Heartbroken - have to wean. Tips requested.

[ErynneM]

This is a long post, so please read it before blasting me for forcefully weaning my son. I don't want to; it's not a choice.

I was diagnosed with Systemic Lupus when I was 15. At 25, I was declared in remission, and we decided to take advantage of it and have a baby. I have been exceptionally lucky - I have remained in remission through the entire pregnancy and for 16mos of my son's life.

Now, he is 16.5mos old and my SLE is back. Full force. I went in to see my rheumatologist today because my hands are too sore/swollen to hold a pen or pencil and write, and my knees to swollen for me to crouch down onto the floor to be with my son or to do my parttime job (i'm a dog trainer), and my shoulder hurts so much, it's waking me at night.

My doctor said I'm worse than she's seen me in years, and I have been put on a pulse treatment of Prednisone. I will be on it for about a month, and she says at the end of the month, she wants to put me on CellCept (mycophenolate; Hale's lists it as an L4).

I am hoping to avoid CellCept in a month. I am willing to change my diet as much as possible (more raw fruit/veg, raw smoothies daily, etc) and do everything in my power to nudge this symptom flare away and allow me to continue nursing my son, but I'm terrified that in one month, I will be told to wean my little man.

He still nurses multiple times every day. He nurses upon waking in the morning (we cosleep), and nurses anytime he gets hurt or frustrated, and nurses to fall asleep for naps and at night. He also wakes at least once or twice most nights to nurse.

I figure the best place to start would be night weaning. I really, REALLY do not want to do this. I know in my heart that the best thing for him is to nurse until he's at least 2yr, but my doctor says the risk of organ involvement in SLE is too high and so I have to wean him.

I have read what Hale recommends when CellCept is indicated, but I won't see my doctor again for a month to ask her if I could be put on cyclosporine (an L3) instead. So I'm going on the belief that in roughly a month and a half, I won't be able to nurse my little nursling anymore.

Please give me some tips for gentle, loving night weaning. Ideally, I would like to be able to get him to sleep at naps and bedtime and to get him back to sleep upon waking at night without nursing him.

Thank you so much for reading this, and thank you for any advice you may have.

- E

[ASusan]

Originally Posted by ErynneM

I am hoping to avoid CellCept in a month. I am willing to change my diet as much as possible (more raw fruit/veg, raw smoothies daily, etc) and do everything in my power to nudge this symptom flare away and allow me to continue nursing my son, but I'm terrified that in one month, I will be told to wean my little man.

He still nurses multiple times every day. He nurses upon waking in the morning (we cosleep), and nurses anytime he gets hurt or frustrated, and nurses to fall asleep for naps and at night. He also wakes at least once or twice most nights to nurse.

I figure the best place to start would be night weaning. I really, REALLY do not want to do this. I know in my heart that the best thing for him is to nurse until he's at least 2yr, but my doctor says the risk of organ involvement in SLE is too high and so I have to wean him.

I have read what Hale recommends when CellCept is indicated, but I won't see my doctor again for a month to ask her if I could be put on cyclosporine (an L3) instead. So I'm going on the belief that in roughly a month and a half, I won't be able to nurse my little nursling anymore.

Please give me some tips for gentle, loving night weaning. Ideally, I would like to be able to get him to sleep at naps and bedtime and to get him back to sleep upon waking at night without nursing him.

Thank you so much for reading this, and thank you for any advice you may have.

- E

I am so sorry. Lupus is a pain, literally. I had a diagnosis of lupus a few years ago. (more on that in a minute) I think the prednisone might be very helpful, as it is a powerful drug. However, (and I haven't looked into this) consider the possibility that your DS might get some via the milk, and it might act as an "upper" in his system, keeping him awake - or more wakeful - during the night. When we put my son on a prednisone variation (for asthma) in 3-5-day bursts, he goes a little crazy the first night or so. Just something to consider in terms of behavioral outcomes. Again, I'm not sure it goes into the milk.

