Does anyone else have insuffient glandular tissue? - Page 5

[Kay Mac]

Hi It's Kay

Havn't tried goats rue, but have read in a chinese nutrition book that goats milk is the next best thing to mothers milk. Though never tried that either. sorry I tend to ramble. I used the lactaid for all four babies nd liked the softness of it. I rember squeezing the air out of the bag after filling and leaving a couple spaces of air just at the beginning of the hose so I could watch them to be sure the formula was moving properly. Also the coldness of the formula on your nipple lets you know it is flowing properly. Time would vary depending on if the baby was "on line". Sometimes the hose would slip off the side of my nipple therefor ending up on the side of the babes pallet. This would take longer. I think BF time varies with everyone.

[Kay Mac]

Hi larastheme
I started to reply and I think I may of lost it all when I visited the Lact Aid web site.
I was there looking to see if It listed the ceo of the co. It didn't. If you call the 800 number to say order supplies it's the lady who calls you back. I can't remember her name but she was very helpful and knowledgable, a wealth of information about people who have studied and researched this problem. (IGT) There is information out there Its just not at all easy to find. It's interesting about your grandmother. good to know for our daughters sake that it may be a inherited flaw. My mother breastfed, my grandmother also no problems. Though my father was adopted so theres an unknown on his side of the family. I have a Great-Aunt who looked like she had a similar build from pictures I saw but she never had children. I'm going to post very long story hoping it will help other mothers realize what exceptional people we are for this undying love and effort we are giving. We definately rock!

[Debstmomy]

I too have suffered with this with my first 2 babes. Had to supplement with DD from 6 weeks on (nursed 9most) & DS 3 days on (weaned 4 yrs). Back then, I had no idea what was going on. Went to a LLL Conference & met the Amazing Lisa Marasco and took her session, Insufficient Milk Syndrome, Myth or ??, titled something like that. Boy, I could have been her text book client.

Now I am pregnant with #3.(I am hoping that none of this comes back, but reality is it probably will so I am setting up my support system. I have 500oz frozen BM donated to me. I have 3 moms that will pump for me. I averaged about 8oz supplement in order to stimulate a good growth pattern.) Needless to say I have been in contact with Lisa. She did her master thesis in Lactation on this, btw. She is published in the Human Journal of Lactation. Anyway she believes I probably have PCOS. Some (not all! some pcos women have coupious milk supplys) women with PCOS suffer with this & do not even know (me!) Many women whom are dx, can get on a med called Metformin, which happens to stimulate breast growth. However I am not dx, so I can not get Metformin. I will begin Goats Rue soon, just need to order it. Goats Rue has Metformin properties & has been know to stimulate breast growth. (I am hoping for this!) I will also take More Milk Plus from time of delivery, and if necessary (which will probably be) get domperidone.

Someone stated that women with this tend to work harder to breastfeed. So TRUE! At least the really dedicated ones, like us! I worked so hard with my DS!!! More so than with DD. This one, I pray for milk to flow from my breasts. I hope the herbals work!!!! It is such an emotional thing for me. I am really REALLY glad I have access to human milk to supplement with this time. That helps on an emotional level. I hope we can keep this thread active, as I predict I will need continued support.

[darwinphish]

Hello all!

I just read this entire thread and am so uplifted by all of your stories! It's so nice to feel that 1) I am far from being alone in this struggle, and 2) I'm not crazy for continuing to BF despite all these obstacles. I'd also like to invite everyone to join a Yahoo! group I'm a part of, Mothers Overcoming Breastfeeing Issues (MOBI):

http://health.groups.yahoo.com/group/mobi/

It's a great group for finding support (and NO judging for FFing or anything else!) and answers to any and all BFing questions.

I'm not totally sure of the reason for my low milk supply. I think it's mostly to do with how sick I was after delivery - I've never been so sick in my life (I had unexplained and sudden REALLY high blood pressure after the delivery, plus terrible pain from degenerating fibroids... I was actually delierious much of the time) and DD was in the NICU with anemia; we were effectively separated for a week. I barely pumped that whole time, and my milk just never came in. It was devastating, emotionally and physically.

However, my milk did eventually come in, but when it did (at 4 weeks) there wasn't much. Part of me thinks that I'm just perpetually 4 weeks behind in meeting DD's nutritional needs, but part of me thinks there's a larger problem. I'm currently taking domperidone, MM Plus, and goat's rue tincture. I've been trying to pump the recommended 6-8 times daily, but am lucky if I get in 5.

I don't have PCOS, but was on metformin for a strong familial insulin resistance - my endo actually put me on it as a preventative as no woman in my family has NOT had gestational diabetes! It did the trick - I had no sign of GD.

I actually went off met after delivery (sort of accidentally, I just kept forgetting : ) even tho my endo wanted me to keep taking it. I had no idea it could be helpful to milk supply - I'll start it up again since according to Hale's book it's safe. I also have a hormonal imbalance - I have large uterine fibroids that interfere with normal hormonal function, eating up estrogen and producing excess progesterone. In fact, I wasn't even supposed to be able to get pregnant with them, and they're most likely the reason why DD crashed at the end of my pregnancy - they wrestled away her blood supply. My LC actually thinks that it may be the fibroids that are impacting my milk supply the most. It seems like they are always doing something to make life hard. : I *could* have an operation to remove them, but I am sort of done with hospitals and operations for the moment.

There is a med to treat fibroids that will come out in 2005. It makes me sad, but if it's necessary to stop BFing DD at one year so I can take it, I probably will.

There are so many emotions that I go through on a daily basis, trying to BF. Each small victory and setback gets so magnified. I sometimes wonder why I am SO obsessed with it, if it's healthy. The worst guilt I have by far is when I fantasize about "next time" - as in, with my next child, I won't have these fibroids, I won't be sick, s/he won't be sick, we'll BF from the minute s/he's born, s/he'll lie on my tummy and I'll be the first person s/he sees, and we'll BF for years in perfect harmony... It's silly, and probably totally normal to want that "second chance" but it makes me feel terrible that I can't just accept and love what I do have with DD and not need to fantasize about something "better".

I really want to get to a place where our BFing just "is", where I don't feel any constant, obsessive, drive or struggle to make it "better". I pray every day that my milk supply will increase, but I also know that I need to find some acceptance of where it is right now, to find a way to love what we have and stop regretting that it's not the perfect fantasy I had before she was born.

Well thanks for reading! All I really intended to say was a quick hello to all you fellow low supply mamas - guess I had some thoughts that needed to get on out!

to all of you!

[Debstmomy]

Welcome Liz.

When you start back on the Met, can you post if you see any results??? Also be careful of mixing Goats Rue with Met, as they are closely related. I would work with your LC on it.

I too have had fibroids. My Doc wanted me to have a hysterectomy & I said NO WAY! UAE was not an option for me either. I went the Myomectomy route, for me that was best. Have you considered that? What med are you talking about? I wrote a research paper on fibroids about 1.5 years ago & I do not recall any meds for fibroids (Other than hormones.).I am very interested in this.

Good Luck. You are NOT alone. For me finding BF support was very valuable.

[darwinphish]

Hi Cristina, Thanks for your reply! I'll definitely let you know how getting back on the met goes. Thanks for the tip about the Goat's Rue - I'll call my LC about it tomorrow.

I've definitely considered having the myomectomy - especially since the fibroids grew so much during my pregnancy, but I'm just not up for another major abdominal surgery at the moment! The drug that I'm talking about is asoprisnil - it's a "selective progesterone receptor modulator" much like one of the 2 drugs that make up RU486. It's currently in Phase III trials and should be released in early 2005. I'm very hopeful that it could be a good drug for me - espeically since UAE is only recommended for women who know they're finished having kiddos, and myo sounds pretty intense.

I'll let y'all know how the met goes! Thanks again for the welcome!

[Kay Mac]

If anyone can help me better understand how these posts , Quick replys, and threads work. Or if you could point me in the right direction I would appreciate it. When I go to my thread it says i have three posts. I only see the one from kay mac. now when I send a quick reply does that get posted or does it get sent to the author of above thread? Thanks for your help if you can. I found the replys. I need to get more computer training.
I'm excited to be in contact with other mothers with the same challenges. For me The most important thing to keep in my mind while breast feeding, bottle feeding, supplementing and pumping was to enjoy this beautiful little baby, and if what you are doing to get the most out of your body is exausting you then stop it and just always bring to breast first before any supplementing system. After 2months of all of the above methods I was exhausted and did chuck the lact Aid Always fed breast first then Avent new born nipple ( a one hole nipple) to "top the baby off". I stopped trying to keep track of how many ounces of formula vs. breast milk she was getting. I'm talking about my fourth child.
She nursed the longest and sometimes nursing was all she would need. I think because sometimes its not the
quantity of milk but the closeness and suckling that they need. I guess at times I was more of a human pacifyer. I'm just going to share any bit of information
It may help someone else and it helps me to write about this shocking, challenging and rewarding part of my life.

