Families’ Experience of Pediatric Onset Multiple Sclerosis

Abstract

This study interviewed parents to understand families’ experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.

The onset of multiple sclerosis occurs before the age of 18 in an estimated 2.7% to 10.5% of cases (Chitnis et al. 2009). Although a growing literature has reported on the psychosocial sequelae of pediatric onset multiple sclerosis (POMS) (Amato et al. 2010), little is known about the experience of families affected by POMS. Studies show that parents of chronically ill children experience distress and vulnerability (Hauenstein 1990) and sometimes marital discord (Walker et al. 1996); research on parents of children with disabilities has similar findings (Sloper and Beresford 2006). Parents also must help youths cope with the difficulties of treatment for POMS, which usually involves daily injections, as well as the effects of POMS at school. One challenge is managing the illness without becoming overbearing and overprotective (Block et al. 2011). These effects can disrupt the family system and can have negative impacts for both parents and youth. (Hinton and Kirk 2015; MacAllister et al. 2013; Thannhauser 2014).

The literature on the experience of parents in POMS cases, however, is limited in the number of studies and the breadth of parental experience explored (Hinton and Kirk 2015; MacAllister et al. 2007; Messmer-Uccelli et al. 2013). The current study used in-depth interviews with parents to explore the stresses associated with parenting a child who has POMS and how parents manage these stresses. It also gathers insights from parents about how their children experience and manage POMS. In contrast with previous studies, we explored families’ coping and resilience as well as the negative consequences of the illness. This article is adapted from the project final report (Cross et al. 2016), available from the National Multiple Sclerosis Society of the United States.

Method

Participants

Interview participants were recruited from the Pediatric MS Center at Massachusetts General Hospital for Children, and the Pediatric MS and Related Disorders Program at Boston Children’s Hospital. Parents were eligible if their child was under the age of 18 years and had a confirmed diagnosis of POMS, based on the revised 2010 McDonald criteria (Polman et al. 2011), from a pediatric MS specialist at one of the two hospitals. The second author conducted all 21 interviews between April 2014 and April 2015, including 18 mothers, 1 father, and 2 couples. The majority of interviewees were European-American (12) with an average age of 43.8. The sample also included parents who identified as Asian (2), Portuguese (2) and African-American (1). 15 of the young persons with MS in these families were girls and six were boys. The youths’ average age was 14.76. The median time from diagnosis was 20 months, with a range of less than 1 month to 81 months.

Instrument

Three of the authors developed an interview protocol with the assistance of a focus group of parents of youths with POMS who are now young adults. Interviews asked parents about the families’ experience of: (a) symptoms pre-diagnosis, (b) receiving the diagnosis, (c) adapting to life with POMS, (d) treatment, (e) family life, (f) school, and (g) living with POMS over time (which focused substantially on thoughts about the future). The interview also solicited their advice for other parents.

Procedures

Interviews were audio-recorded and transcribed by a professional service, then analyzed using an adaptation of Braun and Clarke’s (2006) method of thematic analysis. Analysis files were created from the transcripts and themes were identified that were addressed in most or all of the interviews. Commonalities and differences between interviewees were identified within each theme. Institutional review boards at Massachusetts General Hospital, Boston Children’s Hospital and the University of Illinois at Urbana-Champaign approved the study.

Results

Families’ Experience Prior to the Diagnosis

Families experienced considerable stress after children became symptomatic but before POMS was diagnosed, often going through months of uncertainty and anxiety before a definitive diagnosis was made. Parents reported shock, fear, and puzzlement that their active, healthy children could suddenly develop a mysterious, potentially disabling condition. A number of parents recalled children having fatigue, malaise, or school difficulties that they thought little of at the time, but realized in retrospect may have been early signs of the illness.

Parents often misunderstood symptoms at first as minor problems such as sleeping in a bad position, or children being mischievous or malingering or lacking concentration. Here is an example from one mothers’ account:

I'm like, “[Name], you done yet?” And she's like, “I'm trying to get on my pants.” And she only had one leg in and then she was standing up and trying to put on the other one, but she couldn't balance on that one. So I'm like, “Stop playing around.”…I feel bad, because I thought she was just acting like a baby.

Another mother confirmed this same misunderstandings, stating, “She was so weak…I was getting irritated with her a lot…because I didn’t realize what it was. I thought she was just being clumsy”. Another participant had this to say about misinterpreting the signs of the illness:

So you know how [if] you sleep like this, your hand gets numb -- so I told her to shake it off, wait. And unfortunately I waited three weeks because no pain, no nothing, just-- so finally like three weeks, I took her to her doctor’s… now if she has anything, I don’t wait because I felt… very, very guilty.

And another reported, “She used to sleep a lot, and I used to think it was just the lazy teenager. You look back and think, ‘shame on me’”.

