7.4 C ATEGORIES DISCLOSING THE CHARACTERISTICS OF BEING THE PARENT OF AN
7.4.1 Interaction with medical personnel and the use of medication
7.4.1.3 Medication
Four themes related to medication will be discussed, namely: medication and dosage, the process of taking medication, other people’s beliefs about medication, and medication as only part of the toolkit.
Medication and dosage
Many parents had mixed emotions about using medication, and for many putting their child on Ritalin was a difficult decision to make. It can also take some time between the diagnosis and the parents actually deciding to use medication.
Brenda did not want to put Conor on Ritalin as her sister-in-law’s children were on Ritalin and were “doped out, very tired and depressed”. Brenda kept hoping she’d come across a professional who would say that Conor did not need Ritalin. It took a year from diagnosis before Brenda started Conor on Ritalin. Gill and Dylan “fought
against” putting Doug onto Ritalin for almost two years. They tried everything else first. Two of Michelle’s children are on Ritalin. For Michelle too, Ritalin was “really a last resort”.
Belinda, Rose and Pat all had similar biases against Ritalin. Belinda found it “was difficult to put Evan onto Ritalin” as the family has a “very natural approach to illness”.
Pat never goes to a doctor, she sees a homeopath; and she did not even want to
“know the R-word”. When the psychiatrist suggested Ritalin, Rose was against it as she had been brought up homoeopathically.
In Mia and Carrie’s case, their husbands had more “issues” with Ritalin. Mia’s husband, Dave, initially felt: “My child will never go on Ritalin.” Mia, however, had gotten to the point where she “needed to make a big change”. Carrie’s husband also had more issues than she did with Ritalin. Carrie feels they “tried everything” besides Ritalin. They did the “homeopathic route” and the “supplement route” and the “herbal stuff”, but “no luck”. Carrie and the paediatrician had to persuade him to try it with Luke, and he finally agreed “with a heavy heart”.
Marie was initially “very against Ritalin” because she had “heard it is a bad thing and that it stunts their growth and that you’re a bad mother if you give them Ritalin – it’s the worst thing you can do”. Sandy didn’t really want to put Aidan onto Ritalin, and Samantha too felt “it was a big decision” putting Claudia onto the medication. Zelda had to think about putting Karl on Ritalin – “it’s not just a case of give it to them”. Beth felt it was a “massive decision to make” when she put Eve on Ritalin. Beth did “a lot of research” about Ritalin and, in the end, “it was not an emotional decision – it was a purely practical decision”.
By contrast, there was “no issue” for Angela when it came to putting Tina onto Ritalin:
“quite honestly when you are faced with a child like Tina you are quite happy to try it”.
Belinda even had to engage in a “big fight” to put Cathy onto Ritalin:
“You don’t want to put your children on Ritalin, you really don’t, but when you see the results you can understand.”
Once the child had started Ritalin, parents could still have conflicting feelings. Brenda still feels guilty about putting Conor onto the medication and wonders whether she is doing the right thing. Zelda, however, feels that giving Karl the medication means that he “has the chance of a normal education and getting out of school and having a job
and studying further or whatever”. Eugene is now 19-years-old, and looking back Rose believes they “would not have survived” without Ritalin.
Although a lot of the parents were reluctant to use medication, most parents reported a significant change in the behaviour of their child. Cantwell (1996) states that stimulant medications help seventy percent or so of the children who take these drugs. A number of the parents mentioned the positive effects of the medication on the school context. Numerous studies of stimulant medication with ADHD children demonstrate significant improvements in academic productivity and sometimes accuracy when the children are on medication (Barkley, 1997; Pelham, Bender, Caddell, Booth & Moorer, 1985; Rapport, DuPaul, Stoner & Jones, 1986).