[catnip]

I've just been told by my lactation consultant that I have what she calls PCOS breasts. I've been making about 90% of what my 10 week old daughter needs, and she is hopeful that with agressive pumping, I may be able to increase to all she needs and simply supplement with my own pumped milk. So far her poops are improving and we're up to 10-12 wets a day with 2 days of pump and sns. No formula yet, but as long as I can still night nurse, that will be something. LC says DD may need a bottle of formula or two a day as she grows, but that she'll help me breastfeed as much as possible. Her weight gain has so far been on the very low end of normal, hydration always good, so I'm not so bad off. Just a note on formulas, Horizon Organic now makes one that is A) organic and B) not aggressively marketed. If we need it, that's what I'll use.

[darwinphish]

Hi Michelle - good for you for working so hard to breastfeed your DD! I thought you might be interested in joining MOBI - Mothers Overcoming Breastfeeding Issues:

http://health.groups.yahoo.com/group/mobi/

It's a great group of mamas, many working to overcome supply issues, like myself. I'm only at 50-60% of DD's needs but still hopeful that I can improve.

Are you taking metformin for PCOS? Many moms with PCOS find that Metformin is helpful to their supply. And how about fenugreek? At 90% of your DD's needs you would be a very good candidate for using herbals to put you over the top!

By the way, if you do end up needing formula, I would wait on Horizon until your DD is about 4-5 months old. It's recommended that infants only consume partially hydrolyzed milk proteins (like GoodStart) until their guts mature a little. It kills me to use Nestle anything but it's really the best for DD's tummy. We plan to switch to Horizon in a month or so, along with using donated breastmilk whenever possible.

and good luck!

[catnip]

I've never been diagnosed by a Dr. with PCOS. I concieved accidentally (good accident) after 6 years of irregular periods and no birth control, followed a massive weight loss, then 4 months clockwork regular 29 days. The LC says my breast shape (and my own observations of how they function,) coupled with that history, leads her to think I have PCOS. After 3 days of aggressive pumping, she's gained almost 4 ounces, and has a higher color level. I'm pumping extra in the AM and feeding it to her in the evening when my supply is low.

[HaveWool~Will Felt]

I just read this entire thread and I am crying my eyes out.
I DO have PCOS and have had three children. Had difficulty BF with my first two (low milk supply) and my third child died hours after birth. I donated her breastmilk for 3 months.

I have taken all of the herbs and domperidone. NOTHING.

I am currently gearing up for ttc in about 3 months. Really wondering about the Metformin.

Thank you for starting this thread. More later.

[jenrookle-215]

what about a supplemental nursing system?

I did not have your condition, but I did have surgery on one breast that greatly reduced my milk flow on that side. To top it off, I developed a rare immune reaction to my pregnancy at 7 months and had to be put on some nasty steroids and other meds that would not be compatible with nursing (natural remedies just wouldn't work and unfortunately, the medicines were the only real choice) After my son was born, they added the one drug to the mix that was really made nursing a no no and my doctors told me I had to stop breastfeeding. I had nursed him for six days and was, needless to say, devastated! I had nursed my first child 'til he was over 3 years old when he weaned naturally, so i was definitely committed to the nursing lifestyle and way of parenting.