When symptoms persisted or additional symptoms emerged, parents realized something more serious was wrong. Initially, most consulted pediatricians or other health care providers in their local community or went to hospital emergency departments. What followed was a prolonged period of often difficult medical tests, a series of negative results, more common diagnoses considered and rejected, and significant uncertainty about what was happening to their child. Sometimes families endured a chain of transfers between medical facilities, ending at one of the POMS centers. In one case, one young person was hospitalized for several days, underwent several sometimes difficult medical tests, was treated with steroids, and then was discharged without a diagnosis. Her mother and father described it in this way: “They had tested her for every kind of thing that they could imagine and everything was coming back negative, negative, negative… We left the hospital not knowing. Well, that was very upsetting to all of us.

Receiving the Diagnosis

Usually parents received the diagnosis during the child’s hospitalization. Often physicians held a family meeting in the clinic or hospital room that included the young person with POMS, the parents and even other family members. In some cases, health care providers and parents carefully planned the meeting ahead of time, but in other cases, parents’ reports suggested a meeting that was haphazard. A number of parents found it helpful to hear from doctors that the prognosis was not necessarily dire, and that several promising medications had been developed for youths with POMS. Physicians explained to families that every case was different. One parent said that the presence of the health care providers helped the family talk about the illness, by putting “the elephant [of the illness] in the room.” One mother explained the following about her child’s neurologist: “...he doesn’t make us feel like it’s hopeless-- and I don’t feel like it’s a hopeless situation for my son right now”.

The physician’s assistance was critical given how little parents knew about MS at the time of diagnosis. One parent said: “And that’s when she told us what it was and what we would have to do. And at that point, it was just-- let’s just do what she tells us because we have no idea what we’re dealing with”. Several families mentioned that the literature they received was informative and helpful. But praise was not universal. One mother felt that the health care providers were not straight with her about what the illness was and how severe it could be, stating:

I would rather hear the worst case scenario first so that I am mentally prepared for what is to come next than for you to sugarcoat it for me, or give me a bunch of scientific words that you know that I’m not going to understand and trying to make it seem like everything is going to be okay when you know that it’s probably not… They never said MS. They always used demyelination. What the hell is demyelination? … I didn’t find out that she actually had MS until two, three weeks into [the youth’s] stay at a rehabilitation hospital that followed her initial hospitalization.

Some parents felt that after they received the diagnosis they were left with many unanswered questions, and found the amount of information to be overwhelming. Here’s a conversation between a mother and father where they discuss this: Mother: “For me, they could have told me little by little. They just came and laid it out”. Father: “Yeah they just dropped the bomb right there”. Mother: “...And then they left and that’s it”. Another parent participant reported:

I think I just felt being discharged and not having a follow up for six weeks was kind of-- You’re given like a notebook and you just, like most people with an internet access, all you do is just read and think worst case scenario. I just had so many questions.

Reaction to the Diagnosis

Parents often found receiving the diagnosis overwhelming. They described it with language such as, “I was in shock”, “devastating”, “desperate, desperate, desperate”, “sad,” “a slap in the face”, “It was emotional. We felt her pain on that”, “hurtful and hard to accept” “grim outlook”, “I was just in a daze that day.” Fear was a major part of the reaction; one parent stated, “Every time when you find out your child… comes down with …any type of disease that there is no cure, you get very scared.” and “The fear of it all, it still has not gone away…” Most parents had not realized that children and adolescents could develop POMS. Parents imagined severe outcomes: A majority feared their child having to use a wheelchair. Family members consoled themselves in a variety of ways, for example, thinking that it could be worse (e.g., one brother said, “I looked it up, mom. It could be worse. It could be a brain tumor.”), and hoping that the child’s youth would protect them from the worst consequences of the illness. Parents developed greater acceptance over time. One parent said:

Yeah, it was hard for me to believe that this was happening to her… and then I started accepting the situation and then in a way, I didn't want to really hear what would be the symptoms because I was afraid of it. Now I'm very open-minded and I just take it day by day. … she still can move, walk and do stuff. You know?

According to parents, the children reacted to the diagnosis in different ways, depending on such factors as age, cognitive development, and temperament. Some youths cried and became sad, depressed or angry. One girl felt that somebody had cursed her and believed God had punished her. One girl asked her father if she was going to die. Other youths, however, showed little apparent distress. “I was more worried than she was”, one mother said. “She took it like a trooper”, said another. “He is more worried about me than him[self]” said a third. And another parent reported:

So we just said, you know, “You have Multiple Sclerosis and you have some lesions in your brain.” And she was just like … “Okay, whatever.” We could have said, “You have a toothache,” she would have been, “Okay, whatever.” So, yeah. I mean, she took it totally in stride.

