Another mastitis-and-must-I-wean post UPDATED

[RachelGS]

I can't believe it-- I came here to post this and saw another below. I've had recurrent mastitis for a year since my second child was born. It's not a latch or pump or bra problem. We've ruled out all the usual culprits.

It's SEVERE. I recently finished 11 days of IV antibiotics and less than two weeks later am sick again with another IV line in my arm. I can't live like this. We're having trouble conquering the infection, and now I'm urinating blood. It's terrifying. I can be fine and then an hour later can be too sick to take care of myself, much less my children. I've tried acupuncture, homeopathy, antibiotics, lactation consultants, lethicin, you name it. But my baby is only 13 months old. I can't even imagine HOW you wean a child that age.

I need help. I am in such despair, and NOBODY understands. Everybody thinks breastfeeding is so expendable-- except my baby. But also, I'd rather not get widespread staph and die. I really need input here.

[C99]

Rachel,

I am sorry that you are going through this. OF COURSE you don't want to wean your baby. But, as you allude to, how sick are you willing to get to uphold your ideal? Sweetie, NO ONE is going to call you a bad mother or look down upon you for weaning your 13-month-old after being on IV abx for mastitis several times over. While I don't think my committment to BFing is as strong as yours is, I don't think anyone in their right mind would say that you didn't give it everything you've got. Cut yourself a break. I'm sure when you tell Ethan this story when he's 20, he will look at you in awe and wonder and be thankful that you stuck it out for as long as you did. I know that I am looking at you that way right now.

[RachelGS]

Caroline, thank you. The fear is developing a systemic infection, which really could be life-threatening. Obviously it's more important to me to BE here for my children than to be nursing. But short of that, it's more about what Ethan is ready for. If he were not so into it, I wouldn't try to coax him at this point. But... he asks to nurse pretty regularly. He'd be totally confused and stressed, and I have no idea how I'd get him to sleep. That makes it much harder. It's less about my ideals than about his needs, I think. I'm so torn right now. I can't even figure out the right next step.

[alegna]

I just had to send you some I don't have any great insight unfortunately. My one question would be if they've been able to culture the bacteria and identify it. I wonder if you're re-infecting yourself from somewhere?

good luck.

-Angela

[C99]

Rachel,

Don't know if this will help, but...

Rose was still nursing 6-8 times/day (and asking for it often) at 13 months, so I definitely understand where you are coming from. She has since weaned, as I believe it's better for my pregnancies to stop nursing before 20 weeks' gestation. I started cutting her down at 15 months and it was hard. In fact, I *got* mastitis for the first time by cutting too many feedings too fast at the end of August. And at that time, she was not an avid cow's milk drinker. She was, however, an avid table foods eater, so that helped things. I used a lot of organic frozen yoghurt tubes as a distraction from nursing ("You just woke up and want to nurse? How about a popsicle?!"). The hardest feedings to cut, of course, were the go-to-sleep ones (lots of rock, rock, rocking!). They were the last 2 to go. Her last nursing session was about 4 weeks ago. She still likes to put her hand down my shirt and feel the girls, but she hasn't asked to nurse.

[RootSnort]

The peeing blood part makes me wonder if this systemic infection really is coming from the mastitis, or if the mastitis is coming from another primary infection somewhere. Have you seen an infectious disease specialist? Culture and sensitivity also sounds like a good idea before the next round of antibiotics is started if this happens again, perhaps they're not getting rid of all the bacteria because they aren't using the best antibiotic?

[RachelGS]

I'm seeing an infectious disease specialist, yes. They're doing all sorts of cultures now and a cytology workup.

[sophmama]

Wow that sounds really extreme. I am extremely supportive of women going to extremes to continue breastfeeding. In a situation like yours I'm not sure I would. It will not be easy. I would work toward getting him used to nursing just a few times a day with special routines surrounding the nursing - before bed, etc. Then shorten the length of time nursing in each session and focus on the other special routine things you do together (stories, songs, special things together). I know it's not the ideal of CLW, but I'd attempt to reign in nursing a lot. Kids do freak out at first with changes like that but they often adjust and forget after a week or two. I think it is easier to wean a 13 month old than a 2 year old IMO - but I never had to so that's just what I've observed in others.

You could take some sage maybe and start drying up your milk that way a little if it's compatible with your medications.

