Hey everyone, it’s Emma Cooksey here and I'm your host.
So I signed a little bit Gravely from talking for two whole days and I just got back from my trip to Washington d.c.
So I thought I'd tell you guys a little bit about it before we go on to today's and guests as so I was in Washington DC for two.
Ace the first day was an event called The Sleep advocacy Forum, which is run by project sleep.
And so, for those of you who haven't listened before, I am on the board of directors for a nonprofit organization called project sleep who are all about raising awareness of sleep health and sleep disorders.
And it's run by a Dynamo woman called you leave.
Like our Our who's one of my really close friends and I, which is really nice.
So Julie essentially saw the need to bring together researchers, patient, organizations and professional organizations representing, you know, doctors and clinicians scientists like people researching and Sleep Disorders research.
So, and also Patient Advocates, last but not least.
Ever since that's me, All joined together on Monday and Washington DC and it was really great day.
We heard a lot of really great presentations from people.
You know, talking about some of the groups that fund research were talking about what they're doing.
I just find it really super hopeful.
I got to share my story and on a patient panel which was really well, received, we got to share, why this stuff so Important to us and certainly from my own perspective like I just think we need to really reduce the delays to diagnosis for people with Sleep Disorders.
So that was kind of a lot of what I was focusing on.
It's just talking about, you know, I was thinking of all the people on the podcast I've interviewed at this point and so many of us have gone you know 10 years before we got a diagnosis for this.
So yeah, it just was a really great day and and I met some really interesting Same fun people and lots of future podcast gasps.
So that's really a great thing to.
So we're seeing some good funding for Sleep Disorders research but we want it to be there in Washington to really go and meet with legislators and you know really encourage them.
It's not over until they put the final, you know.
They sign off on the money actually going Sleep, Disorders, research.
So So even though we like the proposals they've made and for how much money is going to go into that, we want to be there in person to really tell the legislators how important that is to us, that they continue to fund, sleep surgery, search.
So day, two was super exciting.
I couldn't decide whether everybody else follows is as exciting as I did, but I think is partly being a newer American citizen.
We the Senators actually from our from the states that I was The same people from they were all in their own, you know, as States campaigning because it's the midterms and the same with the congressman.
But we were getting to meet with their staff and actually their staff, or the ones advising them, you know, on all these issues.
So, I just wanted to say a really big shout out to Senator Rubio's staff and also congressman John Rutherford and they're both, that's my congressman and my son.
So, and they took time to really listen to what we had to say.
And I really appreciate that, and one of the things I think is easy to be cynical about politics, but one of the things I loved about this was and the law of what we're saying it.
You know, there's nothing partisan about it, right?
Like we just were explaining like hi.
This is a fact in so many people's lives and we can do a lot to make people's lives better.
And so, obviously that takes Money and research.
And so the one of the things though, one of my big takeaways was, I don't think I ever thought before.
But the CDC isn't really doing putting money towards like raising public awareness of sleep disorders and I really think they should be.
And so we were kind of talking amongst ourselves about how you know the big campaigns they've done for stopping smoking and and The dangers of smoking and all this kind of stuff.
And that I feel like we could really use a really big CDC push to talk about sleep disorders and you know, like reducing drowsy driving and all those kind of things come from it.
Anyway, it's been a really, really interesting couple of days and and thanks again to Julie fly gar for all of her hard work.
Putting it together.
So, on to today's guests.
So I have multiple guest today.
I was joined by Jeff and Katia Krause and their son.
Nate Nate was born overseas in 2007 was trisomy 21 or commonly known as Diane syndrome.
He's the youngest of four siblings, they returned to Jeff's home in the u.s. to seek medical advice specific to Nathan and a better understanding of down syndrome, one issue they weren't Apprised of was higher kids, born with Down Syndrome, due to low muscle tone have Airway susceptible to collapse and as a result, developing sleep apnea.
So they're going to speak all about their journey and getting a sleep study and CPAP treatment for Nate.
And so now that Nene is 15.
The family felt they have a good amount of experience to share with other families who are going through this.
So here is my car.
Station with Jeff and cassia Christ.
So listen, Jeff cassia and Nathan.
Thank you so much for joining me.
It was a pleasure to join.
You want to just tell us a bit about where you are and the makeup of your family.
So we're in Bethlehem PA.
Hello near Philadelphia and we have six people in our family.
Nathan is the youngest he's 15.
