[00:00:00.520] Dori Durbin

Hello and welcome to the Power of Kids’ Books, where we believe books are catalyst to inspire and empower change. I'm your host, Dori Durbin. What do parents do when trying to navigate helping their child with a lifelong and painful chronic disease? Today's guest is a triple board certified physician who specializes in Pediatric Rheumatology and integrative medicine. She was diagnosed

with Rheumatoid Arthritis herself after becoming a Rheumatologist. Welcome, Saimoon Singla.

[00:00:34.770] Saimun Singla
Thank you, Dori.

[00:00:36.680] Dori Dubrin
I am so grateful for your time today. 

[00:00:39.800] Saimun Singla
Well, first of all, thank you for having me. I am a board certified Pediatric Rheumatologist. So that means first I did my general Pediatrics training, and then I specialized in Pediatric Rheumatology, which is autoimmune diseases or inflammatory conditions in children. And the most common condition that we see is Juvenile Arthritis. You get the diagnosis of Rheumatoid Arthritis if you're 16 and above. So I see both Juvenile Arthritis and Rheumatoid Arthritis, pretty much anything up until 18, 19, 20, sometimes years of age. So I went into Rheumatology because I loved immunology. I liked the long term relationships with families that I would be constantly seeing them every three months or so, sometimes more frequently based on the condition. I didn't like the ER setting where here you're fixed, don't come back, hopefully. I didn't like that mindset. Rheumatology for me hit every single checklist.

Then I went into pediatric Rheumatology, finished my training, what we call fellowship. Then I became an attending, which is a been a Rheumatologist, basically. I started practicing in a large children's hospital. A bout two years in is when I started to get symptoms of joint pain in my fingers, fatigue, and I didn't know what any of that was. I know I'm a Rheumatologist and it's a little bit embarrassing to not link the two.

But in all honesty, I thought it was motherhood. I had just become a mom to my second child. I thought it was becoming a new attending, just balancing all these new things. And then I had the Rheumatologist

appointment that I hesitantly showed up to. And they were like, You fit the bill for Rheumatoid Arthritis and it was so eye opening because I was in denial for, I'm not going to lie, I was in denial for probably a good six months into the diagnosis. I was like, sure, I'll try this and it's all going to go away.

And you go in with that mindset of like, yeah, I'm going to take the meds that you said and everything's going to go away and it's going to be fine. And so I have two parts of my life going on. I'm the patient at this point trying to navigate these symptoms and this so called diagnosis. And then I'm trying to navigate being a Rheumatologist and explain to people what arthritis is and different autoimmune conditions are. And I think after about a year of living with the diagnosis and switching medications and learning what the symptoms are, it sets in that this is real. First of all, this is not going away, so it's chronic. It's more than just taking your medications, doing your labs, showing up to doctors visits. There's a lot more of you involved rather than the doctor.

And that's when I started to realize the system that I'm in in health care, and this is no one's fault, this is our medical training and physicians, you are directing medical care to everybody that comes in through your door. You tell them what to do, what to take, when to take it, what the side effects are, and you expect them to do it. But so much of it is also non directed. It's the patient's responsibility to learn the illness. And that was the big missing piece that made me pivot and do a whole another fellowship in something called integrative medicine, which addresses that whole person view of illness. So it's not just the physical ailment that you're addressing, but it's the mind body connection that connects to your illness as well.

And so that led me to do another fellowship, mostly because I was trying to learn it for myself. But I would get the same questions for my patients about, Well, what am I supposed to eat? Am I supposed to do this? Are there supplements I'm supposed to be taking? And in our traditional training, the answer is no, because there's no data to prove any of this is correct or not correct. But I live in the gray area where I'm living with it, and I'm going to try whatever I can to make myself have my best life. And that is a combination of everything I've learned in traditional training with the integrative side as well. So that, lo and behold, like 10 years into practice now. So I now am an integrative pediatric rheumatologist, which is essentially pediatric rheumatology, plus the mind body connection and a whole person view of what's happening with your child.

[00:04:58.890] Dori Durbin

Well, I have to say that your tenacity for finding out how to help yourself and help your patients at the same time is undoubtedly unique.

