adhdmom
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Post by adhdmom on Jul 12, 2018 21:39:16 GMT
Hello All, I'm so pleased to have finally found a forum about Adults with ADHD. I do not have ADHD myself, but have lived with my Son since he was diagnosed at just turned 5.
Whilst a child he was regularly seen and reviewed by a Community Paediatrician who arranged for his prescriptions to be dispensed by his GP Surgery.
When he was 18, she referred him to the Adult Mental Health Service, and the Learning Disability Team, the first of which he saw twice and was then discharged from. We never heard from the Learning Disability Team.
He had been on the same medication and dose since 2014, and it was agreed that he only needed meds when in situations needing concentration, such as school and college and later work placements.
To cut a long sad story short, since 2016, he has been in Adult Care..
He is now with a second carer, and I am worried about a lack of knowledge of ADHD in both of them. The first gave him Medikinet with his bedtime Circadin until he told them they shouldn't. The current one asked him to take his lunchtime dose before lunch and it was explained by me that this was wrong.
Recent events that have further raised my concerns are summarised as follows :-
1_ An appointment was made by his carer with his GP for a medication review. 2. He saw the GP on his own, and left with no change. 3. His carer then saw the GP on his own. 3. After this my Son was asked to see the GP again. 4. He was then told he needs to take a dose of Medikinet XL at 3 to 3:30 PM. 5. He was told he had to take his meds every day.
He was told to do this for a trialof 7days, but the next appointment was cancelled and he couldn't get another until the 18th. This means he has been on extra and full-time meds for over a month.
I'd like to ask a couple of questions please :-
1) Is a GP allowed to review and make changes to ADHD medication? 2) Should the GP (if allowed) act in the best interests of the Carer or the Patient? 3) Should the patient be told the reason/s for the change, and asked for his consent? 4) Does anyone know of anyone else on a mid afternoon XL dose of Medikinet? 5) Is there anyone else on when needed rather than full-time meds? 6) My Son is 21, and wants me involved, is there a way this can be done?
Sorry for such a long post, but hope the history helps. Not sure if anyone else is in this position but grateful for any help/advice please.
Many thanks, ADHDMom
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Deleted
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Post by Deleted on Jul 14, 2018 15:16:47 GMT
What is Adult Care, exactly? He lives away from home?
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adhdmom
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Post by adhdmom on Jul 15, 2018 18:12:21 GMT
Hi Boost, Thanks for the reply. Yes, he is living aware from home in an Adult Placement
Please feel free to ask any other questions.
Regards, ADHDMom
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Post by jp on Jul 15, 2018 21:47:31 GMT
1) Is a GP allowed to review and make changes to ADHD medication?[/p]
I don’t know. But I thought that for adults GPs can only prescribe under the guidance of a psychiatrist.
2) Should the GP (if allowed) act in the best interests of the Carer or the Patient?
Clearly they should act in the best interests of the patient!
Can I ask why he needs a carer at 21?
Am guessing that the carer thought that your son’s symptoms were bad enough when unmedicated to make sure he is medicated 24/7. But it’s surely up to your son to decide that unless he’s not thinking rationally? Does your son disagree with the regime?
3) Should the patient be told the reason/s for the change, and asked for his consent?
Er... yes. But you may need to be assertive and ask clearly and not allow yourself to be fobbed off. Sadly it seems that some GPs are arrogant tw@ts who resent having to explain themselves to a mere mortal. Possibly because they don’t actually have a clue what they are talking about. Adhd is not well understood - it’s still early days - many GPs haven’t studied it in any detail.
4) Does anyone know of anyone else on a mid afternoon XL dose of Medikinet?
Not personally but Medikinet is a good one to be on for the reason that the capsule can be opened and a reduced dose taken if necessary. This might constitute ‘misuse’ sadly.
5) Is there anyone else on when needed rather than full-time meds?
