Summer Camp & Your Child Living with Migraine

0:01 good evening or good morning or good
0:04 afternoon uh what whatever time you are
0:07 watching us welcome to migraine Canada’s
0:10 ask your pharmacist webinar we started
0:13 this webinar a few months ago to answer
0:15 you questions that are related to
0:17 migraine and we wanted to bring subjects
0:20 and uh
0:23 more information for you to help you
0:26 manage migraine for you your family your
0:28 loved ones and today it gives me great
0:30 pleasure to have Amy Graham Amy is a
0:34 director for the advocacy champ and she
0:37 is the director of migraine at school
0:38 we’ve been talking about children
0:41 migraine school and most importantly
0:44 it’s the summer at last and we’re going
0:48 to be sending our kids to camp and we
0:52 would like to know how can we
0:54 support our children who are living with
0:57 migraine in camp at school and
1:01 throughout the summer
1:03 um welcome Amy
1:05 hello thank you so much for having me
1:09 I’m so excited to be here and talk to
1:11 you about something that I am very
1:14 passionate about
1:16 um this is uh the migraine at school
1:20 um initiative is by far
1:24 um I think the favorite part of my job
1:27 I think always working with children is
1:30 and and helping children is also the
1:32 best part yeah
1:35 and champ what is Champ so champ is the
1:38 Coalition for headache and migraine
1:40 patients um I like to describe it as
1:42 sort of the umbrella organization over a
1:46 multitude of migraine and headache
1:48 organizations that we bring together so
1:51 that we can collaborate here in the
1:53 United States
1:54 and migraine at school so migrated
1:58 school is an initiative that was started
2:02 by Champ in partnership with the
2:04 Danielle Byron Henry migraine Foundation
2:08 um it sort of started in a committee
2:09 that was a part of chant
2:11 um there was a committee that was put
2:14 together to discuss how do we reduce
2:16 stigma attached to migraine and in the
2:20 very first meeting everybody in the room
2:22 said well we should be working with
2:24 children
2:25 if we work with children and we can
2:28 destigmatize Migraine with a younger
2:31 generation we could in a generation or
2:34 two
2:35 completely eliminate the stigma attached
2:39 to this disease
2:40 and then it didn’t take long before
2:43 it was much less of a conversation and
2:47 it became its own sort of thing like it
2:51 became an initiative the Daniel Byron
2:54 Henry migraine Foundation
2:57 they were founded after their daughter
3:01 sister after living for years with
3:05 chronic migraine it died by Suicide
3:08 and turned their pain into sort of
3:13 changing and making the world a better
3:15 place so they joined forces with champ
3:17 and together we run migraine at school
3:22 I know the story of Danielle and
3:26 um
3:27 it I for me I think not one more child
3:31 should have that’s exactly right
3:34 and I would love to have one more uh
3:38 possibly one more webinar to talk about
3:40 mental health and migraine
3:43 um and and to Chan and all this sadness
3:47 and and the loss into something as
3:50 beautiful as helping others and make
3:51 sure that no no other child has to go or
3:54 no other family has to go through this
3:57 um is is something that is very very
4:01 um close to my heart as well if we can
4:03 help one person that makes all the
4:06 difference in the world because that one
4:08 person is Someone’s Child is someone’s
4:10 brother or sister son a partner and um
4:15 mental health and migraine
4:17 um I have people who tell me don’t talk
4:20 about it because we’re not weak we’re
4:22 not it’s we don’t want us to be seen as
4:26 the whining as the ones who are really
4:29 really weak we are strong we are
4:31 fighting there’s migraine Fighters
4:33 everywhere but we know that mental
4:36 health cannot be maintained if you’re in
4:39 pain it’s not about strength it’s about
4:41 how much uh it affects your life and
4:44 your ability to cope becomes less if
4:46 you’re in constant pain I think we we
4:49 need another one Amy that is just on
4:52 this subject but I really agree tonight
4:55 we’re going to talk about migraine at
4:57 school and how children starting early
4:59 with educating children about migraine
5:02 creates an environment and creates a
5:04 culture where migraine is better
5:06 understood but also provides the child
5:09 who lives with migraine today with a
5:13 more supportive
5:15 environment and people around them so
5:19 how does migraine at school do this did
5:23 you go to schools with how do you do
5:25 this
5:26 um there are many ways that we do this
5:28 and yes we do work directly with schools
5:32 whether it is us that are part of this
5:35 sort of leadership team we also have a
5:38 large team of what we call migrant
5:41 School ambassadors that’s our sort of
5:42 Grassroots organizing group and we send
5:46 them out into their own communities to
5:49 connect with schools school districts
5:52 but we’re also talking recently about
5:55 sort of thinking outside the box it
5:57 doesn’t have to be a school you know it
6:00 could be any place that
6:03 um where children gather so we have an
6:06 organization in St Louis Missouri that
6:09 works with
6:11 um at-risk underprivileged children at a
6:14 girls and boys club and they’ve adopted
6:16 the migraine at school program you were
6:19 talking about you know like it’s summer
6:21 like all of our kids now are moving out
6:24 of school and a bunch of them are moving
6:25 into summer camp
6:27 there is no reason that summer camps
6:30 can’t also sort of be incorporating the
6:33 migraine at school tools into what
6:35 they’re doing for their kids as they’re
6:37 taking care of them during these hot
6:40 months
6:42 so maybe we go back one step behind and
6:45 talk about how can a parent know if the
6:48 child has migraine
6:50 so it’s sort of you know you want to
6:53 think about
6:54 migraine can look different depending on
6:56 what age your child is you know in our
6:58 younger children what you really want to
7:00 be looking out for is you want to be
7:02 looking out for maybe some stomach
7:05 issues or nausea vomiting
7:08 um my youngest has
7:11 abdominal migraine and I remember like
7:15 the first time you know they it’s like
7:19 they had the stomach flu but then it
7:21 went away really fast you know when I
7:23 think about my oldest you know you get
