Infants, Babies, Toddlers, Teens with Lymphedema, lymphedema chronic arthritis, pediatric lymphedema, debulking surgery children, arm and leg swelling in babies, daily care

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Postby patoco » Fri Jun 09, 2006 7:15 pm

Our Home Page: Lymphedema People


By Silkie

I have been searching every where to try and get information for our
mums And I am shocked, There is no help. I have been thinking what I
would do As a Mum.

I am a Mum with lymphedema, I could not sit and wait, till my child was

I would do simple routine with my baby.

1) In the bath I would always stroke the infected limbs upwards away
from the fingers or toes. Playing and laughing making a game of it as
we went along.

2) Never run dry a limb that has swelling pat and it must be thoroughly
dry all the little creases in the limb take extra care with, Particular
attention to between toes and fingers. The least tiny break in the skin
can cause bad infection.

3) Nail care. Toe nails always cut straight across keep them short as
possible. If one caught on something and tore it could set of

4) I would use a cream (non scented) on the limb paying attention to
toes or fingers all the time remember work up not down the limb and
soft as a babies breath, stroke the cream up the limb even if only a
few strokes let this be a fun thing, your preparing you little one for
a routine that he/she will have to follow for life.

Always up the limb one- way don't bring your hand back down the body in
contact with the skin just upward stroke.

If there is any change in colour or reddening of skin stop this has to
be so soft it does not change colour of the skin.

5) I am not suggesting you wrap but might be fun to get baby used to
you handling the limb by pretending to. May be while your wrapping
round do a nursery rhyme the round a round the garden one something
like that just all the time getting your baby used to the touch and
feel of you doing these things.

6) I would always have the limb covered wither with long sleeves or
pants again you will be helping you baby get used to having something
on the limb at all times

7) Remember extreme Heat and cold are bad for lymphedema try to avoid at all times.

8) Always have some form of footwear on if the legs are infected
remembering that the limbs can swell and a tight fitting shoe can not
only rub the skin maybe causing an infection but also damage the
development of baby's feet.

9) Exercise is good for the limb. I have to do a foot exercise lying
down I point my toes to the ground then back up again at the ankle. I
lift my leg keeping it straight from the bed as high as I can, I try to
draw my knees up to my tummy.
Little thing like that could be fun.

10) I did a bonding yoga massage with my daughter, I found the best
place was on the floor. My legs in a diamond shape with big blanket
over them and my daughter between my legs she was comfortable, we
really had lots of songs giggles fun.

11) Baby's bottom . I would be extra careful changing often, remember
one tiny break in skin can allow an infection to start.

These are just my own thoughts on how I would try to deal with lymph if
I had a baby.

Let us hope you get help. But like one or two of our Mums have been
told leave it to little. It must be agonising, if nothing else I would
try to get my child used to the touch and feel of what is after all
going to be their every day routine.

You may have your own ideas of how to Help your baby somwe things you have tried all ready If you have weather successful or not let us know lets get some personal experience together for others the positives and negatives.

Lets keep this information coming in. That way mums can find it and do
what they think best but there are ideas to help.



Additional information:

Children with Lymphedema

http://wwwlymphedemapeople.com/thesite/ ... ediatric...
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Postby maryceady » Fri Jun 09, 2006 10:16 pm

thank you so much for posting your thoughts on this. my son is 12 weeks old on wednesday and he was just diagnosed with milroy's disease. he has pitting edema only in his feet currently -- it does not even extend into his ankles at the moment, for which i am thankful. our doctors are right now trying to figure out what the heck to tell us to do.

i have not cut my son's toenails in a while simply because i'm so scared i'll knick him with the clippers. perhaps i will make another go at it while he's sleeping.

i am currently in contact with a woman from the upledger institute who travels the world, literally, teaching MLD and other therapies. she is looking for someone in our area (souther california) who can help us and/or, at the very least, advise our doctors.

any information we have i will share here.

oh -- btw -- eamonn had pitting edema the hour he was born. we just didn't realize why at first. three neonatologists, two pediatricians, and several other experts all decided it was just due to an odd position in the womb. how we wish that were true!
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Postby silkie » Sat Jun 10, 2006 10:07 am

Hi Mary,

I love your choice of name for your son

And am so glad you found our childrens group

It seems such a little time since i posted that letter
Pat wonderful man he is opened childrens group and by parents sharing

their experience of caring for there own children have given new parents facing this difficult time not only support but a wealth of information
from how to wrap a wriggling baby to great information about
Doctors procedures even shoes.

it just keeps growing its not a group now its a huge family spread across continents all there for the children is that not awesome!! :D


huge hug for Eamonn

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Postby patoco » Wed Jan 11, 2012 8:10 am

Hi Amy :)

Super welcome to the family here. Just wanted you to know that we also sponsor a children with lymphedema group.

Children with Lymphedema

http://health.groups.yahoo.com/group/ch ... ymphedema/

We have some 470 parents from literally around the world. The info, comradery and support is totally fantastic.

It is hard to believe that in 2012, the medical world still knows so little about lymphedema.

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