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The Child Patient Journey

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Are you the 33%?

Emme said to me once i don’t know what to tell my friends i said you should just tell him enemies like dad i’m in 2nd grade i’m gonna tell them i have nephrotic syndrome they’re not gonna know what the hell i’m talking about i’m like that’s okay that’s a good point well why don’t you just tell him you have a kidney disease and she’s like dad nobody knows what that

Is how am i gonna tell them that i’m like what you just tell them that you know and as i started talking i’m like yeah kidneys are leaking proteins which cause this was going on i’m like yeah what am i saying i can tell a second question i just feel like my classmates like a high school student i’ll just say sometimes my kidneys will just randomly stop working

But when i tell like an adult and someone like looking for a thorough answer i’ll say in nephrotic syndrome what happens is there’s damage to the kidneys and you start leaking protein and proteins which your body depends on are leaked from the kidney come in the urine and are lost to the body there’s no real cause there’s no real cure probably the most common

Complaint is swelling swelling of the eyes spelling of the feet sometimes it’s swelling of the admin but the most common thing is actually swollen eyes his eye started swelling up well actually the first time we took him to the doctor they thought it was an allergic reaction oh let’s just try a few things didn’t work took him back to the doctor checked his urine

She came back in the room and said he has something called nephrotic syndrome it was the day after her dress rehearsal and dressed her so they put all the makeup on and i woke her up to get ready for school and she was really puffy they looked at marilyn like oh my god so then i got my mom and dad of course and then they thought it was the makeup so they didn’t

Let me have the makeup the next day so and then it happened again my sister couldn’t say christian when i was first born so i said kitchen and that turned to chichi but then at my spanish told me what it meant in spanish that my mom wouldn’t let me call him that anymore oops so then it just turned him to cheech it’s tougher just her so i was diagnosed when i was

Two our pediatric doctor said i think this might be something called nephrotic syndrome and he said your son is very sick i have nephrotic syndrome and i think it’s gonna be with me most likely my whole life i didn’t really want anyone to know i don’t know why but now a lot of people know i just didn’t want anyone to ask me questions or be like why do you have

This you didn’t even tell your friends no what i used to be very outspoken about it but not so much no but i think he just wants to be a kid he wants to be a kid at school and jenny wants to talk about anything that he feels that’s a little bit different from what other kids have i kind of got famous at my school i mean they knew like something was wrong because

You don’t just gained like 50 pounds in the span of like two weeks three weeks it’s made me miss a lot of school he’s been hospitalized five times he’s doing it says the workers that texture workbook for missing class like oh extra work sometimes i did miss school but not a lot usually i was at the doctor’s really it’s scary for other parents not contagious yeah

There’s a lot of like things a contagious most of the time the symptoms are pretty much the same right the swelling of the face and body i feel like that’s the one thing a lot of us have in common but then what happens afterwards is completely different since there isn’t a cure there’s just different called treatments that they want to try to see what works and you

Know as a parent you’re not used to that you go to the doctor because there’s a broken arm and what do they do they fix it in a chronic disease there isn’t a fix there’s just things that you hope will work to keep the kidneys functioning and hopefully put you into remission for some you know negative time with prednisone which is our most useful drug we suppress

The immune system and allow it to reboot hopefully with the new products and i’m going away prednisone really does a great job in helping control a neurotic syndrome but it’s not without a side fight it’s emotionally it took him on a little bit of a roller coaster he will go through 0 to 10 and like throw the computer like really go into a rage are you having a

Tantrum or are these the drugs that are affecting you i got really crazy i interrupted a teacher wake up at 5 in the morning and she’d come in and be like standing over us like a creepy possessed child i’m bored and i just make books in the morning or and just write them so when i’m on prednisone i’ll get like super hungry eating habits things you stayed hungry i

Had finally had she would sit sometimes by the clock in the food schedule and she would just wait it makes you want to eat but it also gives you a moon face and it makes his cheeks really red and flush your medical makes you get a bad sunburn he not in a child who is still nephrotic still having leak of protein in the urine after six weeks to two months of prednisone

Therapy they’re called a prednisone failure because the steroids aren’t working as well as they’re supposed to i did do one biopsy they’re going to go in with a tiny little needle and basically take a piece of kidney and examined under a microscope and that was to determine whether him he had nephrotic syndrome minimal change which is a good version versus fsgs which

Is the more difficult version and more damaging to the kidneys it wasn’t hard for me but it was hard for my mom and dad and then the moment before she went out she kind of went through and she mama and then like went down both of us were like she she gotta woke up and she looked around just thought disoriented and then she’s like can i have cheetos that’s the good