7:25 the stomach flu there’s that sort of 24
7:27 48 hour cycle you get it you can’t
7:30 really eat anything you know you eat
7:32 like applesauce in your toast but
7:36 um but with my youngest it’s like it
7:38 again it would look like the stomach flu
7:40 and then they would be fine and they’d
7:41 be able to eat and then four days later
7:44 they would be throwing up again
7:47 so sort of keep an eye out for you know
7:50 is your child having stomach aches are
7:53 they are they vomiting in in what is
7:56 clearly not connected to an illness that
7:59 doesn’t mean that there can’t be head
8:01 pain and they can’t also have
8:04 um you know headache being a symptom of
8:06 migraine but you know until they’re a
8:09 little bit older you know that abdominal
8:11 stuff is is a part of the story as well
8:14 then once you get into adolescence
8:17 you’re going to start seeing some of the
8:19 symptoms that we as adults are familiar
8:22 with when it comes to migraine you know
8:24 do you do you have a headache that lasts
8:27 you know longer than your typical
8:30 headache is it not related to any sort
8:33 of tension in any way do you have other
8:36 symptoms that come along with that
8:39 headache you know I in particular with
8:42 my migraine I sometimes feel like I have
8:44 a fever I get really nauseated did the
8:49 any sort of scent or smell is I just
8:53 almost can’t even handle it people have
8:56 you know aversion to Bright Lights so
8:59 any of those extra sort of extra
9:02 symptoms if you are seeing that along
9:05 with the headache
9:06 it’s time to start tracking and
9:10 recording these instances so that you
9:13 can maybe see a pattern and the
9:17 possibility that it it may be migraine
9:20 and in your education just for schools
9:23 and for parents and for children do you
9:27 use different tools to communicate with
9:30 different
9:31 um you know audiences or different
9:33 people like the language we use with a
9:36 child is definitely different so what
9:38 kind of tools do you provide and if
9:40 someone wants to be a an ambassador I
9:42 know that’s how I found out about my
9:45 brain at school is because I saw this
9:47 and I was like I want to go to schools
9:49 and tell them because
9:50 if we say that’s that one of ten
9:53 children to live with migraine how come
9:56 we don’t see them how come it’s an
9:58 invisible condition like we know that
10:01 but how come in my kids class I’ve never
10:04 heard of a child living with migraine is
10:07 it because they were not aware of
10:09 themselves is it because the school did
10:12 not tell the other kids or what do you
10:15 think
10:16 well and I don’t know what the
10:18 percentages are in Canada but I know
10:21 here in the United States that you know
10:23 we have a very large percentage of
10:25 people living with migraine that are
10:27 undiagnosed so you know right now we you
10:30 know there are 42 million Americans
10:32 living with migraine but like 50 of
10:35 those people are not diagnosed with
10:37 migraine then you sort of throw it back
10:39 to Childhood and how many of the you
10:42 know or 10 of school-aged children 28 of
10:45 adolescents how many of those are
10:48 undiagnosed and they’re not being
10:50 treated where you know they’re being
10:52 dismissed or oh it’s just a headache or
10:55 you know or you know it’s like well you
10:58 know this student comes in and complains
11:00 you know during gym class every day and
11:03 they say they have a headache but they
11:05 probably just don’t want to have to run
11:07 when really it may be the activity that
11:11 is triggering the migraine attack
11:14 but that becomes a life story doesn’t it
11:16 yeah it’s it starts with children where
11:19 every time they say I don’t want to do
11:20 something people think they’re just
11:22 faking it right
11:24 and even with adults we see in the media
11:27 that always it’s a woman or someone who
11:30 calls in to work and says well I have a
11:33 headache I’m not feeling well that and
11:35 then they go out and they have a Ferris
11:37 Bueller’s they are kind of day which
11:40 it’s like you know keep it in mind too
11:42 you know I think about my own migraine
11:44 and depending on what activity it is
11:48 that I’m doing I can either power
11:51 through that with my migraine or I can’t
11:53 so if I am out gardening on a 90 you
11:58 know Fahrenheit degree day
12:01 I may not be able to do that but if it
12:04 is maybe a cloudy day and it’s really
12:07 Pleasant out well I even know if even
12:09 with the same amount of head pain and
12:13 slight nausea I may be able to do my
12:15 activity and sort of keeping in mind
12:17 that
12:19 you know if we provide the
12:22 accommodations to people living with
12:25 migraine we the people with migraine can
12:29 show up in amazing ways
12:32 yes like don’t underestimate us and
12:34 don’t underestimate the kids with
12:36 migraine it’s about making sure that
12:38 they have what they need in the
12:40 classroom and they need a summer camp or
12:43 they you know they they needed their
12:45 after-school program that will allow
12:48 them to have the best experience that
12:51 they can have
12:52 you have this beautiful video on your
12:55 website so if if you are listening to
13:00 this please please please go to migraine
13:02 at school website and look at this
13:04 beautiful video with the young
13:07 um child she is talking about how she
13:11 knows it’s a migraine when does she call
13:13 the parent and is this part of the
13:15 education that you provide
13:17 so yeah so we talked about like what
13:19 what it is that we do to help educate
13:21 and and who are we educating and how
13:24 does that look different so right now we
13:27 have our three primary audiences we have
13:30 our students the kids
13:32 we have our parents and then we have our
13:36 Educators I always like to say that our
13:38 Educators or anybody that’s at the
13:40 school that it’s not necessarily just
13:43 the teacher it’s it’s the teacher it’s
13:45 the the you know the administrators at
13:48 the school it’s the custodian it’s the
13:51 it’s the wonderful person that works the
13:53 front desk of at the school that knows
13:55 everybody and knows everything that’s
13:57 happening all of these people
14:00 um are on the front lines of helping our
14:03 kids with migraine so depending on which
14:05 audience it is our materials are crafted
