Protecting Your Child’s Health Long Term/Transitioning to Adult Care

Learn how to help your child transition from pediatric to adult healthcare.

Presenter: Ms. Kristen Beebe, Physician Assistant at Mayo Clinic Arizona


A pediatric stem cell transplant can come with life-long health concerns.  Starting to plan early can help to make the transition from pediatric care to adult care go smoothly.  Be aware of possible late-effects, involve your child in their medical care and teach them how to advocate for themselves.  


  • It is important to be aware of possible late-effects of transplant and the various screening tests for these issues. 
  • Start early when involving your child in their medical care – have them start keeping track of their medical histories, making appointments, raising their own questions and concerns with their providers.
  • Find your adult providers while you are still in pediatric care.  The overlap of care helps the transition go more smoothly.

Key Points:

02:58  Preparing to transition to a child to adult care should start around age 12 

03:39 It’s important to make sure your child understands their medications.  

07:35  Identify adult care providers while your child is still in pediatric care. 

08:51  Chronic health conditions are common after pediatric stem cell transplant.  Early screening can help prevent life-threatening complications.  Adult diseases like heart disease, diabetes, and cataracts can show up earlier is pediatric transplant survivors

09:47  It is important to stay up-to-date on screening guidelines because they may change as researchers and providers learn more about long-term survivorship after stem cell transplant

10:59  Pediatric stem cell transplant survivors have twice the risk of heart disease as their peers

15:01  Twenty to seventy percent of survivors develop lung problems after transplant. 

16:29  Transplant patients are at risk of both acute and chronic kidney disease 

19:32  Osteoporosis is a thinning of the bones and can happen at a young age in stem cell transplant

20:29  Screening and prevention of other cancers is important after a stem cell transplant patients. 

28:38  Set your kids up for success to manage chronic fatigue.  Schedule downtime and rests throughout the day. 


00:00   Introduction to Transitioning to Adult Care after Pediatric Transplant  So I want to talk about how we can be victorious through the years, because as you all know, the journey doesn't stop when transplant therapy ends, right? There are things that we need to consider for the lifetime of your children, and so we're going to talk about some of these topics.

00:20  Overview of presentation.  Preparing to transition from pediatric care to adult care, learning about late effects, becoming an advocate for yourself, inspiring purposeful living after transplant  One: how to prepare to transition survivorship care through the years to other providers, right? So right now you're at probably a pediatric facility or followed by a pediatrician or a pediatric oncologist, and what happens when your young child turns into a young adult, and then turns into an adult? And how do you ensure that they understand how to advocate for themselves through the years? Because they may run into providers who have never seen a transplant patient before, or even treated somebody who had a cancer or a noncancerous disease from childhood. 

We'll discuss the health considerations of the survivor and why this is important. Again, a lifelong journey. We'll review the symptoms and testing recommendations to screen for late effects. Again, trying to give you more knowledge because that's power to advocate for yourself. 

Collaborate.  I want to talk about the collaborative efforts that we are doing both with patients, as well as with other providers and researchers nationally, internationally to focus on the [different] facets of survivorship care and how we can improve that. And then ideas that inspire purposeful living after this experience because, you know, we all know our children want to get beyond this point and go out and live their independent lives, and how can we help them be confident in doing that.

01:44  More patients are surviving beyond transplant  So the reason why this is so important, as Dr. Burns talked about at the opening session, is that the horizon really is brighter. Patients are surviving diseases that they didn't use to survive. We're treating more patients with more indications for transplant, not just cancers, but also nonmalignant storage diseases, red cell disorders, immune disorders, and bone marrow failure syndromes. And again, by 2030, there may be a half a million long-term transplant survivors across the world. And again, at a national and international level, we really are working together. I need your help to improve survivorship care.

02:25  Why it is important to understand what to look out for and early screening  So the whole point of this is to have your children grow into being young adults. You wouldn't know it by just looking at their handsome smiley faces, but they've been through a long journey that doesn't wear on their outside personality, right, or their outside person, but inside there are things that we need to be watching for. And this is not to make you worried, but it's to understand the screening and the reasons why we need to find things early so that they don't impact their long-term life and their day-to-day living.

02:58  Preparing to transition to adult care starts at age 12.  Help your child learn to be independent with their medical care  Does that make sense? So preparing for transition really starts at a young age because a lot of times when kids go through therapy like this, they rely on their parents to make medical decisions, ask all the medical questions, understand all their medications and all the tests that they need. But eventually, they're going to need to do that on their own. And they may have been transplanted very young and don't remember all of those things. We really do find that research tells us that starting at 12 years of age is super important because there's so much for them to learn.

