A Day In The Life of Epilepsy

within the epilepsy Community there is a saying that goes if you've met one person with epilepsy you've met one person with epilepsy this speaks to the 3.4 million people in the United States and 65 million people worldwide currently living with epilepsy each of those individuals is impacted in a different way and each has their own personal story to tell today we would like to share our epilepsy story in a way we've never shared before by showing you a day in the life of our family our daughter Adelaide was diagnosed with infantile spasms at seven months old over the course of her life Adelaide suffered from other neurodegenerative conditions but our first goal was always to stop the seizures a goal that we were never fully able to achieve nearly four years ago we invited a film crew to document a normal day in our household because as anyone who has epilepsy or acts as a caregiver to a person with epilepsy nose Life Goes On through seizures medications doctors appointments tests and therapies somehow Life Goes On epilepsy and all that comes with it becomes a part of everyday life though the impacts and circumstances vary widely from person to person and family to family the daily cycle of worry challenges frustration and hope to find the shared epilepsy experience so here is our life with epilepsy as it as it four years ago a normal day for our family existing in not so normal circumstances just a day in the life hello hello letting you in now yes the visitors this morning get back good morning welcome to the Cervantes house today lots of Chaos day in the Cervantes household begins at 7 A.M with Jackson barreling into our room and requesting to have someone come be awake with him getting him breakfast hanging out some cuddles by 7 30 it is time to get Adelaide's meds ready which consists of about four or five meds I have a cabinet where I organize all of her meds and feeding supplies in our kitchen and it is full to the gills with every Med that she is on every food that she eats and every syringe everything that we possibly need um to keep her alive she gets the most number of meds in the morning although there's five times throughout the day that she gets meds she is entirely G-tube fed so everything gets drawn up in a syringe and then delivered via G-tube that way her meds are constantly changing as to how much she gets of each Med so we actually have a list that we keep on the fridge that I try and keep updated because I would say it it does change pretty much weekly um we're adjusting meds which is really common for uh kids with epilepsy and neurological disorders because you're just constantly trying to figure out the right balance she started her first anti-epileptic at seven months and that was just one drug that was pretty easy and then over the course of the last two and a half years we just keep adding more and more so this is several years of drawing up drugs several times a day here hmm so I have drawn up all of Adelaide's morning meds right now she's getting five meds um first thing in the morning and then I have a water flush to make sure that all of those meds go in and now we're off to deliver mints good morning sweet angel baby hi Miss Adelaide yeah so overnight she gets a water feed just to keep her hydrated because I cannot figure out for the life of me how to get her all of the water that she needs during the day so this is her feeding pump um for which all of her food and water is delivered good morning sir which is supposed to be to be on her arm to prevent her from sucking her thumb at night because it keeps her awake but she Houdini's out of it every night yeah um so we also see I see you her BiPAP is this mask that is on her which sort of helps get air into the bottom of her lungs because she has a tendency to not breathe deeply enough I know I know huh um without the BiPAP she tends to get atelectasis and then require more oxygen with a med change Adelaide is no longer requiring oxygen 24 hours a day which is so stinking exciting um so she's actually hopefully will maintain her oxygen today and we won't need to use our concentrator to help deliver oxygen she is also connected 24 hours a day to a pulse oximeter which is right here and this just tells us what her blood oxygen saturation is that needs to be in that number needs to be in the 90s and then what her heart rate is so we kind of keep an eye on her heart rate once it starts to get high into the 140s 150s 160s we generally know that a seizure is about to happen or is happening are you ready for some meds should we give you some meds um so Adelaide's G-tube here um she doesn't take anything by mouth currently so everything is delivered via her G-tube this is just a little extension that attaches to that yeah you ready for your meds and then we'll we'll get your diaper changed um it's pretty simple all the meds get delivered in there it's like the best thing ever she can't spit them out I know that she's gotten all of the med that she needs to get yeah do you feel that going in your tummy I think you do I think you feel it going in your tummy water to wash it down and then should we change your diaper should we change your diaper what do you think you looking at us yeah do you want to go cuddle your brother what do you think you can go get some cuddles every day she gets her morning cuddles with her brother Jackson throws a fit if he doesn't get his cuddle time with his sister so they get their their morning Cuddles in and then the um the the typical Family Circus of getting a child off to school begins with trying to get Jackson dressed and teeth brushed and um out the door to school relatively on time always keep the pull socks near her so that if she does alarm we can hear it and we know what's going on and you get your cuddles do you need anything Jackson you good did you eat your breakfast yeah no and good morning kisses from Daddy no all righty around 8 30 our nurse Adrian shows up for the day and uh sir is able to to step in and she literally swoops in and takes over good morning good girl good morning there's a lot more medical supplies than just that one cabinet in the kitchen this is filled entirely with different items that she we have either accumulated or she just needs throughout the day additional medical equipment in the back corner here most of this on the ground is therapy items braces toys and an