14:08 for that audience
14:10 I I so beautiful
14:12 um I don’t know if you have materials
14:14 you want to show us sure I saw beautiful
14:17 resources and I was like this should be
14:19 something that on the first day of
14:21 school a parent walks in with with
14:24 something to show if they have if it’s
14:26 the first time that they are
14:28 communicating with school
14:32 so
14:38 I am
14:43 tempting to click like it’s definitely
14:46 uploaded I’m hitting present here we go
14:49 can you can you move it so here we go so
14:53 these are just you know the beginning of
14:55 my presentation I sort of talk a little
14:56 bit about who champ is which we already
14:58 did who the Danielle found this is
15:00 Danielle as well right yeah you can see
15:02 the shout out to the Danielle foundation
15:05 for the great work that they’re doing
15:06 thank you amazing amazing organization
15:10 um what a beautiful family the
15:13 um sort of you know just changing the
15:16 purpose of their life what a what a
15:18 wonderful way to honor Danielle’s memory
15:20 so
15:22 um they’re just really very special
15:23 people
15:25 then so we have like you said we have
15:27 the tools for parents and what we like
15:30 to start with is for parents it’s about
15:32 educating what is migraine and what can
15:35 you what are the things that you maybe
15:36 need to know you know educating yourself
15:39 about the disease because again as us in
15:43 the migraine World know it is not just a
15:45 headache there’s so much more attached
15:47 to it is a complex neurological disorder
15:51 um helping parents understand that that
15:55 to take this seriously taking it
15:57 seriously can maybe be the difference
16:01 between chronification
16:03 and you know a child staying episodic
16:07 we help parents understand that they’re
16:09 they’re not alone trying to connect them
16:12 to other parents that have migraine
16:16 um you know encouraging them to
16:19 get the help that their child needs you
16:21 know talking to a healthcare
16:23 professional
16:24 um and then the other symptoms that come
16:26 along with migraine as I mentioned
16:27 before understanding that you know again
16:29 if your child is getting headaches
16:32 regularly and you see these other
16:34 symptoms
16:36 um it’s really likely that they have
16:37 migraine and you need to talk to a
16:39 doctor about it
16:41 I think the one that comes out and that
16:45 is I think it’s the reason why we
16:47 mistake it or we just don’t understand
16:50 it is the abdominal my tummy hurts
16:52 that’s what your child says my tummy
16:54 hurts my tummy hurts
16:57 and you ask them what did you eat that’s
16:59 the first thing we do what did you eat
17:01 like did you have candy today like you
17:04 know it’s like did you eat too many
17:06 sweets well did you did you did you not
17:09 eat enough of your lunch are you hungry
17:11 like yeah like you sort of we and I’m I
17:16 know that I’m probably guilty of that as
17:18 well
17:21 go go play go do whatever
17:25 um but it’s recognizing if it’s
17:28 consistent in a pattern like if you’re
17:31 starting to see it more regularly
17:34 um especially if there’s vomiting like
17:37 if you like that and I’m not saying that
17:39 they’re always as vomiting sometimes it
17:41 is just a stomachache but
17:44 again if if your child is
17:47 having what looks like the stomach flu
17:49 but it’s clearly not the stomach flu
17:51 start paying attention to that
17:53 you know keep a diary we’re all told
17:56 again any anybody that’s watching this
17:59 that has migraine knows all about
18:01 keeping a journal and a diary and
18:04 tracking your days and your symptoms and
18:06 the severity of your attacks paying
18:09 attention to what’s going on with our
18:10 kids like that is crucial when we go in
18:13 to talk to a healthcare professional
18:16 absolutely and
18:18 um the the thing about children is that
18:22 if you start early enough to teach them
18:24 these skills it’s easier when they’re
18:26 older so the earlier we start the easier
18:29 it’s going to be for them this is a
18:31 condition that doesn’t go away doesn’t
18:33 just disappear it’s there to stay and it
18:37 might change it has that that pattern
18:41 that keeps on changing sometimes it gets
18:43 worse sometimes it gets better but it’s
18:45 there so the earlier they are into
18:49 listening to their buddies and listening
18:51 to their symptoms and knowing what to do
18:53 the easier it’s gonna make their lives I
18:56 think that’s the and that’s the beauty
18:58 of starting early with children no
19:00 absolutely it goes back to the what can
19:04 we do to prevent chronification it is a
19:07 lot easier to prevent migraine from
19:10 becoming chronic than getting us from
19:13 chronic back to episodic
19:17 um yeah so the the sooner we can manage
19:20 and care for and make changes that maybe
19:25 we need to make
19:27 um that can make all the difference so
19:30 part of this graphic too that we have
19:32 for parents
19:34 um
19:35 we sort of just have them some things
19:36 that you can do you know with your kids
19:39 like where what are some Lifestyle
19:41 Changes like here are some steps the the
19:44 steps that you as a parent or a
19:47 caregiver
19:48 um what can you do
19:50 um here in the United States we have
19:53 what is called a 504 plan or an IEP plan
19:59 and that means that you officially have
20:03 um legal rights
20:04 to get what you need accommodation Wise
20:07 from our school system I would imagine
20:10 that there is something similar in
20:12 Canada I know that there’s something
20:14 similar in the UK that you know that you
20:17 probably have something that you are
20:19 officially sort of getting that stamp of
20:21 approval yes that my child is allowed to
20:25 have these five things you know at
20:28 school and you can’t say no like you
20:30 know whether it’s having a water bottle
20:32 or they’re allowed to remove themselves
20:34 to a quiet space for a bit
20:38 um you know
20:39 and again that’s a very overwhelming
20:41 thing as a parent just like where do I
20:44 start like how do I know what
20:45 accommodations like we we should be
20:48 asking for so we try to again we try to
20:51 make that easy
20:52 anybody in any country can use this like
20:55 these are just and this is just a list
20:57 it’s like this is a good place to start
20:59 it’s like here are some possible things
