MS Impact On Children

The Problem With Probability Statements
 
WHEN DISCUSSING WITH prospective parents their family planning decisions, professionals tend to fall back on statements of statistical probability: the likelihood of exacerbations; the likelihood of various disease outcomes; the likelihood of a child developing MS. Couples need to understand the meaning of these statistical statements. If a particular woman, for example, becomes one of the very few whose disease progresses unremittingly after childbirth, it does not matter to her that most other women do well. She will still have to cope with her situation. 
 

MS Impact On Children

If one child in a family eventually develops MS, it does not matter to that family that the vast majority of children never develop the disease; the family will still have to cope. In making their family-planning decisions, couples would do well to think through the potential outcomes carefully so that they will feel more educated and prepared whatever the future brings.
 
Support For Families And Their Decisions 
 
AS DIFFERENT COUPLES consider the various issues described here, they will come to a variety of conclusions. Some will make no change in their plans; others may decide not to have children or to begin their family but limit the size to smaller than they had originally planned; still others may decide to adopt a child instead of, or in addition to, having a child of their own. 

Many of these couples will experience some sense of loss as they reshape their dreams. Grieving over this kind of loss is a natural part of the gradual restructuring of a person's self-image and personal plans that necessarily accompanies chronic disease. It is important to recognize these feelings of sadness or loss for what they are, and seek counseling or other support if the need arises.

Similarly, those who proceed with their family plans only to discover that they are among the very few who run into major difficulties may find that this unexpected outcome can lead to feelings of anger, guilt, and anxiety. Couples do not need to handle these feelings alone, and they should feel free to seek assistance from a counselor or clergyman.

Parenting Issues 

THE POTENTIAL STRESSES associated with chronic illness, whether they are physical, psychological, social, or economic, affect not only the person diagnosed with the disease, but also other family members. This discusses issues related to parenting and how the parent-child relationship can be affected when a parent has a chronic illness such as MS. Our emphasis is on supporting the normal development of both children and parents, and on enhancing individual and family abilities while minimizing their disabilities.
 
The various symptoms of MS are considered in relation to their potential impact on the emotional, social, and financial functioning of the family. In addition, some of the common responses of children to their parent's illness are described. Illness-related changes in the family unit and how they interact in an ongoing way with its pre-existing organizational and coping styles are considered.
 
The Impact of a Parent's Illness on Children 

COMMON SENSE SUGGESTS that children who have a seriously ill parent would be at increased risk for physical, emotional, and social problems. Studies involving parental illnesses such as cancer, arthritis, diabetes, and chronic pain have shown that children who have chronically ill parents have significantly higher levels of emotional distress, behavioral problems, somatic (bodily) concerns, and lower levels of self-esteem and social competence than children who have physically healthy parents. 

Although parental illness thus appears to be associated with some difficulties in children's adjustment and functioning, the existing research is too limited and methodologically inadequate to provide firm conclusions about the relationships between specific types of illnesses and different aspects of children's social and emotional development. 

However, there is evidence for other factors that might affect this relationship, including the gender of the ill parent and the child; the age of the child; the child's conceptual understanding of the parent's illness; the quality of the relationship between the child and the well parent; the marital adjustment of the parents; and the mental health of both parents.

Only a few studies have specifically examined the relationship between a parent's MS and the adjustment of children in the family. Several early investigations reported some degree of emotional and social distress in these children, but more recent studies have reported no significant psychological or behavioral difficulties. In one of the few studies that compared these children to children of healthy, non-disabled parents, adolescents from families in which one of the parents had MS were found to be psychologically healthy, more sensitive to the needs of others, more self reliant, and less likely to take life for granted than their peers.
 
However, these adolescents were also significantly more worried about the health of both of their parents than were the teens in the control group. To find out more, you can check out MS Impact On Children.

Multiple Sclerosis And Parenting

Financial And Emotional Security
 
ALL PROSPECTIVE PARENTS, with or without the added complications of MS, need to assess their ability to provide a safe and secure environment for their children. Along with the joys children bring come additional pressures and responsibilities that can stress even the strongest relationship. A husband and wife who are already coping with MS need to think constructively about the future and plan defensively. Because it is impossible to predict the course of the disease, it is necessary to hope for the best while being prepared for whatever may occur. 
 

Multiple Sclerosis And Parenting

Thus, couples need to consider what they would do if the primary breadwinner became too disabled to work, how the children would be cared for if the primary caregiver became too disabled, and whether additional help and support would be available from the extended family. By discussing these issues honestly, couples can make more realistic decisions, reduce some of the stress of uncertainty, and feel more in control of their lives.
 
Parenting Style
 
INDIVIDUALS WITH MS often ask if they will be able to be good parents. The more important question is what being a "good parent" means to them. Whether they realize it or not, most people have an image of the kind of mother or father they want to be, and this image often involves very specific kinds of behaviors.

