Weaning off of breastfeeding

At first I was indifferent to breastfeeding my daughter. I had read all the studies that encourage feeding and the benefits so I knew I wanted to give her that time, but to me I didn’t get what all the excitement was for. Our start was rough – my daughter wouldn’t latch on properly and I grew very frustrated. I invested in a specialist for breastfeeding who gave us great tips but no real resolution other than hard work. Our goal was to make 6 months before switching to formula and solids.

Then I saw my Neuromyelitis Optica (NMO) doctors…

My rheumatologist manages my Cellcept and Prednisone intake. If it were up to him, he would have wanted me back on the immune suppressant drugs right after birth. That we managed to go 3 months of breastfeeding is great but I’m playing with fire. Even though I’m on Prednisone I could have a relapse attack at any moment.  No one really knows if my prescribed dosage is sufficient to ward off an attack.  He made a valuable point that my daughter would rather a functioning mother than a couple extra months of feeding.  He was also greatly concerned with how much and how long I’ve been on Prednisone for.  I have been taking an oral dose daily since over a year ago when we started the in-vitro process but there is no denying that the long term effects of steroid use is damaging.

Then I saw my neurologist and we thought of other options:
What about Rituximab? There isn’t coverage in Ontario for the use of that drug for NMO patients. Even though I could get it donated from a drug company, getting someone to monitor and administer it to me would be difficult.
What about other immune suppressant drugs that were safe for breastfeeding? I didn’t tolerate Imuran last time and why mess with something that obviously works well?  He thought it best to stick to Cellcept.

So, I resigned to the fact that on a certain date I’d start taking Cellcept and give up breastfeeding.

And then something magical happened. Just as I was ready to wean off the Prednisone (from the last year of use) and get back on Cellcept I discovered what everyone was talking about.  I guess when you take something away, like the ability to walk, see or even breastfeed, one can’t help but really see its value.  As I count down the days before I finally make the call and give up breastfeeding for good I cherish the moments that my daughter and I share together.  Those are the moments I finally feel like a mom.  Thankfully she’s taken to her formula meals via a bottle quite well.  Most days I feel like an insufficient mother because I can’t continue to feed my child as mother nature intended.  At moments I curse this frustrating disease and even after so many years now I still question “why me?”.

So for now I am grateful for getting as far as we have – after all, I did have a baby against the odds of in-vitro and NMO, and we did breastfeed for almost 4 months.

7 Comments

  1. Chantal

    What dosages of prednisone and Cellcept are/were you on?

    Comment by Chantal on January 2, 2013 at 3:52 pm

  2. Jenna

    Hi Chantal,

    During my pregnancy and breastfeeding I was on 20mg of oral prednisone. It took me 6 weeks to come off the cellcept before starting invitro. Before being pregnant and now that I am no longer breastfeeding I was on/am on 1000 mg twice a day.

    Are you hoping to be pregnant?

    Jenna

    Comment by Jenna on January 2, 2013 at 11:09 pm

  3. Chantal

    Hello Jenna,

    Thanks for your response. Maybe sometime in the future I will consider having children. I am on 20 mg prednisone now and I recently stopped taking Cellcept (1000mg) after 2 months because I can no longer tolerate it. I was hoping to get off of the steroids this year and be on Cellcept but now my Dr has to switch me to something else.

    Comment by Chantal on January 3, 2013 at 8:36 pm

  4. Jenna

    I can sympathize with wanting a prednisone free year. Before I was pregnant (and on prednisone) I managed over 2 years on just Cellcept. This time around though Cellcept isn’t sitting well with me but because of the holidays my doctors aren’t back till next week and it isn’t worth spending 8 hours in the ER for help. I can wait till my doctors get back.

    Comment by Jenna on January 4, 2013 at 2:07 am

  5. Chantal

    That’s good that you were able to do two yrs vs two months like me. I didn’t expect it to kick in so quickly when I was told it would take up to six months…I was recently diagnosed with TM over the summer so we are still trying to find a good treatment plan for me. Until then I am steroid dependent. Its interesting to know how other people are dealing with this. Thank you for the info!

    Comment by Chantal on January 4, 2013 at 2:33 am

  6. Diamond

    Hi Jenna, I was diagnosed with NMO about to years ago and my neurologists tried plasmapheresis first. It worked but I wanted something that didn’t take as long to get so he put mo Prednisone. The Prednisone worked really well also but I was very unsatisfied with how much weight I was gaining. And lastly we tried Rituximab and it seems to be working really well. But now I just have on problem, I just recently found out I was pregnant and its time for another dose of Rituximab but that med isn’t good for the baby I was told. So what would be the best option to avoid getting an abortion?

    Comment by Diamond on February 21, 2013 at 9:56 pm

  7. Jenna

    Hi there,

    First off, congrats on getting pregnant. Rituximab isn’t safe for a baby in utero so your only option for protection from NMO is Prednisone. Yes, the weight gain is a challenge but I’ve been working hard after giving birth and have managed to lose a lot of the weight already. There will be challenges while on prednisone and it does not guarantee that you won’t have an attack while pregnant so your best bet is to build a plan with your neurologist.

    Good luck!

    Comment by Jenna on February 24, 2013 at 2:32 am

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