Night weaning was exactly what I was thinking as a place to start, and you suggested it yourself. It might give you the added benefit of some more uninterrupted sleep, once he is nightweaned, and the added rest might help you tolerate the pain that much more. Can you have your DH put him to sleep and deal with night-waking for the transition? My DS goes to sleep sans-nursing at daycare and for daddy, but if I'm around, he won't do it. For night waking, I cut out the last nursing session first. That is, at his 5am wake-up, I told him that he could not nurse until morning, that nurses were asleep. Other moms put a nightlight on a timer, which is set to turn the light ON at, say, 6am, and that is when they will then nurse again. I know that lupus can be more painful in the mornings (it was for me), so getting rid of this last session -and maybe even the morning session - might help with your disease management. Can your DH get up with him in the morning and do breakfast with him so you can get a more restful start to your mornings?

When I cut out the earlier nighttime wakings (1-2am-ish), it was more difficult. I walked the floor with him while he fussed for nursing. I would bet you are in pain during the night, so can you hold him while lying down or half-sitting in bed and sing to him? I discovered that DS is soothed when I recite Dr. Seuss' Big A Little a What begins with A? book. I am not as good a singer as DH, so that never worked. But, DH sings with him and lets him listen to one ear bud of an ipod that they share, and DS picks out the song. This started somewhere around 14 mos and is now part of their bedtime routine on nights when DH puts him down. Maybe your DH would be willing to do something like that? What didn't (and still doesn't) work is lying in the same co-sleeping position as nursing occurs/ed in. He just keeps pecking at my breast and fussing. I need to change position entirely (sitting up and holding, or standing), or pass him off to DH while I steal away.

Re: my lupus ex-diagnosis. About 7 years ago, I was diagnosed with lupus via my bloodwork and some very wonky symptoms. At first, anti-inflamatories helped, but then I had to be put on Plaquenil for the pain. Plaquenil cleared up a LOT of the symptoms, but I still had some pain and strange symptoms, AND I started getting significant side effects. I did acupuncture and Chinese herbs weekly for 6 months. It completely cleared up my remaining pain and symptoms. I also got pregnant. Three months later, I weaned off Plaquenil, and I had a full diagnostic panel of bloodwork, and they could not find any evidence of lupus - or even autoimmunity - in my blood. Acupuncture, from a very good provider, was like *magic* for me. I highly recommend it, no matter what you have to do in terms of western meds or breastfeeding. Best wishes! I hope you feel better soon.

[maddymama]

Hi Mama,
I will say first off that I know almost nothing about lupus, and I will say that my heart goes out to you for having to deal with something so troubling. I'll address my message to the weaning part of your message.
While weaning is difficult, much of breastfeeding a toddler is about a connection with your child. If you need to wean, I'd try to figure out some simple but highly "connective" activity/tradition/routine you could develop with your child, i.e. extra special snuggles, extra book time, a secret kiss, more playtime, etc. I think the more you do these special things, the easier it will be if you do need to wean.
Also, rather than stress for a month, I'd also call the dr. and ask to have a phone conference ASAP to pose the idea for the L3 meds, rather than the L4. This might give your dr. time to do the research on the meds and BFing in advance of your next appointment, or it might give your dr. the opportunity to say why a particular drug is "preferred" for you or not.
Good luck!
~maddymama

[ErynneM]

My husband works fom 2pm-12am, so I'm sort of on my own in the evenings/nights. I will just accept that I will have to sit up in bed and rock/bounce him like when he was a tiny baby, and hope that he accepts not having his nursings when the lights are out.

I have an L3 in mind, and I'm hoping she'll be willing to try it out... but I've had SLE for 13yr, and have proven to be allergic to a lot of the SLE meds out there. CellCept has worked for me in the past, and controlled the disease really well, so she leans towards that one more than any others.

I am hoping that if I nighttime wean him, the daytime nursing when he is upset or falling asleep won't introduce enough CellCept into him to really be an issue. Or, maybe the Prednisone will knock the SLE out and I won't need to go on ANYTHING in a month.

