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WEANING HELP.... for Severe progressive MS relapse...

Posted by on May. 25, 2012 at 1:35 AM
  • 27 Replies
Ugh....this seems to be all I post about anymore. I am bf'ing a 16 mo old and have MS. Im having my most severe relapse ever, RIGHT NOW. Everyday it's worse, a new part of my body goes numb, or my vision gets worse, or my energy is zero...or a dozen other things. I haven't been on meds for over 2 years. I was trying to get pregnant, was successful, and then have been breastfeeding for 16 mo's. Now it looks like I might have to quick wean my 16 mo old (traumatizing :( her ). .......ugh. I hate MS. I got dx'd 2 mo before I graduated culinary school 1 yr after I got divorced of my husbsnd/boyfriend of 12 years. 2 years after graduating to do my dream job I can't take the heat of a kitchen. 25k in student loans for nothing. Now with a half dozen numb spots, blurry vision, stabbing pains, tingling, bruises everywhere, hot flashes, and extreme fatigue MS is trying to take my ability to be a mom (not to mention the emotional aspects of MS, and cognitive) PLUS, all the side effects from this tapering dose of prednisone. I think at this rate, considering the severity of this relapse, if I don't wean and get on meds right away I will end up not being able to care for my kids. The medication options for me (avonex, rebif, gilynea, and another I can't remember) don't have enough research behind them for use during bf. So yesterday, I called LLL and when my call was returned she mentioned the don't offer, don't refuse method, maybe trying to stop the cosleeping also, but preceded to tell me I was going to emotionally and psychologically scar my daughter for life, effect all her future interpersonal relationships, her ability to trust others, and cope with stress. WTF DO I DO NOW? I believe breast is best, but feel now like I unknowingly traded her emotional well being for her physical. I suck! I'm lost here :(
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by on May. 25, 2012 at 1:35 AM
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Replies (1-10):
babymine
by on May. 25, 2012 at 1:44 AM
1 mom liked this
Oh honey, do not feel bad!! You have to take care of YOU in order to take care of your daughter. That LLL response was a little harsh IMO. I don't think I would stop co-sleeping in addition to weaning. That's too much at once for a baby. Keep her in your bed and find other ways to soothe her. After a few consistent nights she will be okay. Don't let anyone make you feel bad. 16 months is AMAZING! Good for you mama!!
:)
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battisarah
by on May. 25, 2012 at 1:57 AM
Thank you ... I guess it's gonna be tough around here for a while. What do I tell her when she lifts up my shirt, smiles, and says boob, then tries to dive in. She doesn't understand AT ALL. She isnt on a bottle... Do I keep a sippy of water on the nightstand? She doesn't use a pacifier either.


Quoting babymine:

Oh honey, do not feel bad!! You have to take care of YOU in order to take care of your daughter. That LLL response was a little harsh IMO. I don't think I would stop co-sleeping in addition to weaning. That's too much at once for a baby. Keep her in your bed and find other ways to soothe her. After a few consistent nights she will be okay. Don't let anyone make you feel bad. 16 months is AMAZING! Good for you mama!!

:)

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GoodyBrook
by Silver Member on May. 25, 2012 at 2:14 AM

MS runs in my family, so I totally get where you're coming from...  (Dad's been on a weekly Avonex shot for the past 10+ years, and two of his sisters are going sans medication).

I've been working on night weaning my 14 mo. old, and surprisingly it's going so well, that I'm now trying the "Don't Offer, Distract!" method  during the day  :)  When DS pulls on my shirt, I'll point to the box of Cheerios that I keep handy, and usually a small handful is enough to distract him from wanting to nurse.  He's now nursing between 4 and 6 times in a 24-hour period, and I'm happy that it's gradually decreasing...

I'm so sorry that you're going through a rough patch.  Keep your chin up, mama!

justone_jen
by Jen on May. 25, 2012 at 2:19 AM

Wow. I'm sorry you were treated that way. That's ridiculous.

I have absolutely no advice, just hugs. I'm sorry. :(

GoodyBrook
by Silver Member on May. 25, 2012 at 2:20 AM
As far as night-weaning, DH now sleeps between DS and I. When DH is away on business, I sleep with a big pillow between DS and I, so it's harder for him to snuggle and nurse. We've been using a few ounces of cow's milk as a replacement if he's really rabid for a snack, but that's only been a couple nights in the past two weeks. Generally a little cuddle from DH will do the trick at putting him back to sleep... I'll nurse around midnight then again about 7 p.m., but nothing between those hours. (Pregnancy has made me irritated during night nursings, and I'm MUCH happier now that he's stopped night nursing).
sreichelt26
by Gold Member on May. 25, 2012 at 2:28 AM
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Forget what the LLL lady said. While the longer the better, you made it to a year - so you don't have to choose breastmilk or formula. That would be the worst IMO.

Wean however you feel you need to and get on meds. You need to be able to take care of your children and that far outweighs anything else.
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larissalarie
by Platinum Member on May. 25, 2012 at 2:39 AM
That LLL lady is the kinda personn who gives breastfeeding a bad name! I'm so sorry.

Im not certain how much time you have, but if you could give a few weeks/month to night weaning/breaking co sleeping first and then limit daytime nursing and then cut it off over a few weeks, that's what I would do. If time is critical, maybe you could go away for a week?

Anyway, your child won't be scarred for life. I cold turkey weaned my oldest at 12 months (just thought that's how it worked) and she was upset for about a day & a half. 12.5 years later, I'm still not over it! She's perfect. She's affectionate, loves her baby brothers, is respectful, an honor student, gasping hers around the house, etc. The only trauma suffered from abrupt weaning was to me!

Also one of my best friends from middle school, her mother had ms. She is literally a genius, graduated with a PhD from an exclusive school, and is ridiculously close to her mother in spite of the limitations of the disease. You can & will be a fabulous mother, even if your Ms limits you.
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mostlymaydays
by Group Mod-Stacy on May. 25, 2012 at 7:14 AM
If you do end up weaning her quickly, make sure you taper yourself down through pumping so you don't develop engorgement/mastitis issues.

Did you call Dr Hales's Infant Risk hotline for advice about the drugs yet?
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mostlymaydays
by Group Mod-Stacy on May. 25, 2012 at 7:17 AM
From Infant Risk website:

Each year, more than 4.3 million women give birth in the U.S.  Virtually all of these women will use at least one medication during pregnancy or during breastfeeding.  
 
The InfantRisk Center will be dedicated to providing up-to-date evidence-based information on the use of medications during pregnancy and breastfeeding.  Our goal is to provide accurate information regarding the risks of exposure to mothers and their babies.  By educating healthcare professionals and the general public alike, we aim to reduce the number of birth defects as well as create healthy breastfeeding relationships. 
 
We are now open to answer calls Monday-Friday 8am-5pm central time. Please contact us at (806)-352-2519.


Quoting mostlymaydays:

If you do end up weaning her quickly, make sure you taper yourself down through pumping so you don't develop engorgement/mastitis issues.



Did you call Dr Hales's Infant Risk hotline for advice about the drugs yet?

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battisarah
by on May. 25, 2012 at 9:44 AM
That was very encouraging! Thank you :)


Quoting GoodyBrook:

MS runs in my family, so I totally get where you're coming from...  (Dad's been on a weekly Avonex shot for the past 10+ years, and two of his sisters are going sans medication).


I've been working on night weaning my 14 mo. old, and surprisingly it's going so well, that I'm now trying the "Don't Offer, Distract!" method  during the day  :)  When DS pulls on my shirt, I'll point to the box of Cheerios that I keep handy, and usually a small handful is enough to distract him from wanting to nurse.  He's now nursing between 4 and 6 times in a 24-hour period, and I'm happy that it's gradually decreasing...


I'm so sorry that you're going through a rough patch.  Keep your chin up, mama!


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