Families made very different decisions about disclosing the diagnosis to others, ranging on a continuum from considerable privacy to unrestricted openness. It could be difficult to explain an illness they barely understood themselves, countering others’ negative scenarios about the illness, and dealing with others’ sadness and fear, including family members’ fears that they were at risk genetically. Parents’ reports varied on how their children handled disclosure about POMS. Some youths talked only to their closest friends, while others were completely open; one made it the subject of a class project. Many young people worried they would be stigmatized, or felt self-conscious or even ashamed of having the illness. They often told their parents they wanted to be treated like everyone else.

Emotional Impact of POMS

Parents described the emotional impact of POMS on them in the aftermath of receiving the diagnosis. They described feelings of constant anxiety about the possibilities of symptoms, relapses and progression of the disease, and often experienced depression too. Parents could not feel emotionally free of MS regardless of how well their child was doing.

I think the emotional part of it is always going to be there… I think that's one of the things that's really hard. But you just kind of go on with life and you have to have a positive attitude.

Several parents worried that they were responsible for the POMS through genetic contribution, or mistakes made in pregnancy and early childhood. One parent said, “It was something we thought we had prevented because we thought we did all the right things. I thought I did all the right things when I was pregnant”. Another parent stated,

Why, when, how, and who and where’d it come from? How did you get it, you know? Trying to think back, like, even the doctor, he had asked me, like how do you cook your meat, do you--? and I'm like, oh my gosh, I burn my meat... I don’t like anything raw. Even my steak is well done.

Some parents were reluctant to show their children their emotional reaction to the illness, not wanting to risk exacerbating the MS by further stressing their child. One parent stated:

If I can make him feel as relaxed as possible…knowing stress is not good for the disease…I try to back off it as much as possible. That's why I bite my tongue quite a bit in life and try to keep smiling and try to keep moving...

Parents also shared their perceptions about the emotional impact of the illness on their child. For most youths, physical symptoms of POMS impacted their functioning in several areas of their life: peer and family relationships, schoolwork, sports, and leisure activities. A number of parents described how their youths experienced fearfulness, frustration, embarrassment, self-consciousness, irritability, and anger. A few parents talked about youths withdrawing from or avoiding peer contact because of their concern about what they could not do with peers or what peers would see. Some young people became distressed not only about the current effects but about what MS meant for their future. One parent said about her son, “He tells me now his body hates him.” Some parents reported that their children withdrew from peers. A number of adolescents did not want to talk about the illness. One parent said, “And he’s not one of these kids so far that’s come out and said, “Why me? What did I do wrong” type thing. … he is a great kid but he’s very private in a lot of aspects”. Some parents worried their children were in denial, yet other parents thought that their children’s lack of distress about the illness reflected their resilience, trust in their parents, or trust in God.

Treatment

Uncertainty about the effects of disease-modifying therapies (DMTs) and concerns about side effects sometimes made it difficult to make treatment decisions. Parents took their children’s feelings and opinions seriously in decision-making. Sometimes the young person and their neurologist were the primary decision-makers; in other families, parents were very actively involved in decision-making. Other families looked primarily to their doctors. One mother described a balanced approach:

So I sat down with [name of her daughter] and she mostly made the decision, kind of based on how frequently she would have to take the shots and that sort of stuff. And a couple of times she was kind of like, “Well, what if I don’t want to do this?” And I said, “Well, I respect that you don’t want to, but you’re still 14 and I’m your mom and we’re going to do this, so we’re doing it.” And she was like, “You’re right. You’re right.” …there is a balance, but I try to let her play a role in it.

The biggest challenge with treatment was the difficulty of subcutaneous or intramuscular injections, which could cause pain, burning, welts, or bruises. Privacy could be a concern because of the welts and bruises caused by injections. Although auto-inject devices were helpful, they did not eliminate the problems. Some youths and their parents experienced anxiety and disgust over the injections, and several parents felt distressed watching their children receive them. The difficulties with injections could disrupt the treatment course and cause families to stop or switch medications. One mother reported:

We're right now on the third different drug. We've gone through two sessions of injections which broke my heart to even have to do it to him and then he started doing it to himself and I don't know if I could do that on a daily basis and do it twice-- do it daily where if you do that to yourself and those areas swell, and you can see it’s painful, I give him a lot of credit…Then when we went to the next protocol on the injections, they were not as good... that pain level…those areas would swell right away from the injections… you could see in his face that it was painful and he was hurting with it and that broke my heart. But yeah, he deals with it better than I could when it comes to it.

Another mother added:

And then after so many months, what ends up happening is you develop scar tissue and that's one of the things that they don’t tell you. That's the part that-- actually, that was probably something that they should have told me that they didn’t.…you build up scar tissue in your legs and then there's less and less places that have fresh skin that you can inject that's not going to hurt….you're injecting yourself through the scar tissue to get into the muscle and it’s very painful.

Another mother also shared information related to the bruising from the injections, stating:

She always had those welts just everywhere she went…kids always ask what it was. She always had to hide her legs and her arms, her belly. And it would stay forever because if they weren't red, they were like bruised, like a purplish discoloration.

Needle phobia could be an issue for youths and/or parents; one parent reported:

She's afraid of needles [the patient], I'm afraid of needles. Guess who had to do the needles?... Thank God they get the auto-inject, so I did it with the auto-- well, she did it with the auto-inject. I got used to doing it without it because it hurt less, I guess. But yeah, I didn't like it. But then she waited and we waited and we heard about the pill coming out and waited so she finally got the pill. So that was nice. So she's been on the pill for almost a year now.

Families who had problems with the injections were often reluctant to join a clinical trial which included oral medications, because of the possibility of receiving a placebo if a child were assigned to the control group. DMTs prevented some exacerbations but not all, and there was a great deal of trial and error. Several youths had tried as many as three or four medications over a period of months to years. The experience could be gruelingly repetitive: each new attempt could be followed by a resurgence of MS symptoms and an additional course of treatment with intravenous steroid infusions. Sometimes a DMT would appear to be effective for a period of months or even years and then suddenly, for no apparent reason, stop working. Here is one parent’s account:

Her father was at first, “Oh, my daughter’s not a guinea pig.” It’s like, “Well, we don’t know what's going to work for her”… I know she's not a guinea pig and I know you guys aren't trying to make her a guinea pig. It's just we've got to find out what works, you know? … the one that she first said, “Oh, everybody works good with, it’s been good,” they don’t work good for her. But I'm glad that that part… is over --finding out what's going to work for her -- because that was hard to deal with. You know, the relapses and being in the hospital for those five days. I had to leave my other kids. Their father’s always been there, but you know, mom’s not home.

Treatment decisions often rely on information obtained from magnetic resonance imaging (MRI), which was often a stressful time for families. Parents often worried that the MRI would reveal new lesions, while an MRI with no new disease activity was a reason to celebrate. One parent stated, “The fall’s coming, we’re going to have to go get another MRI. And to get those results is scary….She’s done really well transitioning with medications and stuff, but you just don’t know, you know?”. Despite the challenges posed by treatment, most youths were receiving a DMT by the time parents were interviewed. Disease-modifying medication prevented some of the exacerbations of MS, but not all. Most youths were either experiencing no symptoms or their symptoms had limited impact.

Impact at School

Parents sometimes told us their child had cognitive changes because of POMS that led to subtle and complicated learning impairments, especially when coupled with fatigue. Physical symptoms could also make it more difficult to function in the school environment. Many youths missed school because of hospitalization, symptoms of the illness, or medication side effects.

Support from school staff varied considerably. Sometimes it was substantial, as one parent reported, saying:

We sent all the medical information…to the school and it got distributed to all her teachers…And they are really helpful…15 minutes every week, she got to see her LD [learning disabilities] teacher. Any concerns that she has, any questions, anything that she doesn't understand--they are there for her. And they know that [she] needs special [help] -- an extra book, a special instruction, or she can take notes from her other classmates in case she's absent.

Other times support was lacking, like this report from a parent:

It's almost like they're making her feel bad that she has it. They question [her when] she asks to leave the room sometimes a few minutes…before class, and the teacher’s like, “Okay, kids. Is she just being lazy or does she want to leave for other reasons?”… my mother has been a special ed teacher for over 30 years …and she said when she saw my daughter’s IEP [Individual Educational Plan], she didn't see her medical condition or anything on there… it’s been 14 months and her IEP is definitely out of date.

Managing communication with the school about their child’s POMS was a substantial ongoing demand. Some youths were reluctant to have parents share information with the school because they did not want to be treated differently. Occasionally students would take time off from school because of the illness, and it was sometimes difficult to determine if their request was related to symptoms associated with POMS. Other students pushed to return to school, but parents decided to hold them back to protect their health—it is not clear the extent to which this was consistent with or against medical advice.

Many students had 504 plans and/or Individual Education Plans (IEPs) that provided accommodations at school. Some plans were comprehensive and implemented effectively, but some plans were inadequate, and other plans might have been effective but were not fully implemented. Some students and families did not want accommodations, feeling that this would label students as different, as noted by this parent:

…when I go to IEP meetings, they're like, "Well, why don't we let [child’s name] do [less]"– and I say, "No…you lower that bar once, we're going to keep dropping it…. We're not going to lower it. It needs to stay up here. I'll lower it if he's on death row. But for now, he's capable of doing it. We just need to figure out how…Honestly, my attitude is [that] dwelling on all the negatives and all these special accommodations, it’s going to make him not mainstream. It’s going to encourage him not to be like everybody else. And I don’t want him to feel like that.