21:02 that you may ask for for your kid
21:06 um and from this list you may think of
21:09 other things like because each child is
21:12 an individual each child has their own
21:14 needs
21:15 um what my child needs it may not be the
21:18 same as what your child needs
21:20 this is a great place to start though
21:22 because again you know it’s sort of an
21:24 overwhelming process especially when
21:26 you’re having to jump through the red
21:28 tape of doing something like getting an
21:31 official sort of plan in place with the
21:33 school district so we I mean
21:37 I love that we have a checklist because
21:39 I I don’t think it exists we haven’t
21:42 worked on it with with migraine Canada
21:44 with migraine Canada we are providing
21:47 resources for parents this checklist is
21:50 something that is very as you said it
21:52 doesn’t matter what the name is these
21:54 accommodations our children are the same
21:56 wherever they are in the world and it we
22:00 are able we are very proud in Canada to
22:02 be able to walk into a school and
22:04 explain what the situation is and ask
22:06 for the accommodations
22:08 but it’s a big list so how do you know
22:12 which one do you need you know I mean
22:15 you sort of you look at this list and
22:16 you think about your own child like I
22:18 can look at this list and I know
22:21 like I think about my oldest who does
22:23 live with migraine and had migraine as
22:25 they were moving through middle school
22:28 and high school and extended time
22:31 my kid would not have made that that is
22:34 something that I have something maybe
22:37 would have did
22:40 um but you know
22:43 maybe being able to go to school a
22:45 little bit later where you know you
22:46 don’t have you know you sort of have
22:48 that first hour is your it’s more of an
22:50 open hour you know because like their
22:52 sleep schedule so I mean I think it’s
22:54 really going through and looking at who
22:57 your kid is and what makes sense for
22:59 your child and where you should be
23:02 asking for for maybe some of these
23:05 accommodations you know there may be
23:07 only three of these on this list that
23:08 really
23:09 apply to your own kid and there may be
23:12 four more that are on this list that you
23:14 think about that’s what you’ve asked for
23:16 but it’s supposed to start sorry but
23:19 would it make sense that maybe you think
23:21 it’s the three and then if you find
23:24 there’s one more you still can go in and
23:26 say well you know these are working very
23:29 well but can we try also to add this to
23:32 the list of things or to the
23:33 accommodations that we require and see
23:35 if that
23:36 improves or that improves the quality of
23:39 life or the performance or even how
23:42 comfortable they are at school because
23:45 they need to feel
23:48 um at ease in school without feeling
23:50 that they are basically being or they’ve
23:54 without feeling awkward about being the
23:57 child who needs to go out of the
23:58 classroom because of this
24:02 um I would say yes like obviously you
24:04 know that you always can go back and ask
24:06 for you know alterations on whatever the
24:09 plan is I would also like anything else
24:12 in life you know put more on there than
24:15 maybe you think you’ll need because the
24:18 child may never need to ask for it but
24:20 if it’s on the list then it’s already
24:22 there so go ahead and add anything you
24:25 think might
24:27 be necessary okay um I also think part
24:30 of you know you know if migraine at
24:33 school is partnered with you know a
24:36 school like these are you know this is
24:39 something that sort of exists and made
24:41 and then what our hope is is that when a
24:43 child say needs to leave a classroom to
24:46 go lay down for 30 minutes in a dark
24:48 room that that becomes less stigmatized
24:51 because it’s an open conversation about
24:53 migraine it’s like oh that’s right well
24:56 my sister has migraine too or because
24:58 you look at the the number of people
25:00 that have it I can’t imagine that
25:03 there’s anybody that doesn’t know
25:04 somebody
25:06 that has a migraine just the more we
25:08 talk about it yes the more we’re
25:11 discussing it and
25:14 that’s the great thing about like
25:15 six-year-olds they don’t care
25:18 it’s like you know if like bobby gets to
25:23 leave to go you know you know like well
25:25 like you know like their head is doing
25:27 something or they’re you know they’re
25:29 feeling like an abdominal migrant attack
25:30 coming on and they need to excuse
25:32 themselves and you know like that age
25:34 like the other kid’s gonna be like oh
25:36 that’s so cool
25:41 it changes the way we see something as
25:44 opposed to you know
25:46 um you and I as adult women now if I
25:52 need to excuse myself I feel a sense of
25:54 Shame and other people are going to
25:56 judge that in a way that like little
25:58 kids just don’t
26:00 they’re just they just are so open and
26:02 accepting and which is why I think it’s
26:05 just so important for us to be having
26:06 these conversations when they’re young
26:09 because it’s going to change how they
26:11 think about it as adults
26:14 and these adults are gonna be your
26:16 partner they’re gonna be your boss at
26:19 work they’re going to be your colleague
26:20 so the earlier they’re exposed to this
26:24 possibly will make them a better person
26:27 to interact with if you are living with
26:30 migraine in the future
26:31 exactly right because I think about you
26:34 know you think about like you know these
26:36 resources exist to help the children
26:39 living with migraine but what is the
26:41 trickle effect and that sort of throwing
26:43 the pond and the stone of the kids who
26:45 don’t have migraine but they you know
26:48 had a better understanding of their
26:50 classmates and then again they grow up
26:52 they become the boss they become the
26:55 co-worker and they just know that this
26:58 is a part of life like you know that
27:00 there’s just always like you know there
27:01 are people who have migraine and and
27:03 this is this is how we help them
27:06 so I think that that that you know that
27:08 makes a huge difference
27:11 um so this is part of like what you know
27:12 like what we do like to share with the
27:14 parents
27:16 um we also work with the Educators to if
27:20 we can screen children to identify kids