And he has two older sisters and an older brother, too.
They're all increasing college Years.
Okay, got it and so Nathan's the youngest.
Do you want to talk me through a little bit about your story and when Nathan was born, and how all that?
And that's really something that caught my eye with your podcast, as opposed to some others about sleep.
Apnea is the stories part because at this, I think the stories are really withdraw interest.
So we were living in Pakistan, when Nathan was born and it was a total surprise.
No preliminary diagnosis, no testing was done. and we had no knowledge experience of any kind about Down syndrome or any of the attendant diagnosis that come along with it like Osa and basically it causes to have to leave, I was in the middle of doing a master's degree there, and overwhelm with, you know, work issues studies and we had no idea what to Do what we would be up against and we could even find any anything much in those terms of therapy or medical knowledge.
Much less everyday person.
Just to clarify.
So, during Kathy is pregnancy, there weren't?
Sometimes there's testing and things, but but that wasn't your case.
Like you until birth.
You didn't know about the dinosaur andram, we did.
We thought that her gin doctor.
Do this in.
Tell us and we don't need to sell all speculation where leagues that was never confirmed.
Yeah, but none of the testing, we didn't expect it.
We didn't think it was a chance of it.
Well, may I interrupt with that when I was pregnant, they offer me to have the, the test done, right?
Probably isn't Issa.
So I think yes they are missing teeth is but I was pretty advanced in the pregnancy and besides that I said it doesn't matter to me what the result is going to be so I chose know.
To have the darkest and yeah, and what was your take cassia?
Were you really surprised definite?
I really wasn't even when he was born.
The doctor suspected.
I mean, he told she, it wasn't, it was a female, dog, a male doctor.
Sorry, she said, I mean, he said, That he suspected that Nathan had Down syndrome, and I just wasn't denial.
And I told my husband, he never seen my babies before when they are born because baby normally are kind of like swollen eyes and yeah.
So I said, he never saw any of my other babies when they were little.
So, Yeah it was it was pretty shocking for me and as I said before I was in denial until we have the result of the stereo typing test.
Yep and I had to you know accepted it took me a long time and it is a process that because I think that I was mainly scared because we didn't know anything about Down syndrome.
And how to deal with a child, you know, with this condition?
Yeah, tell me about a little bit about how, like, I think I know the answer to this, but was there any talk like right, when Nathan was born about low tone of like the muscles in his throat or or a potential Airway problem or that you needed to look out for sleep apnea or did that come later?
Yeah, it was born in 2007.
And even more, he came back to the states.
In the same year, there was no attention giving it all to that.
And it came up for the first time in its kind of a conference, a few years later, okay?
And medical breathing issues in the first year of life and took me to the ER and when an ambulance and they didn't pick up under, they didn't tell us anything about it.
Yeah, I think that's what's really surprising to me.
Because I think that we know what this point that down, syndrome caught, you know, like can cause low tone.
And one of the things that often runs along with this sleep apnea and I'm surprised that doctors are not looking for this a lot earlier and children.
It seemed like it was just an emerging Attention medical issue that yeah.
Back in the early 2000s.
Yeah, yeah, I think so too.
I mean, I think even now like we're only just starting to realize that this is an issue.
You said, you learned of it as as being a potential problem at a conference.
So it wasn't so much that you notice something about, Nathan sleep, it was Or that you learned about sleep.
Apnea from was at a medical conference from doctors lecturing.
There's any Down syndrome society that held conferences, this is going so far back that I don't know if it was there that we heard about it.
Yeah, we heard about it from an ENT that he saw for, like, tubes ear tubes.
Maybe and he might have drawn our attention to that, or somehow we got linked into doing a sleep study.
To test them for a penny.
I think that was an awareness that came from the Down Syndrome Society, okay?
And so what age was Nathan at that point?
He was probably one year old.
Okay, so as well, he actually my, my recollection of how we came besides that conference that Jeff went to and he learn about sleep apnea.
I noticed that he when he was about 2 or 3 years old, I noticed that he was snoring like an old man, you know, like yes.
I mentioned that to Jeff and I said it is a strange, but he snores like really like like an old person.
And so I said, they must be something going on that we don't know.
And that's, that was kind of like one of the first signs that I noticed.
Another sign was that he was Tired all the time and very lethargic in the mornings after a full night's sleep.
And he's you know we were like why is he so tired?
He's asleep in so many hours every night.