Most parents told us their children’s friendships at school were not affected, or were strengthened since the diagnosis of MS. Youths could socialize as before, but missed certain opportunities just as they sometimes had to miss school. Some children could feel embarrassed:

…when I speak with the teacher, the first thing she told me the other day, ‘Don’t say anything in front of my friends.’ So I don't think she's sharing anything. She feels a little bit embarrassed probably…

In a few cases, peers actively supported the youth in responding to the illness, for example, by participating in an MS Walk. Despite the challenges of POMS, many children functioned at their usual level of school performance, either because their illness was well-managed with treatment, their symptoms did not affect their school functioning, or they were able to overcome the impact of POMS on their learning. One was a member of the National Honor Society who had completed a student exchange program in Europe. Another stayed after school to do advanced placement art. A number were active in sports, including several basketball players, a varsity cheerleader, and a lacrosse goalie. Other activities included drama, a show choir, a girls’ leadership program, and an after-school job.

Family Life

The illness also placed extra demands on parents at home. One parent had to drive her son back and forth from school at odd hours because of the shortened day he needed. Parents had to manage obtaining and administering medication, and were more often the ones giving the injection than youths themselves. Parents had to find ways to adapt to the demands of treatment: one tried arranging for her son to get injectable medication from a nurse at home, but had difficulty doing so. Parents were continually interrupted to meet the demands of the illness. One parent said:

I feel like there is just always something to do, phone calls to make, appointments to schedule, appointments to drive to, the cost of the copayments and all that sort of stuff…long term I’m thinking, “Is this always going to be like this?”

Another parent confirmed similar feelings, reporting:

I am a one-woman team. I'm the mom, the dad, the grandmother. He’s sick, I'm home. He got a doctor’s appointment, I'm home. I make sure I schedule the prescriptions. I manage the medications ... and I have no life….I don’t have friends, I don’t go out at night. Me and my son hang out.

The stress of involvement with medical institutions, working with health care providers, and managing diagnostic procedures and treatments could be overwhelming. Some children experienced multiple hospitalizations requiring parents to spend hours at their child’s bedside, and overnight stays could last days to weeks at a time. The sheer number of appointments could be challenging to arrange. Travel time to go to medical centers for appointments was often substantial—one family moved several hundred miles simply to be closer to treatment. Parents needed to keep track of voluminous amounts of information and deal with increased costs and paperwork.

The need to make their child’s care a priority could have negative effects on employment. One mother lost multiple jobs after her son was diagnosed because of the amount of time she needed to take off, another was terminated two weeks before the company would have had to meet legal obligations through the Family Medical Leave Act, and still others were unemployed and not able to seek a job because of the MS. One mother reported:

They [her employers] said, “You've called out six times in the last eight weeks.” What are you going to do? You got a sick kid and every single time I called out, there was a doctor’s note. What are you going to do? He comes first.

POMS could put stress on marriages as well, if parents reacted to the illness in different ways, took on disproportionate shares of the responsibility for managing the illness, or had difficulty attending to each other because of the demands of the illness. POMS could also strain already difficult relationships between separated or divorced parents. But the sensitive and supportive response of both parents to their ill child could actually ease tensions. One mother credited the family’s response to POMS for helping keep her and her husband together. Sometimes parents had to deal with pessimistic family members, as one reported, saying, “Everybody gets nervous because…they’ve seen other people with this and it’s always at a worst state where they’re basically wheelchair bound or they’re having a lot of issues, motor skills aspect, and that’s where they start focusing…”.

Parents were aware how hard POMS could be on siblings as well. Siblings worried about their brother or sister with POMS and about contracting the illness themselves. They could be frustrated with all the attention to the illness. As one mother explained:

My oldest daughter always likes the attention, so I think she is a little bit jealous in some sort of really crazy way, which kind of pisses me off… [Daughter with POMS] had her steroids, and my older daughter was like, “Mom, my feet are tingly a little bit.” …And [Daughter with MS] is like, “Here, [Older sister], here you go. Take my steroids. You can have the MS. I don’t want it.”

We asked if POMS had any positive effects on the family. Many parents said it brought the family closer together and helped them develop greater empathy. The idea that “at any given moment, things could change” made them value family relationships in the moment and make them a priority. More than one parent talked about how they had gained added respect from their children for the hard work they had done and the sacrifices they had made because of POMS.

The Multiple Sclerosis Community

Many families had benefited from the National Multiple Sclerosis Society (NMSS) and it was a regular source of support for some, but their engagement with it varied. None of the families had previously met another family with a child with POMS, and several families found these connections important. Some youths and their families had met new friends through the MS Camp, the MS Walk or other NMSS resources. MS events helped youths feel they were successful and contributing despite their illness. It was powerful to make contact with and receive and give support with so many other people who were also living with POMS. One mother said this about her daughter’s experience at camp, saying, “She’s not alone. She can share with anybody her feelings and all the treatments that she learned…”. Another mother felt supported by contact with other families affected by POMS, and also reported an effect of discovering that others were worse off:

…the first meeting we went to, all the people. I thought like, “There's a lot of people out there…” And I do like to go into those meetings…You get to share the stories. You get to see you're not as bad. It makes you feel, okay, there's someone worse than you.

