This is not the end!

Well, the cutiebug is just one week shy of 6 months and guess what's happened?  The bottom dropped out on my milk supply last week.  I've always had supply issues, but this past week I had one day where I pumped less than an ounce in an entire 24 hour period.  Things hadn't been this bad since the baby was a couple weeks old.

My heart was broken and all I could think was "is this it?  is this the end?"  I had big dreams of EBF (exclusively breastfeeding) once the cutiebug's solids intake was enough to decrease his nursing needs.  I had assumed that if I had made it this far I'd be able to nurse him to the APA's one year recommendation, and maybe beyond, without much added difficulty.

So what had happened?  Well, I don't want to get into specifics, but let's just say it was a rough week for my family.  There was allot of traveling involved, some unhappiness, and a ton of stress.  Over time, as the baby started to nurse better and more often I was dropping pumping sessions left and right, plus I had stopped all my supplements except for the Domperidone.  On this trip I continued to not pump during the day, even though the baby wasn't nursing, and I was barely hanging on to my sanity so I didn't really realize what I was doing to us.  I was still getting about 6 ounces a day from my paltry pumping efforts so I figured everything was OK.  I figured it would pick back up.

Then we got home and the bug got sick!  Really sick.  He completely stopped nursing and has not latched AT ALL in 5 days, despite many efforts.  My first day at home I knew it was time to pull out all the stops, and I only got one ounce in the first 24 hours! 

Never fear!  The bottle is still half full!  


What did I do next?  I am going to tell you, step by step, so that if you ever find yourself in this situation you can pump half a bottle too!

1. Get help! I immediately, upon realizing the full extent of my dilemma, lit the boob signal (think bat-signal, lol) alerting all the many helpful and loving moms in my support network.  This is the first and most important tool in anyone's arsenal!  If you do not have a receptive and encouraging group of milk mommas to respond to your boob signal, you absolutely MUST find some STAT!  For real, if you need some send me a message and I can hook you up.  There are some great mommas who know how to lend a helping hand online!
2. Make a decision! I made a decision - I will make more milk.  I will not just let this be the end without a fight.  Now, please keep in mind that for some mothers this would have been a good place to end things.  I am all for the health of mommy and baby.  There are more important things in life than milk - like a mother who isn't locked up in an asylum. If you find yourself in this situation, please take the time to make the right choice for you and not just bow to pressure from anyone other than you and the baby.
3. Pump! Nurse! Pump! Set yourself up on a serious pumping/nursing regimen.  Try to find some in-home help (let Daddy get in on the baby action!) and focus on nothing but yourself and milk for your baby for an entire day.  For me this meant 24 hours of pumping every two hours.  The cutiebug still isn't nursing because he is sick.  SO I pumped every 2 hours for 24 hours, except for once I overslept.  Lots and lots of nursing could accomplish the same thing.
4. Power-Pump! I also made sure that at least four of those were power-pumps during the day whole I watched movies.  Even if you are able to nurse often a power pump can't hurt when your supply is dipping low.
5. Herb it up!  I maxed out on my domperidone doses (I had been sketchy about taking my dom while I was traveling) and did not skip a dose.  I also added back in the other galactagogues that I knew would work for me based on prior experience.  I unloaded the whole arsenal.  This is no time to hold back.  When you are at 10% of normal production lay the galactagogues on thick!
6. Eat Right! No, I don't just mean getting three squares, I mean making every bite count.  Every bite.  I made up a list of every lactogenic food I know of and I went to the store list in hand.  I bought every food they had that would potentially increase my supply and then I made food.  I made easy stuff combining lots of good ingredients - like soup, casseroles, and tea.  I did this in between pumping sessions while hubby knew that he was not to let anything disturb me.  I also got some help in this area from moms who saw the boob-signal and stopped by with their own lactation cookies, bars, and stews.  Thank you to my angel-friends!  When you are in your initial "get back the milk" phase don't let it cross your lips if it isn't going to help you make more milk!
7. Take care of YOU!  This is the most important part.  When I sent my plan out to my boobie-buddies I got allot of supportive feedback with one resounding post-script.  Everyone was worried about ME.  When was I going to sleep?  How would I stay sane?  I had to take time for me.  I had to limit myself to one day of psycho-pumping (every 2 hours for 24 hours), one more day of mega-pumping (the same plan with a nice break for sleep), and then back to my old plan of pumping only in place of a feed until I could get the cutiebug to latch again.  I also made a plan to go get my nails done.  I made sure I had no added chores... it could wait!  Or else hubby could do it!