27:23 who may have migraine we have another
27:27 um piece that we like to send home to
27:30 the parents which is kind of a cheat
27:32 sheet to take to your health care
27:35 professional I know that it can be
27:37 really overwhelming when you go in to
27:39 see your doctor your nurse practitioner
27:42 and you know you have a very limited
27:44 amount of time and you just you know you
27:46 need to very quickly say what you need
27:49 to say this cheat sheet can be used
27:52 whether no matter what like you know
27:55 just you know if you’re starting to
27:57 recognize that your your child may have
28:00 migraine sort of printing this out
28:03 filling it out and then taking it with
28:06 you when you take your child in for
28:08 their exam
28:10 it’s a much faster way to say what needs
28:13 to be said to get that diagnosis that
28:16 that you know that you may need which is
28:19 super super important and that’s why we
28:22 need more ambassadors I guess exactly
28:24 right yes it’s all about that Grassroots
28:28 movement you know because I can call a
28:32 school in you know a city in Washington
28:36 state but I don’t live there they don’t
28:38 know me but
28:40 if we have somebody you know when we do
28:43 have a wonderful Ambassador that lives
28:44 in Washington state and you know she’s
28:46 going to have so much more power to talk
28:50 to people at a local level because it’s
28:52 their community and so yes it’s like
28:55 getting those people who want to make a
28:58 difference locally do that
29:01 okay thank you I love this one
29:06 so
29:07 I’m
29:10 I’m gonna go ahead and stop sharing so
29:13 that you know that it’s just us now
29:16 um I have a question as a migraine
29:19 pharmacist what about medications what
29:21 about how do you communicate
29:25 um with school and with caregivers or
29:28 how do you communicate around
29:31 medications that are used because a lot
29:33 of schools say we will not give them
29:35 their medication they need to be able to
29:37 come and do it themselves or they have
29:39 to go to the nurse some schools don’t
29:41 have a nurse how do you manage the need
29:44 for medication for children so that yeah
29:46 once you’re at a point where maybe your
29:48 child is taking some sort of medication
29:51 for their migraine that is where you
29:54 would want that to be a part of your
29:55 accommodation
29:57 um you want to work that in you want to
30:00 make sure that that’s part of your plan
30:02 um whatever it is that your child needs
30:04 whether it is that they’re taking some
30:06 sort of over-the-counter medication or
30:08 whether they have been prescribed
30:10 derived something to treat migraine
30:14 um I think that you know we are aware
30:17 that there are there are no
30:20 pharmaceutical drugs that have been
30:21 approved yet for children that doesn’t
30:25 mean that maybe the healthcare
30:27 professional that you’re working with
30:28 isn’t going to like work outside the box
30:30 in one way or another but just making
30:33 sure that any treatment that you have
30:34 come up with
30:36 with a healthcare professional is a part
30:39 of your plan so getting a doctor’s
30:41 letter we have a sample doctor’s letter
30:44 on our website anybody can download it
30:47 have the doctor and it might just say
30:49 that you know like that you know this
30:51 student should have access to ibuprofen
30:54 to take as needed blank blank blank you
30:58 know like so the school has that
31:00 information and you’ve empowered then
31:03 your child to do what they need to do
31:05 so so approvals for medications differ
31:08 from one country to the other some of
31:11 the two plans are approved at different
31:13 ages so you might want to check what age
31:16 your child is
31:18 the antinosians is a big one I think and
31:22 these are approved for all ages yeah so
31:24 if they are nauseating at school and
31:26 they need something for the nausea then
31:28 you can do this I think this brings us
31:30 to Camp which is what we started to talk
31:33 about like we got yeah which is my
31:35 favorite I love summer camp when I was
31:38 in my early 20s I was a summer camp
31:42 counselor and I still talk to people
31:46 like that I worked with that I just
31:48 loved I loved working at Camp well what
31:50 would you
31:51 first the anxiety around the camp the
31:55 anxiety with the child and the anxiety
31:58 with the parent
31:59 how do we go around this how do we make
32:03 it less anxious uh or less creating
32:07 anxiety right the parent and the child I
32:10 think number one and again I don’t know
32:12 how Camp Works in Canada but here in the
32:15 United States there are all sorts of
32:17 different kinds of camps like you know
32:20 like I’m not very different I think in
32:22 that like we have day camp we have
32:24 overnight camps we have camps that are
32:28 super focused on outdoor activities we
32:30 have camps that you’re gonna you’re
32:32 gonna spend two weeks learning how to do
32:34 hip-hop dances like thinking exactly the
32:37 same
32:38 so I think that number one thinking
32:41 about your child and their migraine and
32:44 what camp fits their needs the best so
32:48 if you know that your child
32:50 can be triggered by the Heat and a lot
32:54 of you know extreme physical activity do
32:57 not put them in a hiking outdoor camp
33:00 like think about putting them in a camp
33:02 where maybe they have access to some
33:04 indoor activities
33:05 I also think and again Camp is one of
33:08 those things that we pay for out of
33:10 pocket yeah same here so
33:14 you’re paying for a service do not be
33:18 shy as a parent to ask for what you want
33:23 and need for your kid like ask on the
33:26 front end as you’re signing up will you
33:28 be able to make these accommodations
33:31 and because again you’re paying them for
33:35 this service and they they need to make
33:39 sure that your child is having a decent
33:43 summer and doing what they need to do
33:45 for your kids health
33:47 just tell them you know like my child
33:49 has has been diagnosed with migraine and
33:53 they’re going to need sometimes they’re
33:55 going to need to have access to a place
33:58 to lay down they’re going to need to be
34:00 high stay hydrated so they’re going to
34:03 need access to a water bottle at all
34:06 times
34:07 um I know for myself and my oldest that