It could also be helpful to hear lessons learned by others, as this parent shared:

…The first meeting we went to, there was a girl there. She said, “You know, I went to college and-- because I felt better, I stopped taking the injections and then I had to go on steroids. And this is why I use the cane, because when I was feeling better I stopped my medication.… [my daughter]‘s oh so [careful] with her medication because of her.

Several parents reported that financial support from the NMSS was also important; one stated, “She needed some cooling equipment and some other things in the beginning, air conditioner, and they willingly bought all of that for her… my husband and I were really thankful that they did that for her”. Another parent confirmed the financial aspect, stating:

...on the [DMT], there was a $200 co pay and we can't afford that. So I'm like, “What am I going to do?...I don’t have $200 right now.” So, I called the MS Society …They cover …the $200 co pay…every month…for a year.

Informational support was valuable as well. One mother talked about her gratitude that the MS Society was available by telephone to answer her questions when confusing and disturbing symptoms arose. Involvement in NMSS often developed months or years after the diagnosis and initial treatment. Before, many families spent so much of their time and energy dealing with the illness that they could not spare any for the MS Society. Some families had little or no contact with the NMSS Society, either through lack of knowledge or by choice. Some found it not useful because most NMSS members were adults, and some parents and youth felt that involvement in NMSS would interfere with feeling normal. As one parent explained:

No, she doesn't want to [get involved with the MS Society]. She says we don’t need it, we can get out through-- as a family… She doesn't want everybody to know she has MS. She doesn't want anyone to treat her differently, not to think anything of her differently.

Some parents were concerned about the effect on the youth of seeing people with MS who were more disabled. One mother said, “I didn’t want him to see people in wheelchairs, so I kind of never gave him the card to go to the [professional baseball] game [outing organized by the MS Society]”. But her son did go to an MS Camp where “he got to meet a lot of kids his age that have been diagnosed with MS” and did plan to participate in an MS Walk. Some families connected with others affected by MS through personal connections or social media, rather than the NMSS.

Living with POMS

Parents are faced with difficult decisions in knowing how to best help their child with POMS maintain quality of life. One parenting issue identified was setting reasonable expectations given what the youth could and could not do. This could be hard to determine and parents sometimes differed, as one mother explained;

My husband’s more hard core…I tend to be like, “Well, if she knows her body. If she's tired.” And he’s more or less, like… “I think she's lazy.” Well she is lazy, but I think part of it-- I've always said to her, and the doctor said the same thing, you know, “If you feel tired, if your body’s tired, rest. Your body needs to rest.” So she can push herself to a certain degree, but then I think she pushes herself so much that she does get tired. You know, it’s really hard…. the hard part is, how much of it is normal teenage stuff and how much of it is the medication and the diagnosis and the disease itself?...it’s hard to see the difference.

Parents sometimes had trouble deciding how independent their child with POMS should be. Sometimes they limited children’s independence if they thought youths were at risk because of POMS. Some parents ruefully admitted to being overbearing. Youths often chafed at the limitations on their independence, and families had to work out a solution. One mother described it in this way:

I still love her sense of independence…, and I encourage her to try hard, but sometimes she wants to take it upon herself, “I can walk down the stairs.” I’m like, “You know, it’s okay to need help and it’s okay to accept help. It’s important to know when you need help. And nobody made it through life by themselves.” So I try to be more…attentive. She doesn’t like that. She feels like I’m babying her when I’m being more attentive, because she is used to her sense of independence.

Vigilance in parenting could be justified when reticent teenagers did not communicate about their symptoms:

When I notice things are off, I'm like, "Are you all right, are you all right?" "Oh, my God, would you stop asking?" Because I know him…. I say, "Because I know you, you wait three weeks and then you go, 'oh, by the way.'…And then when we get here [to the clinic], you'll say to [the physician], 'Oh, yeah, I've been feeling like this for like two weeks, I just didn't tell my mom…. [The doctor’s] like, "… I see all types of parents come in here. This is the kind of parent you want. You might find her nagging you. You might find that she's a pain. You might find that your mother's overbearing and she's very bossy. That's what you want.

Sometimes youngsters advocated for greater independence in spending time with friends, engaging in activities and making their own treatment decisions. Other times parents started to place greater expectations on youths to manage their illness. One mother talked about initially “babying” her daughter, but then having to switch to encouraging her daughter to be more independent because the young person was hesitating to live fully because of her preoccupation with being sick.

