Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of the benefits of the medication, management of potential side effects, as well as practical tips on how to make taking the medication more straightforward, taking med breaks etc.

This is a really good place to read about recent medication journeys from the supportive crowd on the thread. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

A really good starting place for reading about the range of drugs available and what they do from a Great Ormond Street specialist with over 40 years of experience prescribing the medication is the Parents’ Guide to ADHD Medicines, by Professor Peter Hill, which is available on Amazon. A really accessible, honest and overall reassuring read, which helped me when I was very doubtful back at the start.

The tips on diet from this NHS factsheet on managing reduced appetite in children on the meds are also really useful www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/ My ds was already very skinny when we started the meds, so with hindsight it would have been good to feed him up a bit so there was a bit of a buffer when he became a bit less hungry.

This is thread 2 and thread 1 can be found here: www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38. I’ve posted my path with my dc from starting meds through to the end of titration here, as have many knowledgeable mumsnetters, so it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

We have had this too! "Get him playing footie!" Well he's dyspraxic and hates football. Soo.....

I try and take comfort in the fact that me and my husband were both loners and enjoyed our own company, so maybe DS is the same.

We don't get birthday invites either and it breaks my heart. I wish all our kids could meet!

This is so reassuring to hear and this is the direction we are going to head in now. DS's mental health is my main priority; he's been through so much in his short life, and I need to keep him safe. I'm not sure what happens to the EHCP if I deregister him from school, so I'm going to give the LA a call in the "normal" days between Christmas and new year.

These past few weeks have been really hard, but I'm seeing a light. I'm still going to put in a complaint to the school as last year we were unmedicated, had a death in the family and a new baby and DS was great. This year we have the SENDCO teacher who has about as much empathy as a rock, and we have had 3 suspensions and meltdowns over stupid things like scissors.

who asked on here why did he kick the teacher? i asked him and jt was because the classroom was too noisy. this teacher keeps DS headphones in her draw rather than on DS's desk.

Oh @AndrewGarfieldsLaptop this sounds like his needs were just not being met. He sounds like a lovely boy who needs to be understood.

I would definitely get proper advice eg from Sossen helpline etc in the New Year before you formally deregister as my understanding (no expertise whatsoever though) is that you get much higher priority for school placement etc if your child is out of school, but that they can say you’ve taken over responsibility if you just deregister. So you might want to be a little strategic here, which I am sure you have in mind.

From all your posts I can see how much you are focusing on him and your love for him just shines through so strongly. You have been through so much yourself as well and I really hope you get a few moments for yourself this Christmas holiday and also that you are able to take just a second or two to feel pride in yourself as an amazing mother to him. We all know SEN parenting is parenting plus and it requires superhuman powers sometimes.

@Freshstarts22 just wondering if he has had a growth spurt at all and now weighs more, so medication less effective. We have DEFINITELY seen that, but in our case not so much anger as impulsiveness going up.

Oh don't make me cry! Honestly i feel like everything he has right now, all the therapy, physio, OT, ADHD diagnosis has been down to me and my sheer determination.

Yes that's my plan, I'm playing it like chess. I'm going to get my advice, get my ducks in a row and then plan the move. All DS knows is that he's not returning, a new school is on the horizon but he's going to have "mummy school" for a bit.

@AndrewGarfieldsLaptop and @Hels20 we’ve had these sort of comments about sport too which ds hates. We’ve found ds loves IT-based activities that one of the local ND groups do and while he hasn’t exactly made friends though this he feels included. They do both online and RL gaming sessions. I don’t know if there is anything similar to this local to you.

@AndrewGarfieldsLaptop No crying I promise but I just bet it IS all down to you. Sounds like you have a good plan in place and are handling like a pro. Despite the intense stress, which I know comes with.

@AndrewGarfieldsLaptop - am so sorry about the exclusion and now the decision to home school until a better school comes up.
can I try to give you a bit of hope? My eldest DS had a breakdown in year 3 - the school threatened exclusions and wanted me to take him off the roll. I held my ground. I spent the whole year fighting for an EHCP and my DS was able to attend school for about an hour or two a day - this went on for 2.5 years. By year 6 he was able to attend school full time. i was lucky - I had the means to afford a nanny (I also had a younger ND child) and she would take him for long walks in the morning and help out at school so he had familiarity and safe person. We also paid for 3 x sessions of private tutoring a week so he kept up with the curriculum.

the crisis eventually passed - and now he goes to a mainstream secondary school and his behaviour is fine. He sometimes gets told off for fidgeting too much (he can’t help it!) but the school is supportive and I truly believe he now might make it to 16 in mainstream. I still cannot quite get over that horrible 2.5 year dark period in our lives - but he eventually matured and with it came so self control. Hang in there and big hugs. xx

This gives me SO much hope. The sad fact is that DS loves school so much, regardless of what happens the day before, he goes in with a smile. Sadly it feels like school doesn't like him. We are just sat on the sofa and he's just told me that a boy in his class tells him to shut up everytime he speaks and puts his hand over his mouth, and another boy has told him that his mum says to stay away. I just went in the kitchen for a sob! I keep telling myself that this will soon pass, it will get better.

