Latest / Tom's Hirschsprung's Podcast / Episode 73 - With Ashley Matthews

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Episode 73 - With Ashley Matthews · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode seventy three of Tom's Hirshprung's Podcast, a slightly different
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Speaker 1: one for you today, where we are going to talk
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Speaker 1: about the dual diagnosis of both Hirshprungs and Down syndrome,
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Speaker 1: and I am delighted to be joined by Ashley Matthews. Ashley,
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Speaker 1: welcome to the podcast.
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Speaker 2: Thank you so much us here.
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Speaker 1: Absolutely, thanks so much for coming on. And one other
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Speaker 1: thing I should mention before we start is we are
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Speaker 1: both Reach ambassadors as well. So yes, that's how that's
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Speaker 1: how we first came across each other.
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Speaker 2: M hm yep.
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Speaker 1: But we are here to talk about your son Milo
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Speaker 1: and he is dual diagnosis of Hirshprungs and Down syndrome.
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Speaker 1: Would you like to take us from the beginning, take
1:27
Speaker 1: you from the start?
1:28
Speaker 2: Okay, So, when Milo was born, we had no idea
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Speaker 2: that he had Down syndrome, and I don't know that
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Speaker 2: there's a way to test for Hirshprungs in euro I
1:43
Speaker 2: don't think so, not.
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Speaker 1: That I know of. Some people may know more than
1:48
Speaker 1: I do, but yeah, I just.
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Speaker 2: Wondered about that. I don't think so, not that we
1:53
Speaker 2: would have had any clue what that meant. But he
1:57
Speaker 2: was We were supposed to have a nowal birth, not
2:01
Speaker 2: at the hospital, at a birthing center, but I ended
2:05
Speaker 2: up having pre clancia and we had to go to
2:07
Speaker 2: the hospital, which was really terrifying. I ended up being
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Speaker 2: in the hospital for six days, and it was pretty
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Speaker 2: scary at different points in the in the process.
2:20
Speaker 3: But when he was born, they kind of whisked him away,
2:25
Speaker 3: and I was so out of it because of the
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Speaker 3: magnesium that had me on for pre clancium.
2:33
Speaker 2: That I just I just didn't know what was going on.
2:36
Speaker 2: And they kept like kind of there's a lot of
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Speaker 2: people in the room, and they kept kind of like whispering,
2:41
Speaker 2: and my husband was kind of looking over, like what
2:44
Speaker 2: what's happening? And then a nurse brought him to me
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Speaker 2: and she said, this isn't really this is easy news
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Speaker 2: to give, but he has down syndrome, and we're just
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Speaker 2: like what And she kind of hesitated to give him
2:58
Speaker 2: to me, and I guess it didn't occur to me
3:02
Speaker 2: until later that like some people may not be like
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Speaker 2: welcoming with open arms. So I was just like, give
3:09
Speaker 2: me my baby, give me my baby, and we kind
3:14
Speaker 2: of just went from there. And it was like such
3:16
Speaker 2: a whirlwind because right as we got wheeled to the
3:24
Speaker 2: mother baby room, a nurse came to check on him.
3:28
Speaker 2: And this was maybe an hour after he was born.
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Speaker 2: A nurse came and was to check on both of us.
3:34
Speaker 2: And it's funny, I'm still I still am like in
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Speaker 2: touch with this nurse because she may have actually saved
3:41
Speaker 2: his life because she saw that he was turning like
3:45
Speaker 2: purple and blue and wasn't getting enough oxygen, and so
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Speaker 2: she like took him and just ran to the NICKU
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Speaker 2: and we were all My family was there too, and
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Speaker 2: we didn't even tell anybody he had down syndrome at
3:57
Speaker 2: first because they said they were going to do some
4:00
Speaker 2: testing and all of the above, and we were just
4:04
Speaker 2: we were just reeling from the news and also from
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Speaker 2: how I was in bad shape. And so they left
4:14
Speaker 2: and a couple hours later we get to go to
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Speaker 2: the nick you and I mean he's hooked up to
4:20
Speaker 2: everything everything, like there's an ivy coming out of his head.
4:25
Speaker 2: It was just it was terrifying. It was truly terrifying,
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Speaker 2: and would be that just started our nick you journey.
4:35
Speaker 2: And it was I believe it was ten days later.
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Speaker 2: Like he wasn't feeding right, he wasn't you know, he
4:43
Speaker 2: wasn't pooping, he didn't pass the maconium, and he started
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Speaker 2: to throw up this like bright green file and so
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Speaker 2: they went and did a test and they came back
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Speaker 2: and sa, we're going to have to transfer him to
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Speaker 2: a different hospital, which thankfully we have two like really
5:04
Speaker 2: amazing hospitals near our house, and so we were only
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Speaker 2: twenty minutes from the hospital, but we stayed at Ron
5:10
Speaker 2: McDonald right across from where the hospital was, and we yeah,
5:17
Speaker 2: we just it was such a whirlwind. They packed him
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Speaker 2: up in this big, you know, incubator type of thing
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Speaker 2: and transferred him by ambulance to another hospital and then
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Speaker 2: at eleven days old, he had a seven and a
5:30
Speaker 2: half hour surgery and we were just I mean, it
5:35
Speaker 2: was just so crazy. It was just so crazy because
5:37
Speaker 2: we've never even heard of hersch Bruns. That's when they
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Speaker 2: came to us and said, this is what this is.
5:42
Speaker 2: And thankfully we had a surgeon there who knew about it,
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Speaker 2: and you know, it was fairly versed. She was a
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Speaker 2: general surgeon, she wasn't a specialist. We didn't even know
5:52
Speaker 2: to go to a specialist. And his surgery was successful
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Speaker 2: for what it was not successful in the way that
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Speaker 2: we don't have to still do daily, every other day maintenance.
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Speaker 2: But yeah, it was just it was so stressful and
6:13
Speaker 2: it was not not the way we anticipated everything going.
6:17
Speaker 2: And you know, by the time we got home, we
6:22
Speaker 2: thought that everything was going to be okay and fine,
6:25
Speaker 2: but then it just kind of started this whole trying
6:29
Speaker 2: to figure out what was going on. He was he
6:33
Speaker 2: had a really hard time passing gas, He had a
6:36
Speaker 2: really hard time getting any poop out. He was just
6:42
Speaker 2: miserable at different points. So we ended up with several
6:44
Speaker 2: different hospital admissions and learning how to do anal irrigations
6:49
Speaker 2: and you know, we were still doing that. I can't
6:54
Speaker 2: remember what it's called, but it was the this long
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Speaker 2: metal something that we came home with the hospital with
7:03
Speaker 2: to make sure everything stayed open.