03:31  Have your child keep track of symptoms and questions  It's important for them to bring a journal with symptoms and concerns and questions so that they feel comfortable talking to providers.

03:39  It’s important that your child understands their medications.  Encourage your child to speak one-on-one with their provider  Be able to explain what their medications are, maybe not the exact name, but why they take it and know when they're supposed to take it, because it gives them some control too, and some onus on their medical care. Spend some one-on-one time with the provider, you know. So sometimes right around age 12 I ask the parents to kind of step out so I can spend a little bit of time one-on-one with them, so they know that I'm not a frightening person, that they can be honest and open with me and tell me symptoms that they may be having.

04:11  Have your child start calling to make their own appointments.  It is extremely important to help them understand how to navigate the healthcare system  And then this sounds a little strange, but [your child] could start calling to make appointments because if you've ever called to make an appointment you know it can be very complicated and it can be very frustrating when they're thrown into that world and they have to do it on their own. That's one of the reasons why they get lost to follow-up, because it's too complicated for them and it's too hard for them to navigate that system.

04:34  Usie technology to set reminders for medications, refills, and other healthy living prompts  You know, put reminders on their phones. They all have smart phones, I'm sure, or know how to use yours, or an iPad. This way they can keep track of when they need refills on their medications and they can maybe start saying those things,or setting alarms on their electronics to do exercise once a day, or to eat a healthy meal, or have a snack, or drink their water, whatever it may be.

04:59  Your child needs to understand their medical care and appropriate developmental milestones   And I gave you two handouts. I'm not going to go through them, they're just for reference for you, but they, the green one is kind of the different things that your child will need to know when they go out into the medical world and take over their survivorship care. The gray one is kind of an age appropriate developmental list, not only of things that they can understand from medical interaction, but also developmentally. 

So how do we help them prepare to be independent? Because sometimes when they're sick as a child, they don't learn things like chores, or it's hard to; they don't learn things from their peers about responsibility because they've been out of school for a while. So, this just kind of gives you a guideline of what developmentally your kids are able to really start retaining and being a part of.

05:55  Empower the survivor to advocate for themselves.  Assess your child’s knowledge of their medical issues.  So, the whole goal here is to empower your survivor. And each year we want to assess their knowledge of one or two health issues, as it relates to their specific late effect risk, and so their survivorship care plan. So, an example that I always start with, even with kids under 12, is what does that thing we do when we squeeze your arm every time you come in?

Ah, answer- blood pressure. Exactly. And we do that because we're looking for high or low blood pressures and your blood pressures are associated with your, do you remember? Can be associated with your heart rate, but what organ controls your blood pressure? Some people think it's the heart, but it's really that kidneys. Okay? And so we know some people are at risk for late effects to their kidneys, so blood pressure can be one way to monitor for that.

 So I always ask the kids to say, "Hey, what was my blood pressure when I came in?" And they're supposed to say if the person tells them, oh, it was a little high, but we don't worry about that, because sometimes people get nervous when they come into the doctor's office. I teach them to say, "No, I've had a bone marrow transplant. So let's pay attention to that. What do we need to do next?" You don't have to know the answer about what to do next, but you have to ask the question. Right? Good job.

07:15  Having your child fill out their own health histories helps them to start thinking about and understanding it  And then the other thing is have them fill out their own health histories, because then they start to learn their family history. They're actually doing the information, you're actually talking about it. I realize at my age that I don't necessarily know everything about my own family's history and I'm in the medical field. So, it's just something that we don't always think about to share.

07:35  Identify your child’s adult provides while you are still in pediatric care.  Choose a Med-Ped or Internal Medicine physician.  You want to give your new primary care provider time to get to know you and communicate with your pediatric provider before you transition completely   I think the other important thing is to identify your adult medicine provider while you're still with your pediatric providers. There are different kinds of physicians and practitioners: one called Med-Peds, so they see both, they're board-certified to care for both pediatric and adult patients, family medicine as well. And then internal medicine, they have a great understanding of all of the late effect diseases that we tend to see, but they don't start seeing patients until they're around age 16. But either way, you want to have at least three years of overlap so that the person who knows you well can talk to the person who's getting to know you.

