Tuesday, September 14, 2010

A long time coming

It's been about a month since I last up-dated, because I was hit with a world-shaking change in late August: my Systemic Lupus, in remission for nearly three years, was out of remission.

That revelation would have been enough to shake me, but the next bit of information delivered by my rheumatologist really shattered me: "CellCept is still the best medication for Lupus. But you realize this means you'll have to wean the baby?"

My plan has been to let him self-wean, to nurse until HE decides he's done, rather than take away his source of comfort and nutrition. So the news that I was going to have to wean him left me crying on the exam table while my doctor busied herself writing notes in my medical file.

Well, it's been almost a month since I was given the news, and in that time I've done a lot of research... I've read through the Hale's guide (more appropriately known as "Medications and Mothers Milk: A Manual of Lactational Pharmacology"), and I've spoken to Dr. Jack Newman through e-mail, and have gotten feedback from Dr. Hale on his forum. Through all of this, I have come to a decision: like HELL am I going to wean my son.

I have several plans of attack at this point, ways of approaching the situation.

Plan A: The Ideal, meaning that the course of Prednisone I'm currently on works well enough to put the SLE back into remission, and I am able to continue forward medication-free, as I was before late August.

Plan B: The Back-Up, meaning I am put on a breastfeeding-safe medication, like monoclonal antibodies (rituximab, as suggest by Dr. Newman) or cyclosporine (indicated in the 2010 Hale's guide as an alternative to CellCept).

Plan C: The Last Option, meaning I am put on a low dose of CellCept and continue to breastfeed, but have the Baby Beast monitored to make sure he is not having adverse reactions to the CellCept. I will join Dr. Hale's study on breastfeeding and CellCept if this is the plan we have to go with.

As of this moment, I have stepped down from four Prednisone a day to 1/2 a tablet a day, and I am doing just fine (as far as I can tell). In my opinion, I am back to where I was pre-August... but I will see my rheumatologist in a couple of weeks and she will let me know how she feels I am doing.

But all the research I see says quite clearly that babies need to be breastfed for an extended period. Humans are not meant to be weaned before they are at least three or four years old. The composition of breastmilk changes to meet the needs of the infant/toddler/child for as long as they're nursing. And the health benefits of nursing are just too important to pass up.

So, my rheumatologist may not like it when I don't fall calmly into line the way I did when I was sixteen or seventeen years old... but I have the Baby Beast to consider now, and I won't short change him if there are any chances to avoid it.

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