FROM THE NLN:
Pregnancy and LE:
From October-December 1997 NLN Newsletter, by Saskia
R.J. Thiadens, R.N.
posted on lymphland 2/07
*In the past few
months, the NLN has received an increasing number of calls inquiring about the
risk factors of pregnancy for a woman with primary lymphedema. For the many
women and couples who called, and those who may be considering having a child,
we have addressed a number of these questions below. Ed.*
Q: What is the
percentage of children born with or who develop lymphedema when the mother has
primary lymphedema?
A: Due to the inattention given lymphedema in the U.S.,
we do not have any concrete data identifying the number of people born with
primary lymphedema. Here at the NLN, the number of calls we receive from young
parents, concerned that their child will inherit the condition, is increasing.
We do see, and talk to, a growing number of people who have multiple
generations in their family affected by primary lymphedema, and some who have
none at all. However, a number of my patients with primary lymphedema from both
backgrounds have had very healthy, lymphedema-free babies who, so far, have not
developed the condition. So, at this point, it's very difficult to say what the
odds are.
Marlys and Charles Witte, M.D.'s at the University of Arizona
(Tel: 520-626-6118), are actively working with a number of families, trying to
identify some genetic link and/or other correlations. Possible genetic links
are also being studied in the Department of Human Genetics at the University of
Pittsburgh, PA. For more info about the study, contact Kara Levinson, MS, at:
412-624-4657. Or visit their website at:
http://web.archive.org/web/20020211221431/http://www.pitt.edu/~genetics/lymph/lymph.htm.
This research data will greatly enhance our ability to forecast a child's
susceptibility.
If you do have a child with lymphedema: there is a new
organization called "PLAN" (Primary Lymphedema Action Network), which focuses
on families with young infants born with primary lymphedema. For more
information, call Wendy Chaite: 516-625-9862.
Q: Are there concerns of
permanent deterioration or worsening of a mother's condition if she has primary
lymphedema and becomes pregnant (such as spreading to the other leg, additional
risk of infection, etc.)?
A: It really depends on the overall condition of
the mom. If she is healthy without any other medical problems, there should not
be a problem. But it is very important that couples prepare themselves and
realize the tremendous re-sponsibility. You'll need to increase your daily
care, such as manual lymphatic drainage twice a day, wearing well fitted
maternity panty hose (45-55 mm/hg) or, as some women do, wear an additional
stocking to add compression. Avoid sodium and drink lots of fluids (water, tea,
natural juices, etc). In regard to spreading to another limb - and if you are
concerned, I would suggest doing a Lymphoscintigraphy (contact the Witte's; see
answer to question above) - a very sophisticated diagnostic tool used to
visualize the lymphatics - prior to your pregnancy. Also, if you have a history
of recurrent onset of lymphangitis in your leg, you will be at greater risk of
recurrent infection during pregnancy as a result of increased weight/swelling
and protein in the tissue. If severe enough, an infection could cause a
miscarriage, so you will want to watch closely for signs and
symptoms.
The best advice: use common sense and practice meticulous
self-care. If you are well, there is no reason that you cannot have a healthy,
happy baby.
Q: What are the possible complications from a C-section vs.
vaginal delivery and its relation to lymphedema?
A: Both procedures have
their concerns. Any time an invasive procedure is performed on a patient with
lymphedema, you want to be careful. Especially the woman who has swelling in
the pelvic area and lower abdomen needs to make sure to take antibiotics just
before, during and after the C-section. Vaginal delivery always has risk
factors as well, especially for a woman who is in labor for many hours: usually
there is more swelling in the pelvic region and leg(s) from pushing. But once
the baby is born, swelling usually subsides in a matter of days.
Q: Is
it safe to undergo Manual Lymphatic Drainage during pregnancy?
A: Not only
is it safe, but it's extremely important to continue therapy. Your goal is to
keep the leg(s) in its optimum condition. Do not forget to use lotion to keep
the skin soft and supple. See a podiatrist educated in lymphedema just to make
sure that you do not have any possible risk factors such as fungi, Athletes
foot, callouses, etc., which could lead into infection. VERY IMPORTANT: Be sure
to wear well-fitted high compression maternity stockings.
Additional
tips for pregnancy: Educate your GYN and other involved doctors about
lymphedema. Get plenty of rest, avoid stress when you can, follow the 18 STEPS
TO PREVENTION, and if possible, shoot for winter time for your last trimester,
when it's cool. Happy Pregnancy!
And on a different note...
Q: I
recently tried to clear weeds from my garden and a few days later noted itching
and pain in my arm. Blisters appeared and I realized I had poison oak. Shortly
after, I noticed them on my thigh and stomach, likely from resting my arm on
these areas. I am very concerned that it could spread to my lymphedemic arm,
and since my immune system is still compromised from chemo, that I could become
very ill. What should I do?
A: It is extremely important to keep your hands
as clean as you can, and avoid touching the area affected. While wearing
surgical gloves, wash these areas with water and soap first and dry well.
Definitely call your doctor and request antibiotics as a prophylaxis ASAP. Make
sure that you do not have an allergy to the antibiotic since this could worsen
the symptoms. You might try an antihistamine for the itching, and absolutely
avoid scratching as much as possible. Keep the affected areas exposed to air
and avoid wearing garments or tight clothing. Also, stay out of the direct sun
until it clears up. Poison Oak can be nasty and for patients with lymphedema
there is an even greater concern due to the possibility of lymphangitis
(infection). Following some or all of the above guidelines will help improve
your odds of staying infection-free.