Brenda believes that Conor “has turned around”. Belinda feels that the day Evan went on Ritalin “he was a different child. He could focus and started learning.” Angela believes “you could actually watch the effect” when Tina took Ritalin: “Within 20 minutes there was a difference.” On the day Johan started taking Ritalin, he phoned Marie from college to say: “You won’t believe the difference. I can actually hear what the teachers are saying. I can actually start concentrating.” When Mia and Dave started Lynn on Ritalin the family saw a big “turnaround – literally within 72 hours we had a different child.” With both girls, Mia feels it is like “their brain’s suddenly been switched on”. Pat feels the difference in John was “like night and day. Big, big difference.” When Beth took Eve back for her first assessment of the medication, Eve reported that she was finding it beneficial. Gill says: “thank God for Ritalin.” With Luke, Carrie found the effect “was literally instantaneous”. With both boys, Carrie feels it makes a difference in “how they socialize” and “how they concentrate”. For Rose, Ritalin “was magic”.
Some of the parents have experienced for themselves the difference that Ritalin makes. Pat has ADHD and she knows Ritalin helps her focus: “I tell you it works like a charm”. Dylan went onto Ritalin about a month apart from his son Doug. Dylan can
“definitely feel a difference” since he has been on Ritalin. Dylan “feels more in control” when he takes Ritalin and he feels far more self-confident. When Luke started on Ritalin, Carrie “wanted to see what it did”. And so she took it too. Carrie
“can tell you how Ritalin works” because it worked for her: “It was unbelievable”.
For some parents there is a realisation that Ritalin is not a cure-all. For Mia and Lynn it has not been a case of “she’ll get the medication and everything will fall into place”.
Lynn still struggles through every year. Sandy has also never seen “a huge difference” in Aidan.
It can take a long time to get to the correct dosage of medication, and it often involves time and constant monitoring. Dosages may also need to be adjusted from time to time. Brenda’s son Conor was on three different trial doses of Ritalin. Pat had limited success with John on the short-acting Ritalin before he was moved onto the long-acting Ritalin. Sandy watched Aidan being moved from short-acting Ritalin, to the long-acting version, and back to the short-acting again. Carrie first had Luke on the short-acting Ritalin. Later they tried the slow-release version, but that didn’t last as long for Luke. When the long-acting version came out, Luke went onto that. With Peter, Carrie found he could not tolerate Ritalin at all when he was first put on it. He was then put on Reactivan. Eventually the Reactivan was having no effect and they decided to try Ritalin again; this time “it worked fine”.
A number of the children experience side effects with Ritalin, the most common being the suppression of appetite. Conor had terrible headaches when he first started on the medication. He also gets very lethargic and depressed, and his appetite is suppressed. Brenda does not want to put him onto an antidepressant to “cover the effect” of Ritalin. Johan experienced an initial dizziness and shakiness, but that disappeared after two days. Marie finds it also suppresses Johan’s appetite in the mornings, but he eats well at night. Initially when Lynn and Kim started taking Ritalin they were tired and got a bit of a headache. Lynn will not eat during the day, but Mia finds she makes up for it on weekends and in school holidays. With John, Pat finds, on the one hand, that it subdues him and makes him tearful. On the other hand, he is very aggressive and non-compliant when it wears off. Pat does not feel the side effects are bad enough, however, for her to take John off Ritalin. In the beginning Karl would not eat if he took the medication. Zelda now makes sure he only takes Ritalin after he has eaten breakfast. Aidan has a lot of side effects: Sandy reports that he cries a lot, he is very aggressive in the afternoon, he’s emotional, he’s uptight, and he’s difficult to work with. Doug’s appetite is suppressed. He generally doesn’t eat lunch, but Gill finds that by supper he’s starving. The only side effect Gary and Helen have is a lot of abdominal discomfort. Helen does not eat during school hours, but Michelle feels that Gary has actually improved in that respect. Before Michelle would pack him lunch and it would come home untouched. Now he will eat his school lunch and even ask for food. Ritalin affected Eugene’s appetite, but Mike and Rose made sure he ate a good protein breakfast before taking it. They also found that
protein snacking him through the day, rather than sticking to three proper meals, works better for him.
