Message:

Dear Barbara and Kay,
I am consulting with a 24 year old primip patient in her 3rd trimester who has Sjogren’s Syndrome. She is wondering if it will affect breastfeeding. She was diagnosed 3 years ago and is being followed by a rheumatologist and a perinatologist. She describes her condition as “mild”, with her symptoms just affecting her eyes and saliva. Her only medication for this syndrome prior to becoming pregnant, was Restasis, which she is not using while pregnant. I am not familiar with this syndrome and when I search the internet, I don’t find much information about Sjogren’s syndrome in breastfeeding women.

Thanks,
Jo Lynn, RN, IBCLC

Barbara and Kay respond:

Sjogren’s syndrome is grouped in some of the texts with other autoimmune and connective tissue disorders such as lupus and rheumatoid arthritis. Some of these are linked in the literature with potential postpartum flare-ups, but breastfeeding is not contraindicated. I had a client some years back who had this condition and breastfeeding was not affected. However, there is so much variability in terms of the severity of all such syndromes, and when you add stress, fatigue, and postpartum hormone fluctuations, it can be difficult to generalize between cases.

Lawrence & Lawrence, in Breastfeeding: A guide for the medical profession (7th ed, 2011, pp 561, 580) include a brief mention of Sjogren’s. They write:

“Primary Sjogren’s syndrome, which involves the glands of secretion (sweat, salivary) is known to be associated with hyperprolactinemia, but because of the characteristic abnormalities of secreting glands, lactation may not be successful. Sjogren’s syndrome has also been seen in association with Raynaud phenomenon. Breastfeeding is not contraindicated.” (p 580)

On page 561 under hyperprolactinemia they state:

“If a woman has achieved pregnancy with hyperprolactinemia, postpartum lactation is possible.”

Revai, et al. discuss two cases of women who had Sjogren’s Syndrome at the time their babies were born. Both struggled with milk supply issues.  Both were prescribed 200 mg of hydoxychloroquine, a mild anti-inflammatory medicine used in patients with autoimmune diseases. Both had improved milk supply within 2 weeks.

Revai K, Briars L, Cochran K. Case series of Sjogren’s syndrome and poor milk supply partially responsive to hydroxychloquine. Breastfeeding Medicine 2010; 5(1):332.

Hale, Medications and Mother’s Milk (14th ed, 2010, pg 276) lists Restasis as a category “L3” or “Moderately safe.” The AAP appears to have some concerns with regard to this medication during breastfeeding.

Hale notes that Restasis interacts with oral antifungals (such as fluconazole, etc) so be sure to warn her not to take oral “yeast” medications while also taking this drug. We advise you to get more information from the mother and suggest that she (and her doctors) call the Infant Risk Center (Dr. Hale’s wonderful phone service at the Texas Tech Health Science Center) to inquire about any new info on drugs and Sjogren’s Syndrome. That number is: 806-352-2519.

With regards to your role, simply be supportive with normal advice and adopt a watchful waiting stance. Checking in periodically during the first 2 weeks would be prudent in order to monitor her situation to determine if all expected events have occurred (milk coming in, normal volumes of milk, diaper outputs, etc.) Given the remark in Lawrence & Lawrence regarding Raynauds phenomenon, it would be useful to provide some anticipatory guidance on managing vasospasm. This would include: applications of dry heat and gentle massage of the nipple to improve blood flow during episodes of blanching, and lots of reassurance that the pain is annoying but not dangerous.

Just knowing that you are available to help her would be so encouraging and probably help this mother get past most issues. If it turns out that she has worsening symptoms, you can also be available to help her look at options.

As usual, we encourage LCs managing interesting or unusual cases to take some notes and consider writing them up in the form of a brief case report and submitting to places like the Journal of Clinical Lactation, which is focused on practical management aspects of breastfeeding.

Interesting updates on our recent Ask B & K case regarding the toddler who refused solids.  Ameera, the Egyptian IBCLC who wrote us about this case communicated the surprising news that the mother weaned the baby and the baby immediately began accepting solids.  This is a very counter-intuitive result, but in the interest of intellectual honesty, we feel obligated to report the outcome.

We also received a very interesting response from a mother with a similar problem whose baby was eventually diagnosed with swallowing dysphagia.  Read her story by scrolling down to the bottom of our response to Ameera.  Please send us your thoughts on these cases.