[00:05:10.090] Saimun Singla
Thank you.

[00:05:11.440] Dori Durbin

We were talking about this before we started, and I don't know how many of my podcast listeners even know this, but I have Rheumatoid Arthritis. And I was telling Saimun that finding someone who understood what I was going through beyond the symptoms and just treating the symptoms and sending me on my way, it just didn't happen. It didn't happen. And it took me years to find somebody who I actually trusted enough to understand. But you're saying you not only can do that, but you can take it to the point where you can help people think about the way that they're relating to their pain or their lives.

[00:05:46.450] Saimun Singla
Absolutely. 

 [00:05:47:00] Dori Durbin
Oh, that's such a powerful gift honestly.

[00:05:49.480] Saimun Singla
Thank you.

[00:05:51.540] Saimun Singla
It's overwhelming at the first visit when you get a chronic diagnosis because you don't have the trust factor with the doctor yet because you're like, Are they right? Are they wrong? I was in denial, right?

Maybe this will go away. This is all not chronic, right? It's temporary. But then you have to, I think you have to go in with the mindset that this could be a lifelong thing or a long term thing, and I need to learn how to navigate it. And that's where I come in. I'm very honest at the beginning, saying that, listen, this is most likely what it is. 

I wish I was wrong. But I need you to settle into the thought process that you're going to have learn how to deal with this. And when I say you, it's the whole family. The younger they are, it's more the parents than the kid.

[00:06:38.240] Dori Durbin

I think that's what's fascinating, too, is that you're basically treating the kid and what's going on with them.

But you have the parent who wants to do everything in their power to protect the child.

[00:06:50.920] Saimun Singla

Absolutely.

[00:06:51.650] Dori Durbin

And how you can navigate that, that's a tricky spot.

[00:06:55.330] Saimun Singla

It is. And it's a lot of tears, which is good. I need you to get that out. The last thing I want is you getting this diagnosis and walking out and then breaking down in the car. I'd rather see the vulnerability because to me at least, I know that you get it, you're getting it. I don't want the denial factor of like, oh, everything's going to be okay. I'm totally about optimism and hope that needs to be there as well, but it needs to be balanced with realistic expectations.

[00:07:25.730] Dori Durbin

So if a child were to come to you or a family came to you, what would be some of the symptoms that maybe they were experiencing that would lead them to even come to you to begin?

[00:07:35.440] Saimun Singla

Sure. So the most common thing that I typically see is joint pains. So most people are like, oh, we thought it was growing pains, but now the kid is not growing anymore, or we're starting to notice that the pain is just not going away. Nothing makes it better. And they're even acting weird. They're not walking normal anymore. They're tired. They're not at the same activity level as their sibling. The teachers notice this. It's hard for sometimes parents to notice swelling. I will say that's a different skill set. I don't expect a parent to note that. And sometimes it's more obvious. They're like, that knee has not gone down and they are limping now. So it can be from mild joint pains and there's arthritis to fluid joint pains, and maybe it's something like chronic pain.

So it's a spectrum of mostly they're coming in with some aches and pains. It could be muscle pain as well, or what I call more constitutional symptoms where they're tired, not at their energy level if they were maybe a few months ago, reduced appetite, sometimes even fevers, hair loss, just random things that people think are random. But then my job is to make sure it's not part of a bigger illness.

Let's say there is an injury that's not healing up and maybe they're acting lethargic. How long would it be before somebody really needed to seek professional... Joint pain related to trauma, let's say you had a soccer injury and you fell and then he got swelling and give it at least four to six weeks before we say, Oh, it's arthritis because the swelling does not go away. That is actually the definition of juvenile arthritis is that swelling has been there for six weeks and it's not going away. And it's not due to something like a viral illness or trauma, because those two things, you're allowed to have swelling in the joints, but the body heals itself typically in that 4 to 6 week window.

[00:09:23.650] 

When someone says it's been going on for about two weeks, three weeks, I'll say, Okay, we're going to keep a watchful eye on it because this diagnosis is a diagnosis of exclusion, meaning we've ruled out the other more common things that could cause this. And so time is the telling factor. And then how the child is acting, the swelling doesn't come and go, come and go. It is there. It doesn't go away. So then I educate on what to look for, supportive care. I'm not going to start you on an immune suppressive if you've had joint swelling for about three weeks. We need a little bit more work. So what things can you do to help with the pain in the mean time until we figure this out, we get labs going, imaging if necessary. So there's a lot of detective work that goes on in that first month. Actually, that's a really great time frame because kids are jumping off coaches and falling off bikes.

[00:10:14.530] Dori Durbin

So six weeks would probably draw most parents' attention.

[00:10:18.080] Saimun Singla

Right. And that's exactly what I saw earlier in clinic this week. One of the younger kids I've seen is she was 18 months old, so not even two coming in with a knee. How is a mom supposed to know that a kid's knee is swollen at that age? They're energetically still at the same level that they were. It's a little bit complicated, but the swelling is there. And if you don't know to look for it, you can't blame anyone for missing that.

[00:10:45.720] Dori Durbin

And I'm wondering, too, just even on an emotional level and a mental level, do you notice any differences when there's this immune system issue?

[00:10:54.750] Saimun Singla

Absolutely.

The younger kids, I don't think, have an idea of what's happening. They don't like going to the doctor's offices. They don't like getting poked. I try to minimize the trauma as much as possible. As they get older, I tell them that this is a reality for them, but our goal is to keep this diagnosis in the background. You're doing everything possible to live a normal functional life to the point where no one even knows you have this. That's our goal, which is good and bad because sometimes having an invisible, chronic illness, people don't... They're like, Why are you tired? Why do you need to take time off? And your job is to be your advocate when that happens, when people act like that. I'm like, No, I have this diagnosis. I know this is part for the course, and this is how I deal with it.

[00:11:42.290] Dori Durbin

It is really hard to look normal and not feel normal.

[00:11:46.440] Saimun Singla

Yes. And this is disconnect.

[00:11:48.880] Dori Durbin

Yeah. And I would think most people, especially kids, would just push through a lot of that.

[00:11:52.970] Saimun Singla

They do. And I think that's where I have to teach the parent and the child, it's okay to have these days. It doesn't mean there's anything wrong. This is expected. But the resilience factor needs to be amped up at that point. How are we going to push through this? So that's where a lot of kids books help. Resiliency training is not specific to Rheumatology. It's across the board for all humans living on this planet. So then that's when I teach about breath work or meditation, or kids love guided imagery or listening to stories.

So I make sure that they're incorporating that into their daily or frequent activities.

[00:12:34.730] Dori Durbin

I remember seeing something, too, about environmental or life conditions that can contribute or minimize the effects of a disease. Do you have a list in your mind of what some of those are?

[00:12:48.280] Saimun Singla

Yeah. So to me, it's all mind body therapies because that's what builds the resiliency factor. So I think to me, there's a whole list of things you can do to increase or boost that resiliency. And a lot of them come down to very simple practices, which is when things go downhill, you can salk for a few minutes, but the goal is to bounce right back up and push along. And so if parents can emulate those type of practices with their kids, I would think that's the best thing. 

So I do a lot of four, seven, eight breath work with kids. So where you take a deep breath in for four seconds through your nose, hold it for 7, and then exhale out through your mouth for 8 seconds, a few seconds long. And if you do that daily at night, I always like to do it at night because that's when your mind is the most still because everything else is off. Those type of things, even reading books to kids about resiliency or how kids got through certain things, I think you can draw a lot of inspiration from other stories. And so that to me is huge.

[00:13:52.050] Dori Durbin

How about stress?

[00:13:53.290] Dori Durbin

I barely get out of my mouth. I know.

[00:13:57.310] Saimun Singla

Stress is a huge, huge player in not only fueling and tickling the immune system in all the wrong ways, but just inhibiting your ability to be resilient a little bit. And stress is a very normal part of life. I don't want people to think that there's anybody walking around and has no stress. Stress can be positive or negative. You have a recital coming up, you have a big performance coming up that you're excited about. Anything that excites the nervous system can also trigger the immune system. And so we need to learn to balance how do you control those stressful periods in your life?

Because my biggest thing is teaching patients with any chronic illness, not just arthritis, even migraines or IBS, that stress is very closely linked to the onset of symptoms. Just map it out. And that's where I do symptom tracking and just take a bird's eye view of your life and figure out when everything started and what triggers these symptoms. I guarantee you you, at some point you will notice a stressful person, a stressful test, a stressful something is causing you to feel these symptoms. And so stress is a huge component to everything.

[00:15:12.810] Dori Durbin

It's so funny to hear you say that because I think even the stressful person's situation, that's something that you don't think about. You could be just even excited with the stressful person, or you can be the opposite, but it's still going to cause illicit reaction in your body.

[00:15:27.840] Saimun Singla

Yes. And that's where I talk about the unconscious mind as well, because there's things that we see, right? But there's also people that might be around in certain settings that you don't care to talk to, let's say, for example, but your unconscious mind knows it. And peripherally, you're watching out for them or trying to avoid your tracks, going around them. They're not doing anything to physically stress you. But emotionally, I think your mind is stressed, stressed from that. And if you have a chronic illness and you know that that can be one of your triggers or that can cause you to feel a certain way, I would go in knowing that, okay, it's very possible for me to flare. It's very possible that I might need a longer nap or sleep in the next day. So give yourself that grace. I think that's how you're being proactive about your own health. Be like, I already know this is going to be bad for me, so I'm blocking time off in my day tomorrow to account for it.

[00:16:25.870] Dori Durbin

Recoup and recover. Well, you mentioned sleeping in. How about sleep with a chronic disease? So important.

[00:16:33.960] Saimun Singla

So important.

So I think what most people don't realize is that when we sleep, there's a lot of behind the scenes stuff that happens to heal our body. And when I say heal, I mean taking out trash. Think of it as your immune system and your body is just taking out the trash. And that trash is called metabolic waste that's produced by every single cell in our body that works for us day in and day out. So it's like during the day, your body is so busy keeping you alive and doing doing regular activities. It doesn't have time to clean and take out the trash. So when is it going to do it? It's going to do it at night when you're resting.And if you don't give yourself that rest, I think all of us know how it feels not to get good sleep and try to function the next day. It's that icky factor. And it's only amplified when you have a chronic condition because you have a lot of metabolic stuff that needs to be cleared. And so sleep is very important to not only physically rest, but also at that microscopic level, it needs to clear a lot of things.

[00:17:31.200] Dori Durbin

Have you seen a difference? If you had a patient that was chronically not getting rest and then they suddenly got rest, did their symptoms improve?

[00:17:39.560] Saimun Singla

Especially with my patients with chronic pain. It's a vicious cycle because sometimes pain causes them not to sleep and that worsens everything as well. So that's when small little habits in the right direction help. It's not going to be fixed overnight, but making sure you have good sleep hygiene, making sure you have a nighttime routine going. That routine is so important, especially for kids that that it's automatically like a reflex in their mind that they know putting on PJs, brushing their teeth, getting into bed, reading a book means within an hour you're in bed and sleeping.

So the more you practice those type of things, the easier it is for your mind to realize it's night, it's time to go to bed and rest. It's a lot of its personality intertwined with your personality type too. So my patients in general that get the chronic pain are female teenagers that are very perfectionistic first child go getters, people pleasers. And you already have that set up. And so it's hard for people like that to fall straight asleep. Usually that's when your mind, all the worries and anxieties start to bubble in your head that wasn't around all day. But then it pops up. And so that's when you have to realize, man, I do have these subconscious thoughts throughout the day. I'm just pushing them for a time when I can think about it. It's going to be right when you're trying to get to sleep.

[00:18:52.070] Dori Durbin

So true.

[00:18:53.920] Saimun Singla

It's just experiential knowledge. It's not anything I learned in fellowship or residency.

[00:18:59.170] Dori Durbin

Good observation skills of yourself. Well, how about food and nutrition?

[00:19:05.120] Saimun Singla

Food is a big one. People always think there's a magic answer to their issues. They're like, Well, what if I eliminate gluten? What if I eliminate dairy? What if I do this? Unless you have certain illnesses like celiac disease or cows milk allergy, yes, you should be definitively getting rid of those type of foods. But then I would say most of the popular population lives in the middle where they don't have this true food allergy, but they have this chronic illness and they want to figure out what foods trigger their symptoms. And that's when the symptom tracking is so critical because if you know that eating X, Y, and Z causes you to feel icky, you have to be first aware of that. And then the next step is, okay, if I decrease it or to completely take it out of my diet, does that make a difference? So it's very personalized in that you have to be the one doing the work to figure it out. There's not one magic bullet test that tells you this is what it is. This is what it's been the whole time. That's way too ideal and it's too good to be true because it is too good to be true.

So food wise, what we do know is that most of the data when it comes to diets to eat and to avoid, the Mediterranean, antiinflammatory type diets are the way to go. And the main simple reason for that is because it's very minimal in processed foods, things that are manmade. It's very minimal in fatty, the bad fats, which are like the trans fats and fried foods, basically. And it really emphasizes fruits, vegetables, which gives us a lot of what we call phytonutrients or plant based nutrients to give us those antioxidants and all the little things that we need to boost are all the cellular processes because you're just basically optimizing the little building blocks to help your nutrition function at its best, if that makes sense. So you're just serving the ingredients so things can be put together and packaged in a proper way.

[00:20:59.800] Dori Durbin

What about protein? Is there anything or any truth to too much protein causes inflammation?

[00:21:06.800] Saimun Singla

So I think when people say protein, you have to better define where that protein is coming from. Is it coming from just like away powder or is it coming from red meat? Because depending on that source, you have to get a little bit nitty gritty. If it's coming from saturated fats, probably you can link, yes, protein to badness, but you have to figure out where that protein is coming from. So I wouldn't say that all protein is bad. I think if you notice a link between protein intake from poultry versus red meat versus things like that, causing you to feel icky, then I would say it's probably the source of your protein. So same trial and error type of thing. Yes, which is annoying. No one wants to hear, Let's feel bad to figure out what the trigger is.

But in reality, your other option is to eliminate everything under the sun and then try to reintroduce everything back. So either way, you have to pick your poison. You're poison there.

[00:22:01.810] Dori Durbin

I'd much rather eat what I wanted and write down what annoyed me than.

[00:22:06.320] Saimun Singla

Right. Because for kids, especially when you try eliminating stuff, it can create a lot of food issues like orthorexia, we call it, or fear of certain foods, weight loss. And that's the last thing we want for them is to create some anxiety around the food and their health. Makes a lot of sense. Yeah.

[00:22:25.210] Dori Durbin

Let's say all of this comes down and a parent finds out that their child has some autoimmune disease of some kind. What is the path and what does that look like as far as treatment diagnosis, that thing?

[00:22:38.200] Saimun Singla

Yeah.

No, that's a really great question because when you first get the diagnosis, your mind is spinning and gosh, so many different directions. So what I do is we take a deep breath first and we go into the overall treatment roadmap is what I call it. So what do we expect for the now? What do we expect a couple of years from now? And what do we expect for a future child when they're grown into the adult side, transition from me into an adult dermatologist? So I break it down into those type of things. The biggest thing that I need them to know from the get go is that this is a marathon. This is not a little sprint. I mean, for some people, it is. Kudos to them. I hope all my patients could be. I wish all my patients could be in that bucket where here's some meds, you're in remission, see you in six months.

But the reality is about more than half to 70 % of the kids are going to fall into this category of we're going to treat your symptoms the best we can with the medicines that we have. But you're also going to be doing all this on your own to learn your symptoms, what makes it better, what makes it worse, what makes your side effects worse, when should you be taking this medication? It's like a new part of your life. Okay, we're traveling. How are we going to take these medications? It's like your best friend coming along with you. So how are you going to navigate this during the fun times and the low times of your life? Because it's going to be there. It's right next to you. So we're going to have to make sure that we remember they're sitting right next to us. And so the more you learn your illness, the easier it is for you to navigate where you're going to go, what you're going to eat, what you can do, what you don't want to do, those type of things.