Samantha found the side effects to be too extreme with Claudia. Claudia had stomach cramps, battled to sleep, and it suppressed her appetite. Claudia was eventually taking Ritalin, plus medicine for stomach cramps, plus medicine to make her sleep, as well as medicine to make her want to eat. Claudia lost more and more weight, and Samantha eventually opted to take her off Ritalin.
Some of the children realise they are a “different” person on the medication. Belinda feels that Evan knows “that he is different when he is on it and when he is off it”.
Even his friends know he is different and say he is more sociable and outgoing when not taking Ritalin. Zelda believes that Karl knows what it feels like “to be Karl on Ritalin and Karl not on Ritalin”. He can “separate the two” and is “totally aware of what the medication does”. Beth reports that Eve felt “strange” on the medication and
“not herself in a negative way”.
The process of taking medication
Explaining taking the medication to the child
Belinda and Rob tried to explain to both Evan and Cathy how Ritalin works. With Evan they used the metaphor of a motorcar. They explained that the child with ADHD is like a motorcar without brakes, and Ritalin helps “him put on the brakes”. Cathy has a friend with diabetes, and Belinda and Rob explained to her that she needs Ritalin in the same way that her friend needs insulin.
The educational psychologist, as well as Marie and Leon, explained to Johan about taking the medication. Both Mia and the psychiatrist explained to Lynn and Kim what Ritalin would do, and Mia asked the girls to let her know if they “don’t feel right”.
When John first went on Ritalin, Pat felt he was “too small to explain taking the medication to”. Recently Pat took him to the psychologist and asked her to explain:
“She drew little pictures of messages and all that kind of thing”.
Sandy explained to Aidan that taking Ritalin would help him to sit still, and take in what the teacher says, and help him to concentrate.
The child’s willingness to take the medication
The issue of medication can be complicated if the child is not willing to co-operate in the process and take the medication. Belinda finds that Cathy is “quite happy on the medicine.” Mia feels that both Lynn and Kim are “fine with taking it”. Taking Ritalin is
also “not an issue” for Karl and he is quite happy to take it in front of friends. Taking Ritalin doesn’t really bother Doug either.
Johan “really wanted” to take Ritalin and if he forgets to take his tablet he will let Marie and Leon “go to great lengths just to get that tablet to him”.
There seems to be a realisation that the world is a friendlier place when you take the medication. John doesn’t have a problem taking Ritalin. Pat believes he has realised that “with it the world’s not so cruel and harsh and people don’t shout at him all the time”. Michelle feels that both Helen and Gary “are quite happy taking Ritalin. They know that they need Ritalin to cope and concentrate.” If on occasion Michelle has forgotten to give Gary his tablet, he has had teachers remark that he obviously hasn’t had his tablet because he is behaving badly. Michelle feels that Gary now
“associates Ritalin with the good behaviour”.
Luke, on the other hand, does not enjoy taking the medication. Eve took Ritalin for about two years and then decided she no longer wanted to take it. Eve likes to feel like “the life and soul of the party” and she believes Ritalin takes that away. Conor is reluctant to take the meds “because he knows he doesn’t feel good on it”. By the time of our interview, he had “refused utterly” to take it.
The child’s responsibility to manage the process
When the child is young, the parent is responsible for managing the medication process. But what happens with an older child? In some cases, an adolescent might even want to come off the medication.
When Evan was younger, Belinda and Rob simply gave him Ritalin and “he just took it”. At the end of primary school, Evan tried to come off Ritalin, and he has tried to come off it each year in high school. Rob and Belinda have allowed him to do “a little trial” each time, in conjunction with the doctor. Each time, Evan himself has decided he needs Ritalin; he can’t focus without it.
About once a year, Luke will decide: “No, it’s time to stop this”. Each time he decides he needs to go back on it. He realises he can’t concentrate without it. Carrie believes
“he has seen the benefits.”
Zelda has always tried to involve Karl in his treatment. She has tried letting Karl take responsibility for the medication, but had to change her mind when he took two Ritalin tablets, instead of one tablet, one morning.