Most youths and their families were on disease-modifying treatment and had overcome the worst stresses of adapting to the illness. Several youths were excelling in school or sports or at a part-time job despite POMS:

... I was watching her play basketball the other day and it just hit me, like, you know, she has MS and she's out there playing …I almost was going to cry in the middle of the stands, you know? She's doing what she wants to do. … She couldn't start for almost a month because they were having practice. She couldn't even try out for JV… if the [other parents] knew what [Name] had to overcome to get onto the court… she fought for it. And when one doctor told her, “Wait to see [the doctor] before you play,” she was … was so frustrated. She just started crying because she wanted to play. [But her neurologist approved it] and said “You’ve got to live a normal life.”

Often resilience and suffering were mixed. Most parents had a number of family members and friends who had supported them with their love, time and material resources. The development of treatments for MS has given many families hope. Several drew hope from their religious faith.

Concerns for the Future

Because the course of MS is unpredictable and progressive impairment can occur, parents’ overriding concern for the future was the possibility that the illness would eventually rob their children of independence, self-sufficiency and quality of life. Parents frequently brought up the image of their child in a wheelchair, including this parent who said:

It's the unknown. Is my child going to end up in a wheelchair? Is he going to have difficulty with his limbs? Is he going to have his vision?... I wish there was a roadmap that would tell me what to expect. And Type A in my head says, “I need to know this.” But I'm not going to because it’s not how this disease is.

One concern was that parents would not be around to take care of their children in the future. One parent stated:

She doesn’t have any brothers or sisters. I think about who is going to take care of her when I’m gone…Is she going to be independent? Is she going to be all right on her own?... I would hate for her to not be able to use her motor skills anymore, because she won’t have a full life, she won’t be able to experience a lot of the things that I was able to experience, and I want her to experience more than I’ve been able to do, and I’ve done a lot… if she loses her motor skills or she is unable to do these things she can’t be whatever she wants to be. That’s scary.

Some families were concerned about whether medication would be effective and affordable in the future. Another concern was children’s ability to undertake and enjoy normal young adult experience such as dating, going to college, having children and pursuing careers. One parent reported:

I want her to live a normal life. I want her to experience the boyfriends and the driving and the-- everything I did minus the bad stuff…to have children and not have to …worry… about the…hereditary part of them having the more likelihood of having it as well… I don’t want MS to take it away from her.

Parents also worried about whether children would make choices in the future that maintained their health. Some parents had hope because of ongoing research on MS, and several volunteered that they were wishing for a cure, though one mother was discouraged, saying, “I don’t think they’ll ever find a cure.”

Advice for Other Parents

Most parents’ chief advice was to find support from families and friends. One mother said, “Friends for us are like family. Friends for us means more support, more understanding.” Yet some parents reported family and friends were not there for them. One reported, “They’re all into their own lives and, you know? I’m better off with strangers.”

Many parents handled the unpredictability of the illness by focusing on the present (“taking it day by day.”), avoiding “what ifs”, and being as flexible as possible. A number of parents advised showing a positive attitude and keeping their fear to themselves, so it does not negatively affect their children. One parent said:

… the initial diagnosis and the initial shock of it all is difficult. But with help and support and love from your family, you can get through it. You can get through anything. And you have to really understand what the illness is before you can start judging it. And like anything else, it’s what you make of it. Just one day at a time. Don’t try to over-think it; don’t try to think too far ahead. The ‘what ifs,’ they're there, but don’t concentrate on them too much because-- the ‘what ifs’ are not going to do it for you…And support is a big thing. Support’s very big.

Parents recommended working closely with health care providers and involving their child in the communication with neurologists: “And talk to the doctors. I have no problem calling the doctors and asking them questions if I don’t feel that I have the right information or I don’t want to tell her the wrong thing,” said one parent. Another one stated:

Make sure your kid is part of the process. Keep them involved; let them make decisions. Let the doctors speak directly to them while you're just kind of sitting there listening. Don’t answer for your kid, let your kid answer depending on the age. You know, [Child’s name] was 12 when she was diagnosed, so we let her speak for herself. Even now with [the current doctor], I'm in the room but I want her to do the speaking. I want her to explain what's going on, if anything or … if all is well.

Many parents recommended that families involve themselves in the community of families affected by POMS, to find people to talk to and provide and receive support. Social media could be the means for connecting. One mother explained:

I would tell the new parents to find your resources, find someone to talk to, and use that…I love [a pediatric MS Facebook page]… one mom [on the Facebook page] was having a hard time with her IEP. And we're all there to say, "This is what you need to do” …one mom was like, "Okay, we're newly diagnosed. These are the four drugs they're telling us. What are other kids using? What have you found helpful?" I found that to be very helpful.

Parents drew their hope from education about MS, current research, their faith, and watching their child adapt to life with MS with grace and courage. They talked about the families’ capacity to adapt to the illness, which, as one put it, “is not the end of the world,” and their realization that, despite everything, “life can be good.”

