In November 2015, we joined together with four other ADHD parent groups in Scotland to survey parents about their experiences of having a child with ADHD and of ADHD medications. We did this so that we could respond to a Scottish Medicines Consortium consultation.
Who responded to the survey?
87 parents, with 92 children with a diagnosis of ADHD, took part in the survey.
The parents are members of ADHD Parent Support West Glasgow, Mindroom, Dundee and Angus ADHD Support Group and Perth & Kinross ADHD Support Group
The children involved were aged from 6 to 18. Most were primary school age.
Children had been diagnosed at between 3 and 15 years of age. The average age at diagnosis was 8.
Headline findings from the survey:
Parents are naturally very cautious about putting their children on ADHD medication and don't take the decision lightly.
85% of respondents' children had been on an ADHD medication at some point, and 75% are taking one now.
Almost all children taking medication in the survey are on stimulant medication rather than non-stimulants, so bear this in mind when looking at the comments made.
The main reported side effect of stimulant medication was loss of appetite during the day.
Respondents reported many benefits of taking medication for their child and their family, and most felt that the benefits outweighed the drawbacks.
What did parents say about the benefits of ADHD medication for their children?
66 parents (out of 87 respondents) gave examples of ways in which medication had helped their children. For example:
"His school behaviour is 100% better which gives him the chance of a good education."
"Increased focus at school and during sporting activities at the weekend. Much greater ability to sit through a meal."
"Is able to concentrate more and finish work especially at school. Not so hyperactive. Able to sit for longer periods of time and not chat uncontrollably."
"The medication allows my son to concentrate in school and at his social clubs. Without the medication my son finds it difficult to sit down for more than a few minutes."
"The medication makes him dramatically calmer, and because so much of the agitated, aggravating behaviour goes away, I would say that it enables him to focus much more and for his real sunny personality to come through. It helps him very much at school - without it I'm sure he wouldn't be achieving much at all academically, and might well have been excluded from school much more than he has been."
"There Is a massive difference and progress within school."
"(He is now) well behaved, can have a conversation, listens."
"Able to engage with school and social events."
"Calmer, not as fidgety, doesn't argue as much, can hold more reasonable conversation. Focus is improved."
"Better at school, feels emotions, is able to think more about consequences, happier."
"Calmer , more level headed , concentration improved, better at coping with her friendships."
"Has gained better concentration at school, he is able to build friendships and he is will to take part in social activities e.g. school football team."
"He is more focused in all his day to day activities and you see a notable difference in him when the mess have worn off just as he comes home from school to having his evening meds at 4pm. He is happier as he is now able to put onto paper in school what has been in his head."
"Helps him process situations before reacting, helps him enjoy social situations positively, helps him concentrate at school. (These are) all his words."
"He told me it helps him to 'think clearer and understand stuff quicker'. To me he seems more settled, can be more focused and organised, shows more initiative and appears to be more accepting of others points of view."
"My son couldn't complete tasks, couldn't sit and colour in or build with Lego. Since taking his medication he can do these things. He was always in trouble at school, for ever getting bad reports. Now it's like a different child (words of his teacher)."
What did parents say about the side effects of ADHD medication for their children?
83% of parents whose children were taking medication mentioned at least one side effect that they had noticed.
15 out of 74 parents whose children had taken medication said that their child had had to stop or change medications because of problems with side effects.
Because nearly all the parents whose children were taking medication in our survey were using stimulant medication, these results are not applicable to non-stimulant medication which tends to have different side effects.
Appetite loss and problems sleeping are very common but many parents said they were manageable...
"Appetite changes, during the day less hungry by 4pm is ravenous."
"Goes to bed much later and catches up on food at the end of the day. Both are manageable."
"Initially his appetite was suppressed when he first started on medication but no longer has this effect."
"Loss of appetite. difficult to get to sleep."
"Medication has been very positive for us , only side effect we've noticed is weight loss."
"The medication definitely causes loss of appetite during the day, so we have to add lots of calories early morning and late evening so he keeps his weight up."
Some parents mentioned problems with emotions and mood.
"He can seem out of sorts - upset, withdrawn."
"More angry at times."
A few had experienced problems with fast heart rate:
"My son tried both medications, the Ritalin caused his heart to race and made him short of breath."
Some parents mentioned wearing off or rebound effects, but these may not be a side effect.
"Can be more irritable in the evenings, have had some major meltdowns. We manage them by having a routine for homework (regular short bursts) and lots of after school sports activities."
The bottom line
Every child is different, and the decision to start a child on medication for their ADHD is an individual one which must be taken carefully in discussion with a specialist - in Scotland this will usually be a child and adolescent psychiatrist. Our survey results can give a flavour of the benefits and drawbacks which other parents have experienced, but they are not a guide to how ADHD medication will affect your child.
When discussing your options with your child's specialist, you could consider asking these questions:
What are the options for my child?
What are the pros and cons of each option?
Where can I get more information and support to help me make the right decision?
How much should my child be involved in this process (depending on their age) and what's the best way to involve them?
Once we have made a decision, how will we review and re-visit it in the future to check that it remains the right one?