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Taking the Medications
You go through many transitions but we dealt with it with a lot of humor and kept in mind the age-appropriate reality of what she could deal with at certain periods of her life. It’s important that you take your medicine even though it tastes really bad- suck it down and get it over with. My daughter was very good about cooperating, always. And it was the same with the shots: from the age of seven she gave herself shots every day. It gave her a measure of control. I think that having that understanding that this is what I need to do, without a doubt, has helped her transition through the last few years when she had to have the transplant and got very sick before. She knew, “In order to get through this, this is what I need to do.” And then just went on. So do it, forget about it, and go on with your life.
So many people talk about numbers when they have kidney transplants or serious diseases. Like, “How long is the kidney going to last?” Or they want a finite amount of time put to it. And you know what? When my other two children go out, I tell them to look both ways before they cross the street and that’s because they could get hit by a car and die. So with Riley it was very important that if she didn’t take her medication, she was going to die. It was not going to be pretty, it was not going to feel good, and it was not going to be quick. They were very tough words but it’s what I felt needed to be said. There was no protecting her from that. I can’t take her disease. If I could take it and do it for her, I would do that in a heartbeat. I would just do it, but I can’t; it’s yours. And you need to own it.
If you read the labels on these drugs, the long-term side effects are very frightening. What I’ve found is that you just can’t do that; you need to just deal with what you have today and what you have maybe next week. They’re handing you pills and telling you that if you are of childbearing age you should not touching these pills without plastic gloves, but you’re putting a gram of them into your child every day. Of course, your child of course won’t experience all of those side effects. We were very fortunate that we didn’t have to go on some of the drug cocktails, because some of them cause some of the really visible side effects. She didn’t have any discomfort other than some initial acid reflux that they took care of. I think steroids were the biggest fear. Of course, when you know what the steroids do long term, you start shaking to the core. But you can’t deal with that. You need to be able to deal with what’s in front of you and then deal with the rest as it comes, and trust your doctors.
One of the things that has turned out to be an erroneous idea was that once you had the transplant and took all of the steroids and everything, you would never look like yourself again. I thought that you would always have that sort of bloated face and there would just be something about you that was not your old self. I was able to accept that with Beth. At first she was very bloated and had the large face and forty pound weight gain. Now it is sort of amazing to me that she is the old Beth again. I mean, to see her today you would never know she had a lung transplant. But that was something I was unaware of— that she would eventually trim-down to look like her regular self.
I think that the hardest thing about medication is that we have to keep changing it. One of the meds would have a side effect, so we had to change it. Then the levels were off, so we had to change it. Having done that on dialysis, all I wanted after transplant was a stable med schedule. Thus, accepting that it was going to change, probably pretty frequently over the first few months, that it wasn’t going to be stable for a while, was really important.
We tried to schedule things around her medications because they were so time-sensitive. We had to make sure that it would fit in with everything we were doing; otherwise we were likely to forget. We actually never forgot a med until over a year post-transplant, and then I panicked because we forgot one. I called right away, and they were very good about it. I haven’t found her med schedule to be overwhelming; it just requires a lot of maintenance.
Lisa takes 23 kinds of medication. A lot of them have side effects, so she has to take other medications to counteract the side effects. For example, she takes an antihypertensive pill to combat the high blood pressure caused by some of her other medications. Prednisone causes water retention, so she has to take something to counteract that. Long-term use of certain medications causes increased kidney dysfunction as well as anemia, so you have to counteract those with other medications. There are just a lot of medications that cause other problems, even twelve years after transplant. The further she gets from transplant, the more we’ll probably find that she’ll have complications with other organ systems because of long-term medication use, but that is the risk you take. We’ve gotten twelve years out of it— twelve years that I wouldn’t exchange for anything.
Parents can teach their children that doctors need to be viewed as special people who take care of their body. They are there to help investigate and maintain your health. It is helpful if a child views seeing a doctor as going to a learning center. Your body is the teacher and the doctor is there to understand the way your body works and to tell you about the ways he can make things work better. When small children are taken on a field trip, they experience and learn new things. Going on a field trip to the doctor's office can be viewed the same way. It's a learning experience and sometimes the doctors have to do tests that will explain why the body is acting a certain way. Our son's favorite book when he was a toddler was "Grover Goes to the Hospital" by Sesame Street.
There needs to be a consistent reward system such as a chart on the refrigerator with stars, or conditions on watching television or playing that are connected with the medicine schedule. At a certain time every day, however many times a day, that child needs to know that it's medicine time. It's up to the parent to be consistent always.
We got Nick a watch that could have several alarms set on it and he set them for his med times. He uses a weekly med minder container. He also has a medication chart with all the meds, doses and times listed for reference. While in school his buddies were so nice and protective and would ask if he had taken his meds and remind him to bring them along on any outings. If he was going to be at the movies or someone's house he had a smaller container to carry in his pocket with the meds that he would need. We were blessed because Nick had a few years to get used to the med routine before he went off to college. In the beginning I would sort all the meds in the weekly minder each week and his dad and I would remind him of each dose. He came home with a central line also and IV meds for 90 days. In the beginning I did all the cleaning and dressing and IV meds also. But very gradually after observation on his part, he began cleaning and dressing his line himself, hanging the IV and remembering meds. As he got older he started filling his meds in the minder himself and we had to start letting go and trusting him. There were a few times he would test us and take his meds late but in the end it was his life and he had to become responsible. By the time he left to go back to Oklahoma for college he was doing all his own meds. I do all the ordering but have to rely on him to tell me when he needs them ordered. After a year at college he only forgot his meds totally twice. He always called me if he forgot. Early on I taught him if he forgot he should call the pharmacy and ask them what to do. Sometimes they would say take them now and take the next dose later and sometimes they would say just start up with the next dose. Either way he knew who to call for info and I reassured him that he was only human and not to be so hard on himself. I told him to just try harder and keep remembering like before.
I think we had to make it as simple as possible and do something that he liked. There were some medications that were bitter, so I mixed them with chocolate syrup. In the first three months, there was a medication that was hard to take, so I mixed it with yogurt or with apple sauce. I tried to make it a fun thing to do. I really think that pushing a lot and making them nervous will have a negative result. So I try to be very cool about it.
With almost any major medical condition come medications, and often lots of them. When Nick was first diagnosed with Wilson’s the doctor told Nick that if he did not take his meds he would die. Nick smiled. The doctor stopped him and said, “I did not say that you would get worse; I said that you would die.” I believe that had an enormous impact on my son. After the transplant, he remembered almost all of the hospital experience and has said that he never wants to do that again, so he is very good about his meds. We got Nick a watch which could have several alarms set on it, and he set them for his med times. He uses a weekly med minder container. He also has a medication chart with all of the meds, doses and times listed for reference. While in school his buddies were so nice and protective and would ask if he had taken his meds and remind him to bring them along on outings. If he was going to be at the movies or at someone’s house he had a smaller container to carry in his pocket with the meds that he would need.
By the time he left to go back to Oklahoma for college he was doing all of his own meds. I do all of the ordering but have to rely on him to tell me when he needs them ordered. After a year at college he only totally forgot his meds twice, and he always called me if he forgot. Early on I taught him that if he forgot, he should call the pharmacy and ask them what to do. Sometimes they would tell him to take them right away and take the next dose later, and sometimes they would tell him to just start up with the next dose. Either way, he knew who to call for info, and I reassured him that he was only human and not to be too hard on himself. I told him to just try harder and keep remembering like before. |
This is What I Need to Do
Regular Self
Responsibility for Medications
Know all the Meds
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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