OMS Manual/Chapter 5

CHAPTER 5 - DIAGNOSIS AND HOSPITALIZATION

Description
Proper diagnosis of OMS can be a tremendous ordeal of dealing with first responders who have never observed the disease and quickly discount it as a minor issue. In a 2014 survey of OMS caregivers, 59% of respondents indicated it took between two weeks and three months for accurate diagnosis. So, it is not surprising that in some cases, parents have actually researched symptoms and self diagnosed the disease.

Once diagnosed, it is very important to get care at a facility that has handled previous cases of OMS. These hospitals are typically going to be found in the children's hospitals in major metroplexes. Leading cities that have staff and facilities renowned for treating OMS include Los Angeles, Boston, Houston, Seattle, Chicago, Cincinnati, and Philadelphia.

Diagnosis of OMS
The time to diagnose OMS can vary greatly depending on the hospital and the specific first responders that are addressing the needs of the OMS warrior. In some cases, diagnosis is very prompt while in other cases, the caregiver has needed to go from facility to facility in search of a proper diagnosis. In many cases, the OMS warrior will ultimately get diagnosed by the pediatric neurologist or an oncologist.

Regardless of the length of time to find the diagnosis, the medical staff will likely run a series of tests and procedures to validate the diagnosis and to search for a neuroblastoma (cancer) in the OMS warrior. It is very common to have multiple blood tests as well as a variety of scans including CT, MRI, and MIBG. All are in search of the neuroblastoma. Roughly 60%-70% of OMS warriors will have a Neuroblastoma discovered in the first few years of onset.

Initial Hospitalization
The initial hospital stay will typically last a few days up to two weeks as doctors begin treatment and stabilization of the OMS warrior. Initial treatment protocols will likely include IVIG and a steroid. While tests are run, you can expect a lot of activity as residents visit the patient in the hopes of understanding OMS and how to care for OMS warriors in the future.

At this point of initial hospitalization, expect that the OMS warrior may be in a lot of pain and very scared as IVs are in the arm and multiple scans and tests are performed. While there isn't much you can do to address that issue, be mindful that inexperienced caregivers and/or hospitals may make the experience more difficult than necessary. One of the common complaints is staff that try to infuse IVIG a too high of a rate. This has potential to provide great pain and anxiety to the OMS warrior. Refer to Chapter 7 on medical treatments for more information.

Preparing for a Hospital Visit
Adapted and modified by Kaeli Sutton from a patient handout by Hasbro Children’s Hospital in Providence, RI.

The hospital can be a stressful environment for children-- they meet a lot of new people, encounter equipment and activity that is unfamiliar, and, most importantly, find their bodies subjected to ongoing medical procedures and testing. We understand that the family plays a critical role in a child’s understanding of his/her healthcare experience. Below is information on helping your child successfully prepare for the hospital visit.

* EXPLAIN what will happen to your child in terms they can understand. Reinforce positive vocabulary to alleviate their fears. Use words that describe what they will hear, smell, feel, taste. For example, you might find that describing what they might feel as they go under and come out of anesthesia is important, as well as what the staff/surgeons might look like (masks, hats, gloves) etc., to support decreasing frightening experiences. Imagine yourself in the situation, especially being acted upon by a lot of “large” people while you are lying down. Describe it to your child in the most direct and least frightening way. Remind them that you will be just outside (or with them) the whole time. Remind them that the doctors and nurses are there to help them heal and feel better. Toddlers and preschoolers cope best when they are told about the hospital stay 1-3 days before admission. They may not remember information given to them too far ahead of the event. Children of this age worry about being along, not coming home again, and that they are being punished; “I did something bad, and that’s why I am in the hospital.” Reassure them that they are not being punished. School-age children need to know at least a week in advance. This gives them ample time to think about the information and ask questions. School –age children often fear having anesthesia and need reassurance that they will not wake up or feel pain during the surgery. it is also important to clearly describe what will happen after they wake up and when you will be with them again. Many OMS warriors experience their most traumatic experiences POST procedure, when they wake up confused and they haven’t seen the parents yet. Adolescents should be informed as soon as possible. This age group copes best when given the opportunity to plan for and make decisions about the hospital stay. They also need reassurance that they will have as much privacy as possible, such as having curtains pulled around their bed and that they will be a part of decision making.

* REMIND your child that they will be meeting many new people during their visit to the hospital. Explain that everyone they meet is there to help them feel better, and if your child is in pain, he/she should let someone know.

* ENCOURAGE your child to ask questions of you and the healthcare team. If your child is having difficulty expressing feelings, ask questions like, “What kinds of things are you wondering about when we go to the hospital?” If you sense that your child is anxious about going to the hospital, you may want to begin the discussion with, “What do you think the hospital will be like? Young children often express their feelings through play. If you have a play medical kit at home, encourage your child to use it. You can participate by being the patient and your child being the doctor or nurse. Ask questions like, “What is this used for?” If your child displays a misunderstanding, help make your child aware of what will actually happen. Also, often, just observing the themes in a young child’s play will show you some of what they’re dealing with/exploring, and you can speak to that. Sometimes it’s best to speak to it directly, but other times you can just join in the creative play as another character/voice and communicate that way. Little ones often are overwhelmed by too much “you” focus, and do better with it being a story about someone/something else. For example, you could play a game with them in which they were the doctor taking care of one of their stuffed animals. Through the course of the play, the parent could be a nurse, and gently support the “doctor” in creating a scene similar to that the child will actually encounter. In this play, you are helping the child know what to expect, while not focusing to directly on them. You are also giving them a chance, through play, to give clues around what they might be worried about or wondering about.

* ENCOURAGE your child to express what they are feeling and reassure them that all feelings they have are okay. It is important to listen and empathize with your child.

* BE HONEST. Many families try to protect their children and give them information that isn’t necessarily correct. This can be confusing to a child and may cause them to mistrust hospital staff. Not knowing what is going to happen can be more frightening for a child. For example, preoperative blood tests hurt, so don’t tell a child that the needle is painless or feels like a tiny mosquito bit. We have found that kids who know what to expect are less fearful and have a far better experience than children who are not prepared.

Resource Materials to prepare for Hospital Visit

 * Bates. M (2005). Going to the Hospital. Usborne Books


 * Beaty, M.D. (1996). Blueberry Eyes. New Mexico: Health Press


 * Bourgeouis, P. & Clark, B. (2000). Franklin Goes to the Hospital. New York: Scholastic, Inc.


 * Bridwell, N. (2000). Clifford Visits the Hospital. New York: Scholastic, Inc.


 * Howe, J. (1994). The Hospital Book. New York: Crown Publishers, Inc.


 * Lansky, V. (1990). Koko Bear's Big Earache: Preparing for Ear Tube Surgery. Book Peddlers.


 * Re, M. & Rey, H.A. (2008). Curious George Goes to the Hospital. Houghton Mifflin Co.