How to Communicate Effectively with Your Child's Doctor

I originally wrote this in July of 2009.

How to Communicate Effectively with Your Child's Doctor

Effective communication is a key ingredient in receiving the best health care for your child. As a parent, you are your child's best advocate and have the responsibility to ensure you are making the best choices for your child's health care. The only way to ensure quality of care is to be an effective comminicator with your child's doctors.

Before the first visit, make a list of symptoms your child has been experiencing. You will want to make a list of all medications and supplements your child is taking and write down any questions you have for the doctor. By writing these things down, you ensure that you do not forget any important details. This comes in handy if your child becomes fussy during the appointment. Fussy children are a distraction and often cause parents who do not have everything written down to forget key pieces of information.

At the first visit, be open with your child's doctor. Explain what your expectations are for communication, treatment and care. Make sure that you understand how results will be reported to you. Will the doctor call with results? Will the nurse call? Will results be available online? You need to be sure to find out office policies regarding reporting results, as well. 

Take notes during appointments. Write down the details of any procedures the doctor suggests and be sure to write down any medication instructions given at the appointment. I have found myself at the pharmacist and had the pharmacist ask, "Did the doctor tell you how this medication was to be given?" I usually write the answers to my questions next to the question in my notebook, so that I can review it again later. Do not be afraid to ask the doctor to repeat his answer. I have even asked them to spell words that I think are important to my understanding, yet do not know how to spell. 

If you have a sensitive topic that you would like to discuss with your child's doctor and you would prefer your child not to hear, ask the physician to discuss the matter in the hallway.

When you arrive home, review your notes and write down any questions you think of as you review the notes. I always keep the medical notebook handy so that I can write questions down as they pop into my head. I have often faxed or emailed my questions to the doctor in advance of our appointments so that the doctor can have his answers prepared when we arrive. 

If the doctor is part of your child's health care team, let him know what your expectations are in regard to communicationg with the other health care professionals on the team. If you expect the doctor to send reports to the other team members like your child's pediatrician or other specialists, then you need to let him know. Often times, the office has forms to fill out regarding who is sent copies of appointment notes.

If the doctor is unable or unwilling to fulfill your expectations, find a doctor who is willing to work with you. If your child's physician is not willing to spend time to answer all of your questions or listen to your concerns, it is time to move on to a doctor who will. Your child is precious and you are your child's best advocate. Through open communication, you can ensure that your child will receive the best care possible from his physicians. 

Beyond the Second Opinion: Is There Hope?

I wrote this back in May of 2009 - in the years after I wrote this, we've met at least 10 families with children the state accused of "medical child abuse"- many of whom whose only "fault" according to the state was seeking too many opinions. I believe that parents have the RIGHT to seek as many opinions as necessary.... but I would caution that hospitals now employ special physicians who look oout for families who seek too many opinions. 

Beyond the Second Opinion: Is There Hope?

Children with multiple health issue often require numerous specialists to care for their many needs. This can often leave parents feeling like the appointments are unending. When these appointments do not lead to fruitful, tangible results for the child, parents often wonder when enough is enough.  Often times, second opinions are sought to seek alternative treatment options. How many opinions are too many?

I do not believe there is such a thing as too many opinions when an effective treatment has yet to be found. As parents, we can never give up hope that viable treatment options exist. Certainly, there are exceptions, but I am here to tell you: do not be afraid to seek a second, fourth or fifth opinion. In some cases, it may be the seventh opinion that brings answers and an effective treatment for your child. Yes, you read that correctly, I said that it may be the seventh opinion that brings answers. Unless you seek, you will never find the answers. 

Do not be afraid to speak openly with your child's physician about your concerns and lack of an effective treatment. Do not be afraid to speak to your child's physician about wanting a second opinion.  I have found that the best doctors are the ones who are not afraid of second opinions. If a doctor geys a bruised ego, it is not your problem. The doctor needs to deal with it. Your job as a parent is to care for your child and to find the best medical care and treatments. I like to use the analogy of a football team to explain how I view things. 

I am the coach of our boys' medical team. Our pediatrician is the quarterback and the specialists are the other "team players" on the playing field of medicine. On the field, the quarterback calls the shots while the other players must comminicate and work with the quarterback to make the plays effective, thus leading to a score, and hopefully a winning game. The coach is in control of who goes in and out of the game. Bad attitude? Not a team player? You get benched. I am more of a college coach. Let's say, I am Les Miles. I go around the country, if need be, recruiting players who can fix the problems we have to make us a winning team. I'm not afraid of egos or stepping on toes, because my focus is on winning the game as a team with the best effective treatment for my children as a trophy. If all the players on my football team keep their eyes on the trophy, we will win the game.