And I think the other thing is it's important to schedule even just a regular visit with that primary care physician so they do get to know you because not always when you're sick, do you get to see that person that's identified as your primary care provider, right? Sometimes you see everybody else in the practice because they have the open schedule. The important part is to develop a voice and be self-advocates, and that helps to prevent that feeling of abandonment or being lost in the shuffle because I can tell you going from pediatric medicine, to adult medicine, you feel that way anyway.

08:51  Chronic health conditions are common after pediatric stem cell transplant.  Early screening can help prevent life-threatening complications.  Adult diseases like heart disease, diabetes, and cataracts can show up earlier is pediatric transplant survivors.  So the reasons why we're talking about this is because late effects are common and require lifelong monitoring. More than 60 percent of survivors will have at least one chronic health condition, and just under a third will develop a severe life-threatening condition. But the reason why we screen is to prevent the toxicity, or the mortality, or morbidity related to that complication. The other reason is because the rates of adult diseases, things that we think of like diabetes and heart disease and cataracts, are four to nine times higher in survivors, and they show up decades earlier. So when you think about those adult diseases, you think about them at 50, 60 years of age, but in the pediatric population you can see those things in their early twenties, and not everybody will be thinking of those things when they see your young adult.

09:47  It is important to stay up-to-date on screening guidelines because they may change as researchers and providers learn more about long-term survivorship after stem cell transplant.  Right now guidelines Children’s Oncology group guidelines  So we want to talk about being a survivor and staying one, and as Dr. Burns talked about, there's research going on, it's an ever-changing research. So what we recommend for screening this year, may not be what we recommend for screening in three years because we'll learn more and more information as we collect the information, the data over time.

But, the Children's Oncology Group has really laid the groundwork for more than 30 years, at looking at cancer-related toxicities from therapy, but as you know, a lot of those therapies are things that we use in bone marrow transplant, even for non-cancerous diseases. So we follow those guidelines until we understand what it really means moving another 30 years forward.

The CIBMTR guidelines that Dr. Burns talked about, and then there's the NCCN guidelines, and those are adult guidelines. So for patients who are maybe young adults who developed cancers in their teenage years, like thyroid cancers, or those kinds of things that we don't transplant for, but we follow those guidelines if they develop them.

10:59  Pediatric stem cell transplant survivors are at a higher risk for heart disease.    Okay, so let's talk about heart disease.  Heart disease, the incidence is at least two times higher than their peers, and the risk factors are anthracyclines. Anthracyclines are that red medicine, the daunorubicin, the doxorubicin, the mitoxantrones, if you've heard those medications.  And this is where the care plan comes into play, because it's really important to have those things written down so that when you go to your next provider, they see that you had this amount of that medication and this is what you're at risk for.

If you have high blood pressure, then that could increase your risk of having heart disease. If you've had high cholesterol, which sometimes patients get with the medicines that we use for prevention of graft-versus- host disease - tacrolimus and cyclosporine. If you've had total body irradiation it increases your chances of heart disease, and then you can't get away from family history. So, if you have a family history of heart disease, that plays into your child's risks as well.

And then their lifestyle. So, a lot of times they're sedentary for a while, they don't get to get out and have a lot of activity because they're weak, fatigued, maybe they have had poor nutrition because of the side effects of treatment, and building that over the course of their life is super important because it really is a lifestyle change.

Types of diseases. They can have diseases with the valves of the heart, they can develop irregular heartbeats, or what we call arrhythmias. They can develop congestive heart failure where the pumping mechanism of the heart doesn't work as well, and they can be at risk for having heart attacks, which again is an adult disease we don't think about. This doesn't mean that everybody's risk is the same. So if you were transplanted for severe aplastic anemia, versus leukemia, versus sickle cell, your risk isn't exactly the same across the board, but if you've had the exposures we screen for these things, does that make sense?

13:04  Noting and reporting symptoms is always the first line of screening.  EKGs and cardiac Echos are standard screenings for heart problems.  Stress tests are not as common but may be recommended if your child wants to play comitative sports.  The screening, first and foremost, in every one of these, is symptoms. Asking the family and the patients if they've noticed any changes in exercise tolerance, shortness of breath, weakness, leg swelling, any chest pain or atypical chest pain, nausea, that kind of thing. The screen can be an EKG, which checks - its the stickers that check the electricity of the heart, and that helps us to know the rhythm of the heart. And then the echo is the ultrasound that helps us to be able to understand the strength of your heart muscle. And then there are things that aren't mainstream right now, but we certainly know if they're at risk for heart disease and they want to play in a competitive sport or something like that. At least at our center, we consider stress tests to make sure that under stress the heart does and functions well.