[papschmitty]

Rachel,
I'm soooooo sorry you're going through this! Your committment to BF your DC sounds amazing. I'm the author of the Mastitis for the 8th time post. You're situation makes my infections seem like a walk in the park! I'm all for making sacrifices to BF our little ones for as long as their little hearts desire. I do, however, also think that Mama's physical and mental well being should be top priority. Believe me, I know that's easier said than done. It sounds like you're taking all the right steps to try to identify the problem and find a solution. If the solution is to stop BF, then so be it. Your DC may have a hard time at first but I'm sure he'd much rather have a healthy Mama and not BF than BF while you're miserably ill. Take good care of yourself in any way that you can and know that you are doing what's best for your family - no matter what you decide to do. You sound like an amazing mother.

Andrea

[mamatoady]

I totally understand where you're coming from and commend your efforts to continue breastfeeding. You are an incredible mom! Unless it was life or death, there is NO WAY I could have weaned my daughter at 13 months. She was nursing no different then from at 9 months. The answer to your question is NO, you do not have to wean your daughter. If you are questioning, then in your heart, you most likely feel like you can go on. Otherwise, you would just feel..."it's time...it's really sad and I know my daughter needs me in this way, but...it's time"

because every child's personality is so different, it may or may not be more difficult to wean a 13 month old vs. a 2 or 4 year old. My daughter would most likely have been totally traumatized or come away with some freaky attachment issues--she TOTALLY relied on the breast. I weaned her 2 months before she turned four and it was a piece of cake (though sad for both of us). If you consider weaning, first think about your dd's personality and what would help here the most through that time. Does she/did she enjoy a sling? Maybe reaquainting her with sling time and you all can slow dance instead of nurse--what kid DOESN'T like to slow dance in mama's arms?

Good luck! what a lucky baby you have!
Sarah

[RootSnort]

Any results on the cultures and cytology? I am hoping for an "Oh, this is what we should have used all along!" moment from the doctors. Sending good thoughts your way!

[RachelGS]

Of all crazy things, one of the meds I was on caused a kidney stone, and that was the cause of the bleeding. I had surgery early Sunday morning. It has been pretty hellish and I'm in a lot of pain, but that's soooooo much less horrible than what I was afraid of. We also have more info about the bugs I'm fighting and I'm on a new IV antibiotic. We'll follow that with a few months of low-dose prophylactic antibiotics. My ID doc did not once mention weaning until this last week. I think it's reasonable to thinkthat active milk ducts are going to be more at risk. However, he was understanding of my concerns about my baby and he'll support me whatever I do. I don't want to wean, but I think I would like to slow down a little if I can do it without him being upset. My body has been through hell.

[papschmitty]

Oh my goodness, you have really been put through the ringer! Your commitment to breastfeeding is very inspiring. What an amazing mama you are!

[RootSnort]

WOW!!! I am glad that the bleeding was not due to systemic infection, and I hope that you are on the mend! Keep us posted on what you decide. WHat IV antibiotic are you on?

[RachelGS]

Daptomycin now.

[essnce629]

OMG Rachel! I read your post on the BBB the other day (I've been banned from posting there) and was so saddened to see that you weren't doing well. I've always looked up to you and loved reading all your posts. I still remember Ethan's birth story! I just happened to be over here looking for advice on recurrent mastitis since I'm working for a woman right now who has a 12 week old and just came down with her 3rd case of mastitis this weekend. I was just reading one of your posts on homeopathic Phytolacca and was trying to find out more information. I'm so saddened to find out that you've been dealing with such severe mastitis for so long. The mom I work for was hospitalized for 3 days for IV antibiotics and later found out that she was infected with antibiotic-resistant staph and the antibiotics they were giving her were useless. She's contemplated weaning from her left side since that is the problem side. Her first bout of mastitis advanced into an orange-sized absess that had to be surgically drained. She thought she was in the clear after they figured out the bacteria strain and prescribed the "correct" antibiotic but nope she came down with another case this weekend that took her by surprise. I'll be calling her tomorrow to see what the doctor's have to say this time. I'm glad your going to be getting on long-term low-dose antiobiotic therapy-- I just mentioned that to the mom I work for as well. Just make sure you take lots of probiotics during your treatment to stave off yeast, etc. Are both of your breasts affected each time or is it the same one every time? Please keep us updated on your health and feel free to email me personally-- [e-mail]

You are definately in my thoughts. My heart dropped when I saw your name (and Abigail's) at the end of your post. Hugs to you and your family.

[RachelGS]

You were banned?!!!

Yikes. What your client is enduring sounds horrific. The mastitis for me is in both breasts, but generally only one flares up at a time. There is tremendous pressure to wean.

