Not Just Growing Pains – Doctor’s Interview

What is spondyloarthropathy?

Dr. Lehman: The other name for that is enthesitis-associated arthritis. It’s a form of arthritis, which is fairly common in young boys and the early teenage years. It also affects some girls. It causes pain where the tendons insert into the bones, and it makes these children uncomfortable when they try and do things. They have pain when they’re playing sports, they’re often stiff when they wake up in the morning, and it interferes with their activity to be the normal, active teenage children they want to be.

How common is this disease?

Dr. Lehman: Spondyloarthropathies are very common if you’re looking for them. Probably the majority of them never get properly diagnosed, and the children are told just to get over it. But if you recognize and treat them, the children can be made to feel better, be more active, feel better about themselves, and do far better than they do if they’re not recognized and treated.

Why are kids with spondyloarthropathy not recognized? What are some of the common things pediatricians diagnose them with?

Dr. Lehman: Many pediatricians do not understand arthritis. They often say, “You ache and hurt, but it’s not swollen and your blood tests are normal, so you can’t possibly have arthritis,” and that’s simply not true. The rheumatoid factor test, which is what so many physicians rely on for testing adults, is not accurate in children. These children should not be rheumatoid factor positive. Many physicians rely on the sedimentation rate and think that you have to have an elevated sedimentation rate to have arthritis. Again, in the spondylarthropathies, frequently it’s normal. So these children come in complaining, the doctor does a quick exam, doesn’t really understand about joints, thinks the exam’s normal, says the blood tests are all normal, and concludes there’s nothing wrong with you. They think you’re just complaining or it’s growing pains.

Are you finding the diagnosis of growing pains to be given often when it is actually something more serious?

Dr. Lehman: It’s very common for children who have real arthritis and a more serious condition to initially have been dismissed by inexperienced physicians as simply having growing pains. Often the family itself has made the same assumption for a long time. I often see children who’ve had complaints for months where the family said they seemed better after a little while when they woke up in the morning so we didn’t think anything about it, or when they complained occasionally we said, “Oh, its just growing pains, and we didn’t pay attention. We didn’t even take him to the doctor.” Often when families do first take them to the doctor, the doctor does a quick exam, isn’t familiar with how good the range should be, and says: “Oh, I don’t know why he’s complaining. It must be growing pains.” When, in fact, these children have a real disease that needs to be taken care of.

What can parents look for to decipher between just growing pains and something more serious?

Dr. Lehman: Parents need to know that growing pains are something that occur usually just as the child is going to sleep at night or in the middle of the night, but that child is absolutely fine when he wakes up in the morning. If a child wakes up and complains of pain or stiffness, a child doesn’t walk right when they first wake up in the morning, or a child is complaining of persistent pain during the day, that should not be dismissed as growing pains. Not every child with those problems will have a serious or significant condition, but they all should be carefully investigated by an experienced physician.

What are some of the risk factors involved with these rheumatic diseases?

Dr. Lehman: Rheumatic diseases often run in families, and they often occur in families where there’s other rheumatic disease. They also can occur in families where there’s a strong history of frequent sprains. Often the family isn’t aware. Frequently, I’ll see families where mom has back pain or dad has bad knees, and they’ll always say, “Well, that’s because I played football in college or because I ran a lot.” They always have an excuse for these problems and don’t really recognize that there’s a family history of rheumatic disease. Other children develop these diseases with no family history at all. So family history is an important factor, but it’s not the only thing that comes into play.

What are the treatments?

Dr. Lehman: There’s a wide variety of treatments for children with rheumatic disease today. Many years ago, it was just aspirin. Now, we have far better therapies. We have a large number of different nonsteroidal anti-inflammatory drugs. If children don’t respond well to NSAIDs, we have drugs like Azulfidine (sulfasalazine) and Rheumatrex (methotrexate), which are far more effective. For children who have more serious disease or are not responding to those drugs, we have the new biologic agents, things like Enbrel (etanercept) and Humira (adalimumab), which are far more effective than the old drugs that we used to have. They can often make these children completely back to normal.

Are most of these drugs taken orally, or are some of them injected?

Dr. Lehman: NSAIDs are usually given orally. Methotrexate can be given either orally or as an injection. The newer biologic agents are destroyed by stomach acids so they have to be given as an injection, but it’s a very simple under-the-skin injection. Just like when a diabetic child is taught to give himself insulin, these children or their parents can be taught to give the shot under the skin. Often it’s only once a week. It’s a very simple process.

Could there be any long-term effects of a child having taken medication at such a young age?

Dr. Lehman: Sure. We always have to be concerned about anybody taking medication chronically, whether it’s a small child or an adult. Whenever anybody’s taking medicine, even something as simple as over-the-counter Motrin on a chronic basis, they need to have their blood work monitored by an experienced physician. Most people can take these drugs with no problem. But occasional problems do crop up. Someone needs to be monitoring the blood work and making sure that problems are not occurring for the child.

If parents take their children to the pediatrician and the pediatrician doesn’t seem to be giving any seriousness to their complaints, what’s your advice?

Dr. Lehman: That’s always a difficult situation. I know there are going to be instances when parents are complaining to the doctor that there’s something wrong with their child and the doctor is saying he doesn’t see anything. I try and teach doctors that if the parents continue to complain, they’d better think about what it is they’re missing, and I think you have to teach parents to be persistent. If you’re not getting a response from your doctor, then eventually you’re going to have to change doctors. But before that, you should try and sit down and calmly talk to them and say “Look, I’m really concerned about my child. I think you need to pay more attention to what’s going on here.” If you’ve read my book, one of the things it says is if you think your physician is ignoring things, take the book with you to the office and ask him to explain to you why you don’t have the problem that the book is talking about. Some parents will be wrong, but some parents will be right.

So you need to be tough and advocate for your child?

Dr. Lehman: You need to advocate for your child no matter what the disease. Always, if you think something is wrong with your child, make sure the doctor realizes that you’re concerned and that you think there’s a problem. If he brushes you off, either ask for further attention, and if you don’t get it, then go to a different doctor.

How are the rheumatic diseases diagnosed? What do you look for?

Dr. Lehman: Most of what you’d look for is pain, stiffness, limitation of motion, and especially in the spondylarthropathies, you often don’t see much swelling. Proper diagnosis of the rheumatic diseases includes listening to the family, taking a history, hearing about the problems the child has, and then giving appropriate blood tests to rule out other conditions. If you ask the right questions, it’s often very easy. But I often see children where their complaint is heal pain and people have been thinking it’s an injury that’s just not going away. When you ask the child about back stiffness, the child says: “Well, yeah, I am stiff when I sit for a long period of time. It’s difficult for me to get out after a long car ride.” You immediately have an indication that that child has arthritis, and that’s probably the cause of the heal pain. But if you’re looking at heal pain and you never ask about stiffness or pain in other joints, you’re not going to get the proper information and realize what’s going on.

Why did you write this book?

Dr. Lehman: I wrote this book because after many years in this field, I realize the biggest problem that’s delaying children from getting proper care is not that we don’t have proper drugs, not that we don’t have proper laboratory tests, but we don’t have enough physicians who are properly educated about the rheumatic diseases of childhood. These children need to be recognized and treated by experienced physicians, and pediatricians and family physicians need to know more about how to recognize a child with arthritis. If they keep dismissing them and delaying their care, that’s going to cause more damage. It’s not the fact that I can’t fix them when they get to me, it’s that they’re being delayed in getting to me or prevented entirely from getting to me because no one figures out what’s going on.

With the delay of misdiagnosis, how much are the kids deteriorating?

Dr. Lehman: It’s going to depend on each individual child’s case. Some children get to me, and there’s been very little damage that we can fix it. I’ve had other children who didn’t get to me until they were already in wheelchairs and you just look and say to yourself, “Geez, if you’d gotten to me four years ago, we could have prevented this.” Fortunately, now we can often undo that damage and get them back out of wheelchairs and restore them to normal function. But they’ve lost three or four years of their life. There is also the psychological effect of knowing he was hurting and having difficulty doing things and being told there was nothing wrong with him.

What have you heard from parents after they read your book?

Dr. Lehman: They’re very grateful. They’re grateful that somebody took their problem seriously, that somebody looked at their child and did a careful exam, and that somebody got them on the right track to getting better.

I think the key to all of this is finding a doctor who listens to what their patient says, does a careful exam and really evaluates the child’s problems properly so that you reach a proper diagnosis.

The title of your book, “Not Just Growing Pains,” is not meant to alarm parents, right? You’re just trying to inform them?

Dr. Lehman: Not at all. The first thing I want parents to understand is how to recognize when it is growing pains. Chapter one is when you don’t have to worry. These children probably don’t need to be taken to the doctor. But read the chapter and when you don’t fit this, then you need to know to go further and figure out what is going on. There are many minor conditions that don’t need medical attention. But you need to be sure that you’re not dismissing a serious condition because you assume it must be something minor.

Each of the chapters starts off with a typical story that describes the kind of problem and the kind of mistakes that get made. It’s just a matter of taking the time, spending the effort, and thinking about what the problem might be and doing the proper workup. Too many times people are in a hurry. They don’t do the proper evaluation. They don’t take the time to think about the problem.

This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week.