By following my plan for three days I have gone from a one ounce day to a 4.5 ounce day, and it's not even over yet!  I have one, maybe two more pumps before I go to bed.

I don't know if I am going to get back to where I was before my big dip, but I am sure going to try.  I am  not going to give up until I am ready, the baby weans himself, or mother nature leaves me no choice.

For now it's onward and upward until April 6th - Good Friday, the beginning of Passover.  At that time I will reevaluate and see what comes next for me and the baby.  With a little luck and some major dedication this might be the start of 6 more months of nursing!

IGT - Insufficient Glandular Tissue

IGT is the kind of thing that can sneak up on a woman and steal her dreams away.  It's a sinister condition that many women have, and some don't even know about it.  No one really knows much about it, and it can effect women in different ways.  One primary implication of IGT is a medically valid low breastmilk supply.

While I myself have low supply due to a breast surgery, I have found a safe haven in the IGT community because our problems are so similar.  I am astounded when I find that so many medical professionals, even some lactation specialists, are clueless as to what it is, or how to move forward with a breastfeeding IGT mother.  Especially when you consider that plastic surgeons recognize the physical symptoms of the condition in their patients, and correct them through breast augmentation.  (The augmentation does not increase the chance of breast-feeding success, and may actually diminish your chances.)

If you have IGT here is the breastfeeding story in a nutshell: Your breastfeeding journey may be rocky.  Even if you've had other children in the past each individual pregnancy/infancy will bring with it the question "can I produce enough milk?"  The answer to your question is another question - how much is enough?

Like all nursing mommas, the IGT mom needs to define for herself what a successful nursing relationship is going to be.  For many this means "I will give my baby as much as I can, and I will rejoice in my ability to give it."  Most IGT moms find that for at least some portion of their baby's life they will have to supplement, especially for their first child.

Breastfeeding with IGT can be heartbreaking but it can also leave you feeling accomplished and strong.  If you choose to nurse your baby, and provide whatever you can, it is important to remember that every drop of breastmilk, even half a ml, is better than no breastmilk at all!

So what exactly is IGT?

Breastfeeding relies on the biology of the breast to produce, let down, and eject milk.  A woman with IGT has trouble with the first part, the production of milk.  The breast is contains glandular tissue that is responsible for milk production.  Reaching backward from the nipple are ducts, like tree trunks, that split into ductules, like tree branches, deep inside the breast.  The ductules end in clusters of alveoli, like leaves which produce the milk.  Clusters of alveoli are called lobules, which cluster to form lobes.  A "regular" breast contains up to 20ish lobes.

Insufficient glandular tissue is a condition where there are fewer than average, or less robust, lobes, lobules, alveoli, etc. This can lead to a reduced capacity for milk production and storage.

How does it happen?

Unfortunately  there is no reliable answer to this question.  Some people postulate that IGT is caused by hormonal imbalances, diseases like PCOS.  Other people think it could be related to environmental factors, like toxins and chemicals in our food and water.  Nobody really knows why this happens.

One thing that seems certain is that during puberty when the body begins to develop the dormant tissue of the breast, something did not happen as perfectly as we would wish.  During pregnancy hormones increase glandular tissue production (leading to the common increase in cup size during pregnancy), but this doesn't happen or is not as extreme in women with IGT.

Do I have IGT?

The website noteveryonecanbreastfeed.com has a great self-questionnaire to help you identify risk factors.  If you think you have IGT you can talk to your healthcare professional about getting an actual diagnosis. 

What can I do?

