I would like to thank you again for your support and patronage of ONH Consulting. I would especially like to thank those of you who have subscribed to our services within the past month. We greatly appreciate you choosing us for advice, consultation and support for your children with Optic Nerve Hypoplasia.
It continues to be a busy time for me as president of ONH Consulting. There are some exciting events that are on the horizon for next year, and I hope to discuss them in depth in future issues of our newsletter.
In our last issue, I promised you that I would discuss the importance of finding adequate health care services and transitioning from child to adult-oriented health providers. While transition to adulthood is years off for many of you, planning how your child will receive the health care he or she needs as an adult is something you should think about- particularly if your child has GROWTH HORMONE or Cortisol insufficiency, Diabetes Insipidus, or other conditions related to ONH that many of us have.
While access to adult health care has been in the federal policy agenda since the first conference on transition organized by then Surgeon General C. Everett Koop, moving from pediatrics to adult health care is a daunting and intimidating process. While many pediatric providers (i.e. children’s hospitals) do see some patients into young adulthood, finding an adult health care provider familiar with a pediatric condition can be very difficult. Pediatric and adult health providers often don’t communicate. There is often no connection between the medical community and insurance, educational or vocational rehabilitation services. This means that the burden of finding and managing health care as an adult is often on you or your child. I believe this is especially true in a condition like ONH that is complex and poorly understood.
I would like to illustrate my own experience finding an endocrinologist as an example of how challenging the health care system can be for us as people with ONH.
I was born and diagnosed with ONH in the mid 1970’s. At that time, ONH was only considered a cause of blindness or visual impairment. Medical professionals often confused ONH with other conditions, such as Optic Nerve Atrophy and (in my case) even Macular Degeneration. There was no understanding and very little study of the secondary conditions associated with ONH, such as endocrine deficiency, sensory processing difficulties and Autism. I experienced some of these latter challenges, but my family and those around me attributed them to my visual impairment. I experience some of the symptoms of low Growth Hormone, such as skin rashes, low muscle tone and occasional lingering fatigue.
After I discovered FOCUS Families and started ONH Consulting, I finally decided to take the plunge and be tested for GROWTH HORMONE and Cortisol deficiency. In Cincinnati, where I live and operate our firm, children with ONH /SOD are tested for pituitary insufficiency by the Division of Endocrinology at Cincinnati Children’s Hospital Medical Center. There are also several children with ONH that I am aware of who see and endocrinologist there regularly.
When I contacted the Division of Endocrinology, I was initially told that there might be a doctor practicing there who also sees adult patients through University Hospital in Cincinnati. Children's Hospital Medical Center is affiliated with the University of Cincinnati, as University Hospital is. Both are teaching hospitals, so I began my search by examining each endocrinologist on Children’s Hospital’s Web site and cross-referencing it with a similar list of doctor’s practicing specialty medicine at University.
I soon found that only two endocrinologists were listed as having practices at both hospitals. Neither was accepting new patients. After yet another call to the Children’s Hospital Division of Endocrinology, I determined that no one at Children’s could see me as an adult. I found only two other endocrinologists in Cincinnati working with adults, and neither had any pediatric experience or knowledge of ONH.
Some of you already know that my professional background is in social work. I obtained my Master’s in the subject and worked as a service coordinator for youth with chronic health conditions. The grant that funded our project was funded as part of a federal initiative called Healthy and Ready to Work (HRTW). HRTW, of all things, was established to assist youth with chronic health conditions to transition from childhood to adulthood and included helping youth transfer to adult health providers. My job involved close collaboration with the Ohio Bureau of Children with Medical Handicaps (BCMH), the state agency that serves children with special health care needs and chronic conditions. Many of you receive funding, care and supplies from similar agencies in your state.
I still keep in touch with several people that I worked with in this program, including a nurse coordinator at BCMH named Kathy. Kathy was one of our primary professional liaisons with BCMH and operates from the agency’s central office in Columbus, our state capital. I call Kathy occasionally to discuss the health care system in Ohio and my work for families of children with ONH. Another person I worked with is Dr. James Bryant, Director of BCMH. Dr. Bryant and I are both affiliated with Wright State University in Dayton, Ohio, where I received my undergraduate degree and Dr. Bryant attended medical school. Just after I joined FOCUS Families in 2004, I was able to share information and literature about ONH with Dr. Bryant at a public forum on Autism here in Cincinnati
After contacting Cincinnati Children’s Hospital Medical Center to no avail, I explained my situation and need for an endocrinologist familiar with ONH to Kathy at BCMH. She forwarded me directly to Dr. Bryant, who was able to put me in touch with an endocrinologist at Wright State University Medicine and Pediatrics. The next thing I knew, I had an appointment three weeks later with Dr. Tom Koroscil, the Chief of Endocrinology at Wright State.
I met with Dr. Koroscil and shared my concerns. While he wasn’t as knowledgeable about ONH as I had hoped, he did listen to my concerns and agreed to send me to a lab for blood work. Since Cortisol levels are highest upon awakening, I had the testing done in the morning.
Last week, I finally received a call from Dr. Koroscil. While my Cortisol levels were in the normal range, he expressed concerns about my level of GROWTH HORMONE and Testosterone, both hormones that many people with ONH lack in sufficient quantities. My levels of both hormones were considered borderline, and my GROWTH HORMONE level was only four points from being considered deficient.
Dr. Koroscil plans to schedule me for a GROWTH HORMONE stimulation test and possibly prescribe synthetic Growth Hormone for me.
My situation is somewhat unique in that I was never tested for endocrine deficiencies as a child, as many children with ONH are today. For those of you who are already working with an endocrinologist or other health specialty, your child may still continue to receive care from the same pediatric providers in some cases. The key is to have a plan in place long before your child becomes ineligible for children’s health services. This can vary from state to state and even among doctors or hospitals, but this is usually age 21. If possible, make your child aware of his or her health conditions, required medications, and the names of doctors and hospitals. Also, make sure that your child understands what to do in an emergency. If this is impossible, make sure that there is someone who is certified to act on your child’s behalf, such as a legal guardian, surrogate or power of attorney.
I thank you again for choosing ONH Consulting, and it has been a great pleasure working with you.
ONH Consulting, LLC