Men, for example, often think of fathering as playing sports, going camping, or roughhousing with the kids. "How can I be a good father if I can't even throw a baseball?" Women talk about being able to attend school functions, be a room-mother, carpool to various activities, and balance the demands of home and work. Both men and women express concerns about being able to maintain authority and discipline if they become disabled. Both worry about their ability to be good role models for their kids.
 
Couples who raise these important questions may want to begin thinking about parenting in a more flexible way. "Good" parenting can take many forms. The feelings that parents have for their children can be expressed in a variety of actions and activities. The ability to think more flexibly about parenting roles will relieve some of the pressure that prospective parents feel. Knowing that there is more than one way to do the job can make it easier to anticipate success. The confidence that parents have in their ability to provide love and nurturance will translate into feelings of confidence and security for their children.
 
Role Flexibility
 
OVER THE COURSE of their relationship, members of a couple gradually take shared or primary responsibility for certain roles (e.g., breadwinner, household manager, primary caregiver to the children, or financial planner). Sometimes this division of labor is done with much discussion and negotiation, and sometimes by tacit agreement with no real discussion or awareness of the decision-making process. However the process occurs, it is done in the face of an uncertain future. No couple knows for sure what the future will bring, but they hope and assume that it will happen as they have planned, with each able to carry out his or her chosen roles.
 

Couples who question whether it is wise for them to have children should think about how they would feel in the event that significant role changes became necessary. Would a man want to start a family if he knew that he might one day have to take over primary childrearing responsibilities? Would a woman want to start a family if she knew that she might have to become the sole breadwinner? There are no correct answers to these questions; each individual and each couple will respond differently. Once again, the ability to talk honestly about these questions will enable couples to make more realistic decisions and reduce future stress and resentment. To find out more, you can check out Multiple Sclerosis And Parenting.

MS And Natural Childbirth

How Pregnancy And Childbirth Affect MS
 
BEFORE 1950, VIRTUALLY all published literature and medical opinion advised women with MS against becoming pregnant. It was believed that pregnancy would worsen the woman's MS, eventually making it impossible for her to parent effectively.

MS And Natural Childbirth

Beginning in 1950, all evidence started to point in a different direction. Several studies were published presenting retrospective reports of women with MS who had given birth. Taken together, these studies examined more than 925 pregnancies. Only 10% of the women experienced any worsening of their MS during pregnancy, whereas 29% experienced temporary worsening of the disease within 6 months after delivery.

In 1998, a European study of 254 women and 269 pregnancies reported a 70% decline in exacerbation rate during the last trimester of pregnancy (an effect that is more than twice that of the current disease-modifying therapies, each of which reduces the relapse rate by about 30%). During the first three months after delivery, women experienced a rebound 70% increase in relapse rate before returning to their pre-pregnancy baseline relapse rate.
 
These findings have now been confirmed in several additional studies; the average expected rate of exacerbations in women decreases progressively over the course of pregnancy, indicating that certain pregnancy-associated hormones and immunoactive proteins protect a pregnant woman who has MS. Women generally report feeling better during their pregnancies than they felt before becoming pregnant. As a result of these findings, the pregnancy hormone estriol (a form of estrogen) is now being actively studied as a potential treatment for women with MS.

In addition, a retrospective study of 178 women with MS found no difference in long-term disability levels of women who had experienced zero, one, or two or more pregnancies. The researchers concluded that the number of pregnancies has no effect on a woman's ultimate level of disability. This finding is difficult to interpret, however, because it is possible that women with more severe disease chose to have fewer pregnancies than did women with less severe disease.

In a Swedish study, researchers concluded that pregnancy had both short- and long-term effects on the course of MS. In addition to the expected decreased risk of exacerbation during pregnancy, their findings suggested that women who have gone through a pregnancy after the onset of MS might have a reduced risk of developing a progressive course of the disease.
 
In summary, studies have consistently shown that a woman's MS is likely to be stable, or even improved, during the actual 9 months of pregnancy. These studies offer some reassurance for women who are concerned about stopping their disease modifying medication in order to become pregnant; the hormone produced during pregnancy offered at least as much protection as these medications. The risk of exacerbation following pregnancy has been found to range from 20-75% (regardless of whether the pregnancy goes to term or ends prematurely due to miscarriage or elective abortion). Most research supports the view that pregnancy does not affect the final course and degree of disability experienced by women with MS.
 
Long-Term Issues
 
THE LONG-TERM issues surrounding planning, pregnancy, and childbirth involve more complex questions and answers. Because MS is so unpredictable in its course and symptom picture, it is impossible for couples or their doctors to predict what the future will bring. Prospective parents with MS often ask whether they will be able to care for a child. Typically, they are picturing themselves attempting to hold, nurse, carry, or play with their new baby.

