Siblings of children diagnosed with a severe childhood epilepsy known as a developmental and epileptic encephalopathy (DEE) often play an integral role in the care of their brother or sister. While they may learn patience and compassion at an early age, the mental health impact on these siblings can be enormous and often overlooked.
Children who have a sibling with a DEE may experience very strong emotions such as guilt, anger, sadness, fear, anxiety, and depression. The Siblings Voices Study, which included siblings in a variety of age ranges, was created to help families understand more about the impact of having a brother or sister with severe epilepsy and how these siblings adapt.1
This webinar discusses some of the key research findings of the Siblings Voices Survey, including some strategies to help improve the mental well-being and social development of siblings and resources that are available for families.
- Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Laurie D. Bailey, Lauren Schwartz, Tracy Dixon-Salazar, Mary Anne Meskis, Bradley S. Galer, Arnold R. Gammaitoni, Carla Schad, Epilepsy & Behavior, 2020, Volume 112, 107377
To hear from two college students about their experiences growing up with a sibling who has epilepsy, watch or listen to the Seizing Life episode Growing Up Alongside a Sibling with Epilepsy featuring Emma Cardwell & Nathan Bliss.
About the Speaker
Dr. Kelly Knupp is Associate Professor of Pediatrics and Neurology at the University of Colorado. Dr. Knupp practices medicine at Children’s Hospital Colorado in Aurora, Colorado and is the Associate Research Director of Neuroscience Institute and Director of the Dravet Program. Her interests are epileptic encephalopathies including Dravet Syndrome and infantile spasms. Dr. Knupp is also a member of CURE Epilepsy’s Scientific Advisory Committee.
Q&A with Dr. Kelly Knupp
For siblings of children who have frequent seizures or other types of associated unpredictable, visible medical things that need urgent care like respiratory events, is there a language, or are there tips to make this easier on the sibling?
Dr. Knupp: I think it’s really important to meet the siblings where they’re at. But I do think it’s important to talk to them about it. You may have some local resources with child life who may be able to come up with some very age appropriate terminology to discuss that. I know at my institution, our child life personnel are available to talk to siblings just as much as they are to talk to patients and are really good at figuring out how to turn that terminology into something that’s child-friendly. So ideas like having an IV that goes into your blood vessels paints a very different picture for a five-year-old than it does for a 15-year-old. So it’s really important to think about the words you’re using and how you describe it.
But I think as a parent, what’s also important is to ask clarifying questions to see if the sibling has really understood what you are trying to describe, or if they came up with something scarier in their head. That’s more often what happens, is we use words and children may misinterpret that as something scarier than what’s really happening. But I think knowing your resources and trying to find help with that can be really helpful. There are a number of books out there that can help with some of these specific things as well. And usually child life is aware of those books, or if there’s a family library at your hospital, they often have a number of these books around that can help describe those things.
Are there other helpful literature or resources in general to share with families who are struggling?
Dr. Knupp: Again, I would probably go back to the child life specialists and the family library. They often have sort of the best group of books, the… We actually turned to our epilepsy foundation to provide those books about epilepsy. So I think… I wish I knew of a great resource that listed all of those books. And maybe if somebody has a good idea of those resources, they can post them in the chat to share them with us, that really would be an amazing resource for families if there was a website that they could go to and find those.
One person notes that she believes that there’s a list of books on epilepsy.com. As a sibling myself, I pay attention to this space and there are lots of great books that span the age ranges. I was just reading one over the weekend that was really targeted to the younger set to talk about a sibling with disability. In this case it was somebody with autism, but clearly many of the context are the same. This particular book also had a workbook like a coloring book where a child could express their emotions.
Dr. Knupp: Along that line, one of the things I didn’t mention, I’ve had a number of siblings who have used an art therapist, which has been really helpful. It’s been really impressive to me to see some of the artwork that comes out of that.
What is most impressive to me is that oftentimes what the children think is going on is far worse than what’s really happening. particularly when our patients are going through things like epilepsy surgery, we have found that it’s really important for those siblings to be able to come into the hospital and see what’s happening to their sibling because otherwise what they picture when they hear about things like intracranial electrodes and surgery is so much worse than what’s really happening. It’s really important for them to see the real thing and know that their siblings are safe, but art therapy can be particularly powerful and helpful.
This person has found that her parents were also emotionally impacted, what resources are available for them?
Dr. Knupp: Yes. Parents definitely can be emotionally impacted by this. I think that every parent who has a child with a chronic illness really has to go through the whole grieving process. I think it can be really helpful to talk to other parents. I think it’s helpful to have a good social support network and it may require therapy. It may be that they really do need to sit down with a counselor or a therapist to work through some of that, and also have some insight of whether they may have some underlying anxiety or depression that could be contributing to this as well. And grieving is something that everybody does in different ways. So some people move through the grieving process fairly quickly, some people stall at one of the stages. So I think trying to get help to continue to move through that process and come to a place of acceptance can be really helpful for everybody in the family.