13:57  Healthy diet, exercise/physical activity and play, and avoiding unnecessary chemicals (like smoking) are important in preventing heart disease.   So heart disease prevention. Number one: we don't want to add chemicals that we don't have to -  we didn't have a choice, we had to have chemicals before to get the transplant, but now we have a choice if we add more chemicals.

So no smoking because that certainly increases your heart disease risk. Being active, you don't have to run, you can walk, you can do yoga, you can, you know, climb a tree, you can swim in a pool. It doesn't have to be, you know, in kids, just 30 minutes of active play - riding a bike, riding a skateboard, those kinds of things are very good for them.

And then watching their diet. Adding back in the fruits and the vegetables because I know that when they get chemotherapy, it's very hard to tolerate certain foods. Their tastes change and they really want bold, spicy, hot cheetos on a regular basis, and that, that's fine to get them to start waking up their taste buds, but that's not the way that they're going to fuel their bodies for the rest of their life.

15:01  Lung disease can occur after a stem cell transplant.  Certain medications, past ventilator support, or multiple lung infections can increase this risk.  Monitoring symptoms like shortness of breath is an important part of screening and regular pulmonary function tests may also be required.  Lung disease can also happen. The incidence can be anywhere from 20 to 70 percent of long-term survivors and again, depending on your exposures, but medications like busulfan, BCNU for lymphoma patients, having multiple lung infections can increase their risk of having lung toxicities, and if they've had graft-versus host disease, the lung is one of the areas that could be affected. And then if they've ever needed previous ventilator support, if they got septic or they were down in the ICU and they needed a ventilator, we just want to keep a close eye on those patients.

And the screening against symptoms, any cough or shortness of breath when you're walking or running. And then the screening is pulmonary function tests, so they sit in a booth and they take a deep breath and blow real hard, right?  Um, and those are varying frequencies depending on the institution, but should be done at least yearly. If you have graft-versus-host disease at our institution, we do it at least six weeks after you were diagnosed and we try to do it every three months, if not sooner, depending on symptoms.

16:14  Avoiding exposure to harmful chemicals (like smoking) and swimming for exercise can help prevent lung disease.  And the prevention of lung disease. Again, no adding chemicals, but the other thing is swimming is actually a really good therapy or good exercise for your lungs, and not just splashing around, but actually, you know, making some laps.

16:29  Transplant patients are at risk of both acute and chronic kidney disease  Kidney disease is something that affects a lot of our patients, both in the acute setting, so when they go through transplants, we have medications that affect the kidneys -  antibiotics, lasix, those kinds of things. And then they're at risk then for chronic kidney disease, which is the, you know, the lifelong, renal problem that needs to be monitored.

16:57  Chemo, radiation, graft-versus-host disease, and other complications of transplant can increase risk of kidney disease  Chemotherapy increases the risk of kidney disease, so does radiation, so do complications of transplant, like an SOS or VOD. The previous need for dialysis and graft-versus-host disease, a lot of times because they're on medications that can irritate their kidneys for a longer period of time.

17:17  Blood pressure monitoring and checking the urine for protein are two important parts of screening for kidney issues.  The screening is blood pressure monitoring like we talked about earlier, also checking the urine for protein because if there's a lot of spillage of protein in the urine, that tells you that they're, the kidneys, are working harder. And at our institution, we actually have a kidney doctor, who is also called a nephrologist. And I think the medical terminology that we use is really important to have the kids learn as well. So that kidney doctor or that nephrologist, they know that they're one in the same. But we use GFRs, which is just a formal test to look at how the kidneys filtrate, and we do renal ultrasounds to make sure that structurally the kidneys look okay, as well as they grow with the child.

18:01  Drinking water is very important in preventing kidney disease.  Your child should also avoid NSAIDs like Aleve® and Advil®  Does that make sense? So kidney disease prevention: number one is drinking plenty of water, staying hydrated. And that can be hard when they go back to school, when they get out on their own, but it's really very important. And avoiding things like ibuprofen, things that are readily available over the counter, if they have renal issues, is important. Now, if they're having pain and they are self-medicating with NSAIDs like Aleve® and Advil®, it's important to get that checked out to see if there's an alternative to help them with that. And we really try to avoid MRI contrast dye if that formal test, that GFR, or even we can estimate it off of blood work, is less than 30 because there can be some long-term problems with that.