Although these are important concerns, they are only the beginning; babies do not remain babies very long. The individual with MS and his or her partner need to consider the following: their financial and emotional security as a couple; their individual views of parenting; and their ability to handle major role shifts within the family if they become necessary. To find out more, you can check out MS And Natural Childbirth.

MS Medications And Breastfeeding

How MS Affects Pregnancy And Childbirth
 
MS DOES NOT appear to affect the course of pregnancy, labor, or delivery. There is no increased risk of spontaneous abortions, labor or delivery complications, fetal malformations, or stillbirths. Therefore, couples do not need to be concerned that the mother's MS will affect her ability to have a normal, healthy baby.
 

MS Medications And Breastfeeding

Anesthetics That Are Safe For Use During Labor Or Cesarean Section
 
EPIDURAL ANESTHESIA IS considered safe and effective for pain relief during labor as well as for surgery, in the event that a cesarean section is required. It is thought to be safer than spinal anesthesia, which has traditionally been avoided in all individuals who have MS. Although general anesthesia is considered safe for women who require cesarean section, most women seem to prefer an epidural anesthesia.
 
Medications That Are Safe For Use During Pregnancy
 
IDEALLY, WOMEN SHOULD seek medical advice before conception in order to review medications they are currently using, eliminate anything that is unnecessary, and substitute safer drugs where appropriate. While there are some medications that can safely be used during pregnancy without harm to the developing fetus, the recommended strategy is to review everything you are taking (both prescription and non-prescription) with your healthcare provider and take only those medications that have been specifically prescribed and/or approved for use during pregnancy. A woman who is taking medications and becomes pregnant should review those medications with her physician as soon as possible.
 
In particular, the disease-modifying medications - interferon beta 1a (Avonex and Rebif), interferon beta 1b (Betaseron), and glatiramer acetate (Copaxone) - are not approved for use during pregnancy. The beta interferon medications (Avonex, Betaseron, and Rebif) have all been given a Category C rating by the FDA, indicating that they have been shown in animal studies to increase the risk of miscarriage.

Copaxone has a Category B rating, meaning that no harm has been demonstrated in animal studies, but there are no data in humans to demonstrate their safety. Fortunately, these immunomodulating medications are not as critical during pregnancy because the hormones produced naturally by the woman's body during this time provide a similar degree of protection. 

Pregnancy-related hormones work to reduce immune activity in order to prevent the mother's body from rejecting the "foreign" fetus. Because a fertilized egg begins to develop well before a woman knows she is pregnant, it is recommended that women stop their disease-modifying medication at least 1-2 menstrual cycles before trying to conceive. The medication can be resumed immediately after delivery if the woman chooses not to breastfeed her baby.
 
Mitoxantrone (Novantrone) and other chemotherapeutic agents that are sometimes prescribed in MS (e.g., cyclophosphamide, methotrexate, azathioprine) are all Category D or X, indicating that they are known to harm a developing fetus. Women are advised to take a pregnancy test prior to taking any of these medications and avoid becoming pregnant while taking them.

MS And Breast-Feeding
 
WOMEN WHO WlSH to nurse are encouraged to do so, provided that they have the requisite strength and stamina to manage the baby safely and do not require medications that would make nursing inadvisable. Breast-feeding has not been found to be associated with any change in the likelihood, timing, or severity of postpartum MS exacerbations.
 
For the first several weeks post partum, an infant should nurse every 2-4 hours in order to stimulate the growth of the mother's milk supply. Feedings can be at more frequent intervals during the day and every 4 hours during the night to allow the mother more extended periods of sleep. If at all possible, she should remain in bed for the nighttime feedings and let her partner (or another helper) bring the baby to her and then put the baby back to bed when the feeding is finished. Once the milk supply is well established, a breast pump can be used during the day to supply milk to be given by bottle at night. As an alternative, formula can be used for night feedings when the infant is approximately 2-3 weeks of age, after the mother has established her milk supply.
 
Because fatigue may adversely affect milk production, it is important for a new mother to have at least 8 hours of bed rest at night, rest time during the day. and sufficient help. Because these demands can rest quite heavily on a working father, creative predelivery planning is required to try to meet everyone's needs.
 
Many of the disease-modifying and symptom management drugs prescribed for MS are not recommended or approved for use during breast-feeding because they can pass into the breast milk and affect the baby. Since the choice to breast-feed means that a woman cannot resume taking her disease-modifying medication (Avonex, Betaseron, Copaxone, or Rebif), she should discuss the relative risks and benefits with her physician. 

A woman whose MS was particularly active prior to pregnancy, or who experienced an attack during the pregnancy, might determine with her doctor that resuming her medication as soon as possible would be the best course of action. Another woman, whose disease has been relatively inactive, might decide to delay resuming her medication for as long as she chooses to breast-feed her baby. This is one of those situations for which there are no definitive answers. The choice is a very personal one, to be made after open and honest discussion with one's physician. To find out more, you can check out MS Medications And Breastfeeding.