To your point, Kelly, I think we are recognizing it as a community that this is not post-traumatic stress, this is traumatic stress and chronic stress and that process starts very early and it’s good to start addressing it early for all members of the family. So here is a question. There are so many ways a severe epilepsy divides a family in an effort to maintain some normalcy for siblings versus keeping the child with epilepsy safe. How do families accept the new normal and not allow it to divide a marriage?
Dr. Knupp: Boy, that’s a challenging question. That’s a very complicated question and we know that divorce rates are higher in families with chronic illness. I think the more parents are aware of that, the more they are open to receiving some support and help through that. I think it’s also important for parents to recognize that their own individual processes are going to be different between the two of them just like it is with any other crisis or trauma that they have to deal with. And some families really do better when they’re apart than when they’re together, which is hard to say but that is the reality sometimes. But I think trying to intervene and trying to find some time to focus on yourselves as a couple can be very helpful.
That’s where extended family and friends often come in. It can often be very difficult to receive help from people outside your immediate nuclear family but I think that can be really helpful. Many of those people want to help you, they just don’t know how to help you. And so trying to establish that communication so that you can be clear with them of it doesn’t help me when you come empty my dishwasher, but it’s really helpful if you can take the kids for three hours so that we can go for a walk together and try to reconnect and trying to find ways to maintain your relationship that way. But I don’t think that there’s a perfect answer to this. Honestly, there are families with healthy children who struggle with this as well. So it’s not something unique to children with chronic illness, it’s just something that we see more often in children with chronic illness.
Can you discuss strategies for talking about risks of death for our eight-year-old with severe DEE has been near death multiple times and is in a hospice program? While those high risks for imminent death have been less frequent recently, should we still be open about discussing the risk with a five-year-old sibling?
Dr. Knupp: Boy, that’s tough. And I think this is where things child life can be really helpful. I mean, this is what child life does, is helps you have these difficult conversations. I think for the five-year-old, it’s really important to ask them where they’re at. And I would keep in mind that many siblings do worry about this and they may be afraid to talk to you about it. And so it may be helpful to say, “Hey, when you think about your brother or your sister, what worries you are you? Are you worried that he can’t run? Are you worried that he eats different food? Are you worried he’s going to die someday?” And try to figure out where that five-year-old’s at so that you can answer their questions in the place that they’re at. And I do think it’s important to talk about it and also to let them know that it’s not their fault. Particularly for a five-year-old the world still sort of revolves around them and so things that are not their fault still feel like their fault. And I think that’s really important to talk about that.
So here is sort of the intermediate age. The siblings in our family showed previous unspoken anxiety and concerns as they began planning their own families, thoughts about this.
Dr. Knupp: That’s very real, right? The question that comes up is will this be what my family looks like and do I have to worry about my children having this epilepsy? I think we’re in a better place now answering those questions than we were 20 years ago, because we know so much more about genetics. But I think having open honest discussions about that … I know that in my practice I’ve met a number of families who had sort of stopped looking for the cause of epilepsy for several years because it was exhausting, it was disappointing, it’s expensive, and it didn’t make a difference in the day-to-day care of their child. But when siblings started to approach sort of family planning age, it took on a new significance to reach out and have genetic testing done to figure out what were those risks really. So I think as much as you can provide information that usually is helpful.
I think also having open discussions about expectations of whether who will care for this child as parents get older. Oftentimes it’s very surprising because many times siblings will say, “That’s what I’ve always planned to do.” And the parents say, “Boy, I don’t want you to have this burden.” So it’s really important to have that discussion so that there’s a clear plan and clear expectations. Because more often than not, that’s the way that discussion goes: Parents are trying to find a way to reduce the burden and the siblings are saying, “No, no, no, I want to do this.”
Our focus was on our child with epilepsy and the therapy for coping with his diagnosis. How do we introduce this with his older sibling after the fact and make sure we didn’t neglect their feelings during this entire process of learning and understanding?
Dr. Knupp: Well, first of all, I would give yourself a break because you can’t undo the past. So if you think that you may have neglected something, what’s done is done and you can’t undo that. I think it’s important to focus on the here and now and moving forward and checking in with them and asking them, how are they feeling? Maybe if they’re older, talk to them about how you’re feeling and what it felt like in those times in the past that you felt like you had to do everything you can, and all of your energy had to focus on that and now you want to move forward. But I think it’s really important to be forward-looking with this. We’re not perfect, none of us are perfect and we’ve all had those moments where you really can’t undo that. But what’s important is to recognize the situation you’re in now and try to find the best path forward.
Just to clarify that child life is usually services at hospitals. Is that the case?
Dr. Knupp: Child life is usually services at hospitals, the vast majority of children’s hospitals have both inpatient and outpatient child life experiences. At my hospital they are able to meet with people before procedures, before appointments, they’re able to meet with siblings to talk about things like this. We actually have our child life specialists come up to our epilepsy camp to help out there. So child life specialists are usually open to a broad range of supports that they’re able to provide.
So somebody is asking for ideas for affordable counseling for parents. It’s definitely chronic anxiety and stress that would be lifelong. Is there anything available through hospitals for the parents?