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Speaker 1: Yeah, like the mental kind of like metal rule. Yes,
7:09
Speaker 1: I have. Yeah, I have had several people who've who've
7:13
Speaker 1: said that they came home with that from the hospital
7:15
Speaker 1: a nice present, but the hospital gave nice present.
7:18
Speaker 2: Yeah, I can't remember what it's called. But that started
7:22
Speaker 2: our journey of just like learning everything we can about
7:27
Speaker 2: her springs, about the colon, about like how a dual
7:32
Speaker 2: diagnosis with that plays, you know, plays its part because
7:37
Speaker 2: it's so much harder for him to communicate to us.
7:40
Speaker 2: Like I was telling you that he didn't have any
7:42
Speaker 2: words until he was four, So we were just kind
7:46
Speaker 2: of like trying to figure out what in the world
7:49
Speaker 2: was happening when he would be crying about it, and
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Speaker 2: usually it was gas. Usually, I mean, he's just stayed descended.
7:59
Speaker 2: So we started in was really early, and we started
8:02
Speaker 2: with the really small glisserin ones and those made him
8:07
Speaker 2: cramp horribly. And and any GI doctor too that we saw,
8:12
Speaker 2: any specialists that all they could tell us was use
8:15
Speaker 2: me relax, take neuralax, see if neuralax will work. And
8:20
Speaker 2: we're just like number one, neuralax is poison. That's my
8:24
Speaker 2: personal opinion and lots of other parents too. But neuralx
8:29
Speaker 2: has lots of bad ingredients in it and it's not
8:32
Speaker 2: helpful for gut help look in my gut and U
8:38
Speaker 2: Braine connection and it didn't help either. It didn't really
8:43
Speaker 2: do very much. So a lot of like top down
8:46
Speaker 2: things that we tried, we finally have found a supplement
8:50
Speaker 2: over the last six years of trying different things that
8:54
Speaker 2: seeing this seemingly helping. But he's still he can he
9:01
Speaker 2: can somewhat go on his own, but it's not enough.
9:05
Speaker 2: I try to explain this to people because it's like, Okay,
9:08
Speaker 2: the goal is for him to poop on his own, yes,
9:11
Speaker 2: but when he does, it's not a complete elimination. So
9:15
Speaker 2: he ends up like with like four or five pops
9:19
Speaker 2: and then we run. Then we get into rash territory,
9:24
Speaker 2: and in rash territory, I've got a whole other story
9:27
Speaker 2: for you, and we just we just end up like
9:35
Speaker 2: it's what's the what's the way that you say this?
9:42
Speaker 2: What's that one? Rocking is a hard place.
9:47
Speaker 1: And oh if you swear rock on a holid place,
9:50
Speaker 1: thank you.
9:51
Speaker 2: My brain. So when he when he does go, he
9:59
Speaker 2: ends up still having all of this trap gas and
10:03
Speaker 2: it's never really like formed, it's never like it's just
10:08
Speaker 2: it's just hard to figure out. And when he is
10:11
Speaker 2: able to go, sometimes it's like, well, what changed because
10:15
Speaker 2: he has food aversions? So he eats like less than
10:18
Speaker 2: twelve foods. Like he eats. He still eats pouches at
10:23
Speaker 2: six years old, and so he he's very limited in
10:29
Speaker 2: the things he eats. So when something has changed, it
10:32
Speaker 2: is like, what could it? What could it possibly have been?
10:35
Speaker 2: What changed? When he gets more exercise when he's on
10:39
Speaker 2: the beach, especially when he's running in the sand, he
10:42
Speaker 2: will be able to go better. I'm like, Okay, that's
10:47
Speaker 2: our that's our call. Then we need to move to
10:49
Speaker 2: the beach.
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Speaker 1: Yeah, okay, just god, live by the beach and run
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Speaker 1: around the beach.
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Speaker 2: I think it's like medical, medically necessary at this point.
11:01
Speaker 2: But so we tried. We tried everything, I will say,
11:07
Speaker 2: and we got to a point in twenty twenty three
11:13
Speaker 2: and we were just staying in maintenance mode with the anemas.
11:16
Speaker 2: We switched up to the saline anemas and we use
11:20
Speaker 2: the adult version, this fleet enemas, and we've been using
11:26
Speaker 2: these for years now, even when he was really small,
11:30
Speaker 2: because the kid version of these just wasn't enough, and
11:37
Speaker 2: so we switched to that, and we run into a
11:40
Speaker 2: lot of hydration issues because he just has a hard
11:44
Speaker 2: time drinking a lot of water. He only drinks water
11:47
Speaker 2: and he drinks a Cape Farms meal replacement milk plant based,
11:53
Speaker 2: which is diet is a whole big thingout this too.
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Speaker 2: I think that's the thing with being neurotypical versus down
12:00
Speaker 2: syndrome too, like eating the right things, and if you
12:05
Speaker 2: don't have food a versions, you can't understand how hard
12:08
Speaker 2: it is to like hand your child peanut butter crackers
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Speaker 2: every single day of his life and it's the only
12:15
Speaker 2: thing he'll eat and oatmel or yogurt or these pouches, cheerios,
12:24
Speaker 2: his milk. I'm nearing the end of the list, Like, yeah.
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Speaker 1: You said, you said about about twelve foods, and that
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Speaker 1: must be that must be incredibly tough because when obviously
12:35
Speaker 1: we're being a stomach condition, obviously diet is going to
12:38
Speaker 1: be you know, huge, getting a fiber and whatnot.
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Speaker 2: Yes, yeah, so we do supplement a lot, and thankfully
12:48
Speaker 2: the pouches we do Serenity Kids in seahbelly, so it's
12:55
Speaker 2: there's lots of different things in them, but there's like
12:59
Speaker 2: sweet potato in spinach and olive oil is one that
13:02
Speaker 2: he really likes, and having like the fatty healthy fat
13:06
Speaker 2: in there, Avocado oil and that type of thing, those
13:09
Speaker 2: types of things, fiber added in and a probiotic A
13:14
Speaker 2: lot a lot of times we can we can make
13:17
Speaker 2: it work. But yeah, like him eating whole foods would
13:22
Speaker 2: be amazing, and I think it would it would help
13:24
Speaker 2: him so much, But I can't even get him to
13:26
Speaker 2: even attempt to try it yet. Yet that doesn't mean
13:31
Speaker 2: he won't. So we got we got to like a
13:36
Speaker 2: sort of a maintenance pace, but then all of a
13:38
Speaker 2: sudden he had this flare and his enemas weren't going well.