abundance of stuffed animals and this little girl has more clothes I think than I do um when you can't buy a little girl toys to play with you and books lots of books she doesn't have to live in a hospital room even if all of the hospital equipment is in there okay so she's not neurotypical you know but she's still my baby girl and she deserves to have a baby girl's room and all the pretty things that that go along with that and try and keep her life as normal as possible for her for us for her brother and then I have in the back of the closet sort of an assortment of toys that have never been opened that she may never be able to play with but for whatever reason I just can't let go of them yet in the hopes that maybe someday she will so I tuck them in the back but they're there it kind of sucks oh guys [Music] oh it's okay sweet girl you're safe safe [Music] what time did it start Adrian 8 40. okay okay yeah we're safe you're safe sweet girl [Music] yeah mommy's here yeah Jackson stay away please give her some space I know foreign [Music] it's okay I know I know that's not good [Music] Okay so it's okay it's okay um do you want to get a pepper ready um so this seizure is lasting a little longer than her normal ones um so I've just asked her nurse to get her the first emergency med that we give her um that we try to try and see if we can get it to to stop typically her seizures last around 30 to 45 seconds and um she doesn't seem to be coming out of this one this morning oh it's okay I know you're safe you're safe you okay yeah you're safe it's okay it's okay it's okay so she's still pulsing um I can feel her body which is still like if you look in her legs you can see very subtle but she's like flexing it looks like she's just it looks like she's just flexing but it's yeah that was weird she was trying to suck her thumb but she couldn't get it in there it's okay sweet girl yeah it's still going to get you some medicine and make it stop okay yeah I mean she's like it's very like seizure it's weird mommy is here and daddy is here yeah do you hear Miss Adrian yeah is it all over now are we all done yeah well done all done yeah I know I know it's not fair huh it's not fair I love you um I think it's over but I think we should still give it to her I think so too because it lasted much longer yeah well and I'm worried that it's good greater than three minutes it's gonna cluster and she'll have another one so let's just I'm gonna hold your hands huh you're okay I know I know Mama that's not fair I love you yeah it's okay it's okay [Music] there you go she doesn't have great coordination anyway but a lot of times after a seizure we'll see that that coordination is um further compromised by you know she'll have a hard time getting her thumb in her mouth putting my hand S I like that we could have seizure control she could be seizure free we wouldn't have her alert and awake in order to have that seizure freedom should be on oxygen she might need a trach it's just not worth it I want my daughter I want to her to look at me I want that eye contact I want I want her to of quality of life it's age-old question in epilepsy world is finding that balance between seizure control and quality of life how much quality of life are you willing to give up how you know how frequent how bad of the seizures are you willing to live with unfortunately she can't tell us so we have to determine that for her I love you I love you to pieces I don't love putting her in this chair um because it doesn't offer her a ton of support because she just had a seizure we need her to be upright for her feet so she doesn't reflux or spit it up all right let's get breakfast chacho are you getting ready to leave oh you are leaving can I have a goodbye hug do you have your lunch and snacks and all that your homework folder you're saying goodbye to Addie his normal is the seizure so he'll be sitting on the couch and he'll say nothing is she having a seizure or look at her numbers or check out her Monitor and she'll let he'll let us know what the numbers are and he knows how to turn on the turn on and off the feeding tube and I think a typical day could involve a seizure and it doesn't it doesn't it's not it doesn't register or affect him any like he's just like usually we'll just continue watching TV or doing whatever he's doing and might say I'm here too Adelaide I'm glad it doesn't traumatize him he takes it more like a more in stride as part of our normal have a good day at school Doodlebug love you good boy so Adelaide's diet everything to the G-tube so it's all entirely liquid Adelaide was getting food by mouth up until about a year ago when she really started to take a pretty steep Decline respiratorily and we just didn't feel like it was safe anymore for us to feed her by mouth so since then we have been doing everything through her tube somewhat optimistic that maybe we'll be able to try oral feeds again it really just depends on her strength and how she's breathing and hopefully we can do some feeding therapy again soon but we got a little ways to go before she's ready for that all right breakfast so Adelaide right now is pretty sleepy and out of it which is really normal for um after a seizure they call it being post-dictal this user just really sort of wipes her out all right sweet girl get some rest huh get some rest get some breakfast so right now I'm just setting the rate on the pump because it'll um do it at a continuous rate for us and she gets different settings at night versus um for her daytime feeds so this breakfast will run over about a period of 45 minutes and add a little just chill in her chair while she gets her breakfast and um sort of sleep off rest off that that seizure a little bit the med that we gave her can also make her a little tired too um but hopefully she doesn't have another seizure this morning A lot of times her seizures will cluster so we'll get one and then anywhere from five to 20 minutes later we'll see another one so we'll be on kind of high alert but I can look and see on the pulse ox that her heart rate's 129 130 which is um which is a pretty good rate for her if it started to get into the 140s 150s I'd worry that we were another seizure was coming but she looks pretty good right now Mommy needs more coffee [Laughter] in in our sort of weird little Universe here seizures are are normal one day we think we have we're on the clock