Congenital Primary Lymphedema (Milroy's Disease) - Mothering Forums

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#1 of 8 Old 06-01-2012, 12:20 PM - Thread Starter
 
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DS was born with a puffy right foot.  It is still swollen at 13 months.  Here is a picture of his legs and feet at 10 weeks.  He now has chunky toddler legs, but his foot looks approximately the same.

 

 

So looooong story short, he was examined by two pediatricians and two pediatric orthopedic specialists after birth, he had an MRI at 2.5 months old (including general anesthesia), and no one really could say what it was.  The term "lymphedema" was kicked around, but it was explained to me in a general sense: the foot is swollen, and what is making it swell is excess lymph fluid.  Hence, "lymphedema."  All docs recommended a "wait and watch" approach.  Okay.

 

We just had a follow up appointment with pediatric ortho at Children's Hospital, and they still basically want to wait and watch.  However, I finally looked up lymphedema.  Turns out, the vast vast majority of lymphedema cases are post-op, especially post-cancer treatment, where lymph nodes were damaged.  However, there is a rare (but not THAT rare),  specific condition called congenital primary lymphedema (aka Milroy's Disease), which is basically a malformation of the lymphatic system in some body part, usually an extremity.  It has a very specific treatment plan and the general wisdom is that "watching and waiting" is a BAD approach.  It's congenital because it manifests at birth.  It's primary because it's hereditary (and indeed, there is a history in DH's family of swelling of random leg parts, from a single ankle to all of both legs from hips to toes).  It occurs in 1 in 6000 babies.

 

I am mad that I never looked it up.  I am mad that I took the doctors at their word.  I am mad that no doctor or PA or nurse or anybody thought to look it up.  It's rare but it's not THAT rare.  Someone should have said, "Hey, maybe I should look into this with a vascular specialist." Or even "Hey, maybe I should recheck my medical textbooks that are collecting dust on the shelf in my office."

 

The prognosis is that it's a chronic condition, but with lifelong maintenance (compression socks, etc.) he can maintain a normal foot.  In very very rare cases it can resolve (DH had a swollen left foot that resolved within the first 6 months of life, and I just found another kid on a forum whose one foot resolved by 2yrs, although the other is still affected).  But DS should have been in therapy and wearing compression socks from the beginning.  My instinct was to put him in shoes for the compression, which I did for a while at 3 months, but then the pediatrician urged me to stop so that "new lymph vessels will develop on their own," which if you know ANYTHING about primary lymphedema is so unlikely as to be impossible.  And I listened to the ped, took the shoes off, and didn't really pursue compression any further, even though it seemed like the likeliest solution.

 

It's fine, really.  Of all of the chronic conditions he could have to deal with, this is pretty easy.  It is not life-threatening.  It doesn't affect his intellect or his emotional development.  It doesn't really affect his physical functionality (he's walking fine!).  There are so many kids who have it worse.  But it IS a life long condition.  He may be infection prone due to his malformed lymphatic system, especially in that leg.  If it's not massaged/compressed on a regular basis, the foot could become fibrotic and painful.  But most of all I'm mad that I was blinded and complacent, and that I didn't listen to my mama instincts.  I am now trying to find lymphedema specialists (most of them work with cancer patients) and therapists (ditto) who will take on a pediatric patient, specifically an active toddler.  Which is not what I thought I'd be doing ~3 weeks before giving birth.

 

Oh yeah, it's an autosomal dominant genetic trait -- there is a 50% chance DD will have it too.

 

Just working on processing through this.  Any other mamas out there have experience with this condition?  I'm trying to make connections, work out a plan going forward, and get some support.  Clearly I have to do this myself and can't rely on doctors' guidance.  As of noon today, we do have an appointment with a lymphedema therapist next week, so we are starting down that path.


Wife to DH hat.gif (8/1/09), Mom to DS jog.gif (4/28/11) and DD energy.gif(6/16/12).

 

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#2 of 8 Old 06-04-2012, 12:37 PM
 
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Hi,

 

My daughter is 5 years old and was born with swollen right fool and lower leg. The doctors whisked her off so fast after she was born thinking there was something seriously wrong.  She had the tests for Turner's syndrome and everything else under the sun. Finally after being in the NICU for 5 days she was able to come home with us..We were referred to a Genetic specialist who basically diagnosed her with Milroy's Disease.  We were informed we could pay thousand of dollars to get an official diagnosis but we did not pursue that route.  She had been poked so much in her first few months of life and if it wasn't life threatening and no cure why go through the genetic testing.

 

We have no one in either of our families who has ever had anything like this. We have an 8 year old son also but he was not born with this at all.   Her right foot is still swollen like your son's but she has developed fine and runs and plays like any other child.  Of course finding shoes for a girl is very difficult at times.  She understands she was born that way and we just try on everything before buying.  She's so smart and is so beautiful! I do worry at times if it will get worse or ever hurt her but so far nothing. Her toenails are upslanted and her ankle is slightly swollen also but her left foot and leg look great! She does get some dryness on her top big toe and we do try and moisturize well so it doesn't open up. 

 

My husband is a physical therapist and has tried using tape and we have massaged her foot but nothing seems to really reduce the swelling. Last summer we went to a foot zonoligist who really was wonderful and worked on her feet and it did seem to help some but we do not live in the same town as her.  Anyway it is nice to talk to someone else going through this because it is very rare and we want the best for our kids so the future is not for certain with this disease. 

 

Please write back if you want to talk.  I can send pics if you want to see the changes as she has gotten older.  Good luck on your journey!

 

Sincerely,

Stacey

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#3 of 8 Old 01-10-2013, 04:01 PM - Thread Starter
 
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I lost the bubble on responding to this thread.  My daughter was born very shortly afterward, and then I was in the thick of things with a newborn and a toddler.  

 

Both my son and my daughter have Milroy's.  My son's is in his right foot and my daughter's is in her left foot and maybe lower leg (she's 7 months old, so it's not too clear yet what is lymphedema swelling and what is chubby baby legs).  We are seeing a Lymphedema therapist who has helped me learn how to wrap the foot and lower leg with short stretch bandaging and she also has helped us with some custom garments for day and night. The wrapping and garments along with the MLD massage have really good results for my son, and I hope to start wrapping my daughter's leg soon. My kids are by far the youngest patients she's ever worked with.

 

We saw another pediatric orthopedic specialist who got us a referral to the genetics department at the Children's Hospital, but it would be expensive, and I think they are just going to tell us what we already know, so I'm considering cancelling that.  This does appear to run in my DH's family, on his dad's side.  There is actually quite a history of relatives with large legs, knees, ankles, etc.

 

I am much calmer about this whole thing than I was in June.  I do wonder about if it will be harder on my daughter as she grows because she'll have trouble with "cute girl shoes," but all in all this seems like a very manageable condition.  I hope the kids will pick up how to take care of themselves as they grow and be responsible about it.


Wife to DH hat.gif (8/1/09), Mom to DS jog.gif (4/28/11) and DD energy.gif(6/16/12).

 

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#4 of 8 Old 04-12-2013, 11:41 AM
 
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I realize this is an old thread, but I thought I'd respond because my daughter developed lymphedema in her left leg when she was three weeks old (Askins, it looks like our DDs are just about the same age): it started in just her foot, but now it is her whole leg.  Just this weekend we also noticed swelling in her left hand, which has basically sent me and DH back to the dark place we were in when all of this began over the summer.

I'm part of a parents' of kids with lymphedema group on yahoo that I've found to be really helpful.  Just having other parents to ask questions to who've BTDT is really nice.   


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#5 of 8 Old 06-19-2014, 09:54 AM
 
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Desperate Mommy looking for shoes

Hello, mY name is Laura and I have a 13 month old boy that has Milroy's disease as well. As I was reading this post, there were tears coming down my face. My son was born with both feet swollen. A few months later his left foot went back to normal size. Doctors didn't know what was wrong with him. WE were referred to a genetic Dr at the children's hospital. Had such a hard time finding someone that could help me or guide me with his condition because I have no family with this type of problem nor I have heard about it before. He's now ready to start walking and Im having such a hard time finding shoes that fit. Today I received a package on the mail with some new shoes. I was so excited he was finally going to have a pair of shoes to wear and what was my surprise that they didn't fit. I would like to chat with moms of kids with the same condition as his. Thank you for taking the time to read this and I hope I could find someone to maybe chat and share our concerns and goals.
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#6 of 8 Old 06-20-2014, 04:04 PM
 
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Hi Laura. For shoes I recommend custom ones fom soft star shoes. You end them tracings and measurements of your child's feet and they make them to order in about two weeks. They are pricey, but a pair lasts my daughter about six months. Some parents I know have had luck with wide shoes fom stride rite, but my daughter's normal foot is prett narrow, so that doesn't work for us. There is a group on yahoo groups for parents of kids with lymphedema that I highly recommend joining. It has been hugely helpful for me. Also, feel free to check out my blog about our LE journey, and ask any questions you have there junipermakesthree.blogspot.com

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#7 of 8 Old 06-23-2014, 02:20 PM
 
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Hi Laura,

I agree shoes are not easy to find! I would literally go to Zappos and look for all the wide shoes and then try them all on at home and then ship back what didn't work. Zappos has free shipping both ways.
I wanted to say my daughter is now 7years old! Her gross motor skills developed normally and she is an avid soccer player and tap dancer!
At her age she is very aware of her "puffy foot" and does get frustrated at times that shoes are hard to put on.
We do massage her foot and leg and really pay attention to the care of her foot. We make sure it stays moisturized and free of cuts.
I pray that her swelling does stay below her ankle and does not travel up her leg but there is just not much we know for the future.
We have not taken her to doctors or specialists. We did do the foot zoning and my husband being a physical therapist does help.
I am trying to look into some kind of compression stockings for her so if anyone has any ideas please feel free to post. I am very grateful to have other people posting about their journey! Feel free to write back if you have any questions. As far as I know my daughter is the oldest one in these posts.
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#8 of 8 Old 06-24-2014, 08:26 AM
 
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You know, if your daughter's lymphedema is that mild, she might really benefit from doing an intensive 2-3 week period of PT with a lymphedema therapist. We got our prescription for my daughter's daytime garment from her pediatrician because we have an HMO, and we had to take her to the garment fitter approved by our insurance. However, only four states require that insurance cover compression garments, so you may need to do some arguing with your insurance company if you're not ino be of those states. Otherwise, your PT can give you recommendations for good fitters in your area, and some work directly with the reps from the garment companies, and the reps do the measurements themselves.

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