OMS Manual/Chapter 6

CHAPTER 6 - QUESTIONS FOR YOUR OMS DOCTORS

Description

Having a family member who is battling OMS does not mean that there are no answers. It is imperative that the doctors provide answers to your questions. This chapter will outline some important questions that should be asked and that you should expect answers from your medical provider.

Questions During Onset, Initial Diagnosis and Hospitalization

Some questions that you should ask your specialist treating you or your child during onset, diagnosis, and initial treatment and hospitalization include:

Diagnosis:

How many OMS patients have you diagnosed and treated previously?
How many OMS patients has your hospital diagnosed and treated in the past 5 years?
What definitive tests have you performed to conclude that my child has OMS?

Does my child have a neuroblastoma?
What additional scans will be completed to verify if a neuroblastoma exists?
What is the severity level of the OMS?

Treatment:

How long will the patient be hospitalized?
Describe the initial treatment protocol we will begin.
Do you consult with an OMS specialist or researcher on the latest treatment protocol?
What treatment options are available?
What is the timeline that I can expect to see improvement in the OMS symptoms?

Scans and Tests:

What scan(s) will be performed? CT, MIBG, MRI? What are you looking for and what is the difference in them?
If no neuroblastoma is found, will we need to scan again at some point in time?
What are the risks of exposing all of this radiation to my child versus the ongoing OMS symptoms?
When you perform a lumbar puncture, what would indicate OMS?
Please explain the tests for B cells and T cells.

Questions to ask throughout the first 3 years of treatments

Short and Long Term Effects of the Treatment Protocol:

What are the effects of the steroids my child is taking?
What are the effects of the IViG?
Why does my child get certain symptoms after IViG; flu like symptoms, headaches, etc...
Is there a difference in IViG brands? What is best for my child?
Why would a chemotherapy treatment be part of the treatment protocol?
What are the side effects of trazodone?
Is my child more susceptible to illness when other people are sick?
Should we consider getting a port for my child? What are the pros and cons?
Can IViG be administered from home? What are the pros and cons?

Tapering off of the Drugs:

What is the difference between the steroids ACTH, Dexamethasone, and Prednisolone? What are the pros and cons of one versus the others?
What is the schedule for tapering my child off of the steroids?
How long is a child typically using steroids?
When do we begin tapering the IViG?
Every time we get to a certain dose in the tapering process, symptoms appear. What do we do to avoid these relapses?

What happens if the tapering is not working?

Questions to ask in the event of a relapse

Are relapses typical for OMS kids?
How long do relapses last?
What steps should I take to prevent relapses?
I have other children at home. How can I keep the OMS child from getting sick?

Questions to ask the Therapists

Initial Visit:

What age level is my child currently at?
How many times per week should my child take speech therapy?
In addition to physical therapy, would dafos help?