Breastfeeding and Sjogren

[deina]

I've got a two month old son who was born prematurely (in 33rd week), but fortunately I've had enough milk, so he was on my milk since beginning. I had enough of it, more than he needed, we had no problem until now. For a few days my milk isn't enough for him, he's always hungry and I've started feeling unwell. I think I've done everything to have more of it (I'm not breastfeeding directly, he was too small and weak for that, I have to use a breast pump - Avent electric), but nothing helps. I'm also feeling very dry - a few days ago my SjS symptons returned, my eyes are very dry and so is my mouth, I barely have any saliva, I'm more tired than usual, so I was wondering whether this dryness can have an effect on milk. Has anyone of you experienced this?

[Dolly Dimples]

              Hi Deina, this is certainly something to think about!

                                                     After all, I surmise milk is secreted in glands of the breast, SS attacks moisture glands,

                                                                                 so I guess it is feasible to assume it is possible.

                                           I'm so sorry you are having this problem , as having a baby is a hard enough task on its own..

                                                                                             as is having SS so young in your life.

                                           I hope someone comes along that can give you a more definate answer, as it is a most interesting thought!

                                                                             Congratulations on the birth of baby boy, you are to be admired for trying to breast feed,
                                                                                                                                        and hope you can continue to do so,
                                                                                                                                               even tho you have to express....    Dolly

   












                                 

[babycakes]

hi there

congrats on the birth of your baby and being able to breast feed him.  I had my son 2 years ago now and even though i know i had sjogrens it wasnt diagnosed until i had a major flare a few weeks after he was born.  anyway one of the problems i had was producing milk.  I tried to breastfeed for 4 weeks and in the end it was too difficult and i reluctantly gave up.  I recently went to see a sjogrens specialist for a 2nd opinion and one of the questions she asked was did i manage to produce any milk.  Apparantly one of the problems with younger women who are diagnosed with sjogrens seems to be (from her experience) producing sufficient amounts of milk due to the reduced secretions on the glands.  this made sense to me.   There is a section on this in Daniel Wallace's book The New sjogrens Handbook but i cant remember the exact explanation he wrote about this issue.Dr price also said flares were not uncommon in women that had recently given birth so maybe a worsening of your symptoms maybe due to a bit of  a flare.  this is just a suggestion, also the tiredness and stress of a new baby can bring on this too.


hope this helps

annie

[Katybarstool]

Deina

I'm not expert in this subject, but I wonder how much of the dryness is related to your hormones getting back to normal? From experience of the hormonal upheaval, I know that my Sjogrens got worse with my sudden menopause. I believe Gursie has had a similar experience.

Just my two penn'orth. 

Congatulations on the birth of your baby.

Kathyx

[TJMAC]

Congrats on your baby.Glad all went well with your prem.I work in an Intensive Care Nursery so I have a lot to do with breast feeding but not along with SJS.If your unwell your milk production can decrease significantly.Drink more and rest more.Now that your baby is 41 weeks could you try putting him to the breast?He could better stimulate milk production.Long term pumping is not always going to produce enough milk for the needs of a growing baby.He may be also having a growth spurt and would be more hungry and harder to satisfy.Also you may need to increase pumping time and freq. to boost milk production.If all else fails it is very common to take Domperidone which has a side effect of increasing milk production.Many moms of prems need this medication.There is also something called power pumping that you should google and try out for one day.Is there a breast feeding center where you live?Prehaps a public health clinic with a lactation consultant.Call the nursery where your baby was cared for,prehaps they can hook you up with a lactation consultant.The baby nursing is ideally what you need.However if your feeling unwell your milk could be dropping off because of that do doubt about it.Hope some of this can help you out.I am off for a few days but I can ask an LC when I am working for more options for you.Good luck.I know how frustrating this process can become.Take the best care of your self that you can and hopefully the milk will return.Its amazing that your still pumping after 2 months.I applaud you.Teresa

[irish]

Congratulations on the new baby. I would not be at all surprised if your sjogrens is affecting your milk production. I didn't nurse the first son, nursed second and got engorged but quit at 2 months to go back to work. The third son I did not have much engorgement and my milk production was variable and by 4 weeks or so it really went downhill and ended up going to the bottle. I was not diagnosed back then and had no idea what was going on.

I now (at the age of 66 and being diagnosed in 2003) am able to go back and see all the things that occurred in my life with my health, etc and know that it was not all in my head. It was Sjogrens. If you have to quit pumping you can be very thankful that you were able to pump and have milk to get your baby through those first hard months. You were very blessed to be able to do that.

You need to check with your OB/GYN and lacatation nurse and see what they have to say about this. Also, I would advise you to see your rheumie about your flare. You might need to be treated to prevent you from being unable to care for your child the way you would like. The sooner you can halt this flare the better off you will be. Good luck. Irish

[deina]

Thank you for your advice and opinion and of course, for gratulations. 

TJmac, I guess I've done most of what you suggested, I've been putting him to breast frequently (I noticed I have less milk when I don't do that). He doesn't drink much, only what comes easily to him, but when he need to suck harder, he stops and doesn't want to try anymore. However, at least it stimulates the production.

Now when I'm doing well again, I've got enough milk, it's possible that it's indeed related - I had more than a week of dryness, my eyes and mouth felt very dry and in this period I didn't have enough of milk. Anything I tried (putting him to breast more frequently, drinking tea, pumping more often, taking some pills...) wasn't enough to help. I'm so glad it's over now, I feel my joints hurt a little bit, but it's fine, nothing serious and the dryness is gone too.

[Chickpea]

Hi Deina

Sorry to come to this late but I wanted to add my congratulations both on the birth of your son and on your persistence in breastfeeding him. 

It's not unusual to have a flare after giving birth and it's good to hear that you're getting through that.  Have you got lots of support at home?  You'll need to rest much, much more than you can imagine.  And then some more!  That's one of the many wonderful things about breastfeeding - you HAVE to spend most of the day sitting or lying down. 

Is he feeding a little more yet?  Just putting him to the breast frequently, even most of the time, will help you produce more milk.  He doesn't even need to suck for him to stimulate the milk production - just licking or snuggling up to you will do the trick.  As the others have said, he'll soon gain his strength despite being a premmy and then he'll have growth spurts when all he'll want to do is feed.  I found these happened at pretty frequent 4/6 week intervals and as long as I remembered that I didn't worry about the extra feeds, or the fact that I didn't get anything done on those few days.

Do post news and let us know how you are doing.  And treasure every moment with him.  Everyone says it - and it's true - but these early days just fly by!

Thinking of you - Chickpea