Discussion

Being told your child has POMS can be overwhelming for many families. The procedure for delivering the diagnosis varies among providers and families are not often adequately prepared for the discussion. Many families leave the hospital with many unanswered questions and feel left alone to deal with what comes next. The process of finding and implementing an effective DMT was challenging because of uncertainty about the effectiveness of treatment, the often grueling trial and error of finding a DMT, side effects and a range of difficulties related to injections. Families caring for children with POMS experience considerable anxiety and uncertainty throughout the course of illness. The time surrounding diagnosis is especially filled with uncertainty and parents often felt overwhelmed. The stress of living with POMS itself then presents challenges of how to fit so many demands into day-to-day family life. Parents were concerned about their child’s future.

Cognitive and physical changes interfered with school performance and school absences were common. Support from school varied, and much of the burden for maintaining school functioning is placed on parents, who struggle with balancing their child’s academic and health needs. Accommodation plans varied in their effectiveness, and some families declined them as part of an effort to maintain normalcy. Despite POMS, many youngsters functioned well at school and maintained their peer relationships. Most families had benefitted from their relationship with the NMSS and the MS community, though the extent and nature of their engagement with each varied. Families often found great comfort in speaking with other families affected by POMS, both through NMSS-sponsored events and through social media.

Despite the stresses of receiving the diagnosis and the demands of treatment and school for families affected by POMS, these families had benefitted from DMTs and most had adapted successfully to the demands of school post-diagnosis. Supported by their peers in the community of families with POMS, and with the help of the NMSS, they have demonstrated considerable resilience in dealing with the practical issues of living with POMS. But their difficult path could be made easier with greater support and understanding of their needs.

Recommendations

To minimize the long and demanding diagnostic odyssey (see Dusheck 2015) of reaching a diagnosis, we urge the NMSS, advocacy organizations, and professional organizations to work to educate pediatricians, ophthalmologists, emergency room physicians, and other HCPs about POMS. House staff on pediatric neurology wards should be educated to increase their awareness of parents’ needs, particularly concerning the disclosure of POMS to children. Because many patients with POMS are adolescents and emotional and behavioral issues characteristic of that life stage shape families’ response to the illness (MacAllister et al. 2007, 2013), training and experience related to this age group are essential for professionals. Families should be the unit of treatment with due emphasis on the parents’ needs. Given the concerns about the future, support needs to be long-term. Pediatric MS centers, the NMSS, and medical centers and staff should respond to the need for mental health services for youths with POMS and their families. Future research should study more thoroughly parents’ anxiety, the effect of POMS on parenting and marital relationships, and families’ experience of treatment. It should also explore families’ resilience over time.

Healthcare providers need to carefully plan and prepare families for the initial discussions surrounding the child’s diagnosis. Providers should discuss with the family who they would like present for the discussion, including the involvement of the child. If possible, enough time should be given to ensure the family is able to prepare for the meeting. With the incredible amount of information families are given, providers need to examine how they present materials to families. They need to develop methods for ensuring that families’ questions are answered and that families feel adequately prepared to make difficult decisions surrounding DMTs. Successful cognitive-behavioral interventions developed for adults dealing with the difficulties of administering injectable medications (Mohr et al. 2002) could be adapted for youths with POMS and their families. School consultation liaisons provided by hospitals or the NMSS could educate schools about POMS, advise schools on how to respond to symptoms, participate in planning meetings, and support parents.

Families need to be made aware of resources available to them within the community. In addition, we encourage the NMSS to provide additional resources specific to the needs of families caring for children with POMS. The NMSS and other advocacy organizations should continue to promote interaction among parents who have a child with POMS, using in-person contacts, on-line connections, social media and a yearly congress combining parents, youths, researchers and clinicians.

Limitations

The study’s limitations include the small sample size and the involvement of only one region and two specialized centers that are national leaders in treating POMS. Our choice of questions addressed a number of important topics, but also structured the interview in such a way that it is difficult to assess how prominent each topic was in families’ experience. Families of parents who participated may differ systematically from parents who did not participate. Caution is therefore needed in generalizing study findings. Studies are needed in different regions and types of treatment centers.

Conclusion

Families treated at Pediatric MS Centers are pioneers who are helping develop the knowledge base to improve care for children and adolescents in the future. Their courage, persistence and eloquence are powerful forces in the battle against pediatric onset multiple sclerosis.

Compliance with Ethical Standards

Conflict of Interest

On behalf of all of the authors, the corresponding author states that there is no conflict of interest.

Ethical Standards and Informed

All procedures followed were in accordance with the ethical standards of the Institutional Review Boards of Massachusetts General Hospital, Boston Children’s Hospital and the University of Illinois at Urbana-Champaign; and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants.”