Treatments - Best & Worst?

Today's question is about treatments!

What are the best things about your child's current medications?

What are the worst things about their current medications?

What other care or treatment are they receiving, apart from medication?

Share your experiences and interact with other members in the comments below! :)

22 Replies

  • No medication yet but hope to give it a try in autumn with private supervision. We are looking at OT within school and potentially outside privately.

  • Thanks for sharing, are there any other treatments that you're trying out instead of medication?

  • Just classroom management stuff as previously mentioned- this is a type of OT. Nothing at home.

    I discussed options in more detail privately and understand another option suitable is CBT. I'd consider parenting support but we aren't doing too badly. Sleep is the biggest issue and melatonin may be prescribed alongside methlyphenidate.

  • Best thing about his medication? It helps him stay calm, and concentrate longer. It means he can cope with school most days. Also he doesn't have to take it every day, so if we are not going out or doing anything stressful then he can miss a day, which makes him happy.

    Worst thing? It wears off during the day, and sometimes he gets very high afterwards. This doesn't seem as pronounced as it was when he first started taking it. From his point of view, he feels as if he doesn't have so much fun when he's taking his medication, but he does understand that it helps him cope, so he sees it as a good thing. He's still pretty lively, even on the medicine.

  • Thank you for sharing! Overall do you think that medication has helped your son?

  • Yes. He could not cope with school without it, and it means we can take him out to visit friends and family, and for outings. Otherwise he would be too random and restless to stick at any activity. Even when he's at home for the day he can't fulfill tasks as well without medication, e.g. If told to tidy his room he would get too distracted.

  • Our son has a very bouncy rebound too!! But the meds get him through the school day, which he can't manage otherwise.

  • Concerta xl 45mg daily,if anything this does help,also as its split into a 18&27mg tablet it's hard to judge sometimes as he will only take the 27mg.

    I know straight away if he has missed a dose as he is a wind up,cant keep still,won't settle of an evening,teases the cat etc.

    I give him a break from them most weekends unless we have something planned with the family etc.

  • Best thing for me is about how it has levelled the playing field for my son when it comes to schooling. Before medication he struggled with so many things not least of all reading. Initially I was resistant to the idea of medication but eventually agreed to a trial of it over six months. To put it simply was a game changer. My "struggling to read" son became a fluent reader within three months of starting the medication.

    So definitely it allowed him to catch up with his classmates.

    It gave him more time to process situations (he is autistic too) so he coped better.

    Worst thing? It would only be the appetite suppressing effect of the medication but it doesn't last all day and I make sure he has adequate nutrition.

    As he attends a special school he gets regular occupational therapy plus speech and language therapy too. This all helps him.

    At 14 he can now tell me that the medication helps him and how.

    That said we choose not to give it during weekends or school holidays (unless there is a big event planned) . He is our only child and we can manage any issues which might arise.

  • Our son is currently on Elvanse. It works a treat. The only problem is its a twelve hour dose that runs of his system in ten. A 15 hour pill would be perfect. He's also receiving counselling on recognising and dealing with the signs of meltdown, and how to bring himself back from the edge. This is a mixed thing as he has FASD as an overarching diagnosis, and the meltdowns are FASD related as well as ADHD. But the therapy helps, and the strategies they have given us have been helpful too.

  • Sorry , can you explain what FASD is please?

  • Sure, it's Foetal Alcohol Spectrum Disorder. It's caused by the consumption of alcohol during pregnancy. In our son's case it is his primary diagnosis and the ADHD is under that umbrella, although we had the ADHD diagnosis two years before the FASD one.

  • We have tried various medications-initially standard release Ritalin, later concerta.

    Allowed our son to function fairly effectively at school and , with individual support, access the full curriculum. He hated taking doses of medication at school and felt this made him look like 'a weirdo ', hence changed to slow release form which was much better and made his behaviour more even, without the rebound hyperactivity when dose ran out.

    After a few years ended up changing to strattera, mainly due to weight gain with previous medications . No side effects with this drug, which was stopped after a couple of years as concentration/hyperactivity seemed to be improving

    Also had some CBT input -this was mainly focussed on issues relating to problems with low mood/anxiety and social difficulties due to A's Aspergers, however did do some anger management work which was useful in reducing the frequency of verbally aggressive outbursts

  • None as yet

  • No meds for my son we just allow him to burn is energy off by playing outside. School been a great help mind and food also cutting things with colouring and additives in them. Coffee is brilliant mind and energy drinks as does the opposite affect on adhd kids but don't like him having these very often.