My psychiatrist advised me to take my medication every day. And there are professionals like Barkley who pretty much think it should be compulsory since folks with ADHD are a danger to themselves and society! I think as adults we can make up our own minds about when to take our meds. I do. There’s clearly a difference between a Sunday canoeing down a river and a Monday doing difficult paper work. Or a day of repetitive manual work vs a night shoot on a busy film set. I think we should have much more control and more options available. I’d like a small dose IR stimulant from time to time. Like if I need an evening top up but I actually want to sleep later. I’d also like to be able to experiment (with a professional) with different meds too, like non stimulants... I was private and couldn’t afford to do this in a meaningful way - it would be prohibitively expensive. And I can’t easily see an NHS specialist since there’s no referral unit in my county and little money for out of area assessment. Maybe in time attitudes will change.
6) My Son is 21, and wants me involved, is there a way this can be done?
You are free to visit the GP with him. And your opinions should be valued and respected.
Good luck!
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Post by vagueandrandom on Jul 16, 2018 9:20:38 GMT
A GP is only allowed to prescribe ADHD meds under instruction of a specialist, so they can’t change the dose without consulting them first. I know people who take a second mph XL in the afternoon. jp medikinet is methylphenidate so XL capsule can’t be opened, the one that can is Elvanse (lisdexamphetamine) most people take meds every day. This is to minimise side-effects which are more common when starting meds. Stopping then starting again can make side-effects return.
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adhdmom
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Post by adhdmom on Jul 16, 2018 16:53:45 GMT
Hi Both, Thanks very much for y0our detailed and informative replies.
1) Is a GP allowed to review and make changes to ADHD medication?
That's what I thought and suspected. I will try to find out if there are any ASHD Specialist GPs in my town.
2) Should the GP (if allowed) act in the best interests of the Carer or the Patient?
That's what I thought as well. I think his carer is after an easier/quieter life !
Sadly, He was impossible and unmanageable to live with, due to his Attitude and Behaviour towards me, not his ADHD and in the end having been given very little if any help, I had no choice but to ask them to find him somewhere else to live. Before he left, when he knew what was happening, his behaviour drastically improved, and I asked for more time for us to sort out the issues, but they said it was a temporary respite to enable us to rebuild our relationship, and he would be asked how he felt. Unfortunately, his Social Worker was taken ill and it was ages before he saw another one, but when asked, said he was missing me.
At the end of this Temp Placement he wanted to come back to me, hand asked for a trial with me and his new carer, but neither of these were offered, and he was given a permanent placement with his new carer. This was in March 2017, and there hasn't been a review since.
He has mild Learning Difficulties, and is just on the ASD Spectrum, plus ADHD, but does not need a full-time carer.
My Son doesn't understand why he has been given the extra dose and has to take it every day. He asked the doctor and didn't get an answer. I asked the carer in his Day Book, and got the reply that it was prescribed by his GP.
The last thing he needs with a Sleep Problem is XL at 3 in the afternoon. :-( He takes 4mg Circadin at 8:30 ish, and surprise surprise they aren't working :-(
He has only had meds on the days when needed since he was at school, and hasn't had meds at weekends unless needed since at least 2004.
XL meds have never agreed with him Concerta made him ill, Equasym made him eat less, and I've already noticed that Medikinet XL is doing the same Re: His Appetite :-)
At 21 (even in Care) is he allowed to say if/when he wants to taken his meds? Am I really allowed to go with him to the doctors?