So that was also a sign that I, you know, that I notice is of This episode of sleep, apnea stories is sponsored by better help.
How well, we look after our mind, really affects how we experience.
Life therapy has been so helpful to me since I was diagnosed with sleep apnea, it helped me to work through the feelings.
I had about going undiagnosed for so long.
It also helped me to adjust to living with a chronic condition.
One of the best things about starting.
My podcast has been realizing I'm not alone and coping with mental health issues, along with sleep apnea.
Speaking to a professional therapist has helped me enormously to manage my anxiety and depression That's your help is online therapy and it's much more affordable than in-person sessions.
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And so you had to sleep study and what tell me about the actual High, the sleep study went, did you have to go to a land or was it in your house?
Or how did that work?
It was a sleep study center in near her the house and Give me the hook them all up in a bed.
I had to sit in a chair all night in the same room and really uncomfortable but it It confirmed that he had a, I think I think I popped index something like between 5 and 10, okay, what should a child is a lot?
Like I think I had a pediatric and sleep specialist all and she was talking about how you know, like something that looks like not a very high chai and in an adult is considered really severe and children.
So what was there?
What was your Fault.
When that happened were you surprised, were you relieved?
Just like it was one of many other medical issues that we were encountering and finding to have to cope with and therapy and doctor visits.
So, is this one more thing?
And it didn't seem like a super big deal, but I think it was a little intimidating when we found that the way to treat it was with a CPAP machine.
Yeah and I was going to take Julie went to saying that the he would need a CPAP there wasn't any talk of anything else because of that hie What was the support like?
I mean, I just know from adults, it can be really challenging to get used to a CPAP machine and I know people who have worked through that was children but children with Down Syndrome obviously have, you know, other things going on where that could be really challenging.
So how did you find it in the beginning?
Well, I will say this that Nathan took to it like a pro.
He didn't have any holdups, any hitch, he didn't try to take it off, we don't have any struggle with that.
He's very compliant and as far as medical support, I'd say that was really lacking the this like the sleep study center, dismissed us with the results and then we never saw them again.
Ya never had, they have one follow-up, right?
But they say so here the year.
The place where I had the most dialogue with say.
When was that the DME provider?
Where we got from the she.
And I had to tell me into like, there's so many technical technical difficulties.
Yeah, come up along the way and this person was like a, maybe a respiratory therapist, but they knew the machine.
And then they linked linked us into another doctor.
Who is highly reputed for being very detailed folks oriented.
So we started to see him so that's good.
Yeah, so as far as like, you know, getting the pressure, right, and the right man, Asking all of that.
Well, we went with the sleep study recommended for pressure.
The in question that the mask itself, probably whatever the DME provider had, we didn't have a lot of choices, right?
We didn't know what there was but as the years went, by became more and more aware.
That this, this pressure that the hospital diagnosis may not be the point through a pressure.
There's other factors and there's a lot of Machines not asks pushing us out there.
Yeah I was nice and feeling like was he feeling less lethargic and better during the day or what did you notice about that?
We did not is a difference and Improvement in his energy level.
He wasn't as lethargic as you know as he was when we not as it.
So I would say that yes it didn't.
Prove his his energy level I will say, yeah.
Having gone through like this journey with Nathan.
What what's your advice to other families?
Do you have anything that you've been through the hard way that you can share with other families?
That might be going through the same thing?
Yeah, I have a lot of points here.
Yeah, you did.
I mean, this is like, And things here that I never would have found, crucial knowledge.
Yeah, one was to have a sleep study done as early as possible if the rule out Osa and then after that, to get it drug induced sleep endoscopy to see exactly what's going on in there and gets.
We look at the anatomy of it.
So did Nathan have a dice procedure or or note that no, he never did.
Okay, but that's what you never hear me.
Heard of it.
Track ENT came into the practice.
Another is that I didn't know this, but I thought it had no tonsillectomy would completely resolved.
It no questions asked.
And we only later learn perhaps after we didn't use the CPAP machines for a while.
That this didn't necessarily eliminate Osa, wasn't it as easy as that.
Yeah, so we took him back and then I also didn't know that the adenoids can grow back, right?
Didn't they have the, the tonsillectomy done?
So how old was he with with that?
When that happens, three years old.
Okay, so we had that at three and then was he already on CPAP when he had that?
He'd been on it for at least a year and year and a half.
And did you notice an improvement and laughter?
He had that procedure done or no, not really no.
