I thought everyone would be interested. The letter from the Dr. to me, refered to countless times in my letter below, is available upon request. To date, Dr. Kemp refused to respond to my request for clarification.
To: Rae Lynn Johnson, RN, CDE January 21, 2001
Endocrinology Specialty Nurse
Stephen Kemp, MD, PhD
Chief, Professor of Pediatrics
Pediatric Endocrinology
Re: Triton Thomas Arnold
Dear Nurse Johnson and Dr. Kemp:
In receipt of your letter dated January 16, 2001 regarding the health of my son, Triton Thomas Arnold, it is imperative that I receive further clarification from you on the statements set forth in your letter so that I may fully understand the proper provisioning of my son’s medication. Since 1995, when doctors at the Children’s Hospital in Dallas, Texas diagnosed my son with CAH, I have made every attempt to understand this disorder so that I may properly follow the required medical guidelines.
I respectfully request that my questions below on the professional directions and assertions made within your letter be clarified, in writing, and at you earliest convenience:
1. “It is medically necessary to give medication EXACTLY as ordered. It can be fatal if child does not have adequate hormone replacement.”
This statement has caused me grave concern for numerous reasons. Used consecutively, these two sentences hypothetically imply that if the CORTEF prescription orders 5MG three (3) times daily that missing even one of the daily dosages could result in the death of my son.
If this is indeed the case, please provide me a formal written statement describing the conditions under which death would occur and the percent of likelihood you would estimate that death would occur for each of the conditions you referenced in your letter.
- “In the event of physical stress or/of illness, the child will need a stress dose of cortisol replacement.”
Please provide a more detailed definition of “physical stress”. Also, the apparent hand-written correction of the word “of” to “or” in your letter can have a significant impact on the intent of your direction, as “stress of illness” implies a singular situation and “stress or illness” implies two possible situations.
- “Physical stress is characterized as fever higher that 101 degrees Fahrenheit, strep throat, ear infection, pneumonia, vomiting, muscle strain, broken bone, or a serious accident that requires immediate medical attention or hospitalization.”
Please further define what constitutes “physical stress” as it pertains to your inclusion of “muscle strain” in your definitive examples of “stress”. My children and I are very active and when we are together. We often swim, go on trail hikes at the local parks, ride bicycles, play catch football and the like. If I am to follow your aforementioned direction “It is medically necessary to give medication EXACTLY as ordered”, I must understand your definition of “muscle strain”. I am relatively confident that I understand the remaining definitive examples you provided.
4. “In other instances, if the child “looks bad” (pale, sweaty or breathing fast), feels weak and/or unable to respond normally, losses consciousness, or has a serious injury, such as a broken bone, this would be considered a life-threatening emergency and a need for an injection of rapid-acting cortisol (which is to be kept on hand) immediately.”
I am very concerned for two reasons. First and foremost, I am currently not able to satisfy this direction, as every time I have asked Triton’s mother, Sharon, for the doctor’s prescription to have the required medication filled or refilled so that it may be readily available when Triton is with me, she has told me that: “You are not medically qualified to administer an inter-muscular injection. If he needs an injection, you have to take him to the emergency room. I am the only one that is qualified to administer an inter-muscular injection. Do you know what kind of nerve damage you could do to him if you did it improperly?”
What is your professional position on Sharon’s refusal to provide me with the prescription required for me to have the directed “rapid-acting” cortisol medication on-hand?
Secondly, I am seriously concerned that I do not fully understand your actual intent for the definitive examples provided within your letter that direct the issuance of the “rapid-acting” cortisol. The symptomatic examples provided in your letter that direct the issuance of this “rapid-acting cortisol” included “sweaty”, breathing fast” and “feels weak”. Please further define the context by which these three (3) symptoms are to be interrogated by caregivers and the “rapid-acting cortisol” be administered. Most obviously, these three (3) afore mentioned symptoms can be a result of any sort of physical exertion such as skating, bike riding, running, playing sports and all other forms of exercise.
Are we as parents to infer from these three (3) symptomatic examples that you are suggesting or directing our prohibition of his participation in any or all activities that could cause him to sweat or breath rapidly? Likewise, to what extent are we as parents obligated to prohibit Triton’s participation in “typical” childhood and adolescent physical activities that would lead to the generation of these normal bodily functions or could result in a serious physical injury such as a dislocated shoulder, broken bone or the like. Specifically, I am referring to both extracurricular school activities such as football, baseball, hockey, soccer and basketball as well as typical recreational activities such as snow skiing, water skiing, mountain biking and the like.
5. “Mother reports stress level for Triton in high during visitation with father.”
Towards the end of your letter you provided three (3) testimonials from Triton’s mother implicating me for not following medical orders pursuant to Triton’s condition. If I am to understand this allegation correctly, I must put it in the only context for which I have been provided by your definitive examples of “stress”, and the actual situational examples of the same alleged by Sharon.
Is this allegation in reference to a single incident, or is this a general opinion of hers during Triton’s ordinary visitations with me?
If this is her general opinion of “stress levels” during my ordinary visitation periods with Triton, in what context of your examples of “stress” is she alleging?
I would like to thank you for the obvious concern you have demonstrated for my son’s health and welfare through the issuance of your letter. I am anxiously awaiting your timely response to my questions and concerns contained herein. I also respectfully request that you include me directly in any and all professional communications and medical directives from your office pertaining to Triton Thomas Arnold so that I may be kept abreast of the current and future medical requirements necessary for the health of my son.
I sincerely hope that with this first exchange of dialog, we can begin to work together to ensure that Triton always has the best and most consistent medical care possible.
Sincerely yours,
Douglas L. Arnold, Jr.
(Father)