18:53  Cataracts are common with prolonged steroid use or radiation.  Other adult diseases, cataracts, those are fairly common, especially if they've received steroids for a prolonged period of time or radiation.  And it can cause clouding of the vision, so it can make it hard for them to see in school. It's very important to go and see an ophthalmologist, not only to have the outside of the eye looked at, but also dilated to look at the blood vessels and make sure that the pressures are good in the eye. The nice thing about cataracts is that it's reliably corrected with surgery, although still sometimes after surgery they need to have glasses.

19:32  Osteoporosis is a thinning of the bones and can happen at a young age in stem cell transplant patients.  And osteoporosis is that thinning of the bones. It can happen at a very young age in our transplant patients a lot, again, partly because of nutrition and inactivity, but also then because of medications that we need to put them on, like steroids, they all have low vitamin D levels and so replacing that is important, lack of activity. And then for the young gals and young men who don't develop puberty on their own, those female and male hormones actually help with our bone mineral density, so it's important to be following that.

20:04  Weight-bearing exercises can be as simple as walking and can help to strengthen bones.  The nice thing is that weight-bearing exercises, anything where you're putting weight on your bones, which is walking, it can be as simple as walking, low weights, those kinds of things, help to build and drive that calcium and vitamin D into your body. And then we have a nutritionist who helps to assess how much calcium you're getting in your diet, and if they're not getting enough, then supplementing that would be important.

20:29  Screening and prevention of other cancers is important after a stem cell transplant.  So this topic is very difficult because it invokes a lot of fear, and I recognize that, but the other thing I want to say about other cancers is that prevention and screening is really important and not all cancers are the same for which you go through bone marrow transplant. Not all cancers mean that you need to see an oncologist. Not all cancers mean that you need chemotherapy. Not all cancers mean you need radiation, but it's still something that invokes fear and I recognize that.

20:59  We watch out for breast cancer especially in lymphoma patients and those that have gone through radiation  One of the cancers that we watch for is breast cancer, especially in the lymphoma patients who have had mantle radiation. We watch for it in total body irradiation patients as well who have got like 1200 centi gray, which is a lot of what we do in transplant. Right now the recommendation is screening mammogram at eight years post radiation, or by age 25, and some centers actually are using MRI as well.

21:33  Regular screening for thyroid cancer is important after transplant.  Radiation exposure and alkylating medications are risk factors for developing thyroid cancer.  Thyroid cancer is another one, and the risks are radiation exposure, and then alkylating medications like melphalan and busulfan. The screening used to be exam, and at a lot of centers it still is that way, but at our center we do ultrasounds every three years to try to pick up abnormalities early. And the nice thing about thyroid cancer is that even if it's advanced when it's found, the outcomes are excellent, greater than 95 percent survival rates for surgery and sometimes radiotherapy. That kind of cancer is actually followed by an endocrinologist because one of the other really important aspects of treating thyroid cancer is suppressing the thyroid hormone with taking thyroid hormone. So they're very good at following our patients for that.  So I start at any age, anyone who's had more than 50 centi gray of radiation, and it starts three years after their exposure to radiation and every three years after that. Now the other thing I will say is that thyroid cancer tends to be a later cancer, so more like six, seven, eight years out. But, girls tend to be more at risk.

22:47  For patients who have received more radiation to the abdomen, screening for colon cancer should start around age 35  Other cancers, colon cancer, again, if they've had radiation to the abdomen, like in neuroblastoma patients, or just total body irradiation, their risks are different. So total body irradiation, we still say around age 50, and every 10 years for a colonoscopy, that's the same as anyone who hasn't gone through transplant. But if they've had more radiation to the abdomen or they're having symptoms, then it's important to start colonoscopy at age 35 and then every five years. So the frequency is more, of screening.

23:21  Bladder cancer is rare but BK virus and Cytoxan are risk factors.  Bladder cancer is a rare cancer, but the risks are radiation, BK virus and cytoxan, and the easy part of screening is that you can just check a urinalysis, and in a non menstruating young gal, you shouldn't see any blood. And in a boy, you shouldn't see any blood either, so if you see blood then we should be talking about that. You may not physically see it, but on our urinalysis we look for that.

