RI Pediatrician with up-to-date breastfeeding/medication info? - Mothering Forums
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#1 of 11 Old 03-15-2011, 11:32 AM - Thread Starter
 
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I'm about to have my second child.  Since weaning my first at 14 months, I have developed ulcerative colitis and am taking Remicade (an immunosuppressant) every 8 weeks. 

 

According to my GI, new research shows that it is safer for baby for the mother to stay on Remicade through pregnancy than to go off it.  But he recommends against breastfeeding while on it- it may compromise the baby's immune system. The bottom line is that there just is not enough research to prove that it is safe (there are several small studies indicating it is, but not enough to make the doctor comfortable). My midwife and pediatrician say same thing-  there isn't enough info to show that the medication is safe.  Some info indicates it is, but not enough to make them comfortable.

 

Needless to say, I am really upset at the prospect of not breastfeeding my second child. My priority, of course, if his or her health. Going off Remicade is not an option, as it would put my life at risk.

 

I would love to talk to a pediatrician who prioritizes breastfeeding and is willing to look at the small amount of information that is out there, or who has worked with other bf'ing mothers on serious medications.

 

Any advice about who to go to in the Providence area?  Thanks!

 

 

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#2 of 11 Old 03-19-2011, 06:26 AM
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I don't have any pediatrician recs-sorry.

You may want to take a look at the book Breaking the Viscious Cycle by Elaine Gottschall and the Specific Carbohydrate Diet.  

http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

http://www.breakingtheviciouscycle.info/index.htm

There is also a Yahoo Group

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#3 of 11 Old 03-19-2011, 06:53 AM
 
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It sounds like the 3 people you've spoken with are all basing their opinions on the most up-to-date information.  I think I'm confused as to what you're looking for.  Just a 4th opinion who will tell you it's okay, where the first 3 told you otherwise?


Trying to live a simple life in a messy house in a complicated world with : DH, DD (b. 07/07), DS (b. 02/09), and DD (b. 10/10)
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#4 of 11 Old 03-19-2011, 11:04 AM - Thread Starter
 
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Thanks for your reply, Lach.

I guess my thing is that my GI may not know much about breastfeeding (and scoffed when I told him I have a midwife rather than an OB), my midwife told me to ask a pediatrician, and my pediatrician said she doesn't have access to current research on drugs like Remicade. So there was kind of a circle of "I don't know, so you'd better not."  I'm hoping there's some doc who has experience and can offer something more than "I don't know, so you'd better not." 

The Pediatrician did say that Women's Infants has good information about all kinds of pharmacy stuff, but I haven't figured out who to contact there.

I don't want to be a fool and just keep looking until I find someone who tells me what I want to hear- I'd just feel better if I could talk to someone who had experience or at least has read up on the issue.

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#5 of 11 Old 03-20-2011, 08:41 PM
 
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Have you checked out Dr. Hale's message boards/websites (new version and old version)? I believe he's considered one of the foremost experts on medications and breastfeeding. If he doesn't have recent info about the drug, maybe you could have an LC or health care provider contact him (I don't think he's taking guest questions at this time).

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#6 of 11 Old 03-21-2011, 02:11 AM
 
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Ah, that makes more sense.

 

In my experience, pharmacists actually receive the most up to date information about medications.  Maybe you could contact a school of pharmacy, or ask your doctor for some sort of referral to someone who is well respected in the medical community?


Trying to live a simple life in a messy house in a complicated world with : DH, DD (b. 07/07), DS (b. 02/09), and DD (b. 10/10)
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#7 of 11 Old 03-21-2011, 06:16 AM
 
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I second checking on the infant risk site -- Thomas Hale IS the foremost authority on the use of medications during pregnancy and nursing.  According to what I've read, it appears that the molecular weight of the drug will prevent Remicade from getting into the breast milk. 

 

There's a great post on this site:  http://www.tcoyf.com/forums/p/114010/1348542.aspx?d=1

 

Look for the one by CandCfam replied on 02-15-2011 2:59 PM  -- she included several links that are relevant.  You could also ask that your doctor contact the infant risk center at Texas Tech University to get additional information.

