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Please tell me your experiences on medication for ADHD

64 replies

Rollergirl11 · 21/09/2020 19:11

Posting here for traffic mainly...

DS (12) was diagnosed with ADHD back in Feb. Medication was discussed but we were still trying to take everything in. Then lockdown/home-schooling happened and DH and I saw first hand just how much he struggles to concentrate and maintain focus. We are now seriously considering medication. I am just a bit worried about the possible loss of appetite as DS is already pretty underweight and cannot afford to lose any more.

OP posts:
callmeearly · 09/10/2020 11:52

@DisgruntledSnowman yes in NHS he is 12 now been in the system for years. Phoned GP this morning. He is referring us to CHMS again...they never accept the referral. Also phoned social services and asked for a social work assessment (things can't get much worse at this stage.) Have also emailed school and ask for a range of adjustments. All of which are included in his statement. Hmm

DisgruntledSnowman · 09/10/2020 18:52

@Rollergirl11

Our situation is pretty much exactly the same as *@DisgruntledSnowman except we are right at the beginning of him taking meds so very early days. How long did it take you disgruntled* if you don’t mind me asking? And what were the first lot of meds that didn’t work?
She was diagnosed late October a couple of years ago, then meds within 3 weeks. The ones that didn;t work were Methylphenidate - think the brand name is Concerta. Tried those for a couple of weeks but they were so obviously totally wrong for her that they switched her quickly to Elvanse. I think she was on the Elvanse by the Xmas. Then a couple of months tweaking the dose. She was stable on 30mg til lockdown and is now on 40,mg
ulanbatorismynextstop · 09/10/2020 21:53

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TrainspottingWelsh · 09/10/2020 22:14

Personally, I don't get on with them. Either my brain still doesn't filter but at the same time doesn't have the capacity/ energy to keep up, or I find everything too slow to give a fuck. If we say that my mind is usually mentally herding very energetic cats, meds either result in me feeling like I'm trying to herd energetic cats while stoned, or herding one very well trained sheep dog. Both of which are more frustrating than just being me.
The only meds I've ever really got anything from are high doses of illegal substances when I needed to focus on boring shit at school/ uni.

That's not to say he must be the same, I've never really persevered with medication and I'm sure there are far more (legal) options since I last tried. But I don't think it's always the quick fix we commonly hear about, even if it works the dosage and type often require some experimentation first.

Doubletrouble99 · 09/10/2020 22:29

Both our DS and DD are on meds. DD on Elvanse and DS on methylphenidate x 72mg + a 5gm of Medikinet in the morning and 10mg at 6pm. He's 18 no and been on these for nearly ten years. Obviously increasing as he got bigger. DD has never had a problem with eating but had had sleeping problems so has Melatonin when needed. With DS we have found that we make sure he drinks loads of full fat milk/milk shakes to help keep un his weight. He also often has extra food just before bed as he is often hungry then. So I'm prepared to make something or have quick stuff in fridge/cupboard to keep him going, tinned rice pudding is a fav. at the moment..

HoldMyLobster · 10/10/2020 04:19

Doubletrouble99 - I read your post with interest. DS has until today been on 72mg of methylphenidate slow release. He is about to switch to generic Adderall to see if it works better. He's still exhaustingly hyperactive and unfocused even on meds, and I think things like school would be easier if he had more effective meds.

The doc had mentioned mixing long-acting and short-acting meds if necessary so it's interesting to see someone else doing it.

Some evenings we get to the end of dinner and I realise he's interrupted me so many times I literally haven't managed to say anything I needed or wanted to say, and I'm just defeated. The meds are clearly wearing off at that point.

I absolutely adore him, and he is the sweetest 15 year old ever, but some days I just need a break for a while. I can't imagine how it must be to be him, and dealing with that every day, all the time.

HoldMyLobster · 10/10/2020 04:23

@Gilead

DS is 25, he’s just started on the Methylphenidate, he said it was like his ‘brain had been given glasses’. However, at the moment he can feel a bit flat in the evening, this will apparently improve though.
This is amazing - such a great description.

A friend said that when he took ADHD meds his brain became quieter and he could finally properly focus for the first time in his life.

CovidStoleTheRainbow · 10/10/2020 07:03

Following.

Thank you OP for posting this. My 9 YO is seeing someone in November. I've had the paper work from school to last onto the them and it's startlingly obvious that he has ADHD.

DS is desperate for meds so he can sit and listen in class. He struggles so so much.
Friendships are a constant issue. Life is really tough for him.

He has tics as we, I worry meds will make this worse.

Sirzy · 10/10/2020 07:12

Ds has been on attomoexetine for a few years now and the difference has been amazing for him. He is now able to focus at school (with support) so isn’t getting as angry in school and is managing to cope academically

BertieBotts · 10/10/2020 07:54

I take an off label antidepressant which supposedly works like Strattera, which is not approved for adults where I live.

