OMS Manual/Chapter 9

CHAPTER 9 - OMS RELAPSES AND FLARES

Description

One of the most difficult and frustrating challenges of raising a child in recovery from acute OMS or living with chronic OMS are relapses. Relapses are symptomatically never severe as the initial acute phase of the disease but can cause some symptoms which had gone away after initial treatment to reappear. In many cases of relapse treatment can be prescribed to stop it. Relapses are suspected to cause additional injury to the brain including: permanent loss of cognitive ability and functioning, issues with fine motor skills, gross motor skills, behavioral/psych issues and problems with short-term memory. Nearly all children with OMS will relapse (to some degree) at least once, and for many, multiple relapses even into adulthood are probable.

There are several things which can cause relapses to occur. Here is a list of the most common causes:

• Reduction in steroid dosage (taper).

• Stopping IViG

• Illness (viral or bacterial) or Infection.

• Stress

• Fluctuations in hormones. (puberty, pregnancy)

• Vaccines, especially live vaccines or any vaccines given during intensive treatment.

Steroid Taper

The most common causes of relapse in kids recovering from the acute phase of the illness are steroid taper and illness. With relapse due to steroid taper, parents sometimes report being able to taper to a certain point and then seeing breakthrough symptoms. If this is the case, the treating physician will often “bump the dose” back up, past the point that relapse symptoms emerged and prescribe a slower taper. Sometimes this process has to be repeated several times before steroids can be completely discontinued without any symptoms of relapse. In the event that a taper without relapse isn’t possible, drugs called “steroid sparers” can sometimes be used to replace the steroid and allow for a successful taper.

Illness and Infection:

Colds, flu, and infection can also cause symptoms of relapse because they cause the immune system to go to work in order to fight the illness. Anything that causes the immune system to go into “fight mode” can potentially cause relapse in kids with OMS, because it is a disease in which the immune system is directly involved. Because children recovering from the acute phase of the disease are generally undergoing chemotherapy or other forms of immunesupression, they are especially susceptible to illness or infection. Many parents have reported seeing symptoms of relapse before it is clear that the child is actually sick or has an infection. Often a sharp change in behavior is an indicator of an underlying infection or cold that is brewing. In order to attempt to prevent illness and infection, it is generally advised that all members of the family avoid known exposure to people that are sick, wash hands frequently, and use hand sanitizer. In some instances, the physician overseeing treatment may also advise that the family avoid large crowds or advise against leaving the home altogether unless absolutely necessary, and the child is wearing a medical mask to protect them from exposure to germs. Other things to watch for are infections in the mouth (prolonged steroid treatment can cause issues with teeth), urinary tract, and small cuts which can easily become infected.

IViG

IViG is often one of the last therapies to be discontinued. When the child is finally ready to stop receiving infusions, IViG should be tapered gradually in order to protect against relapse. When tapering IViG, sometimes it is the dose of IViG that is gradually reduced, other times the length of time between infusions is stretched out. The method of IViG taper depends on the physician and his or her preference.

Stress

Little is known about how stress can cause symptoms to flare in autoimmune diseases of the central nervous system. Stress is seems to be an issue for older kids with OMS who have recently experienced major life changes (change in school, transition to high school, etc), and should only be considered when other, treatable (illness, infection), causes of relapse have been eliminated.

Hormonal Fluctuations and Puberty:

There have been several anecdotal reports of fluctuations in hormones due to onset of puberty or pregnancy causing relapse. Like in the case of stress being the cause of relapse symptoms, efforts should be made to rule out treatable causes before settling on fluctuating hormones as the cause. Consult with the treating physician to discuss treatment in the event of relapse due to hormones.

Vaccines:

Children with OMS are advised not to receive vaccines of any kind unless they have had two relapse-free years after treatment has ended. Vaccines (especially live) can cause the immune system to kick into “fight mode”, and for some kids, this will also trigger relapse.

For children who are still in their first few years of treatment, if any symptoms of disease suddenly reappear, parents should promptly call the treating physician and report the symptoms. The physician should then decide on a plan of action which should include treatment. For older children who suffer from ongoing, chronic, OMS, doctors may take a more casual, “wait and see” approach. Parent of older children may find that a pattern of symptoms emerge with each illness or infection. While difficult for parents to watch and children to endure, these symptoms will usually go away when the underlying problem goes away without any kind of treatment.