- E

[Katie T]

Hugs to you mama, my mom has lupus as well and so I really feel for you. I second the acupuncture if nothing else. I also hope that the flair up will subside and things will go back to normal for a long while. My mom has only had around 3 flair ups in 35 or so yrs. Do you notice a flair up or is it just the same level of "bad" all the time

I wish you luck with the night weaning and hope he does ok with it. Have you thought to try the health and healing section? Those members are pretty amazing in helping with things.

[ErynneM]

I am usually sore/tired... but a few days ago, it got REALLY BAD. That was what prompted me to call me rheumatologist. Since it was so acute, she wanted to get me on something immediately, and was very concerned about me not wanting to go on CellCept; she's worried about organ involvement.

I will head to the health and wellness group, I'll see if they can help. Thank you!

- E

[lookatreestar]

i think you just need to be consistent with which method you choose (maybe jay gordon) i haven't night weaned either of mine so i am not for sure on the whole thing. i just know a friend of mine weaned her ds completely and for a week she kept going back and forth and it was just confusing him (he was 13 months) babies are pretty good with rolling with the punches it is harder on us mamas. she said he will still pat her breasts but no more tears or trying to latch on or anything. hth!

[Casha'sMommy]

OP-I've never weaned so I'm no help there and I know this isn't the help you were looking for but I can't refrain from trying to assist you in continuing to nurse.
Have you tried Plaquenil? What's your Prednisone dose? Maybe you could jack that up for a while and wean that down in addition to taking Plaquenil?


btw, I too have SLE also Sjorgen's, Raynaud's, and have been saddled with Undifferentiated Connective Tissue Disorder in the past as well.

[ErynneM]

Casha'sMommy - big hugs to you. It's not easy being an SLE mommy.

As I said in the other thread we're chatting on, I'm on a pulse treatment of Prednisone for a month, weaning slowly off of it over the course of 30 days. I am allergic to Plaquenil. My rheum doesn't want to keep me on Pred for long-term... doesn't like using it at all, honestly.

- E

[momtoS]

I don't really have any advice but wanted to give you a cyber hug. Sorry you have to deal with Lupus. It is a tough decision to wean, but please be happy that you have had 16 months of breastfeeding with your LO. I hope that everything works out for you.

HUGS>

[vrclay]

What a tough place to be. I'm so sorry. Here's what we did:

I had to wean my first child before he was ready due to being pregnant again and having a history of pregnancy complications. After discussions with my docs, we decided that I would quite pumping at work immediately and begin the weaning process. I was less concerned about the need to immediatly wean so I took about 3 months to totally wean him from the breast. He was 15-16 months when I got pregnant and he nursed for the last time when he was just over 18 months.

When I discovered I was pregnant, I was pumping twice a day and nursing him to sleep and though the night - not sure how much, I just rolled over. I can't remember how we did it on the weekends.

I chose to use a bottle substitute. My guy was getting a bottle at day care so we switched to whole milk in his bottle when he woke up in the night. I still nursed him to sleep, but when he woke up in the night, usually just once, daddy went to get him milk. I cracked up when one night in his sleepy little voice he called daddy the milkman. I would still nurse him to sleep and we moved to a don't offer, don't deny strategy. I had a reserve of frozen breastmilk so we continued to send that to daycare in his bottles.

He continued to get bottles of milk in the AM in bed, at nap time and at bedtime. I approached the bottle as I would have extended nursing. My husband was a little less accepting of a 2 YO with a bottle. At about 2y4m we started to put limits surrounding the bottle. He could only have it while laying down - on the couch or his bed usually, when going to sleep or on long car rides. Then a few months later only at bedtime.

How did it end? one day when he was about 2y9m we only had one clean bottle at bedtime - my then 10 mo old was on a nursing strike so we were giving him breastmilk in the bottle. So I said, huh, only one bottle, how about you have your milk in a sippy and let brother have the bottle. NO resistance at all, I was shocked. So we went with it. He got his milk in a sippy for several weeks and for the past month or so, he hasn't requested milk in a sippy.

It did melt my heart when we were traveling and he asked for mommy milk that I had just pumped in his sippy...he said, mmm...I like your milk.

Good luck, and I hope you are feeling better soon.