23:50  Skin cancers are a common secondary cancer after stem cell transplant so it is very important to be monitored for that.  Radiation, graft-versus-host disease of the skin, and medications used to treat skin graft-versus-host disease are all risk factors.   Skin cancers are probably the most common. So when we say that the risk of secondary cancers can be as high as 12 percent over 15 years, most of them are skin cancers related to radiation, sometimes graft versus host disease of the skin and the topicals that we need to use to treat that. And then if you have a family history or are fair skinned and at a greater risk for skin cancers anyway, we very much need to monitor you. Screening exams and at our institution we have the luxury of having dermatology available in our institution, from top to bottom, including the scalp. It's really important. And in the patients that have received radiation or are at a higher risk for squamous cell carcinomas, I do recommend the HPV vaccine. That is human papilloma virus. You see it on the TV a lot, talking about a genital-related cancers, but we want to prevent squamous cell carcinomas that can even be virus mediated.

24:56  It is important to look out for secondary cancer of the liver, but you should also watch for signs of high cholesterol, fatty liver, fibrosis, cirrhosis, iron overload, and inflammation  And then the liver, There can be second malignancies that happen in the liver, but there's other, just basic liver toxicities that can occur as well. They have high cholesterol, they can get fatty liver. If they've had a lot of transfusions they can get iron overload, and iron is a heavy metal and can cause inflammation and fibrosis and cirrhosis in the liver over time. So at our institution, we have a phlebotomy program, which we're hopeful will help to reduce these long-term side effects. But is important if liver functions change, that even a consideration of seeing a hepatologist or a liver doctor would be helpful.

25:40  Protecting your skin from the sun can help prevent skin cancer  So the take home message is while cancer invokes fear, it's really important to prevent. There are things we can do for skin cancers, which is sun protection, and I think we say it at nauseum, wear the hat, sunglasses, sunblock, get screened and then don't add additional risk factors for cancer.

26:02  Chronic graft-versus-host disease can by a systematic disease and can contribute to other late effects after a stem cell transplant  I'm not going to talk too much about chronic graft-versus-host disease except to say that it is a known side effect of transplant and if they have it, it increases their chances of having late effects. And chronic graft versus host disease is different than what we think about for acute graft-versus-host disease because when we think of acute, we think of liver, skin and gut, right? Well, in chronic graft-versus-host disease, it can be a systemic disease and that can affect hair, mouth, ears, I mean eyes, sorry, liver, lung, muscles. And so it's really a comprehensive approach to those patients.

26:42  And chronic graft versus host disease really does impact the quality of life of our patients. So it's important that we address all of these issues, like nutritional issues, physical changes, infection that can happen and increase late effects, obstructive lung disease, risk of malignancies and blood vessel disorders.

27:10  Pain and other medical issues can contribute to chronic fatigue after a stem cell transplant  Chronic fatigue is very common as a late effect. It usually does get better within the first one to two years, but then sometimes people can plateau and that can be very frustrating. So looking for medical reasons for that, pain certainly can increase your fatigue because you're always dealing with the pain and putting energy towards that.

27:36  Low thyroid hormone can contribute to chronic fatigue.  The thyroid is very sensitive to chemotherapy and radiation.  Treatment for low thyroid is simple  Low thyroid - the thyroid gland is actually responsible for our metabolism and our growth and our energy and when it's low, because the thyroid gland can be very sensitive to chemotherapy and radiation and peter out over time, that can be one of the symptoms. The nice thing is that the replacement for thyroid is a pill that you take every day. Although I got to tell you, I take, I've been doing that for 15 years and I forget. So it's not it definitely changes your life to have to do something everyday, but it changes your life in a positive way to feel better.

28:08  Low growth hormone can contribute to chronic fatigue.  Some people have low growth hormone and generally, we think of that for height, you know, we talk about it as, you know, how tall is your child getting and should we give them growth hormone for that? But sometimes as they become older and after they've grown, they can have growth hormone deficiency in young adulthood or in adulthood, and you can use growth hormone to help with that sense of fatigue as well. And the other benefit is that it can help decrease heart disease and osteoporosis.