News that that she was minimal changes right christians had to biopsy he’s got nephrotic syndrome minimal change we biopsy you know we never biopsied okay presumably he’s minimal change because he’s been so responsive to steroids but we don’t biopsy kids unless there’s you know they’re having less of problems because the steroids aren’t working then they they you

Know roll out a selection of options of highly toxic different drugs that you have to choose from for the secondary treatment and when the first drug they mentioned has toxin in the name of the drug you’re thinking that’s probably not the one we want to choose for our kid do we want to risk fertility brain damage you know like all these different things and so you

Rig an where you’re like your kids looking at you and you’re thinking damn this is a huge decision like this could affect her in twenty years they all kind of like stopped me from growing which kind of sucks he’s a big boy fifty two point nine inches the reason we look at this story is because we want to make sure that your medications aren’t interfering with your

Growth we were told when this all started that to expect one to two to three relapses a year she’s been in remission and we’ve been lucky there hasn’t really been a relapse care he typically would have like three two maybe for her year christians had over forty relapses when i relapse i’m retaining water i get thirsty but i’m not allowed to drink i wore like three

Shirts cuz nothing fit me we had a dress-up day where we have to like wear suit and stuff so i just did go to school i think when you have a relapse what is that like stomach aches my stomach hurts i get headache he left school looking like a different person and he started school looking like a different person then just coming back to school like kids were just

Like whoa you have a jaw line again when i relapsed this year from january to beginning of summer when i started to look like myself i didn’t go out in public you put any child through with the teenage years which we all know is rather turbulent and then you add on some sort of chronic illness and you’re gonna have times when a child or the teenager is gonna push

Back we were having a constant struggle with him saying no i’m not gonna do that i’m not going for a blood draw i’m done with that forget all this and i started just letting him say no and then i would say okay be in the car at 7 and sure enough he’d start creeping out and that was amazing just giving him the power to speak his mind and say you know no i don’t

Really want to do this but knowing back in his head that he knew he had to when you add on any sort of a chronic illness to a family it’s like having another child or obviously giving emmy a lot of attention and so i was also very aware of like how are we screwing up selma and one hand siblings are very compassionate on the other hand they’re jealous he’s a good

Big brother he really he’s there you know he’s always there by i’m right by his side when he’s in the hospital he’s right there staying healthy moving around and being active it was really important was first you likes me baseball jordan is definitely a bookworm so i pushed him a little more to just come out and try to show him the importance of what working out

Can do for your body i like when you work out you get all this energy i play rugby i ran cross-country i was gonna play football then i got sick football is a passion of his the best he could do right now is to get to be the football manager for belvin i love to serve i love acting i love dance when he was little after every blood draw he would get a sticker all

These stickers are from from an every blood draw he’s had and he’s had more when you’re 13 you’re not getting stickers so this is like a diary yeah pretty much it was one of the best suggestions that they gave us was get a big notebook because you’re gonna lots of room to write it’s so wonderful when families keep good records it’s easier for us computer out there

Dealing with you know hundreds of patients these were every blood test and urine test she’s ever taken when you go get second opinions and everything it’s so inefficient i remember seeing one doctor and he said thank you for giving me the dropbox and for that report from your hospital because i’m not even allowed to ask you for it if you’re not proactive about

Giving them the information they’ll just kind of start fresh and just do what they always do sometimes go right in the book itself whether he got it- you know he can tell his dad that you know we’re down to five ml’s today and so it sort of just makes him know what’s going on with his body she’s done a really good job he says that all up himself all the years of the

Immunosuppressants that he’s had to take have weakened his immune system to give him some form of immune system he does this ivig in function once a week when you can’t give your child answers the best you can do is like get information by raising money you feel like you’re making a dent and helping perhaps find a cure we always participate in the walk that’s local

In la zacks mom janet and i we realized we had children who were the same age they have this same primary doctor and the same nephrologist let’s kind of schedule their appointment on the same day that would be fun i said you want to be my pen pal and they met for the first time at our la walk last year and they’ve been inseparable ever since my school’s really like

Supportive so i missed a lot of school i’ve had to go to the hospital for my infusion then a couple of my friends texted me a picture there was a banner hanging on the balcony on my school i had my name on it with like a bunch of hearts so i was like why is there a banner with my name on it they were just praying for him or thinking about him or just as great and

There’s one great thing about being a kid is that you’re young and it’s great to be young the body can rebound from so many things that adults can’t handle if you can hang with it he or she can live a long life healthy life can do the things that all kids should be able to do and can do and you can still enjoy life despite having to deal with this sort of chronic illness

Transcribed from video
The Child Patient Journey By National Kidney Foundation