  • We've had OT and psychology but still had to request them rather than being a natural progression from diagnosis. I'm happy he isn't on meds currently accept for sleeping, he's young and can burn off access energy easily.

  • When I eventually got an appointment at the hospital my son was put on Ritalin and I thought all my problems where over. If only .For about two months things improved but soon after reappeared my son was 14 by this time .He was refusing to take the medication refusing to have extra help at school it was horrendous the worst few years of our families lives.I think early diagnosis and intervention is the took ten years to get to this stage too little too late

  • My son has used various preparations of methylphenidate since age 12.

    He was a late (formal) diagnosis at that age due to issues with husband who refused to see the condition.

    Longer lasting preparations didn't work well as he anyway has insomnia and doesn't eat enough (distracted).

    Now at 17 using 15mg slow release medikinet and that's working well.

    He can focus on work, keep at a task, finish, remain civil, organise time etc.

    Life changing stuff.

    Without it, he's a different young man.

    However, he takes it during the working week and not at weekends unless he needs to focus on something particular. That is his choice.

    Used melatonin for a reasonable period of time to aid sleep ( he goes to sleep at 2,3 ,4, 5 am) but didn't help at all so dropped it.

    Weight is an issue too as he is at the bottom of the weight chart always and on the meds his appetite falls further and it is poor anyway.

    I have to keep a very close eye on his eating and if I see that he's lost interest for a bit ( he can go 24 hours without eating because he is over focussed and I think body cues are not working well for him) I take him out to an eatery and offer him his favourite food!

    Meds have been life changing, the first time he took Ritalin he answered me first tie when I called him from his room, nearly died of shock!

    Before his diagnosis when I knew anyway he had ADHD, I used various behavioural/ social techniques to help him. He was very physically overactive then so we did lots of outdoor and active stuff to work out the jitters.

    Even on wet days we did stuff indoors which involved moving around. My expectations of him were adjusted as I saw his difficulties,

    He was home educated for ten years, this helped immensely.

    He could focus on his interest of the moment.

    I recommend home learning if school is problematic. There are lots of support groups and more people doing it and you can step out of school for a while and back in again so it's not a once for all decision. At some point school may work well again. The important thing is for the young person to enjoy learning .

  • Medication does help with long term attention and especially in a school setting does help to calm down. It does seem to be doing its job, can make very drowsy though.

    The only problems that I feel that there are is the possibility of delayed growth and the decreased appetite. These are not huge problems but can be a long term problem.

    Have received nothing else apart from support within school such as seeing the welfare manager etc. However, has been in DBT sessions which are helpful for impulse regulation.

  • My grandson is 4 and newly diagnosed. My husband and I are raising him and his sister at this time. We knew he was a different type child from the beginning. Has hard time sitting still, fidgets a lot, teases sister, has anger outbursts.He even told us that he feels like a bee buzzing around and wanted it to stop. We started on Ritalin first, but he has trouble swallowing, so we went to liquid. It works great, but he has peaks and valleys so we end up giving it more often. He is enrolled in a preschool that helps prepare kids for public school. Doctor started us on adderall time released. This has been a blessing. The adults in his life noticed how much it helped.But now, he is refusing to take it. We have opened the capsules and offered it in jello, applesauce, pudding, etc. But he seems to be extra sensitive to the way things feel and taste. I'm sure there's a diagnosis for this, but I don't know it. He's a smart boy and knows when we try to hide the meds. I was wondering if anybody could give me advice on getting him to take his medicine.

    Thank you!

  • My daughter actually decided on her own to start swallowing the pills because she couldn't stand the taste of the powder or the texture. She's 7 and we discussed pretending it was a tiny bite of cheese to swallow and she did it. I was amazed! Anyway, your grandson may be highly sensitive as defined by Dr. Elaine Arons. It's not a disability, it's just a personality trait. However it does mean being aware of subtleties, getting overstimulated at times, being more emotional then others and being sensitive to textures, sounds, violence, and lots of other things. Look up " The Highly Sensitive Child", and it will give you more information.

  • I also meant to add that even though he's only four try to explain why you want him to take the medicine. Then listen very carefully when he explains why he doesn't want to take them. Mybe it is the taste or maybe it's a side effect but try to come up with a solution together. No one likes to feel forced into something. Maybe he can have a choice of flavors or decide if he can take the meds some days but not others. Good luck!

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