and time's running out and then the next week we feel like oh wow this is actually changing and going in a positive direction you know and and then like today we get this seizure that we haven't seen before that's really a little bit different than it was two days ago was this kind of a little similar to what you saw over the weekend no I haven't seen that seizure type this one here today yeah because it was so weird at the end it was like she was awake and still seizing it was like normally during the seizure I feel like she's not with like she's not there she kind of blacks out but I felt like she kept trying to put her thumb in her mouth and then would seize yeah and couldn't do it there's just not really any way to zero in on on what's going on it's complicated with somebody like Adelaide because seizures are part of a bigger problem in a genetic chromosome whatever her problem is we can't find it but epilepsy is probably usually one of the symptoms of of that problem so her problem has seizures and low muscle tone and uh and very very low cognitive function well you don't know what's wrong we don't know what we're treating we have all of these symptoms we know that she has epilepsy we know that she has the low muscle tone Mast Cell Activation dysautonomia we know all of the symptoms but we don't know the why we've we've exhausted commercially available genetic testing we've moved into research genetic testing every doctor and geneticist we talk to tells us that they're almost certain that it's a genetic issue because nothing shows up in her brain MRI we've done every other blood test Under the Sun that you can think of um so we just have to wait for science to catch up so that we can know what's causing it so that maybe we can see if there's a treatment how do you treat something the overall cause the overarching how do you treat that when you don't even know what it is ready it's probably about twice a week it's not like she's super active and getting out there and getting sweaty so um twice a week usually covers it maybe as she starts to get a little older we'll have to do it more frequently it does take two of us one person to wash her but it takes two of us to get her in and out of the tub especially as she's gotten bigger it's the same as any other kiddo except that she requires a special chair in order to be able to take the bath no peeing on Mommy oh yeah you think that's funny she used to love getting baths it was one of the times where we would see her laugh and smile I know do you feel the water she used to respond much more in the bath we I'm hoping maybe we'll start to see some of that again in the world of epilepsy if you can get rid of seizures than any potential that is in there that's able to function and learn and grow and develop can be you know accessed the terrible thing is seizures will stop that and seizure medicines will stop that and so the goal is to get rid of the seizures but you're also trying to have a child or else I would have have the the ability to sort of develop and she was developing she was you know we she was always how she is but the seizures came the smiles and the you know learning and grabbing and all these things went away and it has to you have to say it was because of the seizures and because of the medicine but there's this other problem as well um so it's all this big sort of mixture and and we we don't know what she would be able to do um at the end we don't know if she'd all be able to walk she may never be able able to even without seizures she may never be able to to eat all you know regular food but we won't know if that's possible until we can get rid of the seizures with the medicine that doesn't knock her out oh I'm sorry yeah did that hurt I'm sorry yeah that's not my dragon it's tongue it's too fuzzy technically Adelaide is old enough to go to school um we could send her to preschool and CPS would have to take her we elected to keep Adelaide Home for the time being and not send her to school um because we can have Adrian at home and Adelaide really requires one-on-one attention so we've we've decided to keep our home from now we could always change that later but we'll keep her here for the time being what's in the tree the mama bird feeding the baby birds hello hello two days a week in the afternoon she has therapies physical therapy or occupational therapy PT once a week and OT once a week up until recently she was requiring oxygen 24 hours a day and so we had to stop all therapies that needed to be done outside of the house because transferring her to a studio was just too challenging so right now she just receives those two therapies at home but hopefully we can start adding some back in if she continues to be respiratorily stable she's got a little bit of a scoliosis starting so we're working on some rib cage mobility and elongation just the ribs are still mobile so we want to keep them that way you know and then we do some core lots of core activation and transition so I have her going from sitting to laying on her stomach to really get her obliques active and then trying to get her arms away from her body a little bit for play you look good you do look good good job we have seen incredible benefits from from the physical therapy um the hard thing is is that the infantile spasms comes back and then we lose it all ideally right now we need some sort of treatment whether it's a surgical drug pharmaceutical that will stop her brain from seizing and allow her body to to to grow in her brain to grow and develop in whatever form that it can whatever its potential is we want to be able to realize that um and that that's our greatest hope for her is that there is some sort of treatment that will stop our seizures so we can see if she's in there or if we can find her if she can come out no closing no closing those eyes we'll keep bouncing right yeah good job yeah girl there's my girl and there's just always the hope that I mean we have to we have to cling to that hope that maybe someday it gets a little better

Channel: CURE Epilepsy

Views: 131,294

Keywords: A Day in the Life, Epilepsy, Living with Epilepsy, Infantile Spasms, Kelly Cervantes, Miguel Cervantes, Adelaide Cervantes, Cervantes Family, pediatric epilepsy, seizures in children, living with seizures, epilepsy impacts, CURE Epilepsy

Id: HnGg4Migkb0

Length: 28min 15sec (1695 seconds)

Published: Mon Dec 05 2022