I decided to pump and dump the medication tainted milk in order to maintain my milk supply. I bottle fed him during this time. The pumping schedule was really hard because I was still quite sick and I didn't really know how long I would have to do it (how long I would have to keep it up if I were going to wait for them to "let" me go off this medication) Finally, I felt better enough and not so dependant on this particular medication that i JUST FLUSHED THE REST OF THE MEDICINE DOWN THE TOILET! What a release that was!!!
And here's what I really wanted to tell you (sorry for the long preamble) I bought a medela supplemental nursing system that allowed me to feed Nicholas from my own breast even thought i did not yet have adequate milk supply (the pumping and dumping only helped maintain at least SOME flow of milk so i wouldn't completely dry up.) If you don't know, supplemental nursing sytem consists of a bottle that you wear around your neck that has a small tube coming from it that you can run down your own breast and nipple. The Baby nurses from your breast, stimulating your own milk supply, while receiving the supplement of milk from the tube. You can have the closeness and joy of the nursing relationship even if you aren't ever fully able to wean yourself and the baby from the supplement. The SNS helped me to basically relactate after I had almost dried up (i used milk enhancing herbs in conjunction with the SNS) After 6 weeks of pumping and dumping, I got to nurse Nicholas as if it was the first time!! It was such a joy. I then went on to nurse him from one breast for almost 4 years.

Point of story is that the SNS really helped me create more milk flow while enjoying the nursing relationship. I had two obstacles...one breast that did not really work due to surgery and the period of not being able to nurse and subsequently losing milk supply and needing to use herbs and the SNS to rebuild that relationship.

I don't know about your condition, but I just wanted to tell you this story to give you some encouragement. Ask your lactation consultant what she thinks about the SNS (La Leche can put you in touch with one as can your local hospital...try la leche league first, though) I still have mine and I'd be glad to offer it to you if you want to see if it helps.

Good luck.

Jenny

My email is [e-mail]

[Stormintheattic]

WOW! There is an insuffient glandular tissue topic on MDC?! I am going to subscribe to this and slowly work my way through all the posts (being a non-native speaker I am kinda slow'& please forgive my spelling). Thanks for starting one!

I just wanted to say hi and to all you mommies struggling with this. When BF-ing both my babies we had huge problems, not in the actual feeding (they both were naturals!) but not gaining any weight at all in the first 2 months of DS'life. He lost over a pound and a half initially even though I clusterfed about 20 hours a day. Pumping the other 4. 3 LCs visited and were : because over here most LCs still believe having insuffient glandular tissue doesn't interfere with being able to BF properly. So DS was supplemented a little formula (no mm donation scheme over here yet then, it only started this week, YAY!) until he selfweened at about 6MO. I estimate I made about 75% of his intake.
Finally the 4th LC immediately saw the problem. By now I was BF-ing DD with the same problems. Made worse by the fact that DD would take the bottle or anything else but my breasts. So we SNS-ed until DD was 7½MO and she weened herself.
I am hoping to find some more info on the supplements you take to improve supply. I have tried fenugreek and domperidone with DD with hardly any result. Cashew nuts seem to improve my supply slightly but after 7 months I couldnt stand those anymore ;-)'Also hoping to find out why my DC ween themselves so early. They are pretty active kids so that might have something to do with things.
So what is this Metformin I keep reading about?

jackieg213, what an amazing gesture to donate your DDs milk. we are hoping to be TTC in about 3 months too.

[HaveWool~Will Felt]

Welcome Yvon! Very happy to see you here.
Thank you for sharing about your struggles. It helps to not feel alone.
I am really hoping that the INTENSE chinese medicine and scupuncture I am doing will make a difference when it comes to BF my next baby.
I got to tell ya, there aren't many things that feel as hopeless as not being able to feed your baby entirely. It so breaks my heart.

Yvon, I see you are a knitter....what are you currently working on? I just finished, today, a beautiful purse that I knit with wool, felted it....this wool didn't felt so well....however it is still lovely.

I am hoping to broaden my knitting horizons... :LOL

Hope to see you soon.

[Stormintheattic]

WOw, I just finished reading the entire thread and I am in tears over a;; the stories.
Jackie, you're right. It DOES help to know you're not alone even though everyone you know tells you you are. And it does break your heart when youre not able to be the supermom you want to be.

