Friday, February 20, 2009

for the benefit of your search engine.

I started back on my MS medication, Rebif about a month ago.

Originally I avoided returning to my thrice weekly injections because I thought it would mean I had to stop breast feeding (and I was like totally La Leche crazy about breast feeding). For a year I risked my own health to continue nursing.

When my doctors told me I no longer had a choice I was devastated. Nursing was so second nature, so much a part of my relationship with my child that I couldn't, wouldn't walk away. I became my own advocate. I started researching and talking and investigating.

At the end of a month I was privy to information that is not so easy to come by. And for the benefit of any other woman with MS who needs the answers to the same questions I had, I say wrap your Google keywords around this.

Multiple Sclerosis, Breast Feeding, Nursing, Rebif, Interferon.

Here is what I found out.

Nursing and taking Rebif is possible. I was given information from my local lactation consultant who used a book written by a Dr. Hale. I brought this research to my doctors and the baby's doctor. They are fully supportive of the information I found.

The drug company has a blanket statement of "don't do it" because they a) have done insufficient research and b) refuse legal responsibilities. I get that. But it's not the whole story.

Dr. Hale has done studies on breast feeding mothers and this drug. He has tested the milk.

Rebif is an Interferon. A protein naturally produced in the human body.

On a molecular level it is too large to pass into breast milk in measurable amounts.

Even if it did, the reason why it's an injectable is because the GI track of the human body destroys it.

Call me crazy but that was good enough for me and I am still nursing. Granted Riley is 15 months old and can go days without wanting it, but if she asks it's there.

I only wish I had taken hold of the situation sooner. Because while medication is no cure for MS, it can certainly slow its progression....and that's what it has been doing for the last year. Progressing.

Nursing or not nursing is a personal choice. Dealing with this disease and negotiating the options is personal. No one is going to do it for you, no one is going to make your choices.

I agonized over this decision. Even with the knowledge I have today I would still have waited 6 months before returning to the medication, but I would have been informed. Personally, I like to know all sides of a story.


Megan said...

I am glad you are able to continue nursing and go back on Rebif. My husband went off his meds for 3 months and had an attack so I am fully aware of how important those meds are.

Swiggy said...

yay for knowledge!

Domestic Extraordinaire said...

so glad that you found out the info that you did. I am sure that many a nursing moms with MS will thank you!


Mrs. Chicken said...

Love that you empowered yourself with knowledge. Dealing with doctors can be so humbling and infuriating and they know just a little more than we do, in the long run.

Be well, my strong friend. SO GLAD you are back!! I really missed you.