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Thread: Breast-feeding/pumpin with Ehlers Danlos

  1. #1
    Join Date
    Aug 2008

    Default Breast-feeding/pumpin with Ehlers Danlos

    A very good friend of mine has Ehlers Danlos. She really really wants to nurse her little girl but is having some problems. I am looking for advise from someone who has either BTDT or has some knowledge about this.

    This is from her.
    "major issues (latching issues and biting causing bruising and bleeding, not helped by my EDS) so i've been supplementing with formula and breastfeeding, but i'm thinking about trying to EP.

    the lactation consultants that i saw have tried different things, but nothing seems to help. i really think my EDS makes it just that much harder because of the additional swelling, bruising, and pain."

    Right now she is doing both (pumping and BF with formula to fill in the gap) any advise for successful breastfeeding? I'll also post this in the breastfeeding 0-3mo forum.
    Jaxon (07/13/08) weaned at 27 months
    Alexa and Braxton (11/18/10). My NICU miracles.


    "This above all: to thine own self be true" -Hamlet

  2. #2
    Join Date
    May 2006

    Default Re: Breast-feeding/pumpin with Ehlers Da

    The only other time I've heard of Ehlers-Danlos was on "House" which I guess speaks to how relatively uncommon it is. I kind of doubt you're likely to find to many BTDT moms. Nevertheless, what your friend is experiencing sounds typical of latch problems and the fixes for her issue are probably the same as for any mom. Here's what I think may help:
    - more hands-on help from a good LC, preferably an IBCLC. If she is relying on nurses from the hospital where she gave birth- I assume she had a hospital birth- she should try to see someone independent.
    - make sure the baby is checked for a tongue tie- if baby is tongue-tied, clipping the tie could make things much better
    - google "nipple sandwich technique" for a way to cram the most breast possible into the newborn mouth
    - e-mail Dr. Jack Newman
    - when pumping, use a high quality hospital-grade rental pump. That will enable her to rmove the most milk in the shortest amount of time, reducing the amount of formula she needs to use. And if she does elect to EP a hospital-grade pump is what she needs so she should get hold of one now.
    - if she is leaning towards EP, I encourage her to try to keep the baby at the breast for at least some feedings. If she continues to nurse, and the baby continues to be willing to nurse, she keeps her options open for the future. Latch issues often resolve with time, so there may come a time when she will want to transition to exclusively or mostly nursing. It's a lot easier to do that when the baby still remembers how to latch on and suckle.
    - experiment with different nursing positions. Many moms who have trouble with a shallow latch find that the football hold enables them to get the deepest latch. I personally found the side-lying position to be most comfortable.

    The following are specific suggestions for coping with pain and nipple trauma:
    - go topless/braless as much as possible to reduce chafing to already sore nipples
    - talk to her LCs and doctors about using a combination of 1% hydrocortisone and Bacitracin ointment on her nipples to combat inflammation and infection (use a pea-sized amount, mixed and applied using a clean finger)
    - talk to the LCs about using a nipple shield
    - if she is experiencing cracking, use the above-mentioned hydrocortisone/Bacitracin cream, and/or lanolin ointment, and/or hydrogel breast pads (soothes is the brand I used)
    - if she has cracks, immerse her nipples in a shot glass of warm water for 30-60 second before latching baby on, in order to hydrate the scabs. Wet scabs tear open less painfully than hard, dry ones.


  3. #3

    Default Re: Breast-feeding/pumpin with Ehlers Da

    I know this is an older post, but I have EDS and I'd like to help if I can. Do you know what type of EDS your friend has? Type 3 is the most common. Type 4 is a particularly nasty type involving organ rupture and heart problems.

    As far as your friend's issues with breastfeeding, I don't really see EDS as being a major factor unless it's due to her blood vessel fragility (the sucking/biting might possibly be damaging the blood vessels in her nipples). I think the other poster was correct in her guess that these problems are due to normal latch problems; it probably doesn't have much to do with EDS, at least not directly.

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