34:12 you know we do best if we sort of eat a
34:16 little bit throughout the day yes
34:18 um my child was not shy in any way and
34:22 was sort of notorious for pulling random
34:24 food out of their bag in a classroom
34:26 like my favorite was in the middle of
34:29 chemistry class they pulled out a
34:31 burrito
34:33 foreign
34:40 so you know but say like you know it is
34:42 important that my child is able to eat
34:44 throughout the day as they need to I of
34:46 course you know like I always made sure
34:47 that you know
34:49 here’s the food that you have I would
34:51 send them with that food
34:54 um but they’re you know ask on the front
34:56 end make sure that the camp can
34:58 accommodate because depending again on
35:00 what that camp is like you know I’m
35:03 thinking about the camps that are very
35:06 outdoor activity focused it’s like well
35:09 I hear what you’re saying but there are
35:11 days where we’re going like our activity
35:14 is to go on on a five hour hike and how
35:18 can I make sure that your kid can lay
35:20 down and rest like that’s a safety issue
35:22 for my other campers then that may not
35:24 be the camp for you
35:26 and we do this very early I don’t know
35:28 about you in the us but we start looking
35:30 at camps around Christmas we start to
35:32 talk about them because
35:35 they run out
35:37 yeah
35:38 um the other thing that we do
35:41 um that we that we do talk about is
35:44 noise in Camp and that’s a big one so do
35:48 you have tips and tricks for how because
35:50 for some reason children are even you
35:53 know in school yes they are nosy but
35:55 there’s a teacher telling them to be
35:57 quiet to listen but in Camp it’s
36:01 non-stop noise which can be a trigger
36:03 for children and it could actually
36:07 thank you
36:09 um you know I think it’s it’s been
36:10 thinking about what works best for your
36:12 child like you know can they wear noise
36:15 canceling headphones does that something
36:17 that works
36:19 um like I know that I personally can’t
36:20 have headphones on for very long before
36:22 the pressure of the headphones then
36:24 starts to trigger something but there’s
36:27 this sort of like these waxy earplugs
36:30 that work really well for me so like is
36:32 that something that works well for them
36:34 does the camp have an ability for the
36:37 child to remove themselves and be in a
36:39 quiet space like an office or something
36:41 that
36:42 um and again these are questions you
36:44 really want to ask on the front end
36:46 because the last thing you want is you
36:48 know to sign your kid up for this camp
36:50 that maybe they’re really excited about
36:51 but it’s such a bad match for them and
36:54 their migraine that it’s just a
36:57 miserable experience so you know if they
36:59 can do noise canceling headphones if
37:01 they can do the ear plugs if they have
37:03 access to a quiet space because you’re
37:05 right Camp is a lot louder than School
37:09 it’s just kind of a wild time and do we
37:12 know of any camps that are designed for
37:16 children living with migraine
37:19 um specific camps for that not
37:21 necessarily I will say that here in the
37:23 United States the U.S pain Foundation
37:27 hosts a summer camp but it is it’s short
37:30 you’re not look it’s not the same thing
37:32 it’s not like two weeks or like all
37:34 summer
37:35 um it’s like the it’s sort of over the
37:36 course of of a very long weekend and in
37:39 fact they’re right there right now like
37:42 their campus just started where they
37:45 bring children who are living with
37:46 chronic pain together to have sort of
37:49 that traditional Camp experience that
37:52 you wouldn’t necessarily be able to have
37:54 otherwise
37:56 um thinking outside the box
37:59 um you know looking at a camp maybe a
38:02 camp that’s art focused or a camp that
38:05 isn’t very physically you know minded
38:08 like you know not a camp that is is
38:09 about being outside about camping in the
38:11 woods or about again doing a lot of
38:14 strenuous outdoor activities something
38:17 that maybe feels like a more quiet
38:19 activity like um you know like there are
38:22 camps that are specific to like you know
38:24 reading and Library camps like these
38:27 might be things that make more sense for
38:31 a child that has a more severe case of
38:34 episodic or chronic migraine what about
38:37 swimming
38:39 I mean I think that that again it’s it’s
38:41 like what works for your child both of
38:43 my children who
38:46 grew up with migraine swimming was not
38:48 an issue for them so that would not have
38:51 been a concern for me
38:53 um actually for me personally
38:56 so I currently live in the sort of the
38:58 middle of the United States but I didn’t
39:00 grow up here
39:01 um I grew up in California where
39:04 anything about you know over about 75
39:07 degrees was hot and so you know it’s
39:11 already I think in the 80s here and so
39:14 forget it like the Outdoor World doesn’t
39:17 exist for me in the summer unless I’m in
39:19 the pool and if I’m in the pool I’m fine
39:22 because just the ability to cool down I
39:26 can be outside all day as long as I’m
39:28 not getting overheated because getting
39:30 overheated will completely trigger
39:33 migraine for me
39:36 I I think it’s the same here it’s
39:38 getting hotter and hotter no matter
39:40 where you are in in Canada and indoor
39:44 swimming camps are becoming more and
39:47 more popular and more and more difficult
39:49 to get into because again parents are
39:51 parents are doing this their parents are
39:54 really working hard to make sure that
39:56 the summer is covered because we still
39:57 have to go to work when the kids you
40:00 don’t want them to miss out you still
40:01 want them to be able to especially if
40:04 you have a child living with a condition
40:06 then or with a disease then you don’t
40:09 want them to be sitting at home in the
40:12 summer because
40:13 you know there’s not enough
40:15 accommodations for them or because it
40:18 might be triggering more anxiety for you
40:21 and for your child because you don’t
40:23 know how safe it is
40:25 so is there a list
40:28 is there a packing list that you
40:31 recommend parents to actually have for
40:34 someone going for living with migraine
40:37 or a child living with migraine going to
40:38 camp and they’re going to stay for a
40:40 week let’s say is there a is there