Yeah, I think some years down the line we became aware of the his mask.
What do wasn't well fitted to his Is other times the mask was the wrong size for his face.
This came through visits to hospitals, that had like, special specialty that dealt with Osa and yeah, it's about therapy.
So I'd say shop for a mask, look around, well know, all the options.
Yeah, make sure that it fits will.
The states that were never explained to us Nathan like as a child with Down Syndrome, he's minimally verbal.
So he couldn't really tell us, right?
This is I'm having a problem.
I don't like how this feels.
Yes this I feel this the kid never really you have to pay a huge amount of observation sleeping in the same room in our case putting on an infrared camera to see when he's getting up and what's going on and just a thorough study, Dialogue with all the Specialists and cross discussion between ENT pulmonology sleep.
You know, gastroenterology they're all involved in everybody's perspective in input parent has to put the time in to digest it all process it.
Go back with more questions.
Everybody gets a little piece of the picture that was.
And a lot of ways like, especially with children that have special needs and have multiple Specialists.
I think that the lack of, you know, collaboration of all of those different Specialists can be a real problem.
Absolutely, especially when it's like at different hospitals.
You find this doctor at this hospital is recommended, but somebody else has a different one and they're not in contact their record in those days now they are sharing records.
I seems so basic right but really like it would make all the difference.
I'm in my personal experience was a lot of observation you you really because especially if your child is no verbal.
And they cannot explain to you what?
Is going on?
Yeah, you ask the parents, you have to be their Advocate and you have to use be the person that is speaking for them and in a way, you know.
And so just to pay attention to because I feel that it's if we wouldn't notice that he was snoring like an old man, then we will be like maybe we wouldn't know that he had a sleep apnea in until Now yes, my experiences with all of the issues that we deal with Nathan everything is started by us or serving something in him that the doctor cannot see in him when they see him for 15-20 minutes.
You know that we live with him every day. 24/7.
So we know him best and anybody else?
Yeah, of course you do.
So that's your list.
Well, in one case, we I thought because of all the problems you had with the he has he's a full face.
Matt cushion and the hose is like jutting out and pushes his head side with all because of those issues.
And I think some some sliding of the mask off of his mouth sometimes or down from his hair was lit.
Popping out the bottom like I try to when that that the air comes through the Up on the top of the head.
And he absolutely refused that.
So he something was wrong with it, but he never could tell me what it was so frustrating.
Could it just be that with Kisses Down syndrome or can be very stubborn and they liked the way they are used to.
It is the way the only though except yeah so he will change.
You know, you have a hose support.
Yeah, I got that from listening to your podcast about it because honestly, like it's such a little thing, but that can make such a huge difference just having that suspenders so that you don't have all the weight pulling on the mask.
I never even knew about that until I listened to ya.
So we got to you were saying that you would advise other families to really look at different masks and, you know, figured that part of it.
I what what else is on your list of things to tell their families?
There's only one of the main things is could be that, you know, controversial, but that the measurements at this, at the sleep study, I wouldn't just go buy them and the Someone is after so many sleep studies, he's had a dozen of them.
You can see he's how hard it is to hook, the child up, how hard is to put all those wire, and then they have to sleep on their back with lights on in the room and people walking in and out.
That's not natural.
Condition is not.
So I didn't find this out to leader with the machine.
The automatic automatic Pap machine.
Yeah, Auto pop, or a Pap that that gave us a much different perspective.
And that's really what we're going by with his pressure.
You through the set to receive hap setting where it was a constant pressure and it was just what they told you after the sleep study.
So anything else you guys would like to share?
What do you think needs to change?
What do you think could be better?
Well, this is one advantage of I think lab sleep studies.
Is that they do?
I think measure the level of sleep.
They monitor other other physiological features.
And and with the auto Pap, you don't really.
And even with the CPAP in general, I don't know how much REM sleep.
He's getting right and how much of a difference it would make if he had more restorative sleep.
And there's some kind of a way to just measure that at home, would be great if somebody come up with that.
Yeah, so, I mean, the thing with things that you can use at home right now like different wearables, like the type She's getting better but it's not and of the level of, you know, like the sleep lab.
So well listen, this has been a super helpful and I know that there's families out there going through this that are going to really benefit just from hearing your experience.
So I really, really hope you join me.
Yeah, sure, no problem.
Thanks for inviting us Fatiha.
And Nate thank you for sending your welcome.