28:38  Set your kids up for success when managing chronic fatigue.  Schedule downtime and rests throughout the day.  When you're dealing with chronic fatigue, it's important to respect the fatigue and do things and set yourself up throughout the day to be successful. Encourage nutrition - snacks throughout the day, Encourage rest. So if it's hard for a child to go from school all day to a fun activity they want to do at night, I still want them to be able to do the fun activity, maybe plan in some downtime, so they have some rest. Encourage, and this is difficult for us to do as adults, so I think it's important to teach them as children, to delegate things or not put everything in one day. Sometimes my kids keep their chores until the weekend and then they get exhausted because they have to do it all in one day. Well, in this situation they still should have chores, but maybe they do it on Mondays and Fridays when they have their fun activities on Thursdays and Sundays. Do you see what I'm saying?

29:33  Many different things can cause headaches after transplant.  Headaches are also very common after transplant, and there can be multiple reasons for having headaches. But one of the things that's important, if they've had an underlying diagnosis of neurofibromatosis, which can couple, but not always, the diagnosis of neuroblastoma or JMML, or, excuse me, JMML, then you want to consider MRI screening for secondary CNS tumors. If you have headaches that change in quality and caliber over time, meaning that they are worse in the morning, and better as you're up and moving around, worse again at night when you're sleeping, and excruciating in the morning, that should trigger an evaluation with a neurologist. A lot of times it's multifactorial. It's nutrition related, it's activity related, it's stress related. Sometimes it's functionally hard for them in school. We'll talk about some neurocognitive things in another session, but those can add to stress and tension headaches.  It's important to have eye exams to make sure that they're not straining to see up close or far away, which can contribute to headaches as well. And then a neurologist can help with not only therapeutic options for headaches, especially if they have migraines, but also prevention. Using things like magnesium, Riboflavin and vitamin D as prevention. And then medications, I don't want to forget about newer therapies like botox sometimes can be very helpful for refractory headaches. Gabapentin is an anti-nerve pain medication that can be helpful. Beta blockers can be helpful if you have migraines, and then alternative therapies like osteopathic manipulation, acupressure, meditation, those kinds of things can be helpful as well. Maybe for kids, yoga, to start with.

31:36  Chemotherapy and total body irradiation can cause neurological problems and as your child gets older and school becomes harder, these changes can become more apparent  I'm not going to talk about the neuropsychological at great length because actually the session right after lunch in here will be about that for your kids. But they, we definitely know that chemotherapy and total body irradiation can increase the chances of having neurologic problems over time. And over time, as tasks get more complex, especially in school as they get older and are taking harder classes, or they getting into college, and they have to multitask a lot, that can become much more prevalent and really distressing because they're trying to move on, they're trying to get out there and be independent and they feel pulled back a little bit.

32:20  Visual learning impairment, verbal learning impairment, and decreased processing speed are common neuropsych changes after a stem cell transplant  They can have visual memory impairment, verbal learning impairment. So sometimes it's important to do learning when they're doing their homework, do both visual and learning and verbal cues to help them remember information, saying it out loud, writing it down on note cards and sometimes associating it with something that they enjoy can help deepen that memory. They can have attention difficulties. So they get easily distracted by noise or by visual cues. So sometimes they have to be, when they do test taking and that kind of thing, they need to be in their own environment or away from the rest of the class. Sometimes, they have decreased processing speed so they need longer times on tests and quizzes and those are all things that you can discuss with your educators at school as well as neuropsych testing can be very helpful at identifying those things and giving the schools feedback so that they can have 504 plans or IEPs as necessary.

33:26  And then the treatments, there are treatments out there. One, our neurocognitive rehabilitation, usually done by either a speech therapist or an occupational therapist, that helps them do repetitive movements and tasks that help kind of drive their memory.

33:45  A transplant can have long terms effects on insurance, employment, and education.  Talking to a financial counselor can be helpful   And we know that financially, a transplant can affect them long-term. It can affect their education and it can affect their ability to secure the career that they wanted to have. Insurance coverage is a big issue. So in our state around age 26, children are usually no longer eligible to be on their parents' insurance and have to find insurance on their own. So getting financial counselors involved to help with that early on in their early twenties would be helpful.

34:19  Seek out a high need case manager at your insurance company  Case managers, high need case managers, can be helpful at insurance companies. So if you have a lot of testing, or a lot of specialists that you see, they can sometimes help you navigate that system and help with authorizations and that kind of thing, especially if the institution that you work at, they don't have those services available. Not all institutions have those people available to you.

34:46  There's legislative work that's going on right now. So if you are politically inclined, especially for the young adults, there's a group called Critical Mass is in Washington right now talking about things like college deferment on loans, fertility issues, insurance issues for long-term, and so there's some good people that are really out there advocating for you on your behalf.