Had I stopped searching for an effective treatment for my son after a few opinions, we would not be where we are today.  It is because of my persistence in pursuing effective treatment for him, that he can now go through the day without visible complications from his having a neurogenic bladder.  If we had stopped searching after opinion number six, my son would stll have uncontrolled high bladder pressures that could cause permanent kidney damage. We knew something was wrong by the time he was five years old, at nine he had neurosurgery and finally at eleven and a half and seven opinions later, we found an effective treatment plan.

All seven doctors agreed that my son had a high pressure, neurogenic bladder. All seven doctors agreed that we must monitor his kidneys frequently to ensure that he had not developed kidney damage. We spent years trying bladder training programs, biofeedback and various medications. None of these treatments was effective. Our first urologist moved away and left us with a second doctor who discontinues biofeedback. We left this physician after many trials. Doctor number three agreed with the previous two, tried new medications and one day declared, "Some children just leak urine their entire lives,' right in front of my son, who began to cry. That's when we knew it was time to leave opinion number three behind.

Doctor four was, by far, the most intelligent of the bunch up to this point. In fact, in spite of al the extra opinions, we had kept him involved in the care of my son for many years. He suggested something called a Tight Filum Terminale and sent us to a neurosurgeon. Post-surgical urodynamics showed improvement, but he continued to have problems and still did not respond to medications. We saw doctor number five when we were going through a bone marrow failure work-up at Cincinnati Children's Hospital (CCHMC). Doctor five agreed with doctor four.

We once again traveled from our home state of North Carolina to see a specialist at Children's Hospital of Philadelphia (CHOP), because treatments were not working. Prior to the appointment, I did what I have always done. I faxed all of the pertinent medical records to the doctor. Having such a long drive for the sixth opinion, I wanted to be sure that there was a valid reason to be seen in the CHOP urology clinic. The doctor went over the records and I was told that he believed he could help my son. Urodynamics were repeated while he was still on medication. It showed that he still had a high-pressure neurogenic bladder. Same diagnoses as all the other opinions had discovered. We decided to try a new procedure, Botox injectons into the bladder. The doctor at CHOP had treated over twenty patients like my son successfully. After reading medical articles and speaking with doctor number four again, we decided to go ahead with the procedure at CHOP. The procedure was not successful. Still, I decided not to give up. I would continue to search for answers until we found an effective treatment.

The doctor at Duke had agreed to follow my son after the procedure at CHOP, even if there were complications. I was quite impressed with our Duke doctor in the past, as he thought it was a good idea to go ahead and seek other opinions. It is crucial to have doctors who are willing to work with others for the good of your child. After we figured out that Botox treatment had failed, we discussed what options we might have with both Duke and CHOP doctors.  It was agreed that we could try a higher dose Botox procedure. Because Botox is not a permanent solution (it wears off in 3-6 months) and there are risks involved, I decided that we would seek at least one more opinion before deciding to try th ehigher dose Botox procedure. 

I still laugh when I picture the nurse's reaction when she asked, "So, are you here for a second opinion?" I replied, "No, this is our seventh opinion." The look on her face was priceless, a true Kodak moment.  She trult did not know what to say. She was speechless for a moment, until I broke the ice by saying, "We are hopeful that this will be lucky number seven!"

The Complex Clinic at CCHMC had already gone over my son's records from all previous doctors, procedures and tests. The doctor I spoke to before travelling to Cincinnati told me that he felt he really could help my son. While there, he repeated urodynamics and had some other testing repeated that my son had not had since he was three years old. The results were the same and showed that even on medications and Botox, he still had pressures high enough to cause kidney damage.

This CCHMC doctor's opinion on treatment differed from the previous six. This new treatment has been quite successful and I am very happy that I decided to go ahead with seeking one last opinion. There were times on this journey where I felt maybe I needed to give up or that maybe there really were o other treatment options available. While I knew I was not crazy for doing everything I could to help my son, there were times that I would briefly entertain the notion that I just might be a bit nuts for seeking so many opinions. Let our story inspire you to keep searching for answers whould you find yourself in the same situation. The seventh opinion could be your game winning number, too. 