• If you think you have IGT you can talk to your healthcare provider about getting a diagnosis.  This is normally done by an ultrasound of the breast tissue.  Having a diagnosis may give you peace of mind, and also may help you find the resources and tools you need should you decide you want to nurse your babies.
• Get in touch with a CLC or IBCLC who can help you identify weak spots in your plan, develop strategies, optimize latch when the baby is born, etc.  Having a professional support person can make a HUGE difference.
• Keep calm :) stress can level anyone's milk supply, even someone with an abundance of it.  Keeping calm and recognizing the gift you are providing your baby on your own terms will help you and the baby to thrive in your breastfeeding relationship.
• Find some other moms to support you.  Bonus points if they are IGT moms!  You can even find groups online if you don't have luck in your local area.  If you need help finding some buddies, let me know and I can hook you up!
• Many women with IGT find hormone therapies before and during pregnancy (but not while nursing any earlier children) to be beneficial in building up glandular tissue thus improving milk production for subsequent children.
• Educate yourself about the available lactogenic foods, herbs, and other galactagogues that can help you increase your milk supply.  Depending on the severity of your situation and any history with past children you might want to have some on hand.
• Most women with IGT will need to supplement their children's breastmilk intake for at least some portion of the baby's life.  Preparing for this in advance can be really helpful.  There are many ways to supplement a baby (SNS, LactAid, Spoon, Cup, Syringe, Bottle) and many supplement options (various formulas, expressed milk, donated milk, etc.).  Putting some thought into how you will supplement if the need arises can take some of the panic out of your decision to nurse your child.
• Pay attention.  Since we know that IGT moms have low supply it is especially important to watch the little one for hunger cues and signs of good milk transfer (wet diapers, etc.) to insure he or she is getting the nutrition and hydration they need.
• Give yourself a huge hug and a pat on the back!

Domperidone - Condensed Info

Domperidone has been on my screen quite a bit in the past couple of weeks.  So far I've heard from a mom who needed to learn about Dom, a mom who was weaning off of Dom, a mom who is thinking about increasing Dom, and about six moms who are concerned because of the press Health Canada is getting for it's "warning."

I'm no health expert, but I do seem to be becoming something of an expert in the area of increasing and maintaining meager milk supplies.  So here is what I know for anyone who is curious...

What is it? If you want more information about the medical background of the drug (Motilium) you can find info from one of the leading Breastfeeding experts Dr. Newman on his site http://www.breastfeedinginc.ca/

I think (remember I am not an expert) Domperidone (marketed as Motilium) is an awesome resource for anyone who is truly battling a real milk supply issue.  This is not the drug of choice for a mom who gets a monthly dip due to a period - this is medicine for the mama who really needs to kick-start her supply.  
  
How much should I take? A really common concern of moms looking at domperidone is figuring out their dosage.  Looking at the link above for Dr. Newman you will see that he suggests starting out at 90mg a day (30 TID).  He also states that you can go as high as 40 mg four times a day (160mg total).

The general idea is to take three pills (that's 30mg) every 8 hours.  This is sort of the "regular dose" for moms who need the medicine to increase milk supply.  If this dose doesn't seem to be making a difference you can increase your dose to 4 pills three times a day, or three pills four times a day.  You can even go up to 4 pills four times a day!

If you are taking 4 pills four times a day, well, I haven't found any real "professional" advice on that.  Most of the ladies I know who are on the 160 regimen take their pills first thing in the morning, at lunch, at dinner, and just before bed.  A couple are really regimented and take them every six hours.  In general I see "the professionals" say that it isn't important to be really regimented about it.  Dr. Newman says "when it is convenient (there is no need to wake up to keep to an 8 hour schedule—it does not make a real difference."

When will I see a difference? Normally people start to see a little difference within a few days, but it takes two weeks to really get into your system and can take up to six weeks to see if it is really working for you.  Dr. Newman's site says "After starting domperidone, it may take three or four days before you notice any effect, though sometimes mothers notice an effect within 24 hours. It appears to take two to three weeks to get a maximum effect, but some mothers have noted positive effects only after 4 or more weeks. It is reasonable to give domperidone a trial of at least four, and better, six weeks before saying it doesn’t work."

How do I wean from Domperidone? When you are ready to stop your domperidone the general recommendation is to drop only one pill at a time.  So if you normally take 90mg a day, take 80 for a week, then 70 for a week, etc.  You can find out more from this article by Dr. Newman.