13:43
Speaker 2: He was crying really hard every time we tried to
13:46
Speaker 2: do the emmas. His stomach had this like strange invention.
13:51
Speaker 2: And it's like I tell people that I feel like
13:54
Speaker 2: I know his anatomy better than my own, and like
13:57
Speaker 2: I'm gonna notice something is off anyway with him. And
14:03
Speaker 2: so that was kind of strange. And so we started
14:05
Speaker 2: to go to a new specialist about two hours away
14:08
Speaker 2: from here, and they suggested we try the botox procedure.
14:14
Speaker 2: And I'd read lots of different things about botox. I
14:18
Speaker 2: had read lots of people said it helped, it worked,
14:21
Speaker 2: you know, like they had to do several rounds of it,
14:24
Speaker 2: but it was okay. Some people said, it did nothing.
14:29
Speaker 2: You know, it just is so individual, like all Hirshrum's patients, right,
14:36
Speaker 2: yeh right, it's just so unique to the person, the individual.
14:40
Speaker 2: No two were going to be the same. And so
14:47
Speaker 2: against my better judgment, I had this like gut feeling
14:50
Speaker 2: about it because over the years, my intuition as a
14:54
Speaker 2: mom has had to like has spiked because because he's
14:59
Speaker 2: been nonverbal, he's nonverbal for four years, because he's had
15:03
Speaker 2: all these challenges, because he's unaware of his safety at all,
15:06
Speaker 2: you know, like all of these things, I've had to
15:10
Speaker 2: project my energy out to make sure where he was
15:14
Speaker 2: at all times. And I tell other people that, like,
15:18
Speaker 2: if I'm in another room and he's in this room,
15:20
Speaker 2: I can almost tell you exactly what he's doing. And
15:24
Speaker 2: it's just me having to be so hypervigilant, which is
15:30
Speaker 2: not great for your nervous system, I will say, but
15:35
Speaker 2: it is something that I've had to attune myself to
15:38
Speaker 2: for years now. And my intuition told me, don't do this,
15:44
Speaker 2: this is not going to go well, don't do this.
15:47
Speaker 2: And I felt like we were kind of just stuck because
15:53
Speaker 2: we went and did an X ray and his colon
15:55
Speaker 2: even though we've been doing inemas every other day. His
15:57
Speaker 2: coaling was completely full, it was enlarged, and it was
16:03
Speaker 2: like in a scary place position. So we went ahead
16:08
Speaker 2: with it, and then that is what was the catalyst
16:12
Speaker 2: for like where I am now in my life, Like
16:14
Speaker 2: that decision right then led me to now, which was
16:21
Speaker 2: basically six weeks of plus of the worst kind of
16:30
Speaker 2: torture you can imagine. He had an atypical reaction to
16:35
Speaker 2: the botox and it was we went from no group
16:39
Speaker 2: at all to constant, constant stooling for six weeks. I'm
16:46
Speaker 2: talking constant, so imagine what that does to your bottom.
16:53
Speaker 2: He had a like second degree the essentially like a
16:58
Speaker 2: second degree chemical burn because of the acid, and his
17:02
Speaker 2: butt was like in breakdown territory, like wound care emergency rooms,
17:09
Speaker 2: like trying everything under the sun that we could do
17:15
Speaker 2: to try to help protect his skin from this like
17:20
Speaker 2: constant constant stool. We were putting him in the tub
17:27
Speaker 2: to try to spray him off. Like there was no wiping,
17:30
Speaker 2: there was none of that. We tried, like even these
17:35
Speaker 2: like bandages. I have like two thanksful, I've got three
17:38
Speaker 2: nurses in our family, and so they were like here
17:40
Speaker 2: with us that we were they were giving us, getting
17:43
Speaker 2: us products they were we were trying troubleshooting every single thing.
17:47
Speaker 2: We tried, the all of the cream methods, the barrier sprays,
17:53
Speaker 2: the storm of powders, the we tried like a honey version.
17:58
Speaker 2: We tried. I mean, we spent at least one thousand
18:01
Speaker 2: dollars on just products to try because we would mix
18:07
Speaker 2: up this whole concoction of things and then you'd poop
18:09
Speaker 2: again and then you'd have to like wipe it all
18:11
Speaker 2: off again. And we kept being told to create like
18:14
Speaker 2: this barrier with the cream and then just wipe off
18:19
Speaker 2: the top part. And that was just like not a thing.
18:23
Speaker 2: That was not a thing. I don't know if other
18:25
Speaker 2: people have told you about.
18:26
Speaker 1: This, but no, no, this is this is the first.
18:29
Speaker 1: This is the first I've heard.
18:31
Speaker 2: Rash and like breakdown in this because I was I
18:35
Speaker 2: was down like rabbit holes because I'm like I can
18:37
Speaker 2: figure this out, I can do this. I'm a troubleshooter,
18:40
Speaker 2: I'm nerd, a virgin as hell, so like I will
18:43
Speaker 2: go down whatever rabbit hole I have to go down.
18:47
Speaker 2: Came a new special interest, like how do I fix this?
18:51
Speaker 2: And it turns out I couldn't. I literally couldn't, and
18:55
Speaker 2: it was the most devastating thing to figure out that,
19:00
Speaker 2: like we just have to wait this out, we have
19:03
Speaker 2: to wait it out, and I mean it was it
19:07
Speaker 2: was horrific. I had a job and I mentioned in
19:11
Speaker 2: Texas for almost a decade that I had to quit
19:15
Speaker 2: and starting out like we finally got medicaid and CAPSI
19:20
Speaker 2: for him, and my nervous systems collapsed. Like I just couldn't.
19:25
Speaker 2: I couldn't keep up with the like the just constant stress.