The most noticeable thing for me was it slowed down time. I used to regularly have days where I'd look at the clock and go omg, it's already 3pm! I've only just had breakfast! Now I do that and it's 10am.

I also find that I think ahead more and so am able to do things to prepare for the future like washing clothes, buying birthday presents and so on.

It took me ages to settle down on it and I had six weeks of brain fog and nausea, so I nearly stopped it but my appointment to discuss was on a day it had improved so I decided to stick with it.

I have a day every so often where I'm totally in this soup of horrible tiredness and don't do anything but overall the net effect is better.

For me I eat more on Meds because they make me notice when I'm hungry.

TheWindOnTheMoon · 10/10/2020 08:14

DS (11) was diagnosed with ASD and ADHD last year. His paediatrician put him on Equasym, firstly a mild dose and then a slightly stronger one. We could see it helped him to concentrate but his appetite dropped away and he started losing weight. Also it would wear off around 4pm and it was like he dropped off a cliff. His behaviour would become terrible, violent meltdowns and he was frightening himself too.

He has always struggled with sleep anyway and this made it worse. We tried Melatonin but that didn't work particularly well - he would fight against it.

A couple of months ago his paediatrician recommended he come off the equasym completely, because she was concerned about his weight loss and has referred him to her senior colleague to see what else can be done. His concentration levels have dropped away, he can only do short bursts of work, can't sit still, is really struggling.

So whilst we wait for the referral to come through, it feels like we are in limbo. At least DS is eating well again and making up for lost time there, and growing. But his studies have suffered.

Rollergirl11 · 10/10/2020 08:37

@Sirzy am I right in thinking that Atomoxetine goes by the brand name Strattera and is one of the non-stimulant meds?

@TheWindOnTheMoon has your paed not suggested he try another brand or even a non-stimulant one? My take on it was that it was very much trial and error finding the one that suits you and that you should try definitely try others. Seems a shame to give up after only trying one?

OP posts:
Sirzy · 10/10/2020 08:44

Yes roller. Because Ds has major food and weight issues (he is now tube fed) the decision was made early on that the stimulant drugs would be no good for him.

TheWindOnTheMoon · 10/10/2020 08:52

@RollerGirl11 she mentioned other types of meds but seems to be keen to hand us over to her senior colleague, who we do know because he diagnosed DD's ASD a few years ago. I think she's suggesting he's got more experience with ADHD than she has and so would prefer us to be under his care instead. So it will be a waiting game again for referral. It's getting very exhausting. DS had another bad night last night and we're all tired - again.

Rollergirl11 · 11/10/2020 10:06

@TheWindOnTheMoon ahhh that must be so frustrating for you having to wait again when all you want is to keep the momentum going and get them stable and in a better place.

Well DS has actually had a really good few days. I gave him his top-up 4pm dose on Friday and it definitely combatted any anger and frustration we had seen the few days before and he was able to get on with some homework without any hassle. It also didn’t affect his appetite or his sleep too much so I feel happier giving that to him if need be. He had his last 20mg dose yesterday and he had a very productive day, doing 2 pieces of art off his own back and doing two lots of Maths homework. He was so happy doing his Maths homework one straight after the other. He said to me that he felt like it was really clicking and he actually knew what he was doing. He said that he could sit and do the work 10 times over and believe me he NEVER says anything like that when it comes to school work. He told me he had butterflies in his tummy because he was doing it so well and it was the first time I have seen him so happy and confident in his own abilities. It choked me up. I really hope that this is a sign of things to come rather than just a good day.

So we decided to go on to the next dose of 30mg as planned. Hopefully we should see further improvements!

OP posts:
callmeearly · 11/10/2020 14:07

@Rollergirl11 so pleased things are improving for you.

Really struggling today. If anybody has any advice on how to get homework done please let me know.

Does anybody get any actual support and if so how did you access it?

Gordonbennit · 13/10/2020 11:06

Iv been watching this thread as hopefully starting with some sort of medication for my 8yr old son. Unfortunately the peads at our local hospital are asking parents to go through re-diagnosis screening before they will see anyone (after them trying to throw meds at us for years!). Think it’s their way of dealing with the backlog from covid. Anyhow

Regarding homework....the only thing that works for us is bribery. Catch him at a time when he is relatively calm and agree to one piece of homework 30mins on computer, this is similar to how it works at school for him.

Sometimes if it’s really bad I say I will take him to the little sweet shop to pick something if he does it all (And I can actually read it as he rushes things so much) not ideal I know but desperate times.

It all depends on how agitated he is when we start tho.