[00:24:18.320] Dori Durbin

So you mentioned the word remission. For some people, they may know what that is. But my other question is, does every patient actually enter remission?

[00:24:28.360] Saimun Singla

So that is a tricky question because the hope is for every patient to enter remission, which just means that your exam, there's nothing happening on exam, everything's quiet. Lab wise, there's no evidence of anything. So you're just taking your meds, things are quiet. There's no symptoms for me to look at. Most patients enter into remission with the right combination of therapies. There's always a few that go into partial remission is what I say, no matter what you do. So for those patients, it's mostly getting to the right combination. Sometimes it takes longer than others. But eventually, I would say most go into remission.

But yeah, that's what that fancy word remission means. And coming in and out of remission probably happens too, where you have a super stressful situation and you go back out of remission and then you're not going to be able to come. Which is what's called a flare, essentially. So you flare with an illness and then anything can trigger a flare of you to have right knee swelling again. It was gone for so long and now it's back because maybe you had the flu, maybe you got COVID and then that tickled your immune system and so that swelling is back. It's not like a huge setback. I think everyone just needs to know that it's part for the course again. It's possibility that this could happen, don't get down in the dumps if that's the case. And that can be hard.

[00:25:51.750] Dori Durbin

I would assume as an adult, it's hard for a kid. I would think it'd be really frustrating. Because then you go into this cycle of why me? Why? Why? Why am I going through this again? And that's where that social support comes in really handy. Even networking with other kids that have the same condition, like the Arthritis Foundation does so much with juvenile arthritis camps and whatnot. So these kids can connect and know that they're not alone in feeling what they're feeling.

[00:26:19.050] Dori Durbin

Great advice because I think local places may not have that, but the national group of sorts where they could just come to you and talk.

[00:26:27.840] Saimun Singla

Absolutely. I'm happy to connect family.

[00:26:29.690] Dori Durbin

Absolutely. I love that.

What is the very best advice that you can give a parent who maybe is suspicious or just found out that their child has any immune system disorder?

[00:26:41.290] Saimun Singla

Let's see.

I think the best advice I would give is that this is going to be a bumpy marathon. Let go of any expectation you have in your head of what you want it to look like and what it might look like. If your expectation and what actually happens matched, amazing, great. But let go of the fact that it has to be this way or you want it to be a certain way. We're going to do our best on both ends to make sure we get there, but this is going to take work.

And so what do you do when you have a marathon? You train, you prepare, you figure out what to eat, what not to eat. You give your body rest. It's the same mindset going in.

[00:27:23.930] Dori Durbin

It's perfect. Well, I know that you're a busy lady and you probably have patience to see. So, Saimun, thank you so much for your time today.

[00:27:33.010] Saimun Singla

Of course.

[00:27:34.120] Dori Durbin

Do you have a spot you'd like to direct people to get in contact with you?

[00:27:38.600] Saimun Singla

Sure. I mean, I love educational stuff. I love spreading information. That's correct. The opposite of misinformation, I guess. So you could look on social media. I'm on Instagram @ room to grow TX and room is R H E U M T O G R O W T X. I'm also on Facebook at that same handle. And if you live in Texas, I'm happy to see you. Sometimes even if patients have pediatric dermatologists elsewhere, I'm happy to see their child for the integrative part. Now that I'm board certified in integrative medicine, I also do this for adult patients as well. Adult patients with arthritis, whatever autoimmune condition, we talk about the optimizing lifestyle factors as well. And so if you live in Texas, I'm located in Houston, but I can do telemedicine as well. So I'm happy to see you. You can check out my website, which is roomtogrowtx.Com.

[00:28:33.810] Dori Durbin

And I will give her a plug for social media. It is awesome. She's got new stuff all the time and I'm always checking up on it. She has great information on our social media, too.

[00:28:43.140] Saimun Singla

Thank you. I appreciate that.

[00:28:44.590] Dori Durbin

Thank you. You are so welcome. I'm so grateful for your time today and for your knowledge. And I can't wait for people to connect with you and ask more questions.

[00:28:54.800] Saimun Singla

Sure. I'm happy to. So thank you for having me. Thank you.