I always felt I was in between the huge part of moms who try but give up at the first sign of a possible problem and the all-natural-few that do not seem to have any problems at all. The first group looks at you funny because you keep on trying and starve your child, the last group keeps insisting that you must be doing something wrong or arent trying hard enough.
So, tell me more about Chinese medicin and what you are going to try specifically. WE have a famous chinese doctor quite near that I might want to visit when I am more informed.

knitting: Just finished some toe-up-socks for DS that have been my on-the-go WIP for the longest time, he only just fits them now. And a fairy cardigan/dress for DD. My other WIPS are 4 pairs of long pants, 1 skoaker (skirt-soaker) and 2 soakers. They're all knit but waiting to be embellished. I am an embellishment freak in the CD world. As you can see here.
I love felting my knits too! Especially bags and hats and stuff. At the moment I am widening my base a little, learning to spin my own yarn and starting to weave. I love fibre arts!

[Debstmomy]

I just got 500oz of breast milk! I am so happy! I really needed that reasurance, just in case my past problems reappear.

Now this baby can seriously come at any time. I am ready!!!!!!

just thought I would share!

[Mizelenius]

Can I join this thread? I don't have IGT but I have read every post in this thread and can relate to so much of what you are saying . . .in my case, my DD has a sucking problem so she just doesn't get most of the milk that's there.

Anyway, I can relate to feeling embarrassed by carrying around bottles (though we use a Haberman feeder to improve her suck). I also nurse her and bottlefeed her, which I'm sure looks weird. It makes me sad to see how satisfied she is after a bottlefeed and fussy after nursing. I spend so much time feeding her (nursing, bottlefeeding, pumping) that I have very little time/energy to really enjoy my DDs. I have had to use formula on occasion because sometimes the pumping schedule gets too complicated (and I have to be very careful about maintaining my supply-- it's adequate but not overabundant by any means). I don't have super-bad feelings toward formula anymore now that I am thankful for its existence . . .well, I do, but only in the sense that it reminds me how I feel I've failed.

I wake up every day thinking "Maybe today the problem will have fixed itself!" I have periods where I feel OK, but then when my milk supply in the fridge gets low (and I don't have a bigstash!) I start worrying that maybe my pumping won't keep up with DD, or that there is realistically a point where I simply won't be able to find the time to pump exclusively, so DD will be mostly FF.

I feel so lonely. Like you mamas mentioned, it's like limbo . . .where do I fit in? Not with exclusive BF (I'd feel I have to justify what I do) and not with FF who did it by choice. Very few people can truly understand. Sometimes I wonder why it's such a big deal, but then I realize that eating is one of the major activities of infants, so OF COURSE it's a big deal.

Once in awhile I think I should just FF and be done with it. But then I find some new hope, even though it is frustrating to be disappointed again and again. I don't think it's healthy to be obsessed either. I think I will regret it and wonder why I didn't enjoy each precious moment instead of dedicating so much effort to this. It's a balance that I don't yet know how to achieve.

I exclusively BF my 1st DD, so I find that I am adjusting (poorly) to how I parent with bottlefeeding being so important.

Thanks for letting me share.

[ejones]

I have insuffient glandular tissue

Hi. I also have tubular breast. This problem has really made me depressed. I can't get over the fact that I will most likely never exclusivly bf my children. My son is 6mo. and we still nurse when ever he wants to. I can't stand the fact that nobody really talks or knows anything about this (Except all of you). It makes me feel so horrible. I tried the drugs and herbs and nothing works! The most I've ever pumped was 2ounces! I went to the LLL web and they didn't even mention it. Shouldn't they explaine these problems? I am just so bitter about this whole thing. I hope I can bf exclusivly my next child, but then I will feel guilty b/c I wasn't able to do so with my first.

[T a r a]

ejones,

I feel your pain. the most I have ever pumped is 2-3 oz at once, and I still feel like a failure as I was not able to EBF my child. I'm hoping next time will go better. I'm trying to figure out all possible ways to improve next time. I felt so bitter and jealous talking to a friend of mine this weekend. She has been nursing her 4 week old with no problems, has plenty of milk, and her breasts are the smaller than mine (A before baby, B after). I felt so awful for wanting her to have problems too. I cried after I left her house, feeling terrible and like a failure because I couldn't EBF my baby and had to use bottles and formula. I know DS is fine and healthy and doesn't know any different, it just hurts, KWIM?

[HaveWool~Will Felt]

Originally Posted by ejones

I tried the drugs and herbs and nothing works! The most I've ever pumped was 2ounces!

Me too, honey...me too!!!!
I feel like such a failure around bf'ing....and my youngest is 4.
I did nurse my children until they were 2....although I was never able to EBF.



If only....