19:31
Speaker 2: And thankfully my husband owns his business too, so he
19:33
Speaker 2: was able to be here a lot more. But I
19:35
Speaker 2: was trying to get help and there was no help
19:38
Speaker 2: to be given. There's like to try to get, to
19:43
Speaker 2: try to get like a nurse or somebody to come in,
19:45
Speaker 2: Like you would not believe the hoops that we have
19:48
Speaker 2: to jump through here in America to get something like
19:51
Speaker 2: that to happen, and it I couldn't get I couldn't
19:53
Speaker 2: make it work. And so yeah, that's just I mean,
19:58
Speaker 2: it was just there's people I've seen on Facebook and
20:05
Speaker 2: on different places that have had these experiences and I
20:09
Speaker 2: would not wish that on anybody, but I saw those
20:13
Speaker 2: and I thought, oh God, I hope we never go
20:15
Speaker 2: through that, and then we did. And so now when
20:21
Speaker 2: he when now, when he has any kind of irritation
20:25
Speaker 2: or any kind of anything, I'm my husband and I
20:29
Speaker 2: are like, we got this, like we go see the
20:33
Speaker 2: worst of doors and you know, we and we came
20:37
Speaker 2: out of it, and he came out of it, and
20:40
Speaker 2: like the whole time, like the only the only thing
20:42
Speaker 2: Mile is just like such a light that he just
20:47
Speaker 2: like if he were if he were as miserable as
20:50
Speaker 2: we were all the time, then it would have been horrific.
20:56
Speaker 2: But he was just upset and bad. When we had
20:58
Speaker 2: to be changing him, which was a lot. I'm talking
21:03
Speaker 2: like probably twenty divers a day wow or more, and
21:10
Speaker 2: it would be like every twenty minutes we would get
21:12
Speaker 2: him changed and then he would poop agin like while
21:15
Speaker 2: he was on the changing cable. So we just go
21:17
Speaker 2: right back to the bath because you couldn't. We had
21:20
Speaker 2: these like spray saline type things, and I just like,
21:27
Speaker 2: wound care is so hard, and you know, I like
21:31
Speaker 2: that I was down that whole Like when you think
21:34
Speaker 2: of elderly people and nursing homes who have who are
21:39
Speaker 2: on bed, you know, or are bedbound and then they
21:43
Speaker 2: get these wounds and so that that's where we were,
21:46
Speaker 2: like we were in this place of like what do
21:49
Speaker 2: we do with breakdown? That's this bad that's constantly having
21:56
Speaker 2: something happened to it. So anyways, all of that to say,
22:02
Speaker 2: we made it through and it helped him a little
22:05
Speaker 2: bit be able to go somewhat. But we still do
22:09
Speaker 2: every other day enema's. We still we use the Novena
22:15
Speaker 2: irrigation system. I don't know if you're familiar with this
22:20
Speaker 2: or not, but we got approved for this and for
22:24
Speaker 2: CATSI because of what we went through, because I had
22:27
Speaker 2: tried to get CATSIE for years and CAPSI. I don't
22:31
Speaker 2: know if you're familiar, but and here it is for
22:34
Speaker 2: medically fragile children. You get Medicaid so you can have
22:39
Speaker 2: a caregiver come into your home and help you, or
22:44
Speaker 2: you can get paid as a caregiver if you end
22:46
Speaker 2: up having to quit your job like I did. And
22:50
Speaker 2: it's not enough, but it's something you know, and I
22:56
Speaker 2: can't have respite care. And we did get finally froode
23:00
Speaker 2: for this type of treatment, whereas we wouldn't have had
23:04
Speaker 2: that before. So yeah, we just we keep up with everything,
23:12
Speaker 2: his food, the way his stomach looks, how much gas
23:15
Speaker 2: he's passing, the supplements, the enemas, and we're just hoping
23:24
Speaker 2: at some point it's going to become easier for him.
23:27
Speaker 2: And I think once he does start to eat more
23:30
Speaker 2: whole foods and can have more formed stooled and that
23:35
Speaker 2: will be helpful. It won't we won't run into the
23:38
Speaker 2: irritation and the rash side of things as often that
23:43
Speaker 2: The other thing is like, he's super active. He's super active,
23:46
Speaker 2: and he's in school and they know all about this.
23:54
Speaker 2: But to have someone at school take care of his bottom,
23:58
Speaker 2: the way that I would is is it is easy.
24:03
Speaker 2: And so he's running around the playground. Then he comes
24:06
Speaker 2: home and I check his eyebround. I'm like, ah, you
24:09
Speaker 2: had poop in there, and they didn't know because the
24:11
Speaker 2: whole sneering thing people don't like think about.
24:14
Speaker 1: No, And I guess also at the moment, he's not
24:18
Speaker 1: necessarily going to communicate to them.
24:20
Speaker 2: No, no, And that's that's the other thing. And to
24:25
Speaker 2: finish my thought about him being miserable, he just when
24:29
Speaker 2: we were changing his diberary, he was mad, but the
24:31
Speaker 2: rest of the time he was happy. Go lucky his
24:35
Speaker 2: regular self, and that like saved our lives, I think,
24:39
Speaker 2: like truly. But now he's I mean, he's just like
24:43
Speaker 2: he's just wide open, the wildest child and he but
24:49
Speaker 2: he doesn't have that ability like to say, hey, i've
24:53
Speaker 2: food and I need some help getting this changed. We're
24:57
Speaker 2: working on getting there. It's like an ip goal bars.
25:01
Speaker 2: But that's that's another part of the dual diagnosis that
25:05
Speaker 2: makes it really difficult. And he can't tell us necessarily
25:11
Speaker 2: when he's hurting because of gas, or if he's hurting
25:14
Speaker 2: because he hurt his finger, or if he hurt you know,
25:17
Speaker 2: like I have to. I have to like constantly tune
25:22
Speaker 2: in to him. And yeah, it's just it's something else.
25:31
Speaker 1: It is a mind field, and certainly sounds.
25:35
Speaker 2: Like he's a mindfield. That's a perfect way to put it.
25:38
Speaker 3: And you.
25:40
Speaker 1: In some ways, I guess there are certain parts that
25:44
Speaker 1: you know what to expect and can prepare for, and
25:48
Speaker 1: there are other parts you just can't. Yeah, And I
25:52
Speaker 1: think that sounds to me like possibly the most difficult
25:58
Speaker 1: thing is the things that you you just can't quite
26:01
Speaker 1: prepare for.