40:42 something different than the regular
40:44 because I remember we had my children
40:46 all grown up now but we had that list
40:48 that said number of you know yes I
40:51 remember that list that list of all the
40:53 things you needed to take like your
40:54 sleeping bag and a pillow and you know
40:57 or you know it but it was like you know
40:58 like a unbreakable Bowl so that they
41:01 could you know I mean
41:04 again think about your child’s personal
41:06 needs obviously the ability to hydrate
41:09 so making sure that they have a water
41:11 bottle that they’re going to use yes
41:15 um you know a cold pack if you can I
41:18 mean that’s hard if you’re camping for a
41:20 week so again you had to assess whether
41:22 that does or doesn’t make sense for your
41:24 kid but I can give you an a a small
41:28 pharmacist advice here we do have the
41:31 ones that you break you break them and
41:33 you put them and they’re instant they
41:34 don’t need to be frozen they don’t need
41:36 to be in the freezer uh you know the ice
41:39 packs that we have in the pharmacy these
41:41 are very easy to find I don’t know if
41:44 some children also like heating pads or
41:47 something hot that’s also something that
41:49 we do have where you know the ones that
41:51 the small ones you have in your when
41:54 you’re skiing I have a box of those for
41:58 but I have a box of those for when it’s
42:00 really cold in Canada but the ice packs
42:03 that you just break and it immediately
42:05 becomes cold I would think that this is
42:08 this makes sense if they don’t use it
42:10 they can always bring it back yeah
42:12 there are other ways you know yeah I
42:15 think that’s brilliant like having that
42:17 sort of that that ice pack that they can
42:19 use in an emergency having some sort of
42:23 um cloth or bandana that they can get
42:25 wet that they can sort of put over their
42:26 neck and then a handheld fan to sort of
42:29 cool themselves down when they need to
42:32 again access to a way to remove noise
42:35 whether again it’s you know again you
42:38 want to have a conversation with this
42:39 camp like my child’s going to need these
42:41 things and they are coming with them you
42:43 know whether it’s like earplugs or you
42:46 know the noise canceling headphones
42:48 some sort of sunglass like I the
42:51 sunglasses and the bright light are so
42:53 important if they have migraine glasses
42:55 great but sunglasses you know when
42:57 you’re outside I never go outside
42:58 without sunglasses on and it makes a
43:00 huge difference for me like I
43:04 literally it really doesn’t even have to
43:07 be that sunny and I have my sunglasses
43:08 on
43:09 um making sure that they they have those
43:12 um whatever that they need to sleep as
43:15 well as they can sleep if they have a
43:18 special pillow that they have to sleep
43:20 with her you know like for me like when
43:22 I was really little I had my Binky so
43:25 like I would sleep better if I had my
43:27 Binky which is my blanket you know like
43:29 making sure that they have the tools
43:32 that they need to get the best sleep
43:34 that they can have and then
43:38 the understanding of women that they can
43:41 eat and snack so if you can send extra
43:43 snacks whether it’s some sort of like
43:45 fruit bars or granola bars or something
43:48 um trail mix so that you know again if
43:52 they need to be eating between meals as
43:54 well that they have access to
43:57 um the food that they need and I really
44:00 like this because I know also a lot of
44:02 camps say you cannot bring food but if
44:04 my child needs a protein bar because
44:06 they need higher protein because of
44:08 migraine then it makes sense to
44:10 communicate this and ensure that there’s
44:12 understanding that they’re not getting
44:14 sweets they’re not getting treats that
44:16 the others can’t get I’m not sending a
44:19 chocolate bar I’m sending like you said
44:21 a protein bar and again having those
44:24 conversations on the front end
44:27 um so that you know you’re going to get
44:29 those accommodations if you’re paying
44:31 for this Camp you’re paying for a
44:33 service your child has a really complex
44:36 neurological disorder and so you’re just
44:39 asking for what they need to be at the
44:42 same level of healthy as the other kids
44:44 are that’s not asking too much that’s
44:47 fair
44:49 and I think something I learned from my
44:52 kids I didn’t go to Camp as you can
44:54 imagine I didn’t go to campaign when I
44:55 sent my kids to Camp
44:57 um they my son became best friends with
45:01 the nurse
45:03 so they develop I think skills as well
45:07 to be able to Advocate is most important
45:10 for children is them becoming advocates
45:14 for their own needs and being able to
45:16 communicate and find people and bring
45:19 allies
45:20 for for themselves so if the the
45:23 counselor was not really supportive of
45:27 of what my my son needed then he had the
45:30 Ally in the nurse who understood better
45:32 and who was able to communicate a little
45:35 bit better with the counselor and give
45:37 them that
45:39 you know cold dark place they can lie
45:42 down in the nurse’s office and she was
45:44 loving and cuddling and and she was
45:47 really really providing them with the
45:50 support that they needed
45:52 um and that is something that I think we
45:55 possibly need to build with our children
45:58 as well to be able not only the parent
46:01 needs to communicate what what they need
46:03 but maybe the child
46:05 do you have advice as to how a parent
46:09 can Empower their child to advocate sure
46:12 yes I mean actually it is one of the
46:14 things that we try to do with our
46:15 students is you know learning to speak
46:18 up learning to Advocate and I would say
46:20 that that’s something that you know
46:21 having those conversations at home with
46:23 your children like you know you get to
46:26 speak up you get to say you’re in pain
46:29 you get to take care of yourself honor
46:33 what your body is telling you and
46:36 letting them know that you have their
46:37 back I mean I would tell you know I
46:40 would like not even question like if I
46:43 gotta say I got a phone call from camp
46:45 or school and that you know they were
46:47 saying that Chloe
46:50 um you know left the classroom
46:54 and you know we need to talk to you
46:56 about this and I found out it was