35:15  If your child becomes disabled after transplant, it is important for you and your child to understand their legal rights  The American Disabilities Act is also really important if your child becomes disabled because of some of their toxicities from transplant. It's important to understand their legal rights and vocational rehab is something that can be very helpful. Some of the young adults, you know, had a certain career in mind and then they developed, like a stroke-like effect from their disease and they're not able to do that now moving forward. But helping them to re-identify with a new purpose, a new thing that they could do that they didn't know was maybe their forte is out there and available to them.

35:56  Always working to improve treatment and prevent late-term effects  And then as Dr. Burns talked about and I said earlier, we really are as a medical group, both nationally and internationally, looking at ways of improving survivorship care, not only building survivorship programs and developing late effects screening, but also preventing late effects and reducing toxic exposures. So we're doing different kinds of transplant than we did before. Sometimes we use immunotherapy more than we use chemotherapy, and sometimes we use things like CAR-T, and other things to treat before we go to transplant. So those things are out there and we're doing that

36:31  Lots of good advocacy groups out there  And then groups like this, BMT InfoNet, Be the Match, Team Cancer, Imerman Angels, Stupid Cancer - I could fill up probably 42 slides with all the people who help with supportive care to help the survivors thrive in their new normal. So if any of these, we really do want to hear from your point of view because it helps us guide our research and our therapies moving forward.

37:02  So in summary, encourage self-advocacy for your kids, for their health, acknowledge their voice - they have one. Validate the turmoil, all the challenges that they have gone through and may go through in the future, but help them navigate their new normal and inspire that purposeful living because they all just want to know: Why am I here, who am I going to be?

37:23  And thank you, then, to our fighters, survivors and families, and to the community that really comes together to educate and problem solve. And to the people who fund and participate in research.

37:35  Question from audience about college after transplant:  I am the parent of a 20-year-old transplant patient who lives independently, on her own, who also has physical disabilities due to chemo, or the therapies. But my question is, in terms of college experience, and some of the effects, do you have some good knowledge about kids that have survived? She got support in high school, you know, like she had a 504 plan, but I worry about college and she's thinking about it. But she has lost some of her organizational skills for sure, and I just would like to get ideas about college or future education for somebody like her.

38:18  Ms. Beebe responds: I think that it's really important to meet with the college and the counselors because there may be simple things. Like I had a young adult who felt embarrassed that he had to record the sessions because he was afraid he was going to miss things. So he was kind of hiding that and he felt embarrassed to bring that up. It was harder for him to pass quizzes because, while he had longer time on tests, the quizzes weren't part of his plan or under his teacher's watchful eye. So having that communication and making sure.

I think one of the things that we're missing, at least at our institution that we're trying to kind of deal with, is somebody who has a masters level education and can advocate on behalf of the families and the children in schools. Children's Cancer Network at our institution has done a great job of putting together back to school programs, like explaining what they have gone through and some of the challenges they may have just to the population of students in general, in hopes to help decrease bullying and feeling segregated and those kinds of things, more of an acceptance.

But from an education standpoint, I think there's a couple families in here that know that they have to really advocate for their own child. Neuropsych testing can be very helpful because it can help identify some of the areas that your child may struggle with, or your young adult may struggle with and ideas to help them manage their time, manage their fatigue, manage their attention around issues or you know, their education. So some of the things that I think of is trying to do the most difficult classes in the morning, and then having, you know, two or three hours before they have their next class so that they can feel a little more refreshed and be able to retain information. Recording lectures is really important, and working in study groups, although sometimes they feel self-conscious about that because other people are getting it a lot quicker than they are. Does that help?

Actually, one additional comment. Some of our transplant survivors who are now in college have found that living close to the campus - so that they can go back to their room and take a nap between classes - so not necessarily trying to live off campus significantly and then having to commute back and forth to campus, has actually helped significantly as well. So both arranging your in-class schedule, and also your life to recognize that sometimes you do need the breaks and you need to set yourself up to be able to take those breaks and be successful with it.

And we've had other people who haven't been able to do a full schedule because of their fatigue, or their physical limitations, but continuing school through the summer has been very helpful because they meet a new group of people in the summer, and they're continuing that organization and that pattern, you know, all through the year. They're not taking a big break and then trying to get back into the swing of things. Does that make sense? Okay. Thank you very much. Thank you. I really appreciate it.


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