Is it really safe?  Domperidone is the safest prescription medicine that I've heard of in my journey - it is safer than Reglan according to Dr. Hale's "Medications and Mother's Milk."  Domperidone is an L1 and Reglan is an L2.  You can find out more about this here: http://www.kellymom.com/health/meds/prescript_galactagogue.html

Domperidone is also approved by the American Academy of Pediatrics.  Kellymom.com has information on this.

You may have heard about, or read, notices from the FDA and Health Canada regarding the safety of Domperidone.  Because I am not a professional I won't even try to address this myself except to say that I've done allot of research and met many mothers who use this medicine.  I personally find Dr. Newman's information to be thorough and sound so here is what he (as a professional) has to say about this issue.  To sum it all up for those in a rush - the studies were focused on people taking IV doses that are many many times higher than anything we would take for lactation.  The studies did not focus at all on lactation. 

Dr. Newman on the FDA warning.
 
Dr. Newman on the Health Canada warning:
The following excerpt is copied directly from Dr. Newman's facebook page.

Domperidone, again!

Based on a study that was published in Belgium which looked at over 1000 cases of sudden death and found that some of the people who died suddenly were taking domperidone, Health Canada has put out a warning about possible concerns about treating with domperidone. This is a bit of an overreaction on the part of Health Canada. Well, a big overreaction given the data.

Note that in the study, the youngest person who died was 55 and the average age of those who died was 75 years. What has this to do with breastfeeding mothers who are rarely older than 45 years and are usually in reasonably good health? Furthermore, this information came from a data base with no clinical information. It simply has information that so and so died suddenly and was taking such and such a drug. The thing is that domperidone in these patients was used for reflux and we know that heart disease is frequently misdiagnosed as reflux; severe pain at the top of the abdomen or lower part of the chest is typical of both reflux and cardiac pain.

Misdiagnosis is particularly possible in Europe where domperidone is
available in countries like the United Kingdom, Belgium and the Netherlands without a prescription and it is likely that many people are self-diagnosing and self-medicating.

So that's it and it does not mean that domperidone kills. I will continue to prescribe domperidone at our doses which are based on many years of clinical experience. I have treated many thousands of women with it with only minor side effects. I believe this article from Belgium proves nothing and does not require us to stop prescribing it.

It would be a pity that mothers and babies not benefit from domperidone when used in conjunction with our Protocol to manage breastmilk intake.

Furthermore he added on March 15th:

Below please find an analysis of the two studies that caused Health Canada to publish a warning about domperidone. Done by one of the paediatricians working in our clinic.

The recent Health Canada-endorsed warning about the use of domperidone was based on two studies1,2 published in 2010.

The following KEY points regarding the studies are important to highlight:

• The information in these studies was taken from databases (one in the Netherlands2 and one in Saskatchewan1) and did not demonstrate that domperidone caused any adverse health effects. To show a cause and effect, the studies would have to be, amongst other things, prospective, and these were not. There are many other limitations with these studies. For example, some key pieces of information are unavailable including smoking status, use of other non-prescription drugs, and more, all of which can be important factors1.

• The average age of the patients in the studies was 72.5 years in one2 and 79.4 years in the other1. Many of the patients in the studies had pre-existing health problems such as high blood pressure, coronary artery disease, and congestive heart failure. Thus the warnings were based on information gathered from an entirely different population than those who take Domperidone for breastfeeding purposes. Results in this age group cannot readily be applied to a younger, healthier population. In fact, in one of the studies1, the authors concluded that the risk of a cardiac problem related to taking domperidone in younger patients was much lower than in older patients. The risk quoted in younger patients was almost the same as that outcome occurring by chance alone. That study also specifies that the risk in females was significantly lower than in males. It is also important to highlight that the risk decreased the longer the patient had been on domperidone.

• The warning regarding use of Domperidone in higher doses was based on only one of the studies2; the other study1 did not include any information about dosing. In the study that included dosing information, out of the 1304 deaths that were studied, only 10 patients were taking domperidone at the time of death. Of those 10 taking domperidone, only FOUR patients were documented to be taking higher doses of domperidone (>30mg per day). Thus this Health Canada-endorsed dose-related warning came from dosing data compiled from FOUR patients total.