That sounds like a great plan with the nanny. I'm on maternity and go back in March, and my husband being made redundant from his IT role in February so he's going to be stay at home dad for a bit.

Also thanks @Hels20, I've paid for some private tutoring as well!!!

Also @AndrewGarfieldsLaptop - I would second @MissHavershamReturns advice - be careful taking him off roll. This is playing exactly into hands of LA. They don’t have an obligation to educate him if you do that. However painful it is - I would try to keep him at school, limping along. I know that schools are not meant to agree to a reduced timetable but this helped us hugely. I also think it sends a strong message to your DS - that life can be tricky and hard but people don’t give up on them…that is the message the school should be sending to him. Otherwise - what? The going gets tough and he can opt out. Our situation was complicated by fact that our DS is adopted - and j also was on verge of a breakdown - I made it v clear to school that their failure to support was ruining a whole family and not just a child. Why can’t they be more accommodating? Where are the movement breaks? The time outs doing things like watering the flowers in the school garden etc? Sitting down at a desk and being expected to learn is not right for everyone. They have to adapt. Your poor son. And poor you.

Thank you for this advice. I've kept DS limping along since September, and his teacher - a SENCO lead - is often confused by him and has admitted to "leaving him to do what he wants". I've asked her several times not to do this (no Christmas play, no mass etc) in which she's put him in, and then is once again confused of why a meltdown has happened. To say I'm angry is a lie, I'm more disappointed.

I haven't deregistered him yet, my plan is to speak to someone from the LA to advise me on next steps!

@AndrewGarfieldsLaptop it sounds as though your plan is very wise. I’m sure you also plan speaking to someone independent like the organisation Sossen, as local authorities are not always to be relied on to explain what their own obligations are, as I’m sure you are already very well aware!

Then the school are failing him - and the SENCO seems out of their depth. We had the same issue - but I bolstered Everything with a strong Ed Psych. I also got my school to withdraw the exclusion (you have 3 months to do it) as I felt it was their failure to accommodate DS that led to some of the meltdowns. Your poor DS is probably feeling misunderstood….and how hard is that for anyone, let alone a SEN child. In another life, I dream of coming back as a MP and becoming Secretary of State for education….

@Hels20 for PM

I spoke to them the other day as I was so overwhelmed with it all and they were amazing!

THANK YOU! I'm currently in the process to remove the suspensions as the headteacher said it would affect DS's permanent record. Didn't even know we had one!

SENCO definitely is. When I said DS was on medication, she said "oh he will be the perfect child then!" Ermmmmm

You have 3 months to remove suspensions…I made it clear that if they had put in place adequate measures, my DS wouldn’t have been excluded. I didn’t do it immediately but let dust settle and made it v clear DS’s mental health was suffering. Head removed it….good luck. It is all extremely stressful and unfair. x

Just popping on to say hello and I hope everyone has a nice day tomorrow. @AndrewGarfieldsLaptop so sorry to read about the rubbish time you're having and sending a big hug. DS has had a pretty rough few weeks, and even though I like Christmas I'll be glad to reach the other side this year as I don't think the excitement is helping at all.

@MissHavershamReturns fantastic news on the weight gain.

HAPPY CHRISTMAS EVERYONE!!!!

Merry Christmas to everyone! 🎄 hope you all have a lovely day

Have an amazing day @AndrewGarfieldsLaptop @nightwebs and all of us!!

@AndrewGarfieldsLaptop I am so sorry to read about the last few weeks and your decision to put your sons mental health first is the best decision you will ever make. Even if you have to make it a million times in years to come it'll pay off. I work with teenage parents the majority with mixed diagnoses of ASD and ADHD and the trauma they experienced at school is worthy of a best seller on the NY Times list. So Merry Christmas! You are amazing!!!

Merry Christmas to you all!!

We have opted to continue our usual schedule during holidays so weekends off. It has meant Christmas,although highly stimulating and having not slept properly for 3 weeks due to excitement, has been amazing for him. He's been able to enjoy his gifts instead of getting bored/ forgetting what he had been given and thar he's been able to control his emotions with regards to things he would have ordinarily snatched from his brother.

We have a Panel decision approaching the beginning of January that is causing me high levels of anxiety. It's to transfer DS to the low COIN in a mainstream primary. I'm just sick of putting my sons education and emotional wellbeing in the hands of people who don't know him at all. He's just reduced to reports...words....other people's opinions. As opposed to the fact that he's a human being worthy of them wanting to do the best by him and ALL SEN children. Any way rant over.

Here's to 2024....!!!!!

So - I am at my wits end with DS8. He has recently been given Intutiv 2mg plus also his 25mg per day of Medikanet. Every time we try to go on holiday - so he is away from his iPad - he just can’t seem to cope. He becomes so difficult to manage (unless we
are at a water park which he loves). This Christmas/New Year we have gone to Florida as eldest wanted to go to Universal and Cape Canaveral. I have no idea if this is because of DS8’s meds - but he refuses to engage. Refuses to walk, doesn’t want to go on any rides (even though in the past he has enjoyed some tame ones). The only way I can make him happy is his iPad. Is this because he is addicted or because of his meds? Or both? Any thought?