Best of luck everyone Flowers hope our kids have a good day today

Greenkit · 13/10/2020 11:10

My son when 13, now 22, started taking medication.

We found he needed a big breakfast in the morning, take tablet, he would take a mars bar to eat for dinner and then a large tea and supper.

He was very close to being removed from school, before diagnosis, to A and B grades at 16.

OhioOhioOhio · 13/10/2020 11:14

Does anyone have any experience of a homeopathic approach? This is an excellent and insightful thread. Thank you.

OhioOhioOhio · 13/10/2020 11:31

Pp With homework I offer two lots of tasks. Basically something more, or do ONLY this now.

BiddyPop · 13/10/2020 11:57

DD went onto Concerta at age 6, when she was DX'd initially - that was all that was on offer to her, no other options for treatment or otherwise learning to manage it.

She was always small for her age, but it did reduce her appetite further and she was on the 4th centile for a long time. She had still been in the habit of a drink of hot milk before bedtime, so I kept that up as a way to make sure she had lots of calories getting into her (in fact, I went from low fat to full fat milk, and we did lots of hot chocolate topped with squirty cream nights instead of plain milk - partly to encourage her to have it, partly to get calories into her, and partly to have warm milky drinks before bed to promote sleep).

She was not a sandwich person in school, so I used to cook pasta and put in a food flask with a handful of grated cheese or of pesto for her lunch a lot.

Things like extra cheese, plenty of hidden veg including beans and pulses in meals, accepting her foibles about food and making a dinner she would eat so that she actually ate rather than making a stand that she had to eat what was cooked....part of it related to having very little control over certain things and food was something she could control so better for her to actually eat (I could always freeze leftovers of her uneaten planned meal for DH or I to have another night instead) and have less stress etc.

Things like having hot food (eggs some mornings, sausages another, pancakes were a favourite etc) for breakfasts to fill her up before the meds started working.

The big milky drink and something to eat going to bed.

Having things she might snack on available when she came in from school, or in the car (and aiming to have relatively healthy options - not just sweets/crisps) - raisins, carrot sticks, pepper sticks, breadsticks/crackers.

Getting enough fat into her - full fat milk, extra butter in mashed potatoes, lots of cheese.

And accepting she has an issue with the texture of red meat, so going for lots of chicken and fish that she would eat. And mince meat sauces were ok sometimes.

As it happens, she learned enough through courses I did, a helpful SN teacher for resource in 4th and 5th classes and a very understanding class teacher in 5th class in particular, to come off concerta in 5th class. She still takes melatonin for sleep even today. But she had learned enough coping skills to manage without meds, and it allowed parts of her personality to come through that were masked by the meds.

They were really important when she was younger and really couldn't cope with busy classroom and expectations.

We still have plenty of "fun" times at home, but she manages in school etc well now generally, and does a LOT of sport to take the hyperness out. She still has issues with food (partly control, partly a teenage thing, partly a serious sportsperson thing....) but has generally kept to the relatively healthy habits she always had as sugar is a really bad thing in her mind (but you can get so many sugar free things now....who knew!).

Rollergirl11 · 13/10/2020 12:48

@OhioOhioOhio I did try DS on a saffron supplement for a while as a friend had told me about a study that had proven successful for helping ADHD symptoms. Unfortunately it didn’t make any difference with DS but says friend had good results with her son. He was taking alongside cod liver oil and omega 3.

www.google.co.uk/amp/s/www.psychologytoday.com/gb/blog/integrative-mental-health-care/201904/saffron-promising-herbal-treatment-adhd%3famp

OP posts:
OhioOhioOhio · 13/10/2020 13:30

Thank you Rollergirl11

I dont want an official diagnosis, I dont think. I'm hoping this helps us significantly.

Gordonbennit · 13/10/2020 14:55

Rollergirl11 Out of interest have you managed to or tried to see anyone at the Hosp since lockdown? I have been trying months to get an appointment for what would have been my sons normal 6 month check up but to no avail.

Getting so desperate I’m thinking of trying to find something private and pay for the medication, my GP strongly advised Against this stating that anyone can hand out the drugs but they may not monitor or know my son like the pead at the hospital does, and I may the have trouble transferring him back to NHS in future. I would not be able to afford to pay for the drugs long term. Has anyone gone private first then changed to NHS was this a problem??

Rollergirl11 · 13/10/2020 15:31

@Gordonbennit we went down the private route but yes we have been having appointments by Zoom. We are paying for the medication but it will move over to the GP prescribing under a “Shared care” agreement once DS is stable, hopefully after approx 3 months. But as I understand it if there are any changes with meds then it reverts back to your private consultant again to sort out dosage until stable once again.

If you are already within the NHS system I probably wouldn’t change that if I’m honest.

OP posts: