Co-Sleeping, Poop Concerns, Muscular Dystrophy – PediaCast 185

 

Topics

  • Anesthesia Linked to Learning Problems
  • Parents Ignore Car Seat Safety
  • Stop the Co-Sleeping Madness
  • Even Young Toddlers Understand Fairness
  • Recurrent UTIs and Chronic Kidney Disease
  • Teens Clueless on Fast Food Calories
  • Toddler Poop Concerns
  • Duchenne's Muscular Dystrophy
  • Vision Exams

Links

Transcript

Announcer 1: This is PediaCast.

[Music]

Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike!

Dr. Mike Patrick: Hello, everyone, and welcome once again to PediaCast, a pediatric podcast for moms and dads from the campus of Nationwide Children's Hospital in beautiful Columbus, Ohio. And it is beautiful this time of year.

As many of yo know we were in Florida two years, and came back up to Ohio, to bring PediaCast in Nationwide Children's, and that was back in February. So this is our first fall back and the leaves are beautiful. They're just absolutely stunning right now.

01:04

Reds, oranges, and fall into the ground and getting crispy. And I just love this time of the year, I mean, really this is one of the -I don't miss March in Ohio when I was in Florida, I didn't miss March, but we did miss fall in the Midwest, it's special. And those of you who live here know what I'm talking about. I think New England has a very wonderful fall season as well.

Of course Florida was great other times of the year, but we love Ohio in the fall. We have a lot lined up for you. The show today we're calling, "Co-Sleeping, Poop Concerns, and Muscular Dystrophy." So it must be a news and listener edition of PediaCast to have such a diverse grouping of topics. We have lots more than just those three things though. Anesthesia linked to learning problems, is this really a concern? New study is out on that issue.

02:00

Parents are ignoring car seat safety, so you're going to get just a mile chastising from me. But we're going to talk numbers and what some parents are ignoring. Who would want to ignore car seat safety? I mean, we want to save lives, we want kids to be safe and we'll tell you how. Stop the co-sleeping madness.

Co-sleeping is when babies and adults sleep on the same surface whether it's bed, a mattress, a couch, an armchair it's not safe. And we're going to explain why and we'll take a look some numbers there as well. Toddlers understand fairness. This is an interesting study. This is not technically one of our research round up shows, but I guess it could have been.

We're going to look at several pediatric studies and one of them has to do with young toddlers and their understanding of fairness. It's an interesting one. I kind of wish I've been in the room when they did this one. This is kind of a fun one. Recurrent urinary tract infections and chronic kidney disease, are they related? We've always thought they were, but could we be wrong?

03:04

And teens are clueless on fast food calories. As it turns out I was clueless too. I took a little quiz and we'll talk about that. And then we're going to answer your questions about toddler poop concerns, Duchenne's Muscular Dystrophy and vision exams, all important topics. So stay tuned, stay with us because all that is coming up.

I want to remind you that it's easy to get a hold of us, just go to pediacast.org, you can click on the contact link at the website. We have a new website, I'd really encourage you to check it out. We have a great search function, finally. So if you haven't had a chance to check out the new pediacast.org make sure you do.

You can also get a hold of me by emailing pediacast@gmail.com, or just call the voice line at 347-404-KIDS, that's 347-404-K-I-D-S. I also want to remind you the information presented in PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals.

If you have a concern about your child's health, make sure you call your doctor and arrange a face to face interview and hands on physical examination.

04:10

The show is no substitution for doing that. Also your use of this audio program is subject to the PediaCast terms of use agreement which you can find at pediacast.org. And with all that in mind, we're going to take a real quick break and we will be back with 'News Parents can Use', right after this. [Music]

Dr. Mike Patrick: As you know this news and listener's show are a little bit longer. So some people want to know why do we do the interlude music. It's so I can get a drink. I need a little break from the talking.

05:06

All right. So news do we have in store for you. Well, researchers from the Mayo Clinic in Rochester, Minnesota are reporting that children under the age of two who are exposed to general anesthesia are more than one occasion are more likely to experience learning disabilities later in childhood. These findings will be published in the November issue of the Journal of Pediatrics.

Several previous studies in rodents and monkeys showed exposure to general anesthesia at a very young age kills brain cells. But what about humans? Well in 2009 the same researchers demonstrated that kids who had general anesthesia on two or more occasions prior to age four had a two fold increase in learning disabilities when they reach school age.

That study however was called into question for several reasons. First, the researchers did not control for comorbidities, in other words the condition or conditions requiring surgery could have played a role in causing the learning disability rather than the administration of general anesthesia.

06:03

Also researchers did not look over the entire school life of the individual to see if the learning disability was short lived or prolonged affair. This time researchers dotted their Is and crossed their Ts with a large scale retrospective study with over 1,000 children in a single Rochester, Minnesota school district.

All children were born between 1976 and 1982 and this time researchers took home morbidities into account when they divided the kids into one of three groups. Those with a history of two or more general anesthesia exposures prior to aged two, those with a history of one exposure, and those with no exposures. They also took into account the entire school history of each child with the learning disability being defined as any child requiring special help for language and speech difficulties who had an Individual Education Plan or an IEP.

So what do they find? Well, 37% of the kids with two or more general anesthesia exposures prior to aged two were identified as having learning disabilities compare that to 24% of the kids with a history of one exposure and 21% of those with no history of general anesthesia prior to two.

07:14

The kids with two or more exposures to general anesthesia prior to age two were nearly twice as likely to have diagnosed learning disabilities compared to those with no such exposure which is basically the same result that the researchers had found before and this time they did take into account comorbidities and the results were statistically significant.

Now the current study however still has its detractors, the nay sayers. Remember they do make a good point, this is a retrospective study and researchers were looking backwards and in order to consider the full school history in kids, who had also had surgery prior to age two they had to look way back and in fact these surgeries were done between 1976 and 1982.

08:00

Well, surgery was a little bit different back in1976, and kids weren't monitored as well as they are today for oxygen level issues, so they weren't necessarily on continuous pulse oximeters to make sure that their oxygen saturation went OK the entire time. And also different anesthetic agents were used and different doses were used that what are used today.

And because of these limitations the FDA does not feel there was enough evidence to warnings or practice advice, or use against general anesthesia in young kids at this time. Now the bottom line from my point of view,you know, if your kid really needs surgery, if they're less than two, and they really need the surgery, you probably should get it. But if it's an elective procedure and your child is less than two, and it's something that really can wait, maybe you should wait at least until we know more.

Of course and as always, these kinds of decisions should be discussed with your child's doctor. Earlier this year, PediaCast reported that new car safety guidelines or an effect from the American Academy of Pediatrics, you'll remember the details, right?

09:08

Kids should remain rear facing until age two so no more turning kids around on their first birthday. So how are parents doing it following the new guidelines? Well the answer to that question, researchers in Michigan questioned 500 parents who had switched their kids from rear facing to forward facing since the new guidelines took effect.

Unfortunately only 40% of parents had followed the new recommendations, 30% had turned their kids forward facing before aged two, and another 30% had turned their kids forward facing before age one. Not safe folks, not safe. As a reminder children under the age of two are 75% less likely to die or be severely injured if they are riding in a rear facing car seats.

75% less likely, 5,000 U.S. children die in car accidents each year and for every one that dies, 18 more are hospitalized with severe injuries.

10:08

Now this number is down from the past. In fact the number of childhood deaths from car accidents has dropped by 45% since 1997, even so 5,000 deaths per year is too many. And one thing you can do to bring that number down and possibly save your own child's life is by waiting until aged two to make the switch to forward facing.

Now, what if you've made the switch already prematurely? It's not too late moms and dads, turn your kids back around. And if your child doesn't like rear facing after they have been forward facing, and they cried the entire trip because they want turned back around, we'll think of it this way, their crying is a sound that thousands of parents wished they could hear again.

By the way the other details for the new car seat guidelines were discussed in PediaCast 158, so you can cruise on over to the show notes and we'll provide an easy link so you can take a listen and brush up on those latest recommendations.

11:04

Another practice that's killing babies is co-sleeping. By definition co-sleeping is defined as baby is sleeping on the same surface as a sleeping adult. Again the surface may include bed, sofas, mattresses, armchairs, or anywhere else you and your baby decide to nap. Researchers in Australia looked at 72 random infant deaths between 2008 and 2010 and found that 33 of the deaths or 46% occurred while the infant was co-sleeping with an adult.

So what happened? Did parents rolled on top of their baby and caused suffocation? Well, in a few of those cases, yes that's exactly what happened. But 28 of the 33 deaths, parents say they did not roll on top of their kids and SIDS was ultimately ruled as the cause of death.

If these numbers seemed a little unbelievable consider this, the U.S. Consumer Product Safety Commission identified 515 co-sleeping deaths from the 1990s and 121 of those cases, parents did roll on top of their babies and caused suffocation.

12:01

But the remainder representing nearly 400 babies were not ruled as roll over suffocations and the cause of their death for most of them were labeled as SIDS. Now sure some parents may not know that they had rolled on top of their infant and then report it. Others might not want to fess up that that's the what happened and didn't want to admit it.

But the bottom line whether it's a roll over suffocation or truly SIDS, the bottom line is that too many babies die when the co-sleep and if you're doing it, you should stop. I've talked to many parents who co-sleep during my years as a pediatrician and all of them said the same thing, I'm a light sleeper, I don't move, I had never rolled over on my kid.

They also say, "Hey, I know a lot of parents who co-sleep with their babies and I've never heard of a single one of them dying." Well, those of us who work in emergency departments have seen it. Babies really do die co-sleeping, it really does happen. But the good news is these kinds of deaths are preventable, so just stop. Stop the co-sleeping madness.

13:04

Children appeared to understand fairness at an early age. In fact earlier than you might expect. Researchers from the University of Washington report 15 month old babies can tell the difference between equal and unequal portions of food and watching fairness and action affects their own willingness to share. Investigators presented a series of videos to nearly 50 15 month old babies.

Each video showed a caretaker distributing snacks to children. The snacks consisted of crackers in some of the videos and milk in others. The videos were also different with regard to the equality of portion sizes. In some videos the caregivers handed out equal portions of crackers or milk, and in others the caregivers gave unequal portions.

Baby interest was then measured by how long each child engaged with the different video versions. Finally the babies played with toys and researchers documented each child's willingness to share. So what did they find?

14:00

Well, as a group, 15 month olds were more interested in watching videos that portrayed unequal distribution of crackers and milk. The author of the study Dr. Jessica Sommerville explains, "We know babies pay more attention when they are surprised, in this study infants expected an equal and fair distribution of food and they were surprised and paid more attention when one person receive more crackers or more milk than the other. With regard to sharing toys, kids who spent the most time watching the unfair videos were the most likely to share even when sharing meant giving up a favorite toy.

Dr. Sommerville who's an associate professor of psychology at the University of Washington reports the most 'altruistic sharers' seemed really sensitive to the violation of fairness in the videos. But she also points out that more researchers needed to determine if fairness and altruism are innate qualities, or ones that can be nurtured.

Wow! Seriously that would have been a fun one to watch. Really I would love to have been in that room. Researchers in Finland have looked at the link between recurrent childhood urinary tract infections and the development of chronic kidney disease.

15:07

Their findings are published this month on the online version of the Journal of Pediatrics. Many parents out there know what I'm talking about, you have a child with recurrent urinary tract infections, your doctor does an imaging studies including perhaps what's called a VCUG where they take X-rays and look to see if dye gets refluxed from the bladder back up toward the kidneys.

And they may have a renal ultrasound done to look at the kidneys with the ultrasound machine. They might discover that your child has reflux of the urine from the bladder back up to the kidneys and your doctor might put your child on a daily antibiotic to prevent recurrent urinary tract infections.

And why do they want to prevent urinary tract infections because historically one of the feared outcomes of recurrent urinary tract infection was the possibility of chronic kidney disease later in life. The thought is that you have lots of urinary tract infections, you get inflammation in the kidney, you get scarring, and then later in life your kidneys don't work so well.

16:04

So that's always been the thought in the past, but is this the scenario that really happens? Well, Dr. Jarmo Salo and his team of Finnish researchers in Finland say no or at least not usually. The team looked at 366 adult patients with chronic kidney disease and then they looked back to see if recurrent urinary tract infection could have been the cause.

Of these only 13 of the 366 patients had a history of recurrent urinary tract infection in childhood and all of these but one had kidney abnormalities evident on their first imaging study in the abnormalities discovered could have been identified with the simple kidney ultrasound in early childhood.

Only one patient studied had a recurrent urinary tract infection as plausible explanation for their chronic kidney disease which that works out to a relative risk rate of 0.3% in the study population. So what does this mean for clinicians and parents?

17:00

Well, first the study has a small sample size and it is a retrospective look back at the data, certainly a prospective study with a larger sample size would provide additional reassurance that there really is no link between these two things. But the study does call in to question some aged long practices, do young children automatically need a VCUG and the radiation exposure that goes along with it after a single urinary tract infection or with just a renal ultrasound be OK?

And in under what circumstances should a renal ultrasound be ordered and which kids really do need a daily dose of antibiotics to prevent urinary tract infections and which ones don't.

These are the questions. And to help you with the answers I'm actually going to point you in the direction of a hot off the press clinical practice guideline from The American Academy of Pediatrics regarding the diagnosis and management of the initial UTI or Urinary Tract Infection in febrile infants and children who are two to 24 months of age. And this is hot off the presses.

18:00

I think it would be of interest to clinicians out there so doctors and nurses make sure -and parents too if you're interested go to the Show notes at pediacast.org , the Show notes for this episode which is PediaCast 185 and we'll put a link to that particular clinical practice guideline from the American Academy of Pediatrics. Again as I always say, individual decisions on how to evaluate and treat your child should always rest between you and your child's doctor.

Not a policy statement and certainly not a podcast because each situation may be unique and require a tailored approach. And finally in our news segment, teens and probably lots of adults including myself are pretty clueless when it comes to understanding the number of calories in fast food meals. Researchers at Harvard Medical School surveyed 547, 11 to 20 year olds who are leaving one of five fast food joints. And you can picture this, right? Researchers stand outside the door at McDonald's, Burger King, Subway, Dunkin Donuts, and Wendy's.

Now I'm not sure if the restaurants imposed a strict 75 foot limit like your friendly bowling place, but that's beside the point other than adding to the visual.

19:14

So what do you ask? What did they asked? Well, they asked each person to estimate the number of calories they had just consumed and then just add a little more visual candy here for our scene. Researchers collected receipts. Really, I'm not kidding.

They wait for these kids to leave Mc Donald's or Burger King and they say, "Hey, hey, hey. What did you just eat and how many calories do you think you just ate? And give me your receipts so we can see exactly what you had ordered."

And then they compared the teenagers perception of how many calories they ate to the reality of what they had eaten. So here's what they found, at 80% of the young people underestimated the calories that they had eaten in their meals, 30% underestimated the amount by 500 or more calories. And those who ordered 1,000 calorie meals underestimated by an average of 350 calories. That's how much they are off.

20:11

Those who ordered 1500 calorie meals, underestimated by an average of 700 calories which little quick math will tell you it's almost half off. So I thought it would be a little fun to do an experiment myself. In the past -and I actually have not, and my wife will attest to this, I have not had this meal in quite some time, but there was a time in my life when a Quarter Pounder with cheese extra value meal with a Coke medium size, I didn't supersized it. But I would throw in a cherry pie for good measure.

And that meal for me had been -I wouldn't say that I had it every three or four days, but I'll bet every one to two weeks I would. And it was kind of an old standby for me and especially when I was in private practice and just had a quick dinner break between seeing afternoon patients and starting the evening patients.

There are many a day that I would head over at Mc Donald's and order a Quarter Pounder with cheese extra value meal with a Coke medium size, and a cherry pie thrown in for good measure.

21:08

So how many calories is that? What do you think? How many calories is a Quarter Pounder with cheese extra value meal with a Coke medium sized, with the cherry pie thrown in for good measure. So got your guesses in your head? I know I'm prolonging this a little bit, but it's so that you can kind of think. And how many calories do you think that is?

My guess was about 1,000 calories. I thought that would be a good guess. So how close was I? Well a Quarter Pounder with cheese is 510 calories, medium fries, and this just surprised me, medium fries are another 500 calories, There's as many calories in the medium fries as in the Quarter Pounder with cheese almost, that's crazy. The medium Coke, 310 calories.

OK, I'd get a diet Coke now and make that a zero. And the cherry pie is 250 calories. So the total was 1350, 1, 350 calories which I think is interesting because that means I underestimated by 350 calories which was average for this study.

22:11

Now what if I had just for fun, what if I had supersized it with large fries and a large Coke? Well that would have brought the total to 1570 -1,570 calories for that one meal. Let's compare that to the total daily calories that I would need. I think I mentioned before that I'd like to lose a little bit of weight and if I put myself on a diet and try to lose one pound per week which is reasonable.

One pound per week over a few weeks, then the number of calories that I would kind of shoot for during the course of an entire day is 1674. Now compare that to 1674. So I mean if I'd supersized it right there, I mean, that's your one meal. You can't eat anything else just about.

23:00

But compared to my 1350 calories in the medium sized fast food meal, I'm still up with only 324 calories for breakfast, dinner, and an evening snack which is pretty depressing and it's no wonder that I'm not losing weight. See I can't let my wife hear this podcast because she'll just say, "See I told you so." We do have some links in the Show notes if you want to add this all up for yourself.

A really cool site is Lance Armstrong's "Live Strong". He has a whole calorie tool set and you can figure our what your target calorie intake to be depending on your age, your height, your weight, your lifestyle, whether you know, you're sedentary or light exerciser, moderate, or heavy exerciser.

And then with what your goal is, whether you wish to maintain your weight, you're trying to gain weight, lose weight, how fast you're trying to lose weight. You plug all that in and it gives you how many calories a day that you should be kind of shooting for to meet your goal.

24:00

And then they also have a food calculator, and there are others that are available on the internet, this is just nice one stop place, we'll put a link to it in the Show notes but you can look up all sorts of different food, grocery items, fast food places, regular restaurants and such, and just figure out how many calories are in the meals. I also utilized the Mc Donald's official nutrition guide for my own calculations and we'll put a link to that in the Show notes as well.

All right. That wraps up our News Parents Can Use for today's show, but we do have some listener's question for you and we will get to those right after this.

[Music]

25:05

Dr. Mike Patrick: First stop is Amy from Twin Cities, Minnesota. And Amy says, "Hi, Dr. Mike. I've been a fan and listening since the very beginning, and your show has helped me so much while raising my now six year old son and two year old daughter. I've been me meaning to write you for some time about this issue, but I'm just not getting around to it.

Ever since my daughter who is now two years old was about nine months old, she has had some issues while trying to poop. She gets very tense and lays on her stomach on the floor and get stiff as a board. She crosses her feet and her ankles, it's a very strange and I've never seen a child in this position while they poop. We've discussed this with our pediatrician and we're advised to give her Miralax everyday or so to help things move along.

And while this does help with the constipation part, she is still pooping in that same bizarre position. We're to the point where we will probably be ready to potty train sometime in the next few months and I'm not sure if I should take her to see a specialist or see if it resolves itself when she is potty trained.

26:02

My only concern with waiting is that it might interfere with her ability to potty train especially for number two and I would hate to make it a scary experience for her. Any thoughts, tips, or advice is much appreciated."

All right. Well, thanks for the question, Amy. First I'm reassured with the fact that you saw your doctor and your doctor is not too concerned about it. I think really you have to kind of tease out whether this is problem with her really needing to be in that position in order to have a bowel movement. Or is this just a behavioral issue and I don't mean as a behavioral issue as in it's bad behavior, I'm just saying, is this just the way she likes to poop because that's a possibility too and you really have to kind of figure that out.

If you know that she can poop in some other positions, you know, for instance if you've been in the car in a long car trip and she didn't have a dirty diaper before you left, and she had dirty diaper when you arrived at your destination, then you know that she is capable of pooping in a sitting position.

27:01

On the other hand if you have a long car trip and she's got to go and she wants to go out and lay on the ground and do her thing with her legs crossed and bearing down and all that, then there may be more of an issue here. But I suspect that she probably could poop in the sitting position of she really wanted to, she just doesn't want to.

There are diseases that can cause problems with getting bowel movements out, Hirschsprung diseases one of them, constipation certainly is one of them, and there are other neuromuscular type diseases that could be a problem with the anal sphincter as well. I think if your doctor feels comfortable that your child can poop, that she just likes to poop in this position, then it's just a behavioral issue and we'll get to that in a minute.

If it's constipation and it sounds to me like you have that under control, Miralax certainly lots of kids are on Miralax to help them have looser bowel movements and make it easier for them to pass.

28:00

I trust that your doctor has sort of worked this up and done a complete exam including a rectal examination and just to make sure that everything is functioning normally. So once you've sort of ruled that out that there's really no disease here, and I guess you're asking do you really need to see a specialist to rule that out.

I'm not sure that you do if your physician has done a good physical exam and asked you these same questions that I'm asking and kind of gone down that path, then they probably done a pretty thorough job, but certainly if you feel more comfortable just seeing what pediatric gastroenterologist things about this whole thing, there's certainly nothing wrong with asking your doctor for referral.

You know, it's a quick visit, they may just end up saying what I'm saying and what your doctor is saying, but you'll go to bed a little happier and more relieved that a pediatric specialist thinks the same thing. And there's something to be said for parental mental health when it comes to allaying your fears. But in the end this is probably a behavioral issue that's the most likely thing.

29:02

And that your child just has a habit of pooping that way and it's certainly not hurting anything and there's nothing wrong with letting her do it. And I suspected when it is time for potty training to start, as long as you make it fun, you have appropriate words and celebrations and I mean really make this into a fun game, that you just have to make pooping in the potty more fun than her usual pooping position.

But of course she has to be physically and mentally ready for that and you know, some two year olds are, some aren't until they're three and a few aren't until they're four. And so you just have to kind of gauge your child and when they're physically and mentally ready, then ready to do it, and I don't think you'll end up having too much of a problem as long as you make potty training fun, that's the key. In the meantime I try not to draw too much attention to your concern.

I mean, you don't want to start a battle the wills. You don't want to -the parent then be, "You can't poop. I'm not going to let you poop like that. You cannot lay on the ground and cross your legs, and push real hard. To have bowel movement, you're going to do it my way."

30:08

And if you do that, you're going to get into a battle of the wills, and you might not win. So that's one thing to insider. I'd probably just lay low, and when it's time to start potty training make it fun, otherwise let her be.

But the caveat again is you want to make sure that she's not really having trouble getting the poop out, that it's just behavior and a habit. And hey, look at this way, it's easy to tell when she poops because she does her little position thing, right? So you know when to change her quickly. Hope that helps, Amy.

Next stop is Beth in Xenia, Ohio. And Beth says, "I recently listened to an interview with the woman who had twins with Duchenne's Muscular Dystrophy. She mentioned that it occurs in one in 3,500 boys which seemed really high to me. She said that one of the early signs of the disease is being a late walker. This concern me because my son didn't walk until almost 15 months of age. He's currently 21 months old and walks very well, but he can't run or jump yet.

31:04

I'm not sure if he should be running or jumping yet. My question is am I overreacting and what symptoms should I be looking for. Love the show. Thanks. Well, thanks for the question, Beth. There's lots of reason why a child may be a late walker, and Duchenne's Muscular Dystrophy is perhaps one of them, but there are many, many others.

Most late walkers are just late walkers and that's all there is to it, they just walk late, there's no pathological reason for it. There are a lot of kids out there who don't walk until they're 15 months old, we kind of say 12 months is the general gauge, but there's a lot of normal kids out there who don't walk until they're 15 months old.

And there are a lot of kids out there with no disease processes that will not be able to run or jump when they're 21 months of age, but as they grow older they will. But then again there are other kids who do have a problem and Duchenne's again being one of them who's also in that position where they walk late and they're still not running and jumping at 21 months of age.

32:09

So the trick here is picking those kids from the crowd. If you have 100 normal kids -let's say you take 100 kids, and I'm just picking up numbers here, but I'm pretty close. Let's say if you take 100 kids and all of these 100 kids, 15 months old when they walked and at 21 months of age, they're not running or jumping.

And then you were to look on down the road how many of those kids have a problem that finally got diagnosed and how many didn't. And that particular study to my knowledge has not been done. But I'm guessing that you know, I don't want to give a number -it's going to be high, it's going to be 90-95 out of 100 kids who are in that position or probably. That would be my hypothesis before I did the study.

So I suspect that there's a lot of normal kids who aren't walking at 15 months, but then they are walking and they're not running and jumping real well at 21 months of age.

33:02

And our goal here, the trick is to pick the kids who have a problem or try to predict who are going to have a problem and pick them out so that you can intervene as early as possible. At the same time you don't want to do huge work ups and referrals on every single kid on that situation because you're going to end up clogging the system with lots of normal kids and using up resources that then won't be available for those who need them.

If you send all of the kids in that situation to get the big work up, you're going to have long waiting list and not be able to get in to a specialist, not be able to get the test order, then the kids who really did need them suffer because the system is clogged. So how do you go about doing this? How do you separate the kids you worry about from the kids that you don't.

Well one thing I always take into account is family history. So if others in your family have been late walkers, if that is a common family trend, and if those late walkers grew up normally without any pathology or disability, that's reassuring.

34:08

Is it a 100%? No. But it is reassuring and would certainly make me feel more comfortable just sort of setting back and watching things a little bit longer. Another important thing is you definitely want your doctor know about your concern and that your doctor does a complete neuromuscular physical examination or really a complete physical examination, you know, of all the body systems, but paying attention to the neuromuscular systems.

And they'll check muscle tone, they'll check reflexes, they'll cranial nerve functions, motor functions, sensory functions, you know just a really good, complete neurological and muscular exam. And if that examination is normal and especially if there's a family history of late walkers, I'd feel really good about that.

On the other hand if the physical exam is abnormal, so if your child has increased muscle tone, or they're kind of stiff, or they have fluffy tone or asymmetric tone, or asymmetric reflexes, or reflexes that are too brisk, or reflexes that aren't there well enough or any other concerning finding, then that's a different story.

35:17

So I think the bottom line bet if you've seen your doctor for this and your doctor has examined your son thoroughly, and feels comfortable watching things a little bit longer, I'd feel good about that. It's not 100%, nothing is 100%, but I think it makes sense as a plan. Now what can you do to kind of speed up their development? I mean how can you get your kid to run and jump a little bit faster?

Well, you can provide lots of stimulation and encourage muscle and coordination development. Your doc can give you some specific ideas about how to do this or they can refer you to a physical therapist to get a plan going. You don't have to have a diagnosis or unknown disability for physical therapy to be helpful.

In fact for some of these kids who are kind of late walkers and sort of late on their development both the normal exam, they're growing well and the physical therapy folks have no problem at all saying, "Hey let's work with them and see if we make some improvements, and if we don't, then we'll do the big workout."

36:13

But if there's any abnormality in the neuromuscular exam, then definitely you got to go the next step and start looking into things. And keep this in mind too, I think a lot of times when we talk about have physical therapist work with them because they need stimulation, then parents think, "Well golly, I must have been a bad parent. I wasn't stimulating them appropriately", and that's not necessarily the case either.

Some kids just develop slower, and really, even though you want them to do it maybe they want to do those things, they just can't yet. And they will, they'll get there, they're just a little bit slower. And then some kids just don't want to do it, you know, if you have a 21 month old who doesn't want to run and they don't want to jump, they're not going to run and they're not going to jump. It doesn't mean that they can't do it, they just don't want to do it.

And so you have to sort of consider that in the mix as well. And sometimes as a parent you push, and push, and push and you want them to do a specific thing that's going to reassure you, but they don't want to do it and then they get stubborn, and then you get that battle of wills going.

37:09

And as I mentioned before, you may not win that one. So those are also kind of hurdles your phase in dealing with this. Now since you mentioned Duchenne's Muscular Dystrophy I thought we could discuss that just a little bit here. Duchenne's is the classic form of muscular dystrophy that we all think about, although there's other forms of it as well.

But these are the kids who Jerry Lewis started the telethon for to Duchenne's Muscular Dystrophy is sort of the classic Jerry's kids and the classic muscular dystrophy. It's a genetic disease, it is X linked recessive. That means that you either have to have -well, I'm jumping ahead of myself.

It's carried on the X chromosome, that's what that means X link recessive. Now boys only have one X chromosome, they've got a Y and an X. So if a boy has the gene on their X chromosome, they're going to have the disease.

38:04

Now moms and girls have two X chromosomes, so in order for them to have the disease, they would have to have two X's in order to be affected, and that does not happen very often. So women usually are carriers, so they'll have one X chromosome and they're carrier.

Now most of the time carriers don't have any symptoms at all, but with Duchenne's they might develop some mild muscle weakness, and/or some heart muscle problems or cardiomyopathy sometimes happens, but usually they do well. So really to have the full blown Duchenne's Muscular Dystrophy, you either have to be a boy with the X chromosome that's affected or you have to be a girl with both X chromosomes affected.

Now in order to be a girl with both X chromosomes affected, you have had gotten one of those X chromosomes from your father, right? And since your father only has one, if he has that affected X chromosome, that means he has the disease.

39:01

So in order for a girl to inherit Duchenne's Muscular Dystrophy she would have to have a father who was affected. And most men who are affected by Duchenne's Muscular Dystrophy aren't able to reproduce. And so it is unusual to see women who have it.

Now you can also have new genetic mutations that occur. In fact it occurs fairly frequently and so women who have it oftentimes they have inherited it from their mom who was a carrier and then their other X chromosome had a spontaneous mutation and that's how they ended up getting the disease even though their father was not affected. So Duchenne's is much more common in boys.

Now, how common is it? Well, Beth, as much as you're surprised, the numbers are correct. It affects one if every 3500 boys in the United States. And it ends up being about 35% of those are the result of new mutations, that a new mutation was involved, so it wasn't strictly inherited in about 35% of cases.

40:09

Now there are other forms of muscular dystrophies that affects boys and girls equally. So we're only talking about Duchenne's Muscular Dystrophy with this discussion. So what happens to affected individuals? Well, remember that genetic material provides the code for proteins and in this case the protein that is not made correctly is called Dystrophin.

And Dystrophin is an important connecting molecule in the structure of a muscle. There's not a lot of it present, but the small amount that is in the muscle has an important jobs. And as I mention one job is a connection piece. But another one of those jobs which appears to be more significant with Duchenne's Muscular Dystrophy is that that protein dystrophin appears to be involve with the proper regulation of calcium in and out of muscle cells.

And when dystrophin is absent, or abnormal, or not there in proper amounts, then too much calcium enters the cell and over time, and do some complex processes that aren't yet completely understood.

41:11

The muscle cell weakens and it dies. And these dead muscle cells slowly get replaced with a fat and connective tissue. And as more and more of these cells die and get replaced, the muscle itself gets weaker and weaker. But it's a slow process and it's variable from patient to patient in terms of when it starts and how long, and over what period of time the whole process occurs.

And a lot of kids with Duchenne's Muscular Dystrophy in fact probably most of them actually develop normally in the beginning. They walk on time, they do everything, they meet their developmental milestones, and it isn't until they're about two or three years of age that the problems start to occur. So right there it sounds like it's not quite the situation that you're dealing with at home, but again not all kids follow the rule book and show the classic picture, and we're just talking classic picture here.

42:06

So what happens then? Well in Duchenne's Muscular Dystrophy it appears to affect the upper arms and the upper legs to the greatest degree and kind of first. And other muscular dystrophies may have different pattern, but with Duchenne's, that's what you see. So they're developing fairly normally and then around two to three years of age is when they start to get weakness of their upper arms and their upper legs.

So what does that result in? Well you have a kid who before they were developmentally they were developing fine, and then suddenly they begin to have more frequent falls, they begin to have a clumsiness that wasn't there before.

And then they start to have difficulty getting up from a lying or sitting position, and there's a distinctive move that doctors asks about and kind of look for where kids when they're in a sitting position will push their arms against the front of their thighs with kind of a walking motion to help them extend their legs as they stand up.

43:04

So that's one of the things. Now again not all kids with Duchenne's are going to do this, but it is something that you see fairly frequently. Now ones they're standing, then they begin to have difficulty running and jumping, where they could do it before and now they're starting to get weaker and they do have difficulty with running and jumping at that point.

They begin to then have a waddling gate and then finally just difficulty ambulating all together, and that usually happens by late childhood. Then they can also start to have trouble with their heart muscle like the carriers can have, or you have Cardiomyopathy -it's weakening of the heart muscle, and the heart starts to dilate and get bigger. And progressive weakening of chest muscles can make it more difficult to breath.

And because they are not taking big, deep breaths and they're sedentary, pneumonia can occur and it's a common at this stage and it can be deadly. Most die by their 20s or early 30s and pneumonia is probably the biggest reason for that, but there are others as well.

44:00

So again, it doesn't really sound like your child's course, Beth. But kids don't always follow a cookbook pattern so you can be reassured that it's not likely, but I mean you can't count it out 100% or you can't count out some other neuromuscular disease 100. So how do you differentiate Duchenne's from other diseases? How do you differentiate that normal from not normal?

Well, physical exam is going to play a big role and as I mentioned and looking at family history, but ultimately when you have a kid that you're concern really does have a neuromuscular disease, you're going to probably start out with some imaging studies, you're going to make sure that their CAT Scan or the MRI of their head is OK and normal.

And then you can go on to do muscle biopsies, something called EMG or Electromyography where needles are placed in the muscles, and the muscles are stimulated and electrical activity is measured. Also certain blood test may be helpful and ultimately genetic testing. And as you can imagine, this is a costly work up, and it's also invasive work up.

45:02

We're talking about muscle biopsies and EMG's and you're utilizing resources that aren't widely available, I mean there's not a lot of places that you can go to get a muscle biopsy done and interpreted. It's into available at every local community hospital, and you got to go to a tertiary care center. So you're using up a lot of resources and it's costly to make the diagnosis.

Now of course when it's your kid, you don't care about the cost and the resources. You just want to know what's going on and you want them to be helped any way that they can be. But again at the same time you don't want to clog the system with a bunch of normal kids who really didn't need to work up to begin with because that could delay the diagnosis in other kids who really do need those resources. So these are all things to think about. So once you do diagnose Duchenne's Muscular Dystrophy, how do you treat it?

