Breastfeeding and safe treatment

[ChunkyMonkeysMommy]

I'm a mother of a 5 month old boy. I have been having symptoms of a relapse (although I was hoping that it was just a pinched nerve or something) for a couple of months now. I went for an appointment with my neuro (who is not an MS "specialist", but is that really necessary?) a couple of weeks ago and explained to her what I have been feeling and she was very quick to tell me that it was, without a doubt, classic symptoms of a relapse. My problem is that I'm breastfeeding my son and she wants me to wean him and get back on meds. I was told about the IVIg therapy by another mom whose neuro prescribed it for her so that she could continue to breastfeed her children. I have taken Avonex, in the past, without any luck. It only made me feel worse. I was so excited to hear of something that would allow me to continue to breastfeed my son and give him the best start. When I called my neuro and asked if this would be a possible treatment option for me, I was given a resounding "NO!!!" I was told that it is not an approved MS therapy and that it is VERY dangerous and she would NOT prescribe it. Based on what I've read, which I know you can't believe everything you read on the internet, it's only dangerous to those with other specific medical issues, which do not apply to me. Otherwise, the side effects don't sound any worse, and in fact don't sound AS BAD, as the side effects from Avonex.

My question is this: What are your thoughts on IVIg for MS? Why does my neuro feel that it's so "dangerous"? Hypothetically, if I were your patient, what would you suggest?

Thank you!

[ChunkyMonkeysMommy]

Thank you all for your support. The weaning isn't going so well, but we are still trying. He refuses to take a bottle and just uses it as a teething toy, and he won't take formula. We're hoping that we'll get him to take it once he gets used to his sippy cup, which we're in the process of training him to use.

Kitcurious, thank you! :)

Dr. Kantor, thank you for your continued responses to my questions, it is greatly appreciated. I am curious, as Auggie207 mentioned, as to your comment regarding the first trimester.


Again, thank you all!

[auggie207]

I am curious about your comment regarding the first trimester as not being so protective for the mother.  Can you comment on this further....like what to look for....treatment or is there fetal demise more prevalent??

[kitcurious]

This is not a medical comment. I just wanted to say that your baby is adorable :-)

[Dr. Daniel Kantor, MD]

These are excellent comments, as always by the MS community and I hope they make you feel more comfortable with the opinions of your fellow community members (not "patients") with MS.

I generally recommend stopping the medication one cycle before trying to get pregnant. Also, people sometimes forget to talk to their OB/Gyn doctors about the other medications they are taking (which may even be more problematic than the diease modifying agents).

Pregnancy is generally thought to be protective -- some think this I because of the increased estrogen and some think because during pregnancy you are relatively immuno-suppressed, thus acting like a "medicine" for MS.

Because of this there are clinical trials looking into the possibility of using estrogen as an oral treatment for MS.

The time period around delivery, however, is a risky time with more relapses (this may be because of a sudden drop in estrogen levels).

It is important to discuss this with your neurologist and OB/Gyn.

As a side note, I am not convinced that the first trimester is protective and in fact I believe that it may even be more risky than the non-pregnant state (but not everyone agrees with me).

[Heather3418]

I am in total agreement with Dr. Kantor....better to have a healthy mother and being treated for MS than to keep breast feeding.  Know that your baby has already received much benefit form nursing and start treating momma and take care of YOU for the baby.  

That baby needs the healthiest mother he can get and getting on one of the DMD's will hopefully slow the MS down, so he can have just that.

Good luck to you and I am so sorry you did not get to continue with the breast feeding.  You did give him the healthiest start, though.

I believe researchers are actively studying the hormones your body makes during pregnancy, that seems to keep the mother from rejecting her "foreign" fetus.  This in hopes of helping those with MS reman relapse free, just like the pregnant mother does.

Good luck with the transition over to the bottle.  And get yourself on the Copaxone soon.

Best Wishes,
Heather

[Lulu54]

Hi CMM,
wouldn't it be great if somehow we could trick our bodies into believing that we were perpetually pregnant to reap the benefits for our MS?  I know you're disappointed about the breastfeeding, but I'm glad you've had the opportunity to boost your infant's immune system and all those other physical and emotional benefits for the first five months.  Having you able to function and care for your children is the highest priority here.  It seems you understand that....

be happy,
Lulu

[ChunkyMonkeysMommy]

Thank you so much for responding.

We are trying to wean our son, but it seems to be a slow process. I guess I was just hoping that there was an alternative solution that would allow both therapy and breastfeeding.

When we have completed this task, I will be trying Copaxone. Can you tell me if there is a certain amount of time that we should wait between going off of Copaxone and getting pregnant again? We are planning to have another child, eventually, if I'm able to remain healthy enough. Also, I've heard different opinions on relapses during pregnancy. My neuro said that pregnancy is a natural immunity to MS relapses. I've been told by others that their neuros said that it just makes it less likely to have a relapse or that they are milder during pregnancy. What is your opinion on this?

Thanks so much! :)

[Dr. Daniel Kantor, MD]

IVIg is not FDA approved for MS. In fact, there is a national shortage of IVIg, which is used for (among other things) peripheral nervous system diagnoses.

The best thing for your baby is a mother who is not diabled from MS -- therefore you should stop breastfeeding and go on a disease modifying agent.

Avonex is only one example of multiple medications (and many more clinical trials).