Monday, February 9, 2015

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. 

No comments: