The Sjogren’s connection

One night, halfway through my daughter’s evening “cluster feeding” session, where she nurses for hours gathering all the calories she’ll need for several hours of sleep (NOT COMPLAINING that she sleeps 7, 8, sometimes 9 hours at night), my husband brought me a glass of water.  Dutifully, he had read that everytime you nurse you should drink a glass of water.  More water = more milk, as one of my nurses had said.  “Here you go, my dry wife.”

“Oh my God,” I said.  “That’s it!”  Eureka – maybe it’s the Sjogren’s!

As I type this, I have a dry mouth and I’m wondering where my water is.  It’s not because I’m breastfeeding.  It’s because I have an extremely mild case of Sjogren’s syndrome, diagnosed about four years ago by none other than an opthamologist.  I had been experiencing discomfort with my contact lenses, and it turns out I had developed cysts under my eyelids from dry eye and from not changing out my contacts enough, and wearing them too long during the day.  My doctor, concerned about a woman so young having dry eye like me, sent me to a specialist in autoimmune diseases.  The specialist listened to my case and a blood test confirmed his (and my doctor’s) suspicions: I had Sjogren’s syndrome.  It rarely shows up in women younger than 40, and as it was I seemed to have a mild, manageable case – even my bloodtest was borderline, my results being the lowest count of antibodies you can have and still be considered to have the disease.

In Sjogren’s, your body’s moisture producing glands don’t produce enough moisture.  Oh, don’t worry, I still sweat plenty.  But I’m always thirsty – rather, I need liquids to help me swallow my food.  I have had a ton of cavities though I take care of my teeth – because I don’t make enough saliva to kill the bacteria in my mouth.  I have dry skin and moisturize daily, even in the summer.  And I have dry eye.  It’s really not that bad, compared to people who have to take medication for their Sjogren’s.  I’m good with just a few changes to my routine. A year of Restasis, for instance, rid me of the cysts on my eyes and I’m vigilant about changing my contacts on time and not wearing them for 16 hours a day.

While there’s sparse studies linking Sjogrens to trouble with breastfeeding, there is anecdotal evidence on the internet. And it seems logical to me. Rather than reiterate what is out there, here is my favorite article by a Sjogrens formula-feeding mom:

Fearless Formula Feeder – Sjogrens

But if you need something more scientific, here’s a great response on a breastfeeding website:

Medical professional response about breastfeeding with Sjogren’s

When I had my eureka moment, my wonderful husband shared in my response. “That makes a lot of sense,” he said, and reiterated his support for making a bottle of formula whenever needed.

Love him.

Still, I said before that I had two theories about medical conditions preventing me from having a great milk supply, and the second reason is a little more graphic and personal. It is also pure speculation on my part – it’s never been confirmed by a doctor, but then again I never brought it up. How do you explain to your doctor that you think your breasts are shaped weird?

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The breastfeeding freakout, part 2: The odds are still against me

Let me start this post by saying that with better support from a caring lactation consultant, I have been able to breastfeed my daughter better than I was my son.  I’ve heard that milk comes in better the second time around.  I also advocated harder for support and knew a little bit more about it, having already done it.  Still, my daughter gets one, sometimes two, bottles of formula a day.  And trust me, it’s not for lack of trying.  I have come to the conclusion that the odds are still against me: my body is just not capable of producing enough milk for a baby.  After a year and a half of wondering, I have two new conclusions as to why that is.

Plenty of websites and medical professionals, lactation consultants included, love to tell you that if your baby fusses while breastfeeding, it’s not because you don’t have enough milk: “It’s just a growth spurt.  Hang in there!”  “Every woman can breastfeed successfully if she tries hard enough.”  “There are very few reasons why a woman couldn’t breastfeed successfully.”  Did you hear that last one?  There are reasons why you wouldn’t be able to breastfeed.  The ones usually stated have to do with the immediate health of the mother – surgery or illness, for instance.  It’s extremely difficult to find any information on true medical diagnoses that might lead to a woman not being able to breastfeed – a diagnosis that she might have known prior to pregnancy and might have been able to seek more support or at least prepare for supplementing, mentally, physically, and let’s face it, economically.  Formula ain’t cheap.

My daughter lost 12% of her baby weight while in the hospital before I began supplementing her with formula, the same as my son.  Her fussying and crying was exactly the same as his.  And the look of relief, “Ahhh!  Food!  Now that’s what I’m talking about!” was the same as my son’s once her father gave her the first bottle and first taste of formula.  It was an easier decision to make in the moment to supplement, having had to do it once before.  Still, all the doctors, nurses, and lactation consultants assured me that I could stop once my milk came in.

A few days later, I began to finally hear the puff-puff noise of my daughter swallowing while feeding.  What a satisfying sound.  Yes, I did it!  I thought.  I am woman after all!  Half-a-uterus be damned.  But by 7 or 8pm, the fussing continued or worsened, and I begrudgingly continued supplementing with a bottle.  She gained back the weight she needed to and passed her checkups with flying colors.  She was perfect, right on track.  No more, no less.  “You can stop with the formula now,” the pediatrician said.

Well, easier said than done.  In fact, there has only been one or two days in the last seven weeks that my daughter didn’t have formula, not including the first few in the hospital.  More than once I broke down in tears after hours of crying, fussying, and sucking: “Why can’t I be enough?  Why can’t I be enough for her?”  I asked myself if she was supposed to be happy between feedings, like the doctor said she would be, why is she still cranky, tired, or hungry?  She’s not colicky, because I can soothe her… with food.

I tried another “nursing vacation” where you do nothing but nurse for days.  And guess what?  As with my son, it didn’t work.

So I started wondering again, Surely this isn’t for lack of trying.  What might be the cause, something that no one talks about because they don’t want to give you an excuse for giving up on the very difficult work of breastfeeding?

The first clue dawned on me one night as my husband brought me yet another glass of water.