That was a close one....

[eunytuny]

My nursling is 2yr 4mo and is a constant booby hog. Morning noon night midnight and on and on. I love it because he is an independent little guy and is not a big cuddler except for when he says "Mommy I want milkies please".

Well Tues Feb 3, I had an apt scheduled w/my neurologist. She said after looking at my MRIs, I had MS. I was shocked and asked questions and I was ok mentally because I always thought good health could be gone at any time, so be prepared. Then she started explaining the possible strategies we could take to slow the process down. When she said I'd have to wean the baby because I needed to start taking medicine as of this coming Friday that is when I absolutely lost is bawling hysterically. I just kept saying "this is a nightmare" As soon as I would calm down, I'd think about starting a conversation about weaning when I got home and the tears would flow again.

I did extensive research and consulted with a naturalist and made the decision to delay meds. My point is I am eager to see how old he will be when he weans. I am another one of those that had no expectations when I started and when I went to my first LLL meeting, I saw the 4 yr old daughter of the leader come over and lift up her moms shirt to nurse and I was shocked. Now, I am so happy my views have changed.

Yeah to all you moms who are still nursing your wee ones. ::

[jacki1234]

I am all for child-led weaning but aren't you worried about your health and long time ability to take care of him? I dont have ms but have heard some heart breaking stories of families that are in upheavel because the ms patient is wheelchair bound and isn't able to take care of the kids. Maybe I don't understand the disease well enough. I hope only the best of health for you.

[MonAmiBella]

First of all, I'm very sorry about your diagnosis.

This is an area that's very close to my heart, my oldest was weaned at 2.5 due to my need for medical attention, it wasn't what I wanted to do, but it was what needed to happen - for both of us. My mother had to wean me at 3 to undergo chemo and radiation for ovarian cancer - it was a cold turkey wean, and I can assure you I have not suffered for it, nor has my oldest for his rapid weaning.

While I'm not a MD or ND, I think that when dealing with something like MS the sooner you get treatment started the better. When it comes to long term survival vs. long term nursing - survival comes first for me.

[cschick]

Very recently (within the past month) I saw the summary of a study on MS and breastfeeding, which came to the conclusion that halting breastfeeding to take MS medications may actually be counter-productive.

Ah, here: http://www.ivanhoe.com/channels/p_ch...?storyid=20887

The study has only followed women for a year, unfortunately. Obviously, the theory they are looking at is that breastfeeding somehow offers some form of protection against MS progression and relapses.

[PatioGardener]

Originally Posted by cschick

Very recently (within the past month) I saw the summary of a study on MS and breastfeeding, which came to the conclusion that halting breastfeeding to take MS medications may actually be counter-productive.

:

Breastfeeding may actually be protective against MS progression. This is definitely worth exploring more - you could ask your neurologist about this new research.
Sorry to hear about your diagnosis

[formerluddite]

i wish every MD had a copy of Thomas Hale's book, "medications and mother's milk." it would save a lot of heartache. you might NOT need to wean, depending on the drug. if it's an interferon (Avonex, Betaseron, or Rebif), or Copaxone, Hale says it's not a risk to the child.

i found this on his site (buried in the forum questions):
http://66.230.33.248/discus/messages...tml?1193081873

he states that interferons don't really transfer into the milk due to large molecular weight.

from july 2005:

As for Avonex, Betaseron, or Rebif, they're all practically the same, just minor changes in their interferon structures. I don't think it matters which one you take. This is really up to your doctor and your specific condition.

As for breastfeeding, interferons transfer into milk at minor levels...probably secreted by a special process. We do not know at this time whether dosing with interferon increases the amount in milk, although my one study didn't find this so. I can tell you that a lot of mothers are breastfeeding while taking interferon. If you decide to take it and continue breastfeeding...please contact me again as I'm trying to get a study going.

from august 2005:

I am not collecting samples for Copaxone, and I don't know anyone else who may have a study underway for this drug. Sorry.

Secondly, this product is a quite similar to the sheath of nerve cells. I can't imagine how it would harm an infant, and I can't really believe it would even enter milk in the first place. I'd quit worrying about it being hazardous to your infant.

from sept 2006:

We simply don't have any data concerning the entry of Copaxone (glatiramer) into human milk. I believe it will be incredibly low, and its oral bioavailablity even lower. But without data its hard to prove this. However, it's just a large peptide antigenically similar to myelin basic protein. I can't imagine that even if microscopic amounts were absorbed, it would harm an infant...but we don't know this for sure.

Sorry, but I can't give you any definitive answer. The mother might contact the MS society. I'm sure others have used this product and breastfed...because I've spoken with them.

from oct 2007:

I just received the data on Avonex and Betaseron. Virtually none enters milk. Levels in 4 of the 5 mothers milk studied were far below the limit of detection (< 200 pg/mL). Only one mothers' milk had a small amount of Avonex (about 200 picogram/mL).