Many thanks, Cheryl
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Post by vagueandrandom on Jul 16, 2018 19:43:26 GMT
Sadly, He was impossible and unmanageable to live with, due to his Attitude and Behaviour towards me, not his ADHD How is his attitude and behaviour NOT ADHD? Behaviour is communication and often it is aimed at the ones we love, because we care so much. ADHD is ALL about ‘behaviour’ and emotional dysregulation. If his meds were working and he took them regularly, you might find his behaviour improves too.Before he left, when he knew what was happening, his behaviour drastically improved, and I asked for more time for us to sort out the issues, but they said it was a temporary respite to enable us to rebuild our relationship, and he would be asked how he felt. His behaviour improved because he was scared and he loves you and didn’t want to leave and knows that it was due to his behaviour towards you and is deeply ashamed and sorry he hurt you.Unfortunately, his Social Worker was taken ill and it was ages before he saw another one, but when asked, said he was missing me. At the end of this Temp Placement he wanted to come back to me, hand asked for a trial with me and his new carer, but neither of these were offered, and he was given a permanent placement with his new carer. This was in March 2017, and there hasn't been a review since. He has mild Learning Difficulties, and is just on the ASD Spectrum, plus ADHD, but does not need a full-time carer. This sounds like he’s being kept against his will. He’s an adult and can make his own decisions, even with a learning disability. If he’s not under a MH Section, he can come back to live with you any time, you’re his mum! Unless there’s any legal order that says he can’t.My Son doesn't understand why he has been given the extra dose and has to take it every day. He asked the doctor and didn't get an answer. I asked the carer in his Day Book, and got the reply that it was prescribed by his GP. The last thing he needs with a Sleep Problem is XL at 3 in the afternoon. :-( He takes 4mg Circadin at 8:30 ish, and surprise surprise they aren't working :-( He has only had meds on the days when needed since he was at school, and hasn't had meds at weekends unless needed since at least 2004. XL meds have never agreed with him Concerta made him ill, Equasym made him eat less, and I've already noticed that Medikinet XL is doing the same Re: His Appetite :-) Concerta, Equasym and medikinet are all the same. .long acting methylphenidate. They shouldn’t keep him awake and if side effects are bad (which they will be if you don’t take them regularly) maybe he could try something else.
I don’t understand why he would only take meds “when needed” . . . ADHD isn’t just an inability to concentrate, meds aren’t study drugs. Does your son not need to be more organised, less impulsive, more emotionally stable, able to complete day-to-day tasks?
Regarding medication, it would definitely be useful to see an adult ADHD specialist to talk about meds, have a review, perhaps change dose or type, or at least explain how they work and what benefits they can have. Unfortunately, you’ll probably have quite a long wait for an appointment.
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Post by ADDZ on Jul 16, 2018 20:54:53 GMT
Sounds like a very sensitive situation, I’m hesitant to comment but...
It’s probably been a massive reality check being in adult care. I think if you pull him out, he may amend his attitude and be a changed man!
Don’t let the system bully and dictate what’s happening with your Son! Half the time they do not have a clue..
Good luck
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Post by easilydistracted on Jul 17, 2018 21:53:05 GMT
Hi adhdmomJust throwing some ideas up in the air, no doubt you'll already have considered most if not all of them. It might be that Adult Care are more focused on making your son stable, and giving him medication every day may be an attempt to help him find that stability. A cynical possibility is that it may be that they just want him docile, in a similar vein, trying to make him XL once in the afternoon is easier than trying to get him to take IR in the afternoon and trying again in the early evening. Essentially, this is your call, are they doing it for his benefit or theirs? Not all XL's are created equal, Concerta for me is good for about 8 hours, Equasm only 6. Maybe there's room for some experimentation? Maybe even going to IR if he's willing that would help with sleeping and eating, while still giving him that stability. And that if he's willing part, kept in care is he given the opportunity to notice improvement? Away from the challenges and achievements of normal life, surrounded only others in care, what yardstick has he got to measure himself against? With his other problems he may be less aware of any benefit ( or similarly lack of benefit ) his medication brings. Sorry, no answers only questions. It sound's like you both have a tough road to travel. best wishes
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adhdmom
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Post by adhdmom on Jul 18, 2018 13:02:56 GMT
Hi All, Thanks very much for your replies/posts. He had a follow-up appointment today, and I will be seeing him shortly. I will post an update Re: Meds and what happened either later today, or tomorrow.
Thanks again for your support.
Regards, ADHDMom
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Deleted
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Post by Deleted on Jul 18, 2018 14:06:00 GMT
I have so many thoughts on this subject that I'm struggling to construct a post that I can be sure is helpful to you. This is my fourth attempt, I think!
I suppose living with ADHD has taught me to look for 'root cause' in every problem because experience has taught me not doing so only prolongs suffering.
Parenting is hard. Parenting by proxy is excruciating. It's a daily implosion of anxiety, a daily explosion of frustration. It never leaves you and the effects spill out into every other aspect of life.
Why?
Maslow's Hierarchy of Needs comes to our rescue again.