Well, ultimately you'd like to develop a type of gene therapy where you could alter the child's DNA to properly encode for the normal Dystrophin protein, right? But we're not there quite yet, many smart people are working on it, but we're not there yet, but hopefully in the future and that's the kind of cure type of thing that they're working for.

46:10

The mainstay of treatment now a supportive care through physical therapy, assistive devices, comfort measures and really just our best ability to improve quality of life when we can't prolong it. There are some drugs that can be helpful, cortical steroids and immunosuppressive drugs can slow down the muscle destruction process, but they only delay the inevitable.

And muscle spasms can start to be a problem, so muscle relaxing type drugs sometimes can be helpful as well. So kind of summing up Beth, I don't think you're over reacting, it doesn't sound like your son has classic Duchenne's Muscular Dystrophy based on your description. And he's probably just a late walker especially if that pattern runs in your family, but at the same time continue to watch things closely and keep checking with your doctor.

So I hope that helps and thanks for the question. All right. And finally we have Ashley in West Virginia.

47:00

And Ashley says, " Hi, Dr. Mike. I've been listening to the podcast for about a year and I love it. I really like the new format. Thanks so much for all the hard work that you put in the show each week. My question is this, what are the guidelines for a routine vision exams in children? Is the snellen chart my pediatrician uses in her office efficient or should my healthy children be examined regularly by an eye doctor?

Well, thanks! Good question, Ashley. Thanks for asking. The official line from the American Academy of Ophthalmology is that all children have a vision examination by a Ophthalmologist by their fourth birthday and on fairly regular intervals, you know, every year or two after that. It's good advice, but it's not always practical, and let me explain.

If you live in a big city and you have great resources, and there is a pediatric ophthalmologist down the street, you know, go, do it. They'll let you know how often you need to be seen, there's probably no such thing as too early, but unfortunately a lot of people don't have those kind of resources.

48:07

You may live in a medium size city, there is a couple of ophthalmologist in town, and they tell you they don't see kids. Or their next appointment is six months away, and then you have a conflict, and then you have to reschedule, things don't always work out that you can see an ophthalmologist before your child's aged four.

Now here's my take on this, I'm going to be a little more practical than that guideline. In a perfect world I think that's a great idea. What is absolutely important though is this; it's absolutely important for your children to have their eyes examined by your pediatrician or your family doctor shortly after birth and at regular intervals during the well child check up.

So two months, four months, six months, nine months, twelve months, 15 months, 18 months. Part of that examination, part of the reason to go in to see your doctor that often is to have their eyes looked at.

49:01

Your doctor's going to look for normal red reflex which lets them know that the eyes are clear, that there aren't any tumors inside. They're going to be looking for normal eye movement, for normal eye positioning that there's no lazy eyes, or strabismus present. They're going to be looking to make sure the corneas are clear and not clouded like you can see with glaucoma in young children.

They're going to be looking at the anterior chamber to make sure that there's no blood, and that it's clear, that the pupils respond normally to light. All of those things that an ophthalmologist would do, your doctor is perfectly capable of examining those things. Now your doctors is probably not going to get a good look at the retina all the way in the back.

Do they need to do that absolutely in every baby? No. If you're baby is premature, they are at a higher risk for having some retina problems. So those kids absolutely, they should see pediatric ophthalmologist, and if they graduated from a newborn intensive care unit, that probably is the ophthalmologist may have come in and see the baby while they were still in the NICU or you would gotten a referral to a pediatric ophthalmology.

50:05

So we're talking about term babies with no health problems, and no family history of let's say infantile glaucoma. So you know, clear family history, healthy baby born on time your regular doctor is quite capable of looking at their eyes. Now how do we know about their visions? So we can say the eyes looked normal, but are the babies seeing normally?

Well, infant vision -there are some fancy machines that can actually refract their eyes and see if they're far-sighted or nearsighted. But you know, is that necessary in every baby? No. Infant vision is really best assessed by watching behavior. Obviously you can't have them do an eye chart, but are they making eye contact? Are they following objects? So normal exam and normal behavior is definitely reassuring.

And if there's any concern, then an immediate referral to a pediatric ophthalmologist is important. And this is one of those things again, there's only so many pediatric ophthalmologist out there.

51:00

And if every single child was going to see him, the kids who needed to see him wouldn't be able to get in and see him. Now, as your doctor watches and examines her eyes probably the most common causes -one of the more common things that we see, that we refer to a pediatric ophthalmologist is probably lazy eye that and then it's also important to continually be rechecking that red reflex and just make sure that everything looks clear in the eye.

And when your kids can begin to interact with the snellen chart or a modified snellen chart with pictures, it's important that they do that at their well check ups or any other time that you have a concern. And I think from a routine standpoint, it probably is a good idea to really try to get in to see an eye doctor before kindergarten to get more of a thorough exam and a vision check.

Now does that have to be a pediatric ophthalmologist? And let's talk here real quick. What's the difference between ophthalmologist, optometrist, and optician? Because it's kind of fancy words.

52:04

Ophthalmologist they are doctor with MD or a DO. So they are medical doctor, they went to medical school, and they trained to be an ophthalmologist. If they are pediatric ophthalmologist then they have additional training or a fellowship in pediatric ophthalmology. And again they perform surgery, and they are medical doctors.

An optometrist has an OD degree which is Doctor of Optometry, and so these are eye doctors who aren't medical doctors, they don't necessarily do surgery, but they do more than just an optician will do. An Optician is someone who just does glasses and they make the glasses, it's more of that's their specialty.

The optometrist will do refractions and prescribe your contacts, make sure they're fitting properly, and making sure your glasses are the right strength and whether you need bifocals and all that.

53:01

They also screen for other abnormalities and would refer to an ophthalmologist if something surgical or something that really needed lots of medical treatment they would do that. So if you're in a small town, you only have a couple of ophthalmologist and they don't see kids let's say, but you have an optometrist that would, that's better than nothing.

