WWYT/WWYD. Complicated but need advice.

JessiLW

I wrote a post earlier today about being in the hospital. I was prescribed an anti-convulsantt-Tegretol-used to treat a painful nerve problem. Two docs and the American Acedemy of Pediatrics say that its ok to take with breastfeeding. Two pharmacists that filled it today said that they would not want their breastfeeding wifes to take it. It is excreted in BM but in small amounts. Also bear in mind that this med is safe for kids to use for seizure control and generally has few side effects on them.

Now this nerve problem can be a one time thing, it can come and go or it could be a chronic life-long thing. I won't know for sure until or if I ever get it again. That being said it was by far the most painful thing I could ever imagine (told the doc I would give birth again a hundred times over if it meant never having the nerve pain again) Both docs I saw in the ED have been practicing for 15+ years and neither of them had seen it before but the liturature told them it is probably the most painful condition they will ever see. (Lucky me...I get to be the one in 500,000 to get it)

And to top it off this med is one a few that they could give me but is generally considered safest.

My options are...

1. Start taking the med as prescribed tonight and risk making the baby sick with the BM (the concern about BM is what is really holding me back from taking it)

2. Take the meds and abruptly wean LO (not very likely, BF is very important to me.

3. Don't take the meds and hope that I don't have another flare-up (I'd rather just have to deal with the pain than make LO sick or wean him right now)

Kind of damned if I do damned if I don't

This med also has a few other issues that concern me. It can cause and increase dizziness and weakness which could jeopardize my job as a paramedic. It renders BCP's useless and we would HAVE to use condoms religiouslyb/c it can cause birth defects. It will interfere with my synthroid, has many interactions with antibiotics and makes it much more dangerous to be out in the sun (its summer soon and I live at the lake) 

Its the weekend now and my doc is out of town until the 24th so I'm kind of high and dry on that front. Plus all the docs I talked to said that basically its up to me but there will be risks no matter my decision.

Sorry this has gotten so long but I really need some input and outside perspective to make this decision. Any help or thoughts would be very much appreciated.

MelissaSue81

Have you checked out this website about the drug? https://neonatal.ttuhsc.edu/cgi-bin/discus/discus.cgi?pg=topics&access=guest

I have no idea what to tell you to do. If you take it, will it be something you have to take forever? I actually would be more worried about the other side effects (interfering with your synthroid, birth defects etc) than the BF stuff.. I mean thats going to affect you for the rest of your life where as BFing.. well its a year or so.. and your DS would probably be OK on formula.. you know? Not that I am downplaying the importance of BFing for you..

 I am sorry you are having to deal with all of this with a newborn at home.

AB&TB

Hmm.  I don't know what to tell you.  As you might be aware, my LO has been having seizures since he was 4 weeks old, and has been on some med or combination of meds since he was 5 weeks old.  If I had my choice, I would not be giving him meds, but that is not an option for me.  We have never been on Tegretol yet, but the most common side effects from most of the meds we have tried are drowsiness, which isn't really a big deal.  A few other side effects that you might be more concerned about are appetite suppression, fussiness, and insomnia.  But most of these side effects are short lived for only a couple of weeks before the body adjusts, and are entirely dependant on the drug (I am not familiar with Tegretol's side effects).  Have you talked to your pedi about this?  Is it the BF experience that you want so badly, or the BM itself?  Maybe if you pump there is something that you can do to the milk (i.e. freeze it or scald it) to remove the drug residuals? 

I guess if it were me, I would try to wait until 6 months, but if the nerve thing happened again in the mean time, I would go on the drugs and then figure out whether to wean or just BF and not worry about the residuals in the BM.

Good luck!  This is a difficult decision.  What does your DH think?

justgnat

That is tough. is there something they can give you to have on hand to treat it rapidly if it comes back? And like PP said, those side effects sound really craptastic. I might just wait and see if it happened again, but that is pretty scary.

I'm sorry! ((HUGS))

Crazycrustacean

Have you googled an expert on the illness? Maybe you could call/email, etc him/her and explain the situation and ask for an opinion. Ask whether the average person who does get this, get flare ups. Ask what the likelihood is.?

I mean having 15+ years of experience is great, except that they don't have 15+ years of experience with this if they've never seen it.?

Having said that, you can also call the drug's manufacturer and ask whether the amount passed into bm is a trivial amount or what.?

And if nothing else, I personally would wait to see if i had another flare up before taking the drug. ?But my main concern would be the possible side effects. Interfering with bfing is one thing. Interfering with your entire quality of life is another. ?

Crazycrustacean

Sorry I haven't had my coffee yet. I hope you feel better and that it's an isolated event. I also hope you're able to make a decision that works for you & your LO.?

dr.girlfriend

I'm sorry to say that I would not take Tegretol while breastfeeding. ?Do you mind sharing the name of the condition, that might help me give you a little more guidance. ?Is it trigeminal neuralgia? ?Would Trileptal be an alternative? ?I think that's supposed to be equally effective on nerve pain and safer for breastfeeding. ?Will you have to take this every day to be effective, or can you only take it when you have a flare-up? ?If so, I would think about finding out how quickly the drug is metabolized, and feeding LO from your freezer stash when you're on it while pumping and dumping your regular supply and then refilling your freezer stash while crazy when you're not on it. ?I'm sorry, nerve pain absolutely sucks. ?But I'll be totally honest, I'm a pediatric neuropsychologist so I don't prescribe meds but I do see a lot of kids on seizure meds, and if it were me I would rather give formula than have even trace amounts of Tegretol passed through my own breast milk.

ETA: ?I'd try to see a neurologist ASAP. ?They may have a better idea of what meds might treat your condition while being safer for breastfeeding than the ER docs would.?