26:04
Speaker 2: Yeah. We were taken not exactly by surprise, because I
26:12
Speaker 2: had read so much about it. I knew this was
26:14
Speaker 2: a possibility, and I had prepared as much as I
26:18
Speaker 2: could based off of what other parents have done. But
26:21
Speaker 2: I felt so betrayed by the specialists because they did
26:26
Speaker 2: not send us home and could not help us throughout
26:32
Speaker 2: at in any point. It was just like, oh, try this,
26:35
Speaker 2: and like I've tried it. Well, I'm sorry. I mean,
26:39
Speaker 2: it was just and take it into the emergency room.
26:41
Speaker 2: I literally had a doctor say to me, well, you
26:43
Speaker 2: know more than I do, and I'm like, holy shit, okay,
26:48
Speaker 2: because that's what a parent wants to hear when I'm
26:51
Speaker 2: in the emergency room with my child, that I know
26:55
Speaker 2: more than he does. So from all of this, I
27:00
Speaker 2: was like, okay, well, I basically feel I feel like
27:05
Speaker 2: I have all this information about down syndrome and about hirshbruns,
27:10
Speaker 2: but they live in silos. So when I actually go
27:12
Speaker 2: and see specialists or I see doctors, and they don't
27:17
Speaker 2: know enough about the two together. They don't know about
27:20
Speaker 2: enough about hirshrungs in general. Like, I need there to
27:24
Speaker 2: be something, something that people can go to, and something
27:28
Speaker 2: for parents and families like ours to go to and
27:31
Speaker 2: get this information. So I sat out one day during
27:35
Speaker 2: all of that, and I found the paper so I
27:39
Speaker 2: could show you. I was like, this is what we're
27:43
Speaker 2: gonna do.
27:45
Speaker 1: I wrote down, but for audio listeners, there's a lot
27:51
Speaker 1: of words there. Just trust me, there's a lot of words.
27:55
Speaker 2: I grouped it by what to expect from newly diagnosed
28:01
Speaker 2: down syndroom and Hirshprung's dual diagnosis, the challenges, the gut
28:04
Speaker 2: bring connection, the communication issues, low tone factors, what caregivers
28:11
Speaker 2: should know, future planning, all travel considerations. And then I
28:17
Speaker 2: wrote out all of the things for treatments, symptoms to
28:20
Speaker 2: look out for, RASH care resources and like about like
28:27
Speaker 2: for Dowson ERM and Hirshprung's community stories and finding your
28:31
Speaker 2: support team and like building a building a group of
28:34
Speaker 2: specialists that you can talk to and go in and go, Okay,
28:38
Speaker 2: this is where we're at. I need some help. And
28:40
Speaker 2: we've basically gotten to that point now, I'm thankful to say,
28:45
Speaker 2: which is a lot. But so I was just kind
28:48
Speaker 2: of looking one day and then I ran across Reach
28:52
Speaker 2: and I reached out to them. Yeah.
28:55
Speaker 1: I always say that I think I need to have
28:57
Speaker 1: another word rather than reached out, because you can't say
29:00
Speaker 1: you down to reach. It doesn't sound I know I.
29:03
Speaker 2: Think of all the time and I'm like, yeah, I
29:05
Speaker 2: need something else. But I reached out to them and
29:09
Speaker 2: I heard immediately back from Isabelle and Eric and they
29:13
Speaker 2: were like, we need to do this. Absolutely yes. And
29:18
Speaker 2: so I met with them and I showed them this
29:21
Speaker 2: stuff and they're like we need They're like, absolutely you can.
29:25
Speaker 2: You should have your own website if you want to
29:27
Speaker 2: do that, or you can work with us and we
29:30
Speaker 2: can put it on our website and it may be
29:33
Speaker 2: able to reach more people. And I was like, yes,
29:36
Speaker 2: let's do that. That'd be fantastic because God knows, I
29:39
Speaker 2: don't need another project to start. And so that's what
29:46
Speaker 2: started the whole ds HD micro site. And they were
29:52
Speaker 2: so fantastic to work with and you know, got to
29:56
Speaker 2: run all this information through their board and there's still
30:00
Speaker 2: more that we could add, but it's a fantastic start
30:06
Speaker 2: and it is a smaller population of people. But I
30:08
Speaker 2: feel like all the information that you find on hirshcrums
30:11
Speaker 2: is not going to necessarily benefit do diagnosis families like ours,
30:16
Speaker 2: and the party training issue and the you know, just
30:22
Speaker 2: the communication and then also understanding that kids with downsing
30:25
Speaker 2: ever have hypotonia, which is loma like relaxed muscles, and
30:31
Speaker 2: so it's not just I mean everything is relaxed, So
30:38
Speaker 2: it's just.
30:40
Speaker 1: I think that the idea of a sort of branch off,
30:45
Speaker 1: if anybody hasn't seen the Reach website and the down
30:48
Speaker 1: syndrome sort of tab that goes along with it, really
30:53
Speaker 1: really insightful. I have had a couple of people, some
30:56
Speaker 1: who've been on the podcast, some who haven't been on
30:58
Speaker 1: the podcast, who have dual diagnosis and have reached out
31:01
Speaker 1: to me and have said, you know, do you have
31:04
Speaker 1: any resources, do you know anything else about you know,
31:08
Speaker 1: dual diagnosis, down syndrome and Hirshprungs, And I always point
31:11
Speaker 1: them towards that site because I think there's there's not
31:15
Speaker 1: only obviously there's as we've talked about Milo's journey and story,
31:20
Speaker 1: but there's also some other really just interesting bits and
31:24
Speaker 1: pieces on there and some really good resources as well.
31:27
Speaker 1: So so if anybody is listening and whether you have
31:31
Speaker 1: dual diagnosis or diagnosis of Hirshprung's really good site just
31:35
Speaker 1: in general, but especially your your micro site I think
31:39
Speaker 1: is and it's it's very sort of cleanly presented. It's
31:42
Speaker 1: not sort of because you couldn't. As we've just seen
31:46
Speaker 1: with your your lovely bit of paper. You can have
31:49
Speaker 1: a lot of information and you can sort of pack
31:52
Speaker 1: a lot of information, but it is not it's not
31:55
Speaker 1: sort of stacked with three thousand words. It's got, it's
31:59
Speaker 1: very clean, it's very use a friendly. It's probably what
32:03
Speaker 1: what i'd give to that.
32:04
Speaker 2: I agree. Yeah, and Isabelle really had to like rain
32:07
Speaker 2: me in on that too, because I was like, okay,
32:09
Speaker 2: but we've got this me to talk about. But they
32:11
Speaker 2: knew because their son Adrian has down to Newman Hirsch
32:15
Speaker 2: Frands as well, so there and then she wrote the
32:18
Speaker 2: book and it was amazing. You know, they're just incredible
32:22
Speaker 2: people and the work that they've done with that organization
32:26
Speaker 2: is fantastic and I'm I'm so honored to be an
32:28
Speaker 2: ambactador for them.
32:31
Speaker 1: Yeah, sure they are. They are brilliant. And I don't
32:34
Speaker 1: know as well, sort of bouncing around a little bit,
32:36
Speaker 1: but you you have mentioned that there are some sort
32:39
Speaker 1: of tips and tricks you wanted to to share with
32:44
Speaker 1: other people, and I'm all all for that as well.
32:47
Speaker 1: I mean, every Facebook forum, every Instagram forum that I
32:51
Speaker 1: see is full of people saying have you tried this?
32:54
Speaker 1: Screams have you tried that? Have you tried this? And again,
32:59
Speaker 1: not every thing is gonna work for everybody, but I'll
33:04
Speaker 1: always encourage people to share. Look, I did this and
33:07
Speaker 1: it worked for me, you know, so yes, please feel
33:11
Speaker 1: free to share whatever you'd like.
33:14
Speaker 2: I'm happy to So I bought this from my love
33:19
Speaker 2: because I wanted to try to help, like explain to
33:22
Speaker 2: him about the colon. And so it's it's cute as
33:29
Speaker 2: it can be. But for the the first thing, and
33:33
Speaker 2: I'm I know a lot of Hirschworm's parents are gonna
33:35
Speaker 2: know this, but like, the belly massage is extremely important.
33:40
Speaker 2: That's one of the things that it's my go to
33:42
Speaker 2: when I know he's having a hard time with gas,
33:45
Speaker 2: when his stomach is distended, like he needs that extra
33:49
Speaker 2: massage help. And there's a technique that I do as
33:53
Speaker 2: well when I do the enemas that I'll tell you
33:55
Speaker 2: about and like feel free, Like I'm not a medical professional,
34:01
Speaker 2: but I am a very experienced mob that helped.
34:06
Speaker 1: So all right, I've already written the disclaimer, it's already
34:09
Speaker 1: out there, so we're all good byever you want to say.
34:14
Speaker 2: The I'm trying to figure out if I need to
34:16
Speaker 2: stand or what. But the way that you do a massage,
34:23
Speaker 2: if you're putting this here, I don't know the best
34:25
Speaker 2: way to do this here. I'm just going to sit down.
34:28
Speaker 2: It needs to be start on your if you were
34:32
Speaker 2: looking down at yourself for a self massage, let's say
34:37
Speaker 2: just for easy use, because depending on what you're looking at, yeah,
34:41
Speaker 2: it needs to be the the descending colon is on
34:46
Speaker 2: your left side. If you're looking down, you're signaled colon
34:50
Speaker 2: and your rectum. Okay, so your massage starts here, and
34:55
Speaker 2: so I just do like a round, you know, circular,
35:01
Speaker 2: and it starts there, and I spend a lot of
35:03
Speaker 2: time like on the sort of where the bladder is,
35:06
Speaker 2: but like where the colon comes down, because that's where
35:11
Speaker 2: a lot of the stool ends up kind of getting
35:14
Speaker 2: slightly impacted, and like you can have this sort of
35:17
Speaker 2: like bulge that comes out here where things are trying
35:19
Speaker 2: to push down but you can't quite get it out.
35:22
Speaker 2: So I spend a lot of time like you know,
35:24
Speaker 2: just not mushing, but like circular and pushing down and
35:29
Speaker 2: then you go over to the top and then you
35:33
Speaker 2: bring it down and there's there was like I love
35:36
Speaker 2: you type of thing that people talk about. So it's
35:39
Speaker 2: like I and then there's the L and then you
35:47
Speaker 2: and then you go all the way up and around.
35:50
Speaker 2: That's right.
35:50
Speaker 4: So I do this a lot, and when I get
35:54
Speaker 4: this here done and on me, just so you can
35:58
Speaker 4: sort of right, yeah, you're doing this number and you're
36:05
Speaker 4: coming around here.
36:09
Speaker 2: And up and over and like just in general, like
36:13
Speaker 2: this transition zone I believe it's called it. There tends
36:19
Speaker 2: to be this like juncture where it comes over here
36:21
Speaker 2: and then comes back down. There tends to be a
36:24
Speaker 2: lot of gas and get that can get trapped here.
36:28
Speaker 2: So I spend a lot of time here and kind
36:31
Speaker 2: of here, you know, like if you're thinking about it
36:34
Speaker 2: in terms of like motility, and you're thinking about it
36:37
Speaker 2: of like okay, well things are things are trying to
36:41
Speaker 2: move around in here, like where did they? Where does
36:43
Speaker 2: it need the help? And so I spend a lot
36:46
Speaker 2: of time like and I can tell I can feel
36:48
Speaker 2: and hear and go okay, that's where it is. And
36:51
Speaker 2: then I like just massage and just that stimulation will
36:55
Speaker 2: help a lot for an enema warm warming. This is crucial.
37:08
Speaker 2: Like we put water in the microwave for a minute,
37:13
Speaker 2: stick this down in there for a couple of minutes,
37:16
Speaker 2: making sure that is obviously not too hot, but making
37:20
Speaker 2: it warm. There's there's a sweet spot, there's a sweet
37:27
Speaker 2: spot where. But if it is like lukewarm, or if
37:30
Speaker 2: it's like if it's gotten a little bit cold, it's
37:32
Speaker 2: going to cost so much more. Cramping. Cramping is is
37:36
Speaker 2: is awful. It makes it hurt way much way worse
37:39
Speaker 2: than it needs to. And because gas is such a
37:43
Speaker 2: big deal for my loob and that distinction and like
37:47
Speaker 2: getting his gas out, we have kind of a technique
37:50
Speaker 2: that we use with these which has over time proved
37:54
Speaker 2: to be really helpful. So I'm going to show sort
37:56
Speaker 2: of how to do that. So he's down all right,
38:03
Speaker 2: and okay, So my husband helps with this too, because
38:09
Speaker 2: he he needs to be able to hold his legs
38:14
Speaker 2: back and not move a ton either. So I squeeze
38:19
Speaker 2: the water all the way up where there's not any bubbles,
38:22
Speaker 2: and when I've put it in, I am, let's see
38:27
Speaker 2: we're here now, Like as slow as possible. Slow is
38:33
Speaker 2: the way to go. So you just go like as
38:35
Speaker 2: slow as possible to put this in because forcing it
38:39
Speaker 2: and he's pushing bearing down. I just wait until he's
38:42
Speaker 2: like released a little bit, and then I'll push in
38:45
Speaker 2: a little bit more. This enema game for us has
38:49
Speaker 2: been We've had times where he's like screen crying because
38:54
Speaker 2: either it hurts or there's gas, or there's whatever the
38:58
Speaker 2: case may be. So doing this, because we do it
39:01
Speaker 2: so often, as like as intentionally as we can, is
39:07
Speaker 2: really important. And so once we're we have this in here,
39:12
Speaker 2: I squeezed this a little bit and then I let
39:15
Speaker 2: it out so that way he can push out some
39:19
Speaker 2: of his own gas into the actual enema. There won't
39:23
Speaker 2: be this space here. It will just be just the water, right,
39:27
Speaker 2: So once he pushes it out, it does look like this,
39:30
Speaker 2: but then I can squeeze it to the point where
39:33
Speaker 2: there's not like I'm not pushing the gas right back
39:36
Speaker 2: into him. I'm just getting the water. But that part
39:39
Speaker 2: is so important because if you think about it, this
39:43
Speaker 2: water is just kind of like going up and sitting
39:46
Speaker 2: right here, and he's laying down and it's got to
39:51
Speaker 2: push through whatever sool is here. But there's also gas
39:54
Speaker 2: that's up in here that's like just kind of trapped
39:57
Speaker 2: and trying to get out, and so As I'm doing this,
40:00
Speaker 2: I'm I'm doing kind of the reverse massage, so I'm
40:04
Speaker 2: pushing the sailing as far up as i can go
40:09
Speaker 2: because there is backed up things over here that needs
40:14
Speaker 2: the help. So I do a squishing massage like this,
40:21
Speaker 2: I do a pull fooling down, but then I'm pushing
40:25
Speaker 2: it right back up as well and into this little spot,
40:29
Speaker 2: and just doing that makes that sailing get up as
40:34
Speaker 2: further and that's what you want. You want it up
40:37
Speaker 2: as far as you can because if you don't do
40:39
Speaker 2: any of that, it's just gonna sit right here. And
40:41
Speaker 2: a lot of times if they if you don't spend
40:43
Speaker 2: that time, they're just gonna poop out water. It's just
40:46
Speaker 2: gonna be poop Not not every time, but like spending
40:50
Speaker 2: that extra time to like make sure it gets in
40:53
Speaker 2: there is really helpful.
40:55
Speaker 1: And that's on the just for those who are audio
40:59
Speaker 1: listening as well, that's on the left hand side of
41:00
Speaker 1: the You do the massage on the left hand side
41:03
Speaker 1: of the.
41:03
Speaker 2: Colon on the descending colon and the and the sigmoin
41:10
Speaker 2: though the very lowest part of your colony, and just
41:15
Speaker 2: trying to get the water pushed off as much as
41:17
Speaker 2: you can too. And then then once he's off the table,
41:22
Speaker 2: he's like he's he's such a champion, Like he's like,
41:25
Speaker 2: I ad this, I know what I'm doing. He will
41:28
Speaker 2: go and he'll get in the squat position, he'll lean
41:31
Speaker 2: up against something. We have a yoga ball that he
41:34
Speaker 2: would like get on, and we do this kind of number.
41:38
Speaker 2: I would like to note though, if if at any
41:41
Speaker 2: point they're having a super hard time pushing this out.
41:45
Speaker 2: What has helped for us. We have these like chuck pads,
41:48
Speaker 2: you know, like the pads that dogs can pee on.
41:52
Speaker 2: We get twos and I will put one in my
41:54
Speaker 2: lap and I'll sit Indian style and or Chris cross
41:59
Speaker 2: apples to sit him in my lap like that, and
42:04
Speaker 2: just having his knees up and being in that sort
42:08
Speaker 2: of leverage position, I can hold his knees and also
42:12
Speaker 2: sort of like rock and as I'm rocking, it helps
42:16
Speaker 2: to kind of like loosen things up enough where he
42:19
Speaker 2: can push it out. And sometimes like if we're in
42:23
Speaker 2: a hairy situation where it's where it's really difficult, I mean,
42:27
Speaker 2: I'm like bear hugging him and he's having to push
42:31
Speaker 2: and bear against me with these legs because it he's
42:37
Speaker 2: having that heart of a time, and of course we
42:39
Speaker 2: don't want that, but that's sometimes our reality. Another option
42:44
Speaker 2: is to lay on the left hand side and pull
42:46
Speaker 2: up the right leg. And when I'm doing that, because
42:50
Speaker 2: he's in this position and the leg is pushing up
42:55
Speaker 2: against the ascending and pushing here, I'm holding his legs
43:00
Speaker 2: and I'm massaging at the same time and trying to
43:04
Speaker 2: help him get that out, because sometimes it's just hard,
43:08
Speaker 2: like depending on what he's eaten, you know, depending on
43:11
Speaker 2: like whatever the case may be. Sometimes it's just hard,
43:15
Speaker 2: and sometimes he screamed through the whole thing and it
43:18
Speaker 2: is awful, Like you know, we do this everything every
43:24
Speaker 2: other night, and we usually are just like, yeah, it's
43:28
Speaker 2: a routine. This went well, Like everything looked good, Like
43:31
Speaker 2: I am I am like on point, I'm like what
43:34
Speaker 2: did it look like? What did it smell? Like? What's
43:36
Speaker 2: the textureallytic? All those things like poop is like like
43:41
Speaker 2: diagnostic for me at this point, you know, it's just
43:43
Speaker 2: kind of like, Okay, this looks good. We're good, and
43:47
Speaker 2: but sometimes it's not like that. Sometimes it's really hard,
43:51
Speaker 2: and sometimes he cries a lot, and sometimes it's just
43:54
Speaker 2: you know, me and my husband are just hugging each
43:56
Speaker 2: other like, oh my god, that was terrific. But he
43:59
Speaker 2: got it out. And we've been in positions before where
44:02
Speaker 2: he couldn't get it out and then he have to
44:04
Speaker 2: do the anal irrigation. And that's where this guy comes in.
44:10
Speaker 2: And it is a pressurized it's a pressurized irrigation system.
44:18
Speaker 2: These tubes hook in too. Here. It works with your
44:22
Speaker 2: smartphone and you put in your gi doctor will tell
44:28
Speaker 2: you how much water. But the tube will be connected
44:31
Speaker 2: to this and also to that Niavena mart Bart and
44:37
Speaker 2: there's two different tips. This obviously will be much easier
44:42
Speaker 2: to watch on YouTube. But there is a cone option
44:48
Speaker 2: and then there is a balloon catheter option. This scared
44:53
Speaker 2: us to death when we were We were taught twice
44:59
Speaker 2: because we were terrified to do this because it's pressurized
45:03
Speaker 2: and because you blow up a balloon and because there
45:06
Speaker 2: is a potential of perforation, and that scared me to death.
45:12
Speaker 2: So we switched to the cone because it was we
45:16
Speaker 2: didn't have to worry about the balloon. And you know,
45:20
Speaker 2: we may at some point be in secostomy territory. We
45:24
Speaker 2: may at some point be in a bag territory. But
45:27
Speaker 2: right now everything is bottom up and he's over it.
45:33
Speaker 2: He's tired of it. It is it's not something he
45:37
Speaker 2: wants to do. But my husband always reminds me, he's like,
45:40
Speaker 2: this is his this is his normal, this isn't It's
45:44
Speaker 2: never been anything other than this. This is what he knows.
45:48
Speaker 2: And while he doesn't like it, once it's done, he's
45:51
Speaker 2: totally over it, totally over it and back to back
45:57
Speaker 2: of business. But it's sad because you know, I don't
46:01
Speaker 2: want him to have to go through this all the time.
46:04
Speaker 2: And we say, okay, it's time to get your poopy
46:06
Speaker 2: out and he goes and we're like he wants to
46:10
Speaker 2: go to He's like, okay, well can I take a
46:12
Speaker 2: nap instead or can I go to because we a
46:15
Speaker 2: lot of times do it at night. And he's like, no,
46:17
Speaker 2: I'm just tired. I'm so tired. I can't do that.
46:20
Speaker 2: I don't really doing this right now. Yeah, And it's
46:24
Speaker 2: it's awful, it's awful, But at the same time, why
46:30
Speaker 2: spend the extra energy being upset about something that you
46:38
Speaker 2: that you can't change right now? You know, like our
46:41
Speaker 2: mindset is really important, because sure I could I could
46:46
Speaker 2: be super upset that this is our life. You know
46:49
Speaker 2: that pop is my life. But there's there's so much good.
46:56
Speaker 2: There's so much that it doesn't take away from us.
47:00
Speaker 2: And I feel like I can help people. I feel
47:03
Speaker 2: like I you know, I can get I'm in a
47:04
Speaker 2: position now that I wish I knew this when I
47:09
Speaker 2: was you know, when I had an infant, when I
47:12
Speaker 2: had a toddler, when he was screaming and I didn't
47:16
Speaker 2: know what. And just to tidbit, everybody, if if they
47:21
Speaker 2: have a fever, if they feel sick, if they're fussy,
47:24
Speaker 2: if they're whatever, do an enema. If you have hersh runs,
47:27
Speaker 2: do an anema. It's it is that. Nine times out
47:31
Speaker 2: of ten it is that. And and if it's not that,
47:36
Speaker 2: then you can you've already rolled it out and they're
47:38
Speaker 2: cleared out and you don't have to worry about it.
47:41
Speaker 2: But you know, like just you have to. You have
47:46
Speaker 2: to pay attention to so many different things when you
47:49
Speaker 2: have the dual diagnosis, and yeah, it's just.
47:55
Speaker 1: Yeah, definitely differently. But I just I just want to
47:59
Speaker 1: say thank you for that, because I think there will
48:03
Speaker 1: be quite a few people that take a lot away
48:05
Speaker 1: from that. And and like you said, you've described it
48:10
Speaker 1: really really well, but might well be easier to see
48:15
Speaker 1: on YouTube's or if your listeners. So if you've just
48:17
Speaker 1: finished listening to this and you think, actually I've heard it,
48:22
Speaker 1: but actually I'll probably want to just see how it works,
48:25
Speaker 1: please check out the YouTube channel as well, because you've
48:29
Speaker 1: both demonstrated and explained it really really well. But some
48:34
Speaker 1: things are a visual thing.
48:37
Speaker 2: Yeah, some things really are. There was one other thing
48:40
Speaker 2: I was going to tell you about was rash here.
48:43
Speaker 2: I don't know if we have time for that, but
48:45
Speaker 2: I can send information if you want to just link
48:49
Speaker 2: to it.
48:49
Speaker 1: Absolutely, I will link to that. I will link to that, yes,
48:53
Speaker 1: so please, I'll link that on Facebook, Instagram, tiktop all
48:59
Speaker 1: all bits and peace is but yes, thank you, thank
49:02
Speaker 1: you ever so much for coming on, sharing Milo's story
49:06
Speaker 1: and obviously sharing the hints and tips as well. And
49:10
Speaker 1: and it goes without saying, but I'll say it anyway.
49:13
Speaker 1: I wish you, your husband and and Milo all the
49:17
Speaker 1: very very best for the future.
49:19
Speaker 2: Thank you, thank you so much, and thank you for
49:21
Speaker 2: having me on. I really appreciate it. I'm so excited
49:23
Speaker 2: that you're doing this because it's just, you know, people.
49:26
Speaker 1: Need to know it's my pleasure, but doesn't doesn't work
49:30
Speaker 1: without great guests.
49:31
Speaker 2: I'm so glad that that you are living your life
49:35
Speaker 2: and showing other people that it can be done. And
49:38
Speaker 2: you know you didn't let it stop you from playing
49:40
Speaker 2: cricket and doing all the things, so that's awesome. Thank
49:45
Speaker 2: you so much, thank you.
49:50
Speaker 1: Thank you for listening to the podcast. Find us on Instagram,
49:54
Speaker 1: Tom's Underscore, Hirshbroung's Underscore podcast. Listen to previous episodes on
49:59
Speaker 1: Spotify searching Tom's Hirsch Runs podcast