46:57 because they had asked that they needed
46:59 to go get some water and they were told
47:01 no and they were told no repeatedly and
47:03 then they could feel that like a
47:04 migraine was coming on I’d be like I got
47:07 you like I’m not going like yes like I
47:10 will then push back with the school like
47:11 well my child was doing what they needed
47:13 to take care of themselves advocating
47:15 for you advocating for your need you
47:18 know
47:19 that you know and the child is in pain
47:21 they’re not being difficult no they’re
47:24 not
47:25 challenging please it’s like you know
47:28 having having that freedom to know that
47:31 sometimes you just need to stand up for
47:33 yourself and sometimes you’re going to
47:34 get pushback the world may push back on
47:37 you sometimes that does not mean you’re
47:39 wrong
47:42 then I think we’re we’re getting closer
47:45 to the end of of this I can talk
47:49 um more and more and more but if you had
47:53 if you had to
47:55 um if you had to choose one thing or if
47:57 you wish you knew one thing when your
48:00 children were younger
48:02 um what would that be and now you know
48:05 it and you’re like no why didn’t anybody
48:07 tell me is there anything that you feel
48:09 that you needed to know
48:11 I would say that understanding how our
48:15 mental health impacts our pain and
48:19 impacts our physical self and giving
48:22 space to be mentally the strongest we
48:26 can be because
48:29 the stronger we are mentally
48:32 the more we can handle the Journey of
48:34 our physical pain and
48:37 add on to that the less that is
48:41 triggering possible migraine yeah and I
48:45 think this idea there’s a lot of anxiety
48:50 am I going to be able to make it to the
48:51 birthday party or am I going to have a
48:53 migraine as a child this might be in
48:57 adults I know it really really hurts to
49:01 be sitting there you’re invited you’re
49:03 excited and then you’re going
49:05 will I be able to make it right before
49:08 that like it’s you know yes like I I
49:11 know I’ll make plans I’ll make plans
49:13 with somebody I know there’s a chance
49:15 I’ll have to cancel and at this point I
49:18 have enough boundaries and I feel strong
49:21 enough that if it’s somebody that
49:22 doesn’t understand that person doesn’t
49:24 fit into my life now
49:26 I you know I know what I need to do for
49:29 me so but it took years as an adult
49:33 well I’m 15 years old so yeah it took a
49:36 while to get here
49:38 the child it might be challenging it
49:41 might be you also embarrassing to say
49:44 well I have a headache I know
49:47 um my some of my friends were telling me
49:49 that sometimes they’re worried they they
49:51 people don’t invite them anymore and
49:54 that’s even more Amplified for a child
49:56 they are invited and they don’t go
50:00 so what advice do you I mean it is such
50:03 a hard thing to navigate I mean the
50:04 complexities of being a parent and
50:08 moving our children through childhood is
50:10 just it’s so much to carry I think the
50:13 best we can do is just make space for
50:15 our kids to feel their feelings
50:18 and allowing them to sort of understand
50:24 that it’s okay to it’s okay to feel sad
50:27 and let’s move through that together
50:31 if someone wants to be and I’m hoping
50:33 that a lot of our listeners today or our
50:36 our viewers today are gonna be excited
50:39 about becoming an ambassador how can
50:42 someone become an ambassador and what do
50:44 they need to be to do to be an
50:46 ambassador you know you go to the
50:48 migraine at school website it’s just
50:50 migraine at school.org there is a place
50:55 that you can sign up to be an ambassador
50:57 we now have an online training which
51:01 takes less than 30 minutes it may not
51:04 even take 20 minutes you do the training
51:06 you then are a part of our ambassador
51:09 program and then we
51:11 um we will be in constant communication
51:13 sort of you know tips and tricks and how
51:15 to do your Grassroots Outreach
51:20 um where to start we give you the tools
51:22 to do all of the work we even provide
51:25 you with scripts and you know sort of
51:28 like starter emails just be because
51:32 um you know it’s hard to know where to
51:34 start
51:35 um so it’s yeah it’s really easy to sign
51:37 up and you do not have to live in the
51:40 United States to be a migraine at school
51:42 Ambassador that is that is not
51:46 yes that is the beauty of this we need
51:49 ambassadors all over the world wherever
51:51 you are if you can be an ambassador I
51:54 think a child is a child wherever they
51:56 live a school looks the same the
51:59 language might be different and that’s
52:00 why we also need ambassadors from around
52:03 the world so that they are able to use
52:05 these messages and make them sound like
52:08 what they need to sound in their local
52:11 um uh Societies or their their local
52:14 um schools I have just put the
52:18 um the the ticker in the in the bottom
52:20 for migraine at school.org migraine
52:23 Canada is also providing
52:26 um resources we have now a brand new
52:29 um guide for medications that can be
52:32 used for children please go there and
52:34 look for
52:36 um information on what medications can
52:38 be used in children and Amy I can’t say
52:42 thank you enough this has been educated
52:44 additional for me and I hope that our
52:47 viewers today have also gotten some
52:49 ideas please send us your questions
52:52 comment send us questions repost as much
52:55 as you can and share this beautiful
52:58 resource that is migraine at school that
53:01 we are very very happy to partner with
53:03 at migraine Canada and we hope that your
53:08 child is going to have an amazing summer
53:09 and that we have given you an idea or
53:12 two that will help them enjoy their
53:14 summer thank you very much Amy have a
53:17 thank you so much for allowing me to
53:20 come on and talk to you thank you to
53:21 migraine Canada
53:23 my Canadian husband is really excited
53:25 that I am talking to you guys so
53:29 um you know half of our household is
53:31 Canadian it’s such an important topic
53:33 and we just really appreciate that you
53:36 know that we were able to sit and have
53:37 this conversation with you so thank you
53:39 thank you very much have a very very
53:41 good day and enjoy the summer wonderful
53:44 you too bye