Swallowing dysphagia as a cause of rejection of solid foods

A mother wrote us in response to Meera’s question.  Her comments are quite interesting, and Kay and I thought we would share them because they represent another organic reason why a child might reject solids.  Shannon’s persistence in seeking a reason for her child’s delayed reaction to a normal developmental milestone shows how difficult it can be to find answers and how often it is necessary to seek second and even third opinions from care providers.

Shannon writes:

I want to share another possible reason why the baby in Egypt will not accept solids.  When my son, Finn, was 6 months old, I was concerned that he refused to take any solids.  He accepted food, but as soon as it touched the back of his mouth he gagged.  Pureed food could be thick or thin, but it always elicited a gag response.  We tried several varieties of fruits, vegetables, and cereals with no success.  Even juice, water or expressed breast milk fed from a spoon made Finn gag.

Some of my LLL friends told me not to worry, sharing that their babies refused solids until 10 months or 12 months. But what was so overwhelming and concerning to me was that Finn was  also unable to take a bottle or cup.   He had the same gag reaction to anything in his mouth, so eventually he began refusing the bottle or cup.  I recall he was able to take the bottle a few times in his first month, but from 2 to 6 months was unable to. This did not seem normal to me.

His breastfeeding behavior also concerned me.  Finn often broke suction once my milk let down.  I could hear him breaking suction as well as feel it. Even at 8 months old he would often come off the breast gagging, unable to handle a fast milk flow rate.  Finn began sleeping 4-5 hours at a stretch at night around 3 months old, giving me some rest, but when he was 7 months old he went back to nursing every 2-3 hours at night. The pediatrician and I thought this was because he was hungry.  We began doing weekly weight checks and he was staying in his curve, I think due to the frequency of his night feeds.

I teach classes in the evening once a week and am away from him for 4 1/2 hours.  My husband had to bring the baby to me before class, at the class break, and at the end of class to nurse because his feeding difficulty made it impossible for others to care for Finn.

The pediatrician looked in his mouth and noticed a bifid uvula and suggested we schedule an appointment with a pediatric ENT to rule out a submucous cleft of the palate.   It took a month to get the appointment.  In the mean time I contacted Early Intervention to see if Finn would qualify for services.

A Speech Therapist came out to perform an evaluation. After screening Finn for delays in all the developmental areas she did not observe enough delays for him to qualify for therapy, even though at 9 months, he could not take a cup or bottle, eat any solid foods, or sleep for more than 3 hours at a time.

 

The speech therapist told me to just let him “cry it out” at night.  She advised also my husband to let Finn cry because at 9 months he should be able to go 4 1/2 hours without eating and that the crying was a behavior issue not a hunger issue.  This advice disturbed me because although I know my husband is not at risk for shaking a baby, the statistics show that men who are left with crying babies are the most likely to shake them.  Her advice did not seem sound or humane to us.

We finally saw the ENT and he made a diagnosis of dysphasia and he ordered a barium swallow study.  Once we got the diagnosis, we became eligible for  Early Intervention services in our home. The Occupational Therapist (OT) helped us schedule the swallow study and was there to help us understand the results.  We learned that at 10 months old, Finn had the swallowing capability of a 3-month-old.  Along with the slight structural abnormality, his main problem was low tone.  The OT specialized in a technique called Vital Stimulation Therapy that uses externally applied low-current electric stimulation to the neck and face.  She told us that she had seen this help many infants improve their breastfeeding and solid feeding abilities so I was eager to try it.  (Their website http://www.vitalstim.com/ describes it as an “FDA approved therapy for dysphagia.”)

The OT attached electrodes to Finn’s neck and put ace bandage around to hold it on.  She started out at a low frequency and then after 10 minutes increased.  He tried to pull the wires off a few times, but got used to it quickly.  He nursed for the first 5 minutes, then the rest of the 30 minutes he sat on my lap and played as she increased the intensity.  A few days later, he was able to take a few tiny sips of juice from a small cup for the first time without gagging.  A week later he was able to take a few tiny tastes of yogurt off a baby spoon!  This was a milestone for Finn, but to me it meant freedom!

Finn only needed 3 more sessions of vital stimulation to achieve swallows from the sippy cup and move onto other foods like french fries. When Finn was 12 months old,  the OT decreased the therapy from weekly to twice a month.  At 16 months, Finn saw the OT only once a month.  At 21 months, we had our final OT session.  Finn is now 28 months old and still mostly nurses, only eats a few bites of food when he is around me, but when I am working and away he eats more.  At his last appointment he was up to the 47 percentile from 30th just three months before.

I hope sharing my story will help others consider swallowing dysphagia as a possible reason for solid food refusal.

Shannon.