This confirms what I'd hoped, that virtually no interferon enters the milk compartment.

these are his responses to questions from LC's, RN's and MD's on behalf of MS patients, and many include something about "the neurologist refuses to prescribe xxx until she (the breastfeeding patient) weans." so maybe you just need to educate your neurologist? he also recommends joining a forum of MS patients, which might include some breastfeeding mamas with more BTDT info on how they dealt with their neurologists.

[eunytuny]

Thank you everyone for your thoughts and well wishes. Thank you also for the many links you have shown because i am going to print them out and show my neuro. I am sorry if I stirred up controversy. I can see the take care of myself for my child point of veiw absolutely. Some background on me: six years ago while under an extreme amount of emotional stress, I started experiencing tremors on the left side of my body. After an MRI, the neuro saw "spots" on my brain and after 3 weeks, the tremors were gone and I chalked it up to stress. In the meantime, I had an uneventful pregnancy and delivery. In the last year, my diet and exersize were horrendous and I gained 30 lbs. the two main staples in my eating were sugar and chocolate. Two months ago the left side of my tongue started to feel like I was on Novacaine. The numbness spread to the rest of my face on the left side only. After I got the diagnosis, I kicked myself for being so foolish to not take care of myself better. I did a 360 turnaround and cut sugar out of my diet completely, found out I had Candida, read Breakthrough by Suzzane Sommers (which is an amazing book) started reflexogy, raindrop therapy, dry heat saunas and exersizing. My son is benefitting more from my milk than he ever has before.

As for taking meds, the neuro wanted me to start Betaseron. It of course has long term side effects which I'd have to have blood tests done every six months to make sure my liver still likes me. It gives you flu like symptoms while you take it and it is not a cure. MS is so individual it's impossible to know how it will react in each person, yet it's a blanket med the most prescribe which by the way costs $2000 per month to get. That is not a typo. Doctors are mostly guessing just like the rest of us.

I don't want anyone to think I made this decision lightly or that I just wanted extra cuddle time with my son. I am learning more and more everyday and the more I learn, the further away I get from wanting meds.

[JessicaS]

eunytuny,

Of course you want what is best for your child. Of course they will not get MS from nursing, everyone knows it is not contagious and not something that would be transferred via breastmilk.

Mothers nurse their children with chronic illnesses all the time. Pregnancy and breastfeeding can put some autoimmune conditions into remission, some women may go ahead and get pregnant rather than delaying for health reasons in order to attempt to boost the immune system. It is actually fairly common.

Also, if one has a genetic predisposition to autoimmune conditions it is better that your child have all the possible boosts to the immune system that breastfeeding can provide. Milk from a healthy cow is most certainly not better than breastmilk from a mother with a chronic illness, science does not show that. My specialists were all about dd getting breastfed. I didn't start the serious meds until she stopped nursing.

I have an autoimmune condition, when dd was a bit over three we had a conversation about weaning so I could start meds, she was able to make the decision herself rather than be "weaned" and her mom was a little more present and fun as a result of feeling better.

When you feel you wish to start meds do so, no one here will judge you for that. Your son is getting old enough that this can be a conversation the two of you share and work through together.

This is a very personal issue, it is about your comfort and how you feel you are managing your illness. As long as you feel comfortable to continue nursing, do so.

Some meds/illness are contradicted for breastfeeding, but if mom isn't ok without meds then she needs to do what she needs to do to be healthy and present for her child.



Some links

http://www.healthychild.com/for-heal...immune-system/

http://www.breastfeeding.com/all_abo...ut_immune.html

http://www.llli.org/FAQ/prevention.html

[thixle]

I couldn't read without offering a

I also have an autoimmune disease (crohn's) and was told to wean my then 15mo DD in order to start drugs. Long story short, the drugs were perfectly safe for bfing and didn't do a damned thing for the disease anyway (oh, and I understand the cost! I had to go through a community charity bc I couldn't afford $1800/mo)... Autoimmune diseases are basically an unknown in medicine. Then the meds give you side effects that are as bad or almost as bad as the damned disease.

Anyway It's a rough ride, and you aren't going to get judgement either way from me.

[JessicaS]

Originally Posted by thixle

Then the meds give you side effects that are as bad or almost as bad as the damned disease.

They gave me one that made me hallucinate. Sheesh.

[annettemarie]

As you can see, the thread is quite a bit shorter. While it's fine to ask the OP respectful questions, please assume that she posted this in the Child-Led Weaning forum intentionally. As such, posts need to follow the forum guidelines:

2. Support for those who are currently practicing CLW. Society is not very supportive or encouraging of CLW and this is a place where those dealing with the many challenges CLW presents can come to find encouragement and support from others who either have or are practicing CLW.

Thanks, mamas, for your reasoned and well-thought-out responses.

[PJJ]

sorry mama

It must be difficult right now...
Glad you are researching and just not doing what the docs say, because in my experience as a nurse, I have RARELY ever had a doc say that lactation is positive for anything.

They have NO education about that part of the life cycle--neither do nurses, even now at most schools (have professor friends).

Good luck and hope for the best.