Dr. Jack Newman email/Domperidone

After reading your posts about emailing Dr. Jack Newman I emailed him about all our nursing problems and he wrote back! He sent lots of suggestions. What an awesome man. Thanks to the pps for your stories.

He is suggesting I take Domperidone (think that's the correct spelling). Anyone else take it?

He agreed that I should have never continued to use bottles early on when it was clear they were having breastfeeding problems. I know he is right...and it breaks my heart I did not try to use a SNS sooner. I know I had to use some kind of supplement, and that one would have made sure they stayed at the breast. But at the same time I don't know that I could have handled the situation differently unless I had some help...and I didn't. I honestly think this is why my LC led me to use bottles (or use them more often). By the time I got to her I was so sleep deprived and trying to nurse two "failure to thrive" babies who had sucking problems and were nursing around 18 out of 24 hours, was getting plugged ducts every other day, was not eating, and I did not have anyone to help me with the feedings so I could focus on working with them one on one. By the time I got to her even getting them latched on could look like a wrestling match. I can remember getting one on and then the other would fall off. And then I would get the other one latched on and then the other would lose their latch and fall off...and on and on. Sometimes it would take almost 15 mins just to get them both latched on and nursing. Then they would nurse for a few mins, fall asleep, I would wake them up, nurse for five minutes, fall asleep....etc...

I did later try to use a SNS, but it was so hard because I was also having to use nipple shields and the boys would pop off and cry or fall asleep, squirm, pull at the tubing, flail their arms, etc. It was CRAZY. If I had used it very early on, and had someone to help me get them each set up, I think it could have maybe saved the breastfeeding before their weights dipped and all the problems ensued. But of course I did not realize there were so many problems until later.

Anyway, guess I am still trying to process it all. I am thinking of maybe sitting down and writing it all out...just for my own sanity.
It hurts to try so hard at something and not have it work out.

But anyway, back to Dr. Newman and the Domperidone.
Anyone have any luck with this?

 

Domperidone is also known as motilium - i was on it & found it very helpful! my supply in my left breast all but disappeared after back to back bouts of mastitis in that breast and it seemed to need a kick start. but i, in my sleep deprived nuttiness, self dosed myself after the first couple of weeks or so & started messing around with how much i was taking, moving the dose up, moving it down. :crazy: my doc finally had to say to me point blank stop it or i'm not renewing your prescription! he was obviously right & once i stopped dinking around with the dose, it worked even better. :good:

i'm glad you got a helpful response! and i think your idea of writing everything down is a very good one. :hug: writing things out can be so helpful, just to get it out.

 

I'm so glad you got a reply and some helpful advice!! When I emailed Dr. Newman, he also included a prescription for Domperidone for me, but fortunately, I never had to use it. At the time, I was trying to wean my girls off of nipple shields, and he was worried they had decreased my supply. I had been pumping basically around the clock though, and luckily my supply kept up. I've heard lots of positive things about domperidone though, so I think it is worth a try for you!

I also had a horrible start to breastfeeding. Like you, my girls would fall asleep, refuse the breast, and were unable to latch at all!! They were also "failure to thrive", at one point neither gained weight for over 2wks, and didn't have BMs for 3wks! In my case, however, I was blessed to have my Mom with me 24/7 for the first 2.5months, and an amazing lactation consultant who had trained under Dr. Newman. It took 3.5months, but between the three of us, my girls eventually became successful breastfeeders. Support is crucial. I would NOT have been able to succeed if I had been alone. It would have been impossible. You have given a herculaen effort to breastfeeding your babies. You should not beat yourself up about the outcome. You have tried as hard as you could, and really, that is all you can do!! I agree to writing everything down..things will become very fuzzy as time goes on. I made a scrapbook of our nursing story. You have been amazing, your babes are so lucky to have you as their mom. Give yourself a big hug!

Melissa

 

The neonatologist recommended domperidone when my boys were in NICU. I used it for two months and it definetely increased my supply although I found I had to take the highest dose to get that. Good luck

 

In RE: the domperidone - I ordered some, but never ended up taking it because my horrible post-mastitis drop in supply righted itself before the meds arrived. If you can get a prescription, that would be great, but it is an off-label use for motilium to use it as a galactagogue. I (this is awful to admit) ordered it from an offshore pharmacy in Vanuatu. My LC was happy to give me dosing information.

But much more importantly, it sounds to me like you made very sane decisions given your situation. Truly, all we can ever do is our best, and you did that and then some. Newman's advice sounds good in retrospect, but only you know what kind of energy and craziness you had to work with at the time. There SHOULD be more support for nursing mothers. Your LC SHOULD have had access to a home helper who could give you an extra set of hands, but we're not there yet.

You are a wonderful mom.

 

Domperidone is the only reason I am still breastfeeding :good: I used it for most of the first year, mainly because I was still trying to pump for DD. The hard part is finding a pharmacy that will compound it for you as it's "illegal" in the US. When I lived in Washington state it was easy to find, but when I moved to rural Colorado I had to order from Canada. GL!

 

I have no advice, but you must know that you are doing an incredible job! Don't look back, only forward. Honestly...you are an inspiration...I know no one personally in my life, or myself, who would have had the energy to do what you have done to this point. :hug:

 

LovelyLily---I am in the US too, and I was wondering about how I can get it. I am going to see my OB on Friday, and I think I will mention it to him and bring along my prescription from Dr. Newman, but I don't know that he will agree to it. I may wind up ordering online too.

5280 babies--thank you very much. After I posted this long response below I saw your previous post, so I edited it to include what I am writing to you right now. You are right. Time to look forward. I still have a lot to process because losing the nursing is so tied in my mind to grief surrounding the death of my mother, but you are so right about looking forward. Anyway, the below is an attempt to process some of it. I appreciate having a place to write it out. Thanks again.
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I doubt they will nurse again, but I do plan to pump for quite some time, and I need a good supply for that. It should be okay to take only if I am pumping, right? And they still do latch on and nurse a tiny bit from time to time, but they won't nurse for long, partially I am sure because there is not much there due to my frequent pumping. But I never know if they will nurse, so I have to pump to make sure I keep up some kind of supply. Vicious cycle.


I learned something else interesting yesterday after taking them to the doctor for G's bad congestion, cough, and wheezing. In addition to a horrible cold, they both have bad ear infections. I first discovered G's ear infection about three weeks or so ago (which coincided with the beginning of his nursing strike), but I did not know E had a bad one too. He had actually gone back to nursing for a while and was nursing several times a day without bottles, but then stopped abruptly again probably about a week and a half ago. I wonder if the ear infection contributed. She said they were both pretty bad infections. So many puzzle pieces and ups and downs.

I am thankful that I know now that these problems are larger than normal, and that if I have another child it does NOT mean things will go the same way again. I know most people don't experience this kind of trouble.

Zabeta---I agree. It would be so wonderful if there were helpers for this kind of thing. In fact, my LC did try to find some help for me via my insurance. Because the boys had been diagnosed with Failure to Thrive she tried to get my pedi to request an in-home nurse to come help us out a few times a week. But I guess we did not qualify because we never could get the referral.

Looking back on my visits with my LC I can just remember her saying "You really need to get some help...etc, etc...You need to make sure you do what is best for you...etc." I wonder if I had had support if she would have mentioned the SNS. I mentioned it to her, but without much reply on her part. I wish I could go back and ask for some when I needed it most. This is one major lesson I have learned. I was seeking advice from professionals about the breastfeeding situation, but what I also really, really needed was some help just making sure I ate more than once a day, had time to pee, made sure I stayed hydrated, had someone to help me watch one baby while I attempted to nurse the other, etc. I can really see that now. I was so busy nursing around the clock I let all those things go. And I knew it was a problem then too, but I did not feel comfortable asking anyone for help for a variety of reasons such as lack of support, no close relatives, etc. My husband was a huge support, but he was at work a lot and also trying to take care of everything else while I sat and nursed all day and night. And I just all around suck at asking for help. I am going to change that starting now.