 

How to reach the InfantRisk Center:


The center is open to answer calls from 8 a.m. to 5 p.m. Monday through Friday at 806-352-2519. Information can be found on its website, www.infantrisk.org. Its Facebook page can be found atwww.facebook.com/InfantRiskCenter.

 

http://amarillo.com/news/local-news/2011-02-05/center-aids-moms-docs

 

Good luck!


Me36), PCOS -  IUI#1 post HSG w/50mg clomid & trigger 7/25/12: BFN  & med break for cyst IUI#2  9-9-12 BFN IUI#3 10-2013 BFN  IUI#4  2-18-13 same meds, new donor BFN, IUI#5 6/1/13 100mg clomid trigger, BFN,  IUI#6 TBD 8-2013 GONAL-F and trigger blogging.jpgdog2.gifcat.gifcat.gif

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#8 of 11 Old 03-21-2011, 08:46 AM - Thread Starter
 
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Thanks, all- I ordered Dr. Hale's book, but didn't realize I could contact the Infant Risk Center directly.  I will do so!

 

The info I have seen from Dr. Hale does say that Remicade doesn't present a breastfeeding risk-  now just to find a doctor who will consider that as legit! 

 

I am concerned about doctors dismissing me as a nut and not working with me on this.

 

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#9 of 11 Old 03-21-2011, 09:02 AM
 
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I would also recommend getting in touch with Kathy Moren at Healthy Babies, Happy Moms, Inc. on Post Rd in East Greenwich, RI.

 

She may have input on pediatricians and this drug and breastfeeding.  http://www.healthybabieshappymoms.com/

 

I just took my breastfeeding class with her.  She said that Thomas Hale is THE go to person for these types of resources -- and she said there are VERY FEW DRUGS that are prohibitive to breastfeeding.  Sometimes, it's about WHEN you take the medication that makes all the difference.  She is the one that told me that physicians and patients should be directed to Dr. Hale. 

 

I suspect she's probably worked with clients that take it as well.  She's very highly respected in the RI Birth Community.  Also, you might like to check out the RI Birth Network for pediatricians.  http://www.ribirth.net/

 

 


Me36), PCOS -  IUI#1 post HSG w/50mg clomid & trigger 7/25/12: BFN  & med break for cyst IUI#2  9-9-12 BFN IUI#3 10-2013 BFN  IUI#4  2-18-13 same meds, new donor BFN, IUI#5 6/1/13 100mg clomid trigger, BFN,  IUI#6 TBD 8-2013 GONAL-F and trigger blogging.jpgdog2.gifcat.gifcat.gif

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#10 of 11 Old 03-21-2011, 10:00 AM - Thread Starter
 
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Thanks for all the resources-  this is exactly the kind of info I was looking for.

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#11 of 11 Old 03-25-2011, 07:24 AM
 
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HI!!!!!!!!!!!!

 

I'm going to send you a PM, but I'm actually really excited to see you!

 

I have severe Ulcerative Colitis and I'm also on Remicade.

 

Remicade IS safe for breastfeeding.  The molecules are too large to pass into breast milk.  Also safe: Prednisone, Asacol, Lialda, any ASA med.  Not safe: Methotrexate, 6MP, Thalidimide, and possibly Naltrexone, but that one depends on dosage.

 

I have done a ton of research:

http://9davids.blogspot.com/2010/12/moms-with-ibd-all-about-meds.html

 

Our pediatrician is Dr. Maria Staracawicz at Prima Pediatrics in Cumberland.  She's not particularly AP-wild, but she is very responsive to her patients, and willing to trust our decisions.  For example, she has been completely supportive of not giving DS any "live" vaccines because of Remicade (did you know that?  Your baby has a legit medical exemption for vaccines.)

 

I *highly highly highly* recommend seeing Dr. Straus at Progressive Health RI in Providence as your GP.  He's been testing me for food allergies and has me on complementary supplements that are really helping.  I can share all of the info with you - he has opened my eyes to a whole new way to treat Colitis, that I'm trying along with my "regular" meds.

 

Who is your GI doc?  I am getting excellent care from the doctors at Consultants in Gastroenterology in Providence.  Paul, the RN who runs the Remicade room, is *extremely* knowledgeable about how Remicade affects breastfeeding and pregnancy.

 

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