Looking on the Bright Side of Chronic Illness

I wrote this back in January of 2009

Looking on the Bright Side

As parents of children with chronic health care needs, we are taxed with keeping our emotions in check and not allowing our anxiety to show. Our children depend on us to teach them how to cope with their illness. If we lose it, they will lose it. If we do not cope, they will not learn how to cope. This can be quite difficult in the face of constant stress and new medical challenges. One way that I have learned to manage is by counting our blessings.


One of my children with Shwachman-Diamond Syndrome also has a plethora of other medical challenges. Among other things, he has had neurosurgery for release of tethered spinal cord and dealt with a neurogenic bladder for as long as he can remember. As we stood in an exam room long ago, I had to remind myself, "Pattie, if you don't lose it, he won't lose it. If you lose it, he will lose it. If you don't cope, he won't cope." At that moment, I immediately began to count my blessings and tried to see the blessings in his having to begin  intermittent catheterization (IC). It was very hard for me to contain my emotions when the doctor explained our options that day. I knew that everything I was feeling was magnified for Joseph.  I knew I had to keep my cool so that I could help him cope. It was difficult to find positives in IC, no doubt, but I knew if we wanted to make it through that first day, we would need to focus on the blessings to get us through. As our friend Angela Brown used to say, "Positive thoughts equals positive results." The first step in being positive is to count your blessings.

I admit that I am not always that great about counting my blessings, especially during periods of extreme stress. Before we began our training session, Joseph and I knelt down and prayed. My heart almost broke when he told me, "I don't think Jesus is with me. If He was with me, none of this would be happening." We later talked about how Jesus Himself cried out from the cross for His Father. I told Joseph that He did that so that we would know that He understood how we felt. We also talked about the positive side of IC while we were waiting for the nurse to come in to train us. We counted our blessings.


It has been life-changing to do intermittent catheterization every four hours during the day. I would be lying if I said I can always see the blessings in IC. The first week of IC was painful beyond measure. When he was upset one night during this first week, I began to talk to him about how we could look at the positives. This new treatment would be hard, but he would be dry and hopefully not have accidents. He would be able to go and play and not have to worry about accidents. He would not have to worry about whether or not his friends might notice. He could come in for IC and go right back out to play. I explained that while he had to restart medication he disliked, we would be doing it on a different schedule so that the side effects might be lessened. These were all things we could check off on the "positive" column. IC would also be protecting his kidneys from damage due to his high pressure, neurogenic bladder.

As he laid there in bed, he cried a bit when he realized that IC might be forever. Joseph said that he wanted to be a normal kid. I told him that I never wanted to minimize his problems or make him think that having health problems or having to catheterize was not a big deal or something worthy of being upset over. After I said that, I added, But, you know, we really need to count our blessings. There are so many children out there who have it much worse. While catheterization isn't fun, you will still be able to go outside and play, you can still ride your bike, play baseball, swim and so many other things. You'll have to catheterize every four hours, but you will still be able to do all of the things you were able to do before."

That night, we also discussed difficult topics. I told Joseph that even kids he feels are "normal" wish they were normal. It can be a normal part of childhood to feel as if you do not fit in, that you are somehow different than others--so what he was feeling was, in fact, NORMAL. We also talked about how everyone has strengths and weaknesses; everyone has struggles and suffering. These topics are not easy to bring up with a child, but they are important concepts for a child to learn. As parents, it is our job to help each of our children build upon their strengths and overcome their weaknesses, chronic illness or not. My one healthy son struggled for many years with reading comprehension problems while my SDS boys never dealt with learning disabilities. We all have problems to overcome, it is only a matter of degree. Counting your blessings is a conscious choice to look at the positive things in your life. While you do have to pay attention to the medical details, you do have a choice about how it affects your outlook.

Feeling better after our long talk, we said our prayers and he fell fast asleep. A few days later, as we were walking into the grocery store, Joseph announced, "Cathing isn't going to be so bad." His dad looked at him and said, "Well, that's a positive attitude to have." Joseph then said, "Well, I learned to look on the bright side from mom." That spoke volumes to me. As a mother, I really do influence how my children cope with adversity. If I am negative, then they will be negative. If I am positive and count my blessings, then they will learn to do the same.

Intermittent catheterization is our latest hurdle to overcome, but we have used the "technique" of counting our blessings to cope with the many other medical issues we have faced in dealing with Shwachman-Diamond Syndrome and Mitochondrial Disease for many years now.

Joseph's Point of View: Looking on the Brighter Side
By Joseph Curran

My mom asked me if it was okay to print the article she wrote about counting blessings and looking on the bright side and I said okay. I told her that I would write something about looking on the bright side of things, too.