Thankfully, my MIL was here for the first three weeks and during that time I was well taken care of and nursed them separately, which was best because they were having trouble staying awake, latching, and I was having to use nipple shields, etc. I tried to wean off the nipple shields a few times early on (and really resisted using them in the hospital in the first place because I did not want to have to wean them off later. But the LCs there felt because they were having such latch/suck problems it was either use the nipple shields or have to start supplementing), but then I developed this horrible case of thrush on my nipples that felt like razor blades. So I started using them again after I had them weaned off at around 2 weeks. After my MIL left I had to start tandem feeding because there was no longer anyone here to comfort one while I was nursing the other (and they always wanted to eat at the same time...always!)

But we really were just not ready for tandem feeding. I needed more one on one time with them before I tried to balance it. I know my doula and my local LLL leader really advocated tandem feeding, but I don't think I did a good job explaining to them why it was so hard to tandem feed two babies who won't latch, need nipple shields, won't stay awake, etc. It was like a juggling act, as I am sure you all know from experience. And soon after my MIL left I got mastitis, which came back a few times, then the countless plugged ducts and continual pain, and then their refusal to nurse and screaming began sometime around then with their arching backs, etc....and then the realization that they were gaining NO weight. They had had poor weight gain early on, but by two months they were actually starting to lose weight. So I don't know what all happened to cause that, but I know the mastitis was probably part of it, probably the reflux, who knows what all.

So, I agree. I did what I had to do. And using a SNS with two babies who already have trouble latching and tandem feeding would have been impossible without someone to help me use it.

This may be TMI, but what makes this doubly hard is that I KNOW my Mom would have helped me if she were still living. She fought very hard to breastfeed me back when no one in our area was breastfeeding. I grew up knowing I was breast fed and how important that was to her. I never doubted I would breastfeed my own children. It was just a given, you know? I also know she faced challenges, and wound up weaning me at three months due to repeated cases of mastitis. That was back when doctors suggested weaning for mastitis. So I know she would have been so supportive of my decision to nurse until at least one year, probably two or more. Unfortunately, she died three months before I found out I was pregnant with the twins. She died from breast cancer. Besides my Mom I don't really have any close female relatives, and no one else in my extended family really supported my decision to breastfeed, and I don't think anyone really *got* why it meant so much to me. I can just imagine their response if I was to ask them to help me use SNS. LOL! They would probably laugh their heads off. It's pretty funny thinking about trying to explain it to someone who thinks breastfeeding is kind of weird to begin with. haha! But if I could go back and do it over I'd let them laugh...as long as they agreed to help. ha!!


I really appreciate everyone's kind comments, but I don't feel like I was putting out effort so much as I was just trying not to experience another loss. Does that make sense? I was trying hard, but not trying hard sounded much worse.

Anyway, if you have made it until the end of this LONG post, thanks for reading. I guess I am already well on my way to writing this all down here. haha!

I LOVE the idea of a nursing scrapbook, tri159. What a neat idea! Maybe I will do that for us. It could be healing for me. I know I have learned lots of lessons through all this. I have also learned that I want to be a lactivist of sorts and help other women find access to the resources they need.

Thanks everyone for all your support. You will never know how much it means to me. Who knew people I have never seen in real life could be so encouraging?

 

hugs mama! you are amazing. I am using domperidone. I got a script from my babies nurse pract. and ordered via canadadrugsonline which seemed to be one of the best prices I found. I went up to 160mg w/no strong effect and am now weaning down to 90 where I will remain. I have concerns that it is causing me to hold onto weight I am trying to lose and since I am not nursing exclusively I don't feel inclined to take it at the max dosage.

 

:hug: thank you for sharing your story in this way. i'm literally sitting here teary eyed. what a roller coaster and an incredible journey. i'm feeling so many things right now on your behalf. i'm not even sure what i want to type but i felt like i needed to reply. :hug:

 

I've researched domperidone but I probably shouldn't take it due to a pre-existing condition...I am currently taking fenugreek and blessed thistle and so far keeping up plus a little bit of stockpiling by pumping even after a breast reduction.

Just to add, how domperidone works, is it acts on the pituitary gland to help increase the production of prolactin. Dr. Newman's site talks about who it might be most effective for--and mums who are pumping are one of the groups because they don't get the direct baby stimulation. Yes, since the pituitary gland also regulates appetite and metabolism, it can affect weight gain/loss. But what's more important?

Good luck!