[ErynneM]

After e-mailing with Dr. Jack Newman, and having a nurse friend post on Dr. Thomas Hale's message board, I am feeling like the right course for us will be to nightwean Jacob, and to continue nursing in a "Don't offer, don't refuse" capicity during the day.

I'm also going to join Dr. Hale's study in the InfantRisk Center for breastfeeding while on CellCept. Jacob isn't dependent on breastmilk anymore (since he's almost 17mos now) and the results might help other nursing mommies be able to breastfeed with confidence, or at least know that they SHOULDN'T nurse if they're on CellCept.

I'm thinking of using the Dr. Jay Gordon method of nightweaning, and I will let y'all know how it goes.

Thank you so much for all the wonderful replies and the encouragement. I love how wonderful all the mommies out there are; it's nice to have a tribe, even if it's on a different continent from me. <3

- E

[PatioGardener]

Originally Posted by ErynneM

I'm also going to join Dr. Hale's study in the InfantRisk Center for breastfeeding while on CellCept. Jacob isn't dependent on breastmilk anymore (since he's almost 17mos now) and the results might help other nursing mommies be able to breastfeed with confidence, or at least know that they SHOULDN'T nurse if they're on CellCept.

You're awesome, Mama. What a gift to give, especially at this difficult time. I hope night weaning goes well, and wish you and your little guy all the best.

[ErynneM]

Thought I'd update this... I'm down to 1/2 a Prednisone a day, and so far (knock on wood) I am doing quite well.

I see my rheumatologist in roughly two weeks, and I've made up my mind: I'm not weaning. Not with all the information out there for how good term breastfeeding is.

I'm going to hope that I'm improved enough to not be put on medication. If I am not, I have two medications to suggest that are both breastfeeding safe. If she will not go for either of those medications, then I will agree to be put on very low-dose CellCept and will talk to his pediatrician about monitoring him to make sure he isn't getting large doses of it.

But I honestly think I will be fine medication-free. I think the flare was brought on by the extremely unpleasant cold I caught, and that it caused a severe immune reaction in me... but I was already feeling less achy and less swollen when I went in to see the doctor the first time around. Had I just waited another couple of days, it might've subsided on its own.

Anyway, I refuse to wean. Even nightweaning is just a hassle, because he wakes and nurses often, and before I started worrying about nightweaning, I was able to just doze my way through nursing him at night. Now, I lie awake trying to make sure I unlatch him before he falls fully asleep, to get him used to the idea of not nursing to sleep. Piffle on that - he unlatches himself and I'm losing good sleep.

I'm putting my foot down; as long as I'm not in OBVIOUS danger (not the 'possibility' of complications, godd***it, i've been down that road and allowed my labor to be induced because of the 'possibility' of complications. i will NOT be steamrolled by the medical community anymore!), I don't see the point in putting me on medications that are contraindicated for breastfeeding. So there.

- E

[PatioGardener]

glad to that you are doing well! good luck.

nak

[risa]

It sounds like you have a good plan!
I had hyperthyroid issues when my oldest son was 12 months, and needed to wean him over the course of a month. I was able to get my symptoms under control by working with a wonderful accupuncturist, but the herbal meds did require me to wean. It was heartbreaking to do it, but my other options were if I did nothing I was risking a heart attack, and western medicine would have me radiated and would also require weaning.
After several months, my thyroid levels were back into normal range and I have been healthy since. I now have a 5 month old that I hope to have an extended breastfeeding relationship with as I have been healthy since.
One of the main keys to my continued health is eating gluten-free. I do not have any of the typical gluten sensitivity signs, but it apparently has a negative relationship to my thyroid balance. Apparently many auto-immune diseases can be related to gluten sensitivities. If this is not part of your current eating, I would suggest you look into it to see if it could help your symptoms. My aunt who has sarcoidosis has benefited from reducing her gluten intake and my sister-in-law has noticed a significant difference in her RA since going gluten-free.
I am staying gf in hopes of nursing my baby until we are ready to wean and not becasue of medical issues.
best to you mama!!!