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Dr. Gwenn's Mito Minutes #4

If Only There Was A GPS For The HealthCare System

Gwenn Schurgin O'Keeffe, MD
July 2007

Gwenn Schurgin O'Keeffe MD

We went on vacation recently and our rental care came with one of those fancy talking GPS systems. I love when it dings and the soothing voice says "take your next left", just as you are passing the intended left. But, at least the system comes close to getting you where you need to be. And, the maps are more or less accurate. I had visions of having one of those of our healthcare system - for all of us!

Imagine the possibilities. Need a referral? No problem! Type it in and the voice will lead you to it. Can't find a specialist? Piece of cake! Ms. GPS will find you one in your area.

The frustrating reality is that our healthcare system is challenging on good days, and that's for kids with no health issues who need only routine care. Add to the mix kids who have significant health issues requiring multiple specialists often at multiple hospitals, and most parents feel like they have just stepped into a bad movie.

Organization and a healthy perspective on the zany reality of our current healthcare system will go a long way in helping you not only maximize the system to your child's benefit, but not feel so lost and frustrated along the way.

Office Manners

Sometimes it can be helpful to remember that like you, the office staff is equally frustrated with the healthcare system. When interacting with office staff try and live by the "treat others as you would treat yourself" idiom. As Kirsten, mother of two teenagers with mitochondrial disorders points out: "You build a bridge slowly but it burns fast". Kirsten finds she gets better care for her kids by trying to stay calm and remember that the office staff and docs are human and dealing with their own issues, too. "Pick and choose your battles", she told me. "Don't lose your cool even if you have to wait. Docs have many patients. You want to be your child's advocate - negativity has a domino effect".

Be picky about Your Child's Doctor

Many Mito moms told me that the doctor-patient match was essential for their children's overall health. This was not only for the medical success of the treatment but for their children's ability to feel 100% confident and comfortable in the care they were receiving. Perhaps when kids are little this seems like a small detail but as kids get older, they become more and more invested in their own healthcare. Since the issues are occurring to them, having doctors they feel comfortable with is almost more important than a parent's comfort level.

One mother noted that if her daughter didn't like a specialist she would not return. She also pointed out that the specialist of most importance to her daughter's care was her pediatrician. In fact, her daughter felt so, too: "I have my mom, my dad and my doctor Mitch". The family's pediatrician, Mitch, has been their cornerstone since their daughter's diagnosis and the one constant. She calls him their "pivot person" and strongly encourages every Mito family to be sure they have a pediatrician who has that role for them. In fact, when we were on the phone together, he called to help her interpret some tests and help her facilitate the next steps. He has been the one constant throughout their 13-year Mito journey while specialists and tests have come and gone.

Cindy agrees. Her daughter is now 24 and has very complicated mitochondrial disease. She has been helping her daughter with Mito issues even before Mito was able to be diagnosed. She advises families to go with their instincts and find a doctor that will listen. She has always found it helpful to stay with doctors who were able to help and not stay with those who could not. She takes the same approach to appointments and only makes those that will benefit her daughter and does not take her daughter to specialists "just for a check". This has helped her not only manage the medical system but her life.

Handling Medical Issues, Setbacks and Hurdles

Medical problems will come. A few families developed some very interesting ways to cope that over time helped them not dwell. For Kirsten, she started calling those medical moments "detours" and developed a few rules. For example,

1. Any decision today can be undone tomorrow - nothing is that concrete.
2. Never lie to your child about what will happen.
3. Between the parents, one should be the savior for a medical procedure and the other the giver. So one gives the child to the medical team and the other is waiting on the other end to be the one with the hugs.

All families agreed that the medical issues can't consume all of your day and thinking and advocated "compartmentalization". In other words, think about the information when you need to then move on to a new topic in the day and to other kids in the family.

Weekend Coverage

What does your doctor's office have for weekend and holiday coverage? Or, when your pediatrician is on vacation? Kirsten learned the hard way when her daughter was small that there was no great sign out system so she worked with her pediatrician, Mitch, to develop a protocol to have visible to all the docs so if her daughter gets sick they all know what to do.

Talk to your pediatrician about their office system. Many offices now have electronic medical records where it is easy to flag a protocol for kids who have a special medical need. Many can send out a note to covering docs alerting them to kids who may need special issues.

Some parents have found an online site called very useful. You set up an online health record for your child with all the essentials so you can just print a copy or have a covering doc or ER go online to see the meds, recent issues, etc. You can use this to update your child's medical record yourself, too.

OnLine Information

Most families found they went on information overload too easily when they hunted on Dr. Google. I'd have to agree with this. There is good reason the internet is called a web! Wendy who has a 3 year old son with Mito, noted that "online is just too scary and the information may not apply to your child." She found it best to get to know her child's symptoms and call her doctor with questions. This goes back to the compartmentalization concept, too. Spending too much time reading information online runs the risk of over-thinking and over-stressing about the "what-ifs" of Mito and not focusing on the other areas of your life.

Creating Your Own GPS

Until a healthcare GPS gets developed, your pediatrician + organization (of information) + compartmentalization can do a really nice job in creating a GPS that will help you get to where you need to be. The end result should be handling the healthcare system in a way that minimizes stress and maximizes time to do the much more fun things in life…which is just about everything else!

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itcoll's picture



awareness about the miticholdrial diseases is indeed needed.And it is high time people involved formed an active plan on how to go about this in an efficient and the most effective manner.One more thing as your post at the end pointed out research has switch gears and should be more results about the connections between autism and these diseases single