Yesterday was the first step in a long journey.
You may recall that Andrew was born with a puffy foot. Then he had an MRI to see what it might be. Then all the docs said that because it didn't seem to bother him, we should just wait and watch it.
In the meantime, Andrew has been walking. He walks quite well, actually. He is in all ways a normal, rambunctious toddler. Except his right foot is still puffy.
To recap the story so far, 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 everything checked out fine. Except no one really could say
what the swelling 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 or vessels were damaged or removed (which is secondary lymphedema). 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 Travis'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
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 (Travis 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 Andrew should have been in therapy, at least getting massage, and possibly 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 our former 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. But I listened to the
ped and took the shoes off.
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 much worse, scarier things to deal with. But it is most likely a life long condition.
He may be infection prone due to his malformed lymphatic system,
especially in that leg. If it's not massaged and/or compressed on a regular
basis, the foot could become fibrotic and painful. So this is our life now... it's *his* life now.
Oh yeah, it's an autosomal dominant genetic trait -- there is a 50% chance Baby Girl will have it too.
I spent last week 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. Two therapists I called told me outright they don't work with kids. (I'm like, there is no such thing as a pediatric lymphedema therapist, so where to you suggest I go?) But the third call was the charm, and we found a therapist who would take a look. It only takes one!
Yesterday, we had our first session with the therapist. The lady that we are seeing is FANTASTIC. She appears to be
the most highly trained/credentialed/experienced LT in the Denver metro,
and she didn't hesitate to see a toddler.
After I related the whole story and family history to her, she showed me the massage
techniques to help his lymph nodes drain. She suspects that, rather
than having malformed or missing lymph vessels in his ankle, it's
actually the major lymph nodes in his groin area that are having trouble
draining. She thinks if we can help those drain more effectively,
along with the armpit ones and the belly button ones (I didn't realize
there was a cluster at your belly button) that we will see the foot go
down some even with no compression.
Initially she wanted to not do compression yet, but after examining
his foot, she noted what I have been noting over the past couple months or so - that his foot was getting harder.
Because of this, she decided that we should meet next week (barring a
new baby) and she will show me how to wrap it then. She is highly
optimistic that we will reverse the hardening, and that he can have a
normal size foot, with help.
The massage is pretty easy to do, and it's a light touch, since lymph nodes
and vessels are right under the skin. Andrew seemed to enjoy it and
relax with it. He really loves touch (hugs, back rubs, cuddles,
wrestling), so I'm not surprised that he takes to it well. I did it
before we put on his pajamas for bed and then again when he woke up this morning and I changed his diaper. Ideally we'll do the massage 2-3
times a day.
Also, after some phone tag, I was finally able to reconnect with the
PA at my pediatrician, who we have been seeing at well child visits.
She was shocked at the non-answer that we got from
Children's Hospital Ortho, and committed to helping me find a medical doctor
(as opposed to a therapist) who is familiar with the condition and
perhaps better suited to do the follow up visits. She was going to call
CH Ortho too, because she knows the doc we saw and wonders why there
was such a disconnect in the level of care/detail of answer we received.
The therapist was already saying she wanted to call up our ped to
coordinate care, and the PA at the ped was happy we were starting the
therapy and is now prepared to speak with the therapist. Everybody's on
board - we are assembling a team.
So, I'm really happy with this. It's amazing what a relief it is to
(a) talk to someone who actually knows what they are talking about and
(b) have a plan of action. I am so confident that with the proper care
and maintenance, Andrew is going to have a normal quality of life, and I feel like we are now on a good path. And I
feel much better that the PA at the ped validated my frustration and
awkwardness with the ortho docs. It's amazing how having someone say,
"Yeah I agree, that doesn't sound right.," makes you feel not so crazy.
Lessons: Be your own advocate, and do your own research. The doctor isn't your master and commander, he's merely someone on your team - don't turn your brain off. Get second opinions. Trust your instincts. Be thankful everyday for your awesome little boy.