The reason staph is so tenacious in the breast especially is that there isn't that huge a blood supply, and it's hard for antibiotics to really reach it. They can seem to knock out an infection, but if there are a few molecules left, the whole thing will grow back. That's where the long-term antibiotics can be helpful. As for phytolacca, it's definitely worth a try. There's more on that on kellymom, I think.

Good to see you here!

[Bisou]

I Feel You Rachel!

Hi Rachel:
I totally feel you. I am in a similar situation with a serious health condition, though it's not quite to where it could be life threatening right now. I also don't know how to wean my son. It's heartbreaking. If I could I would go until he was at least two, if not longer. I never thought I would be one of "those" mothers who nursed for so long, but then I pulled my head out of the sand, got educated, and realized what a wonderful thing long-term nursing is on so many levels--physically and emotionally for mother and baby. Now I will praise long-term nursing (in a non-judgemental way) to anyone who will listen. Below is my post that is elsewhere on this site. I wish you luck in figuring your situation out!

--Holly, mom to Evan, born 7/4/2005


I have a serious skin condition (hidradenitis suppurativa) that causes open wounds that won't heal and severe scarring that can lead to loss of arm and leg movement and even complete disability. I was diagnosed with this a year ago when my son was six months old, and it has gotten progressively worse since then. I am in extreme pain most days. There aren't many good treatments for this, but my dermatologist has recommended a permanent course of Minocine/Minocycline in pretty high doses. Medications and Mothers Milk says this isn't really compatible with BF because it can cause bone and tooth problems. I am currently taking Erythromycin, but I feel bad about even taking that because I don't want to expose my son to antibiotics. Unfortunately, it's not doing too much good, and there's a chance that the other medication won't help either, which is why I have waited so long to try it. I hate to wean my son for something that won't even help my condition, but it has gotten so bad that I feel I should at least try. It's a progressive condition that just gets worse and worse as the months go by.

My son is now nearly 18 months old. I feel proud of myself for nursing him this long because we had a very rough start; I was forced to give him formula in a bottle in the hospital because he had low blood sugar due to my gestational diabetes. The nurses told me if I didn't, they would put him in the NICU and I would have to go home without him. I was scared, so I complied. My hospital experience was terrible, to say the least. Had I know about the supplemental nursing system or other options, I would've tried them, but I didn't know anything. After he had the bottle, he completely refused nursing. He would scream and cry and hit me and push me away. It was devastating. I kept it up, but it took nearly six months before he nursed well. The first few months were hell with pumping every two hours. I'd feed him, get him back to sleep, then pump and clean bottles, and by the time I did all this he was ready to eat again. In addition, I am a single mom so I had very little help!

He is now a champion nurser and loves it, and I wish I could just let him BF until he was old enough to understand the weaning process a bit more. I have tried dropping feedings (he nurses on demand, and sometimes many times a day and all night), but he screams, cries, hits his face, and hits his head on the wall, bed, or floor in complete hysterics. It's very hard to handle this. He does his sign for nursing and says "Nur Nur" (nurse nurse), and it just breaks my heart. I try to comfort him by cuddling him, dancing with him, singing with him, and rubbing his back, but nothing helps. I feel like I am caught between devastating my baby and destroying my body. I've spent a lot of time crying about this!

I know he will probably "get over it" if I just persist, but it's not really the way I want to parent my son. I have a hard time denying him something that gives him comfort, that nurtures him, that is part of his special mommy time. On the other hand, if I am in so much pain that it's hard to play with him or pick him up, that's not good either. If this medication could give me a better quality of life, maybe it's worth trying.

Please, does anyone have good advice on how to help my son through this weaning process? How can I make this less emotionally painful for both of us?

[provocativa]

Random thoughts after reading posts: Did anyone ever try ultrasound pulses to break up the breast lumps? I've read about this. I think Jack Newman, author of the Breastfeeding Book of Answers will consult with you. Email him before you wean! http://www.drjacknewman.com/index.ph...ntact&Itemid=3 Also, an underlying fungal infection can be the ultimate cause of the mastitis. For me, the thrush would cause inflammation, which would restrict the flow in the milk ducts, and then mastitis would ensue. Over and over again. When you recover enough, you should try making your own kefir, because homemade probiotics are much stronger than the pills. You can find more info in the Traditional Foods forum.

[RachelGS]

Yep, I've tried ultrasound. The problem now is that this is so entrenched and the ducts have all gotten inflamed and lumpy. My little guy is so clearly not ready to wean and the pressure to do so is just enormous. I feel totally marooned.