That sounds terrible because they are very useful -optometrist, and quite capable looking, just as capable as your pediatrician and your family doctor looking at their eyes and making sure that there's no concerns and appropriately referring when there is a concern. Now once you see him -so the American Academy of Ophthalmology says before age four, you know, I'm saying at least before kindergarten as long as your doctor is checking them regularly, although if there's special circumstances like prematurity or family history or anything abnormal in exam, then obviously that you do want to see a pediatric ophthalmologist.

And then how often after that? Really I will just talk to the professional that you're seeing. I mean, I'm guessing every year if there's no history of problems at all, every couple of years is probably fine.

54:06

Remember though there are some eye disease that have no symptoms, I mean, glaucoma has no symptoms early on and so the only way to detect it early is by doing eye pressure checks. Certainly there's nothing about glaucoma that's going to make you want to go and see an eye doctor because you have some problems.

So if you weren't well and doing regular check ups that would be missed, and you would want to try to catch these things as early as you can. Now if glaucoma in particular, we do see most of them are a problem right at birth or around young infants and then we see another bubble up in the late teenage years.

It's not a disease, unless there's been some trauma that typically would show up in childhood. But that's not always true. There are famous cases of folks Stevie Wonder for instance, who have glaucoma and they did go blind during childhood.

55:00

So it is important to see him of you have that resource available to you and I think the eye doctors themselves would say, if they're interested in seeing kids, bring them in whenever you want and you know, every year too after that. And I think that's probably good advice even for kids who don't have a problem, But the reason I kind of go into a little bit more details is because not everybody has that resource available.

And so we have to sometimes be realistic despite recommendations from a professional organization. All right. So thanks for asking Ashley, hope that helps. I guess the bottom line is if you have school aged kids, I think it is a good idea that the snellen chart is probably not quite enough and you do wanted to see an eye doctor at some point in time. Doesn't have to be after they're born, no. But sometime during childhood I think it's important even in kids who don't appear to have a problem with their vision.

All right. So that wraps up our listeners segment. I do want to encourage you, these are all questions that I have received very recently.

56:06

So if you think, 'Oh I'm going to ask a question and it's just going to set, and it will be six months before it ever gets around to my question because so many people are asking questions. T

hat's not true at all. So I really try to pick a good variety of topics and the best questions that would appeal to the largest number of people. And so if you have a question, don't hold back on writing in because you think too many people are writing in because you think too many other people are writing in. Write your question, really, I'd love to hear from you.

And again it's easy to get a hold of us, just go to pediacast.org and click on the 'Contact' link or you can also email pediacast@gmail.com or, call the voice line is another way to get a hold of us. All right. We're going to take another quick break, and we'll be back to wrap up the show after this.

[Music]

57:27

Dr. Mike Patrick: All right. I really want to take a moment just to thank all of you for sticking with us here at PediaCast. You know, we've got some ups and downs, you know we were cooking there for awhile and then we had about a year off. And now we're back and the audience is growing and appreciate that.

It's not growing quite as fast as I would like and you know, the reason that -and we've talked about this before, the reason to grow the audience is not necessarily to toot my own horn and try to be America's pediatrician or anything like that at all.

58:00

The reason is because the misinformation that's out there on the internet. And I think there's a lot of parents out there who just don't know about this program and we just don't have the advertising budget to be able to advertise it nationally. And so that's where you come in and any word that you can give to fellow parents about the show and helping them to connect with it would just be wonderfully wonderful.

And so you know, parents that you see at church, parents that you see at the Y, parents you see at daycare centers, at your coworkers, just really if you could be an ambassador for this program, it would be very much appreciated.

Just to let people know that we're available at pediacast.org and maybe help them out you know, and everybody knows how to subscribe to an RSS feed or use a feed catcher and download programs. And of course it's just with the players on the site that you can be at your desk at lunch and listen that way as well.

59:03

But if each of you could just be an ambassador to the show, it would be just so appreciated. And probably one of the more important ways to do that is tell your doctor. When you go in for well check ups, for sick visits, just let your doctor know about PediaCast. We do have a resource tab available now at pediacast.org and one of the items that we have on that resource tab is a flyer.

It's a PDF that you can download and print, and it is perfect for bulletin boards, examination rooms, waiting rooms really just about anywhere just to get the word out about PediaCast and what we do, what we're about, and the fact that it's available. Also appreciate iTunes reviews, and a few of you have done that and I really thank you.

I kind of put out a call to action a few weeks ago, and a handful of people respond to that, but not nearly as many as listened and it really only takes about 30 seconds of your time, and you're getting this for free, you're getting tons of information for free.

60:04

And so if you could just take the time to let people know and head over to iTunes and give us a review there, that's helpful as well. So anyway also your blogs, and Facebook, and Twitter and all that really let us know.

And if you're not, we do have a Facebook page that you can be a part of and I'd like to grow that, I mean, right now it's pretty much, 'hey we're going to announce PediaCast', but if you want to have a comment about one of the shows, go there and you can start discussing, and of course with Twitter as well.

And those of you who listen regularly know that I don't go through this to end these much detail every single episode. I just kind of mention it, but it's something that each of you as individuals can really make a difference to the show if you get out there and get the word out. So anyway, again the way to get a hold of us pediacast.org, contact link.

61:02

You can also email pediacast@gmail.com and the voice line, is available at 347-404-KIDS. That's 347, 404, K-I-D-S. Hope everyone's enjoying the fall, you know, I had mentioned that in the beginning of the show that the fall colors are in full swing here in Columbus.

And our family is actually heading to Gatlinburg, we're excited about that. we're going to do some zip lining, and some hiking, and try to stay away from the bears as much as possible. So we're going to get out there and enjoy the fall weather and I hope you do as well get out there and be active with your kids.

And until next time. This is Dr. Mike, saying stay safe, stay healthy and stay involved with your kids. So long everybody.

[Music]

Announcer: This program is a production of Nationwide Children’s. Thanks for listening. We'll see you next time on PediaCast.

 

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