• Domperidone is generally used to treat gastro-intestinal problems such as acid reflux. Some of the symptoms of acid reflux (eg chest-pain) are similar to symptoms of heart disease. It is possible that some patients were taking Domperidone for what was thought to be a gastro-intestinal problem when, in fact, the symptoms may have been related to a heart problem. While the authors attempted to account for this possibility2, it is hard to tease out those taking domperidone for a gastro-intestinal symptom that was actually a heart condition.

• Furthermore, because domperidone is available over-the-counter in much of Europe specifically the Netherlands, it is possible that the number of people self-medicating with domperidone is higher than the rate actually quoted in the Dutch study (as the study only took into account prescriptions for Domperidone2 and not over-the-counter use). This important fact may have skewed the results.

• Finally, the authors of one of the studies2 suggested that “for clinicians, it is important to avoid prescribing Domperidone to patients with a high risk of sudden cardiac death”. They were not cautioning physicians not to prescribe higher doses, but simply to exercise caution in patients considered higher risk.

In summary, breastfeeding mothers using domperidone are generally younger, healthy females. They do not fall into the same demographics as the patients involved in the studies from which the warnings were generated. Furthermore, with caution about the use of higher doses of domperidone stemming from a study where so few patients were actually on those higher doses, the Health Canada-endorsed warning regarding the use of domperidone in higher doses seems to be an over-reaction. Finally, with the other drawbacks of these studies outlined above, there is no evidence that domperidone actually causes heart problems.

1 Johannes CB et al. Risk of serious ventricular arrhythmia and sudden cardiac death in a cohort of users of domperidone: a nested case-control study. Pharmacoepidemiol Drug Saf. 2010 Sep; 19(9): 881-888.
2 van Noord C et al. Domperidone and ventricular arrhythmia or sudden cardiac death: a population-based case-control study in the Netherlands. Drug Saf. 2010 Nov 1; 33(11): 1003-1014.

How do I get my hands on some? 
Please note that while the FDA has not approved this medication it is still LEGAL to purchase and use this medication in the US. If you google this you will find info, here's a quick link just to prove I'm not psychotic. 

Some countries require prescriptions and some do not.  You can find info on which countries allow the medicine OTC, or by Prescription under "clinical data" on wikipedia: http://en.wikipedia.org/wiki/Domperidone  Please remember that wikipedia is not controlled by any kind of medical professional and we should all take the info provided there with a few big grains of sea salt.

Perhaps the safest (and by far the most expensive!) way of getting domperidone is to get a prescription from a doctor or midwife and have it made for you at a compounding pharmacy.  For most mothers the compounding pharmacy thing is cost prohibitive - UNLESS!!! Some moms have found that even in the US their insurance has covered a compounded domperidone prescription!  How's that for awesome-sauce?

A second route (the one I followed) was to get someone to write me a prescription just so I felt like I'd covered my tushie and then buy the medicine online.  You can buy from pharmacies in Canada that require your prescription to be sent to them.  This medicine is not quite as costly as the compound and is shipped to you pretty quickly.  The experience of my friends has been that there are cheaper options, but I don't know anyone who has had an extended wait for their medicine to arrive.

Another online source (and by far the most popular among the people I have known to take this medication) is inhousepharmacy.biz - this pharmacy provides branded Motilium in the foil bubble packs that include all the appropriate inserts from the manufacturer.  They are the least expensive source of reliable motilium that I have found.  They are based in New Zealand and will not require you to forward your prescription (but I got one anyway).  The downside of this online store is that it takes 2 to 4 weeks for your medicine to arrive.  On rare occasions it gets held up in customs but will always be sent on to you because it IS legal.  The customs issue can add a couple of weeks to the process (that's why it's 2 to 4 weeks instead of just two weeks).

I can't think of anything to add to this, except that I hope everyone does their best research, talks to professionals who are expert in breastfeeding, and makes a choice that is right for them and their babies!  I hope that everyone remembers to take it slowly by taking the "normal dose" and then increasing appropriately until they get to their best dose... and I really hope that people who take this medicine are honest and open with their healthcare providers because even though this medicine is L1 (safest) it is still a medicine and needs to be treated as such!Best wishes to everyone!

I also encourage you to talk to nurse-midwives or lactation consultants who may have more information about this than medical doctors who are inundated with other medical subjects and may not have had the time to look into this on their own - I know I had to educate my OB on the subject!