Would be too lucky to get it right the first time! I only just hope something can work!

@LoveMyADHD please could you pm me details of the gene as i would like to get my dd tested.

She is happy on concerta but that is the only drug we tried.