Dr. Knupp: I think that’s hospital dependent. Here in my state, we would usually refer somebody to the Epilepsy Foundation for that as opposed to the hospital because we’re a children’s hospital. But I do think reaching out, and this again comes to sort of knowing your local resources. There often are sliding scale offerings for counseling available in a variety of places, and so it would be very helpful to start talking to your providers to see if they’re able to identify those. Interestingly, usually your primary care provider has the best knowledge of what those resources are. So it may not be your neurologist, it may actually be your family practice doctor, your internal medicine doctor or your pediatrician who may be able to identify those resources for you.
I wanted to learn more about the BLC, basic life support. Where does one find more about that? Is that something that might be available through hospital resources or hospice communities? But families are so burdened with all they have to do, how can we get them there quickly?
Dr. Knupp: Basic life support is usually offered through Red Cross. It can also be offered through your local fire departments, your hospital. So there’s lots of different resources for basic life support. As I have started mentioning this to families, it’s something that teenagers have really been open to taking. For many girls who may be taking babysitting courses or things like that, basic life support is usually part of that. But it’s a very systematic approach to what to do when somebody is in trouble and really can go a long way to alleviate some anxiety of what will I do if my sibling runs into trouble. I’ve been really surprised that many of the sisters may have already taken it with their babysitting courses and things like that, but many of the brothers have been really excited to take these courses and really do think that it helps a little bit in alleviating anxiety.
Here is less of a question, more of a statement, but I think it’s important to just share these things. So this person says that they have twins and a severely medically refractory child with severe SCN1A epilepsy and his needs completely consume me. I’m home schooling too to keep them healthy. I feel like I’m just meeting everyone’s needs and not spending quality time with my medically fragile child along with the twins. I feel guilty.
Dr. Knupp: I acknowledge that. I don’t have a way to fix that. I think that the truth is parents feel guilty all the time because we can’t be everything to everybody all the time. And that sounds like a particularly stressful situation. I think the first step is recognizing that you feel guilty and if you’re able to find ways to get some help so that you are able to first take care of yourself. Because if we’re not able to take care of ourselves, it’s really hard to take care of our loved ones. We sometimes forget that because we’re so busy taking care of our loved ones. But even if it’s taking a 20 minute walk, taking a break for a cup of coffee, taking those moments.
I really do encourage families to reach out to your friends and family for that type of help. They oftentimes want to help you and they just don’t know how. And that’s something that’s fairly simple, that maybe you just go sit in the backyard. So sometimes I know it’s hard to be away from your child with epilepsy because nobody else knows their seizures as well as you do and nobody else manages their seizures as well as you do. But if you can just get 20 minutes in the backyard to catch your breath, now they would probably be more than willing to help you with that and to identify those resources so that you can take care of yourself in that situation. I think parents always feel guilty and I’ll be the first to admit, I don’t have any children with chronic illness and I still have many, many moments of guilt for my parenting.
Thank you for that realism. But here’s an interesting point. While many families are able and want to help, this question is how do you get in-laws or extended family to believe that your child is having seizures and not faking it?
Dr. Knupp: I’ve encountered this. And I think oftentimes in that situation, it’s really helpful to invite them if you’re willing to, to visit with your neurologist so that your neurologist can help out with this. I’ve seen this come up not just with are these seizures really happening, but is this the management that really needs to happen? Sometimes we see this with ketogenic diet management where grandparents just don’t understand why they can’t slip a scoop of ice cream to the child and why that would be so detrimental. And so in those situations, it can be really helpful to enlist some help. I would definitely recommend that you give your provider a heads up that that’s what you want to discuss and what the concerns are so that they know to specifically address that during the visit. But that can be a really helpful way to manage that.
Here is one. It’s actually coming from a sibling and it’s actually a medical question, so I just want to change gears but sometimes it’s hard for siblings to get this information and so I do want to pose this question. Why would increasing dosage of medication be the go to answer when seizure frequency increases? Thank you in advance, worried older sibling.
Dr. Knupp: Often our thought when we’re doing that is if the medicine’s helping at a lower dose, it may help more at a bigger dose. We always have to be cautious though, because sometimes our medicines have the opposite effect. Sometimes our medicine can trigger seizures instead of helping with seizures. But we always want to make sure we maximize the medication before we move on to another medication. Usually that is our go-to, is to increase medications. The other thing that can contribute to that is particularly in our pediatric population, is that kids are growing. We may have to keep adjusting doses because the kids are getting bigger and so they need more medication to account for that bigger body size.
Thank you. As a sibling myself, I found it helpful to also go to medical appointments and learn more. So I encourage all siblings to do that, ask those questions. You may be taking on more responsibility and it’s just helpful to have that relationship with the medical provider and be able to go to them with these questions.
Dr. Knupp: Now I was just realizing at epilepsy camp, we have an Ask the Doc session where the patients, the campers who have epilepsy get to ask physicians questions because more often than not in the visit, their parents are doing the talking and not the kids. And I’m just realizing… and I had made a note to myself that we probably need to do a sibling ask the doc so that siblings have an opportunity to ask questions as well without everybody else interfering.
Thank you Dr. Knupp for spending your time and your expertise with us and answering so many great questions.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.