I am eleven and I have Shwachman-Diamond Syndrome and I have to do something called intermittent catheterization (IC). Life hasn't always ben easy, but I try to look on the bright side. I learned to look on the bright side because my mom taught me to. I was upset by IC until I looked on the bright side.


Since I was little I have had a lot of medical procedures and surgeries. I started looking on the bright side of things and got through the procedures and surgeries better. I learned that even when I am sad Jesus is with me, even when I think He is not. I learned to cunt my blessings and look on the bright side and that there is always something to be thankful for. Looking for good things when life is hard makes me feel happier.

Helping Children Cope with Medical Procedures Using Social Stories

I wrote this in May of 2008.

Helping Children Cope with Medical Procedures Using Social Stories 

Having two boys with Shwachman-Diamond Syndrome and secondary mitochondrial disease,, we have had to help the children cope with many medical procedures. We still continue to do weekly infusions of IgG (immunoglobulins) here at home, which has always been stressful for my youngest son. Several years ago, a friend told me to try using social stories as a means to help my youngest with his fear of getting blood in his lines while we infuse his weekly medication. Since then, we have used social stories in a variety of ways.

Our youngest so, Joseph, has always had more fears and anxiety about medical procedures than our middle son. He has a need to know exactly how things are supposed to be, how the procedure will "play out". If they do not go as planned, it can cause a meltdown situation. If he witnesses someone else having problems with their medical procedures, this causes him a great amount of angst, as well. He has stayed up late many a night worried about anything from getting blood in a line to worrying about his veins not being good enough to start an IV the next day.

What is a social story? Social stories were originally introduced in the early nineties to support the emotional and social development of autistic children. They were developed to help identify a concern and support a desired outcome in social interactions for autistic children. These stories are written about the child himself, thus making it unique to that child.

We modified the application of social stories to fit Joseph's unique fears. They worked like a charm! For instance, we were able to extinguish his fear of getting blood in his line through the use of a social story. The strange oart of his fear was that he had developed the fear not because he had gotten blood in his line, but because he had witnessed it happen to his brother. He obsessed about this happening to him constantly-even when it wasn't IgG infusion day. We developed a social story that went something like this:

"Joseph, have you ever gotten blood in your line before? No? Well. since you have not gotten blood in your line and you have better sites for your subcutaneous injections, the chances are that you will not get blood in your line. But, if you should, what would we do? We would remove the needle and catheter. We would then make sure we could insert another needle into a spot where you already have numbing cream. We would change out the needle sets and re-insert a new one. Then we would infuse your IgG and everything would be okay."

We repeated the story over and over again, and each time it brought him comfort knowing that the problem could be solved. He felt reassured knowing that he would not have to have a needle poke him where he was not numbed first with his numbing cream. If he thought of a new problem that might arise, we figured out the solution and added it to the social story.

We had a battle with him having to get IVs placed. He would panic, scream, run to hide-one time running past the nurses station on the floor, through the locked doors and all the way to the elevator before I caught up with him. He has difficult veins, no doubt about that.. His fears have been reinforced because it can take up to eleven pokes to get a line in. He's had to be infused through a vein in his foot while he sat for over 6 hours, unable to get up. He's had medical procedures done where they were unsuccessful at getting a line started--even in the OR by experts, while he was asleep! So, he has good reason to be afraid. We could not allow the fear to consume him, though.

Social stories have helped him cope with IV placement ad he continues to have many medical procedures in his life. When he begins to worry about the upcoming blood draw or IV placement, we talk him through itfrom his perspective. A good way to come up with the social story is to allow your child to write the social story from questions you ask as prompts.

Joseph's IV social story goes something like this when he begins to worry:

"Joseph, what can we do to help your veins be ready for tomorow?" He usually answers, "Drink lots of fluids." I reply, "Yes, what do fluids do?" He replies, "They make my veins big and fat so that they are easier to poke!" We then go through the rest of the story with solutions. I remind him that Child Life will come to play with him, that we will not allow them to keep poking, that he ca get the nurses to ask permission to use the mask so that they can place the IV while he is asleep (Note: the gas can cause some children more discomfort upon awakening-this may not be an option for all children) and that he does not have to be afraid. I remind him that I will be there the entire time, he will not be alone.

Since we have been using social stories, I can see how they have helped him to make social stories on his own. He starts to worry and then tells me, Well, mom, if this happens, then I can do this, or this will happen." He has learned to cope! Through using social stories with him, he has found an active coping strategy that he can now employ himself. This is a gift beyond measure, especially knowing that he will continue to face many medical procedures throughout his life.