Security of: The Family
In my mind, the only question that needs to be answered is, 'How do I ENSURE the deficit needs of my son?' because otherwise, as parents, I believe we are committing ourselves to a psychological prison as we're not able to ascend the hierarchy ourselves.
The golden rule, IMHO, is to put your own oxygen mask on before you attempt to help others. This is something I still struggle with, as a parent.
Best of luck to you both.
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Post by vagueandrandom on Jul 18, 2018 20:00:15 GMT
adhdmom I am not a parent. I’ve been worrying if my replies were perhaps too harsh.
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Deleted
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Post by Deleted on Jul 19, 2018 14:53:04 GMT
adhdmom I am not a parent. I’ve been worrying if my replies were perhaps too harsh. "Please feel free to ask any other questions." You don't see many people using those specific words. It's a sign that external accountability is welcome, typically employed by those who are determined to do whatever it takes to get the best outcome, IMHO. Your comments were triggered, I guess, by the perceived vulnerability. I suspect ADHDmom is very grateful for your strong emotional response in favour of her son
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adhdmom
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Post by adhdmom on Jul 20, 2018 11:54:13 GMT
Hi All, Any comments, however harsh, gratefully received ! :-) I'm a big (well not too big Girl, and can take it, especially, if it helps my sort out the issues with my Son :-)
This posting is delayed, because it turns out the appointment was at the dame time as I was due to see him, so I didn't get to see him until yesterday/
He spoke to the Doctor about the sleep problem, and one of his carers backed him up of this. He also tried to ask about the weekends, but didn't get a reply. He is due to see/speak to the doctor in 2 weeks.
He did ask if I could be involved, and the doctor said he would look into it. :-)
Apparently, due to the XL tablets running out, he has been taking (requested by his carer) IR 10mg at 3pm, but is still having problems sleeping.
His carer got a New Prescription yesterday, but we're not sure if it's for XL and IR. I suspect XL as the change to IR wasn't mentioned.
It is still very worrying that neither his carers, nor his doctor seem to know much about his condition, and medication, but I have been told 3rd hand, that he would need to be declared as "Mental" to get a referral.
Is this true?
Many thanks again to all. ADHDMom
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Deleted
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Post by Deleted on Jul 20, 2018 16:44:19 GMT
I don't understand why he has to ask permission for you to be involved. Perhaps too old to be his legal guardian, you're still his next of kin?
I have the vaguest of recollections that I maybe read somewhere that people suffering with restless legs may benefit from a small evening dose of our favourite stimulants? Might this apply to him? Just a thought. His actual feedback should surely be dictating the direction of his tablet regime, I would have thought? It sounds like this maybe is not happening?
Would you say he's more the assertive type or the anxious type? Which one are you?
Are you able to visit him whenever you want? Is he free to leave wherever he currently is? For a night or two? Can he just walk out if he feels like it?
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Post by vagueandrandom on Jul 21, 2018 9:26:38 GMT
Grrr! Just wrote a long reply, but the Proboards goblin ate it! . . Try again. . Sleep problems are really common with ADHD. Have your son’s got worse recently? Heat and anxiety can make sleep worse. Methylphenidate has a calming effect on ADHD brains. It also leaves the body quickly, so XL lasts around 6 - 8 hours and IR around 4, so even taking XL at 3pm, it should definitely be out of the system before midnight (IR by 7) A GP is not qualified to review, change, or adjust dosage of ADHD medication. NICE Guidelines say a medication review should be undertaken annually by a specialist. The GP can refer to an ADHD specialist but there’s likely to be a long wait. How does your son feel about taking medication? Aside from physical side-effects, does he think they help in his day to day life and improve his emotional responses (behaviour) ? You can attend a GP appointment with him if he agrees (I used to go with my grandpa when he had dementia) I’m worried that his carer could discuss your son’s health and medication without him being present. Who is keeping him in this care facility at great cost to the public? Unless he is detained under the Mental Health Act (Declared “mental”) he has the same rights as any other adult. Some charities have advocacy services to help vulnerable people to express their wishes. Does your son have a social worker you can talk to (with your son’s permission) I think issues around medication are the least of your worries atm.
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