Drug holidays
Some parents make use of drug holidays and others choose not to. Evan and Cathy, Lynn and Kim, John, Karl and Doug do not take the medication on weekends or during holidays. When Eve was taking Ritalin, she did not take it on weekends or during holidays either.
Gary and Helen take Ritalin seven days a week, and Luke and Peter have also never been given a break from the medication.
Eugene does not take Ritalin on weekends or during holidays. Rose feels it made weekends “noticeably harder going”, and school holidays were also “a nightmare”.
“Those days stretched out before me like an eternity. He would be wild, bored and very angry and by the time he returned to school I was glad; depressed because I was glad, but sad at all the lost opportunities.”
The difficulty of mornings
Mornings were mentioned as a difficult time for parents. It is likely that this is a result of the lag between the time the child is woken and the time the medication kicks in. It is difficult to remain patient while assisting the child to prepare for his/her day, and it is difficult to begin the day with such negative feelings. Mia finds that for Lynn especially, getting ready in the morning and “trying to get out of the house” is a problem. Marie finds that Johan’s sleep and waking cycles are disturbed and if she doesn’t wake him, he simply doesn’t wake up. Mornings are also always a difficult time in Pat’s household. It takes half-an-hour for John’s Ritalin to take effect and
“nothing happens” in their household until it has taken effect. Trying to do anything before the medication has taken effect is “a complete and utter waste of time”. Pat admits that there are mornings where she has screamed and shouted at John “like a fishwife” and both of them are in tears by the time she drops him at school. For Zelda mornings are a battle and consist of an endless: “Karl have you brushed your teeth?
Karl, have you eaten? Karl, have you packed?” Zelda feels that “you’ve got to go step by step. You just can’t do anything else. It’s like looking after a baby.” In Rose’s house, Mark would come back home for tea after dropping Eugene, because he and Rose were so “fraught” most mornings just from getting Eugene to school.
Other people’s beliefs about medication
Once parents make the decision to use medication, they often have to contend with the belief system of extended family, friends and teachers. This is a difficult aspect, as parents often still have misgivings themselves. They are now put in the position of
either educating those around them, or defending their decision. Parents are also constantly faced with conflicting recommendations from teachers and extended family and the popular media.
Brenda has had people say: “Do you realise what you are doing to your son?”
Brenda response is that they obviously don’t know what they are talking about, and she tells herself that she is doing what she feels is right for her son at this time.
Belinda has had Cathy’s teacher ask her if Cathy can stop taking Ritalin because she is far more “outgoing and bubbly and happy” when she is not taking it. Belinda had to explain to the teacher that Ritalin it “not for social behaviour, it’s for the concentration”.
Mia finds “people are very quick to judge” her putting Lynn and Kim on Ritalin, and she feels “that there is a lot of ignorance out there”. Mia has had friends tell her that she has taken the easy way out. Mia, however, feels she has tried “all the other options, such as the homeopath and natural supplements”. If any of it had made a difference, Mia would “have stuck with it”.
People whom Michelle has met socially have asked: “How can you put your kids on Ritalin?” Michelle feels that people question her decision because of ignorance and the sensationalism in the media: “It’s just something they have heard. They don’t really have an informed opinion.” Michelle also gets “a lot of flack” for putting the children on Ritalin from the nutritional physiologist she takes the children to, and the nutritional group she is involved with. They disagree with her view that nutrition is not a replacement for Ritalin.
Carrie has had run-ins with the school about the medication. When Luke went to high school, his grade tutor said to her “that under no circumstances should a boy in puberty be on Ritalin.”
Medication as only part of the toolkit
For many of the parents, medication is only part of their treatment strategy. Many of them have tried, and are willing to try, a variety of things. Often the medication does not “fix” their child, but in reality it only helps the child. As stated in Chapter 4, some physicians have suggested that ADHD may be due to bodily reactions to normal food constituents (Wender, 2000). One possibility is that some children may be allergic to