Archive of Past Newsletters

10-2006 OnH Consulting Newsletter for October 2006
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.

 

The Web site of the federal HRTW initiative is packed with resources, tools and tips for helping you and your child navigate the tangled maze that is the health care system. You can access the HRTW Web site by logging on to our Web site with your username and password and clicking on “Resources.

 

I thank you again for choosing ONH Consulting, and it has been a great pleasure working with you.

 

Sincerely,

 

 

 

Christopher Sabine

President

ONH Consulting, LLC

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Christopher Sabine

11-07 ONH Consulting Newsletter for November 2007 Click Here for More ...

12-06 ONH Consulting Newsletter
I would like to start off this issue of the ONH Consulting newsletter by wishing you all a very Merry Christmas and a happy Holiday season. I would also like to thank you for your support and patronage of our firm and wish you well as you continue to meet the challenges of raising and professionally serving children with ONH /SOD.

 

I say “professionally serving” because I am excited to announce our first subscription by a professional, a teacher of the visually impaired in a school district in Western Washington State. I would like to thank you, Ms. Kerr for your subscription and for our phone conversation. I hope the information I gave you was helpful, and I would be honored and privileged to work with you on any concern related to your students with SOD.

 

I am excited to announce that ONH Consulting will be exhibiting or conducting workshops at several venues in 2007. We have been asked to conduct a “group visit” to families of children with Septo Optic Dysplasia (SOD) receiving services from the Division of Neurodevelopmental Paediatrics at Upstate Medical University in Syracuse, New York. These children face a variety of challenges, including significant visual impairment and other typical characteristics of SOD, such as endocrine insufficiency. Our workshop will be part of an exciting, year-long initiative of this Division of Neuro-Developmental Paediatrics to link families of children with significant visual impairment to other families and vital supports in their communities.

 

We will also be traveling to the Western Pennsylvania School for Blind Children, a private, non-profit school in Pittsburgh serving children with blindness and visual impairment ages 3-21, particularly those with severe and multiple disabilities. Finally, we will be represented at the national conference of the Magic Foundation in Chicago this Coming July. The Magic Foundation is a major national non-profit organization supporting the needs of children who have growth hormone deficiencies and has a division dedicated to issues facing children with SOD. I’ll be   sharing more about our events in future issues of our newsletter.

 

I would like to share a resource that can help families of children with ONH and SOD access needed income, health and social support services in their communities. The ARC of the United States, one of the largest and most active political action and support organizations for people with Mental Retardation and Developmental Disabilities, has compiled resource guides to benefits and services in many of the fifty states. These guides cover access to income services such as SSI and Social Security Disability Insurance, health insurance, sources of funding for family support, educational advocacy and assistance, and more. You can access the ARC family resource guides by clicking here or by visiting http://www.thearc.org/familyguide/

 

I would like to conclude by mentioning that NORAD is at it again. For the past fifty years, The North American Aerospace Defense Command (NORAD) has spent the entire day on Christmas Eve tracking certain suspicious activities at the North Pole.  It seems there’s a jolly old elf called St. Nick or Santa Clause who delights in leaving presents for nice boys and girls on Christmas morning.

 

Using a network of 47 RADAR installations known as the North Warning System, US and Canadian jet fighters and the same geosynchronous satellites used to track incoming missiles aimed at North America, NORAD has tracked the distribution operations of Santa and his eight great reindeer. You can find out more information about NORAD by visiting the NORAD Tracks Santa Web site at http://www.noradsanta.com

 

I thank all of you for carrying us through 2006 and making the world a better place for children with ONH and SOD. Let’s make 2007. Let’s all make 2007 a banner year for our kids!

 

Sincerely,

 

 

Christopher Sabine

President

ONH Consulting, LLC

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Christopher Sabine

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03/2006 - March - ONH Consulting Newsletter
ONH Consulting Newsletter for March 2006 Click Here for More ...
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06-2006 -June -ONH Consulting Newsletter
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02/2006 - February - ONH Consulting Newsletter
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01/2006 - January - ONH Consulting Newsletter
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12/2005 - December - ONH Consulting Newsletter
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5-07 May ONH Consulting Newsletter
I would like to thank you for your support and patronage of ONH Consulting. As usual, it has been a very busy and productive time for our services and clients. The increased schedule of students’ IEP’s as the year draws to a close has kept me extremely busy.

On April 3, I conducted my first presentation related to ONH and our firm at the Western Pennsylvania School for Blind Children in Pittsburgh. The workshop, Optic Nerve Hypoplasia: Strategies to foster classroom performance and educational development drew a variety of teachers of the visually impaired, special educators, speech /language therapists, occupational therapists, nurses and other professionals and paraprofessionals. One mother also attended. In total, there were 53 participants, 46 completed evaluations for continuing education credit following my workshop.

 

The feedback from this presentation could not have been more positive. Here are a few of the comments.

 

“I wish that Chris was a WPSBC staff member! He is very informative!”

 

“Christopher’s interpretation and personal vignettes added insight into ONH and what our students may be experiencing.”

 

Much of the material I covered in my workshop came directly from your experiences raising your children, many of whom have very different challenges and abilities than me. Thanks to all for such a wonderful opportunity.

 

In closing, I need to inform you that as of May 1, 2007. I will no longer be accepting credit card transactions. Only checks or money orders will be accepted. I apologize for the inconvenience.

 

I thank you again for your patronage and support of ONH Consulting and value the privilege of working with all of you!

 

Sincerely,

 

 

 

Christopher Sabine

President

 

ONH Consulting, LLC

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Christopher Sabine

ONH Consulting Newsletter for December 2009 Click Here for More ...

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