The Sibling Series - Explaining Medication

A few months ago, a mom asked me on Twitter to write about strategies or tips for raising siblings of kids with CHD. I thought that this several part series could also be applied to siblings of a child with any sort of special needs. This is the second part in this series and it focuses on how to explain medications that your child has to take to their siblings. I've broken my suggestions down according to age range and what I think would be appropriate and helpful for certain ages. 

Infants 
  • They are not yet at the age where they really understand what is going on. However if your child has to wear oxygen, a mask for SVN treatments or has to wear a permnant IV for any reason, they can still get frightened by this. 
    • If the baby seems to cry or get scared at the sight of things your other child has to wear, I would suggest you have the older sibling smile and reassure their sibling as they put on their mask, oxygen, change their IV dressing etc. 
    • If you remain calm and show that it doesn't worry you, it may help as well. 
  • Obviously the baby will not know what is going on at first, but the goal is to slowly get them used to what their sibling has to do, that way it's not so shocking or life changing for them as they get older and are able to understand. For example, my little sister has always seen me put my oxygen on at night, at first she was scared of the sight but as she got used to seeing me with it and I continued to reassure her that it didn't hurt, she doesn't even notice now that I'm wearing it. 
Toddlers 

  • If your child is anything like my nephews and nieces, they will try to get into anything and everything. Which means, their curiosity may make them want to get into their siblings medications. 
    • It's important (as I'm sure you already know) to let the toddlers know that the medication isn't for them without making them think it is scary. 
      • What my family has done is let them watch me take my medication, or watch me put my SVN mask on and my oxygen on but every time they reach for it, we put their hand down and tell them that it is not for them. This way it lets them know that they cannot touch it, but it's not something to be scared of. 
    • There may be machines that the toddler can touch though. Like my nephew who is 19 months old now is allowed to turn my SVN machine off and on, and in the morning my mom lets him come in my room and sit in my lap as I take it. 
      • However there are boundaries. He loves the sound that it makes and he loves the way it feels on his hand whenever it is on, but he is not allowed to touch it if I am not in the room. We keep my door closed whenever I am not in the room, that way he doesn't run in and try to play with it. He is also not allowed to pick up the machine either. Simple rules that let him explore some aspect of my medication without harming him or my machine. 
Little Kids (Age 4 to 9) 

I have a lot of nieces and a little sister, and at some point they showed interest in my medication, especially the pills that I take. If I saw someone down eleven pills at once, I would be curious too! My family and I have come up with a few things we do and let the kids do once they reach a certain age. 
  • I will pour the medication that I am supposed to take into my hand and I let them see it. I will usually bend down or crouch down to their level and I let them look at the pills in my hand.
    • Before I do this though I repeat several times that they are not allowed to touch the medication. Even as I crouch down, I continue to tell them not to touch them. They can point to a pill but they cannot touch if I see them reaching for one, I stand up and tell them no. 
  • I have a weekly case that I put my medication into. I take medication three times throughout the day, morning, afternoon and nighttime. And at the end of the week, I have to refill this. I will sit at the table and refill my pills and I will let the kids sit across or next to me when I do this. There are rules though.
    • They are not allowed to touch the bottles. Since I keep the bottles in a certain order so I know which ones I've put in already and which ones I haven't, they are not allowed to move them or touch them. 
    • They cannot touch the pills. 
    • They are allowed though to close the little tabs on my pill holder once I have put every pill inside of that container. I tell them that they have to wait for me to tell them it's okay, and then they can close it for me. I do not let them re-open it though because the case is a little fussy and if you pull to hard, the medication tends to go flying. 
      • I found that by letting them have a small job or role in helping me with my medication, it lets them see that it isn't something to be scared of. I've also noticed that they love having accomplished something and helped someone as well. My niece would tell everyone in the house afterwards about how she helped me with my medication. 
  • When they see the medication, they may ask what does it do? Use simple terms when answering. I'm not going to tell my four year old niece that one of my medications helps open up the airways in my lungs because she'll have no idea what I'm talking about. So I just tell her, "It helps me to breath better." Short, sweet and to the point. 
    • Whatever you do, don't tell them about the possible side effects. We want them to know that this is helping their sibling. Plus they may not even understand that they are just possible side effects, they may think that it will happen and that can scare the kid. 
  • Demonstrate the medication if you can. When my niece and little sister got curious about my inhalers and my SVN machine, I showed them and let them watch me put the medicine in, put the mask on and inhale. I showed them how I connected the asthma container to the chamber, pressed down and inhaled. If your child has a machine or a medication that they can demonstrate on to show that it isn't scary, have them do that. 
Tweens (Age 10 to 12) 

At this stage, my nieces and my little sister weren't all that interested in my medication. Which is actually in my opinion, a good thing. They stopped asking to help my refill my pills and they stopped asking to look at my pills, which means they are used to this stuff. It is the norm and they aren't bothered by it. This is all good. The goal is to make your child's illness not be the main thing about them, so if their siblings aren't asking questions or don't seem curious about their medicine, that's good. One of my nieces is ten and she is no longer interested in my medication, so I don't bring it up and I don't draw attention to the fact that I am taking my medication. Because I answered questions, let them see my medicine and made it seem like it wasn't such a big deal, they don't view me as my heart defect and lung disease. They view me as Becca, their aunt and that's what I wanted. 

  • If they are still curious, repeat the steps that I talked about above for them. 
Teens to Young Adults (Age 13 to 20 or so) 

This age range can be a little tough. While they may not show an interest in the medication, they will be aware of medication changes and stuff like that. The more aware they are, the more worried they may become. For example, one of my medications caused me to have Thyroid problems and I had to go see a doctor for it. My sisters who are older were told about my doctor appointment by my parents and of course they started to worry. With one medication I am on, it could effect my liver and I get a monthly blood test to check that, so there is some worry there. The older the siblings become, the more aware they become and the more they understand just what is happening to their loved one. Here are some tips that can help you reassure them and ease their worry. 
  • Don't hide things from them. It will only come back to bite you in the end. 
    • However depending on the age, some details such as percentages and the risks might want to be tamed down a bit. What you tell a 13 year old is going to be different than what you tell a 19 year old. 
  • Let them know that you and the doctors are working hard to figure out solutions, new medications and treatment options if something does go wrong. 
  • If the patient gets routine blood work or other tests like I do, to make sure nothing is wrong, don't make a big deal out of the tests. It's routine. 
    • I am very good at knowing my own body. So whenever I get a blood test or any other test to make sure my medication hasn't effected other parts of my body, I remind myself that I am really good at knowing if something is wrong or off. And my mom is also good at being able to tell if I am feeling okay or like my normal self. So my mom and I don't worry because I feel good, and if the patient does that, and you have that same mentality, the siblings will catch onto that and it will be a lot less stressful every time there is a routine test. 
In my 20 years of living with a chronic and terminal illness and explaining it to 12 siblings, 5 nieces and 3 nephews, I have learned that the less scary you make it, the less scared the kids will be in return. Don't make a huge deal out of it and don't make the patient's illness or medication become their identity. I am not Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension to my nieces, nephews and siblings. I'm Becca, the girl who talks a lot, is goofy and just so happens to take some medication. 

Hope and Love,
Becca 



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