Pregnancy and LE:
From October-December 1997 NLN Newsletter, by Saskia
R.J. Thiadens, R.N.
posted on lymphland 2/07
*In the past few
months, the NLN has received an increasing number of calls inquiring about the
risk factors of pregnancy for a woman with primary lymphedema. For the many
women and couples who called, and those who may be considering having a child,
we have addressed a number of these questions below. Ed.*
Q: What is the
percentage of children born with or who develop lymphedema when the mother has
primary lymphedema?
A: Due to the inattention given lymphedema in the U.S.,
we do not have any concrete data identifying the number of people born with
primary lymphedema. Here at the NLN, the number of calls we receive from young
parents, concerned that their child will inherit the condition, is increasing.
We do see, and talk to, a growing number of people who have multiple
generations in their family affected by primary lymphedema, and some who have
none at all. However, a number of my patients with primary lymphedema from both
backgrounds have had very healthy, lymphedema-free babies who, so far, have not
developed the condition. So, at this point, it's very difficult to say what the
odds are.
Marlys and Charles Witte, M.D.'s at the University of Arizona
(Tel: 520-626-6118), are actively working with a number of families, trying to
identify some genetic link and/or other correlations. Possible genetic links
are also being studied in the Department of Human Genetics at the University of
Pittsburgh, PA. For more info about the study, contact Kara Levinson, MS, at:
412-624-4657. Or visit their website at:
http://web.archive.org/web/20020211221431/http://www.pitt.edu/~genetics/lymph/lymph.htm.
This research data will greatly enhance our ability to forecast a child's
susceptibility.
If you do have a child with lymphedema: there is a new
organization called "PLAN" (Primary Lymphedema Action Network), which focuses
on families with young infants born with primary lymphedema. For more
information, call Wendy Chaite: 516-625-9862.
Q: Are there concerns of
permanent deterioration or worsening of a mother's condition if she has primary
lymphedema and becomes pregnant (such as spreading to the other leg, additional
risk of infection, etc.)?
A: It really depends on the overall condition of
the mom. If she is healthy without any other medical problems, there should not
be a problem. But it is very important that couples prepare themselves and
realize the tremendous re-sponsibility. You'll need to increase your daily
care, such as manual lymphatic drainage twice a day, wearing well fitted
maternity panty hose (45-55 mm/hg) or, as some women do, wear an additional
stocking to add compression. Avoid sodium and drink lots of fluids (water, tea,
natural juices, etc). In regard to spreading to another limb - and if you are
concerned, I would suggest doing a Lymphoscintigraphy (contact the Witte's; see
answer to question above) - a very sophisticated diagnostic tool used to
visualize the lymphatics - prior to your pregnancy. Also, if you have a history
of recurrent onset of lymphangitis in your leg, you will be at greater risk of
recurrent infection during pregnancy as a result of increased weight/swelling
and protein in the tissue. If severe enough, an infection could cause a
miscarriage, so you will want to watch closely for signs and
symptoms.
The best advice: use common sense and practice meticulous
self-care. If you are well, there is no reason that you cannot have a healthy,
happy baby.
Q: What are the possible complications from a C-section vs.
vaginal delivery and its relation to lymphedema?
A: Both procedures have
their concerns. Any time an invasive procedure is performed on a patient with
lymphedema, you want to be careful. Especially the woman who has swelling in
the pelvic area and lower abdomen needs to make sure to take antibiotics just
before, during and after the C-section. Vaginal delivery always has risk
factors as well, especially for a woman who is in labor for many hours: usually
there is more swelling in the pelvic region and leg(s) from pushing. But once
the baby is born, swelling usually subsides in a matter of days.
Q: Is
it safe to undergo Manual Lymphatic Drainage during pregnancy?
A: Not only
is it safe, but it's extremely important to continue therapy. Your goal is to
keep the leg(s) in its optimum condition. Do not forget to use lotion to keep
the skin soft and supple. See a podiatrist educated in lymphedema just to make
sure that you do not have any possible risk factors such as fungi, Athletes
foot, callouses, etc., which could lead into infection. VERY IMPORTANT: Be sure
to wear well-fitted high compression maternity stockings.
Additional
tips for pregnancy: Educate your GYN and other involved doctors about
lymphedema. Get plenty of rest, avoid stress when you can, follow the 18 STEPS
TO PREVENTION, and if possible, shoot for winter time for your last trimester,
when it's cool. Happy Pregnancy!
And on a different note...
Q: I
recently tried to clear weeds from my garden and a few days later noted itching
and pain in my arm. Blisters appeared and I realized I had poison oak. Shortly
after, I noticed them on my thigh and stomach, likely from resting my arm on
these areas. I am very concerned that it could spread to my lymphedemic arm,
and since my immune system is still compromised from chemo, that I could become
very ill. What should I do?
A: It is extremely important to keep your hands
as clean as you can, and avoid touching the area affected. While wearing
surgical gloves, wash these areas with water and soap first and dry well.
Definitely call your doctor and request antibiotics as a prophylaxis ASAP. Make
sure that you do not have an allergy to the antibiotic since this could worsen
the symptoms. You might try an antihistamine for the itching, and absolutely
avoid scratching as much as possible. Keep the affected areas exposed to air
and avoid wearing garments or tight clothing. Also, stay out of the direct sun
until it clears up. Poison Oak can be nasty and for patients with lymphedema
there is an even greater concern due to the possibility of lymphangitis
(infection). Following some or all of the above guidelines will help improve
your odds of staying infection-free.