Vaccines and Decisions

I have never been so torn on an issue, perhaps in my life, as I am on the subject of vaccines.  Right now, I have the luxury of indecision.  Because of one of my meds (the immune suppressant), my doctors have decided it's best for my son to be unvaccinated for the time being, and I have the medical seal of approval to postpone the decision of vaccination.  My son did get DTaP before I went on these meds, and technically he could have inactivated vaccines, but we're holding off until I'm 100% sure.  You can't "un-vaccinate"; once it's done, it's done.

For those who do not vaccinate, a medical exemption is the holy grail of paperwork.  For those who believe in the importance of complete vaccination, my situation is a terrifying limbo of irresponsibility.  I see both sides of the issue, and I'm stuck.

Most parenting issues have become clear to me with research.  Breastfeeding, circumcision, spanking, co-sleeping, babywearing.  They're pretty clear-cut, and most research sits on one side or the other.  Vaccinations... eek.  Not so clear.  I have done hundreds of hours of research on vaccines, and I'm still incredibly torn.

Borrowed from Peaceful Parenting, in case you want to say "I'm vaccinated and I'm fine"
Our children are being vaccinated against many more things than we were.

I have reached 2 conclusions, both of which are controversial.  Isn't this whole topic?

1 - Vaccines are not useless.  They do work.  Maybe not as well as advertised, but they have value.  The rabies vaccine prevents the spread of rabies among dogs.  The influenza vaccine does actually reduce the incidence of flu it purports to prevent.  Since the widespread vaccination of the American public, the diseases for which we vaccinate have decreased precipitously.  I am still immune to measles, mumps and rubella, 25 years after my last booster, diseases I did not have naturally.  Vaccines generally do protect against the diseases they claim to, a majority of the time.

2 - Vaccines are not 100% safe.  They have risk.  Vaccine-related injury is real, adverse reactions are real, and to the rare number who experience them, the injury is often worse than the disease the vaccine is intended to prevent.  It is possible that vaccines damage the overall health of a person's immune system.  Unvaccinated children are, overall, healthier than their vaccinated counterparts, experiencing less chronic and acute illness during childhood and early adulthood (these studies are imperfect in design but still compelling).  Parents who consciously choose not to vaccinate are not morons; they are generally better informed and educated about the issue than those who vaccinate. 

Ethically, I am opposed to the concept of forcing a child to endure pain and sickness, against their will, to prevent potential future harm.   The child is not in immediate medical need or danger, like a child who needs stitches. I am opposed to sacrificing one child for the benefit of many; the herd immunity argument doesn't sway me.  One child should not die so that millions can live; that argument holds no water to the mother of the dead child, nor should it.  I believe in the inherent ability of the natural immune system to handle routine illness, and I believe that a bored immune system is a dangerous thing to have, increasing risks of allergies and auto-immune responses. 

Logically, I am opposed to the reintroduction of measles and polio into the general population, and I do believe that vaccines have something to do with the decrease of diseases (but not all - Polio in particular has a really interesting link to pesticides).  I don't want to see a Rubella outbreak.  I have heard the cries of a baby with pertussis, and they are heartbreaking.  If my son were to experience harm as a result of a vaccine-preventable illness, or worse, were to pass that illness on to another child, I would be devastated.

Emotionally, vaccinating feels wrong - no mother "looks forward" to a visit for shots.  On every other parenting decision, I have trusted my "gut" or "mommy instinct" and it's always been right.  Here, in this one circumstance and no other, I am expected to restrain my baby, cause him pain and potentially cause him harm, to avoid the potential of harm.  This isn't about fighting a diaper change or being annoyed about being in a carseat; the pain is real, the immediate harm is real (even if it's only a mild fever and a sore leg).  If you physically restrain an adult against his will and stab him with a pen or a thumbtack, it is called assault.  I spent a lifetime terrified of doctors and needles.  Babies today are mandated to have triple the number of vaccines that I had; every child I know is petrified of going to the doctor; their parents have to lie to them and bribe them to get them in the door. 

Intellectually, I realize that people used to die of vaccine-preventable diseases in great number, and that my ancestors would likely think I'm crazy for even debating this topic.  Vaccines are considered among the world's greatest medical discoveries, one of the greatest discoveries of human history, by minds greater than mine.  My pediatrician is in favor of most (but not all) vaccines; I respect her opinion as a medical professional.  I respect her years of experience and expertise.  I also know that the entire American pediatric business model revolves around vaccines, and without a visit every 2-6 months for a shot, pediatricians offices would be a lot emptier than they are now.  Money talks.  Vaccines make literally billions of dollars a year for doctors and pharmaceutical companies, both via direct and indirect sources.

Polio kills.  Mumps is bad.  Tetanus, Diphtheria, Hepatitis, pertussis, HiB, meningitis, all of them - this is bad stuff, and I don't want my baby to get any of them, if I can help it.  Hell, my double exposure of chickenpox (at 13 and 32, thanks immune suppressants) was miserable enough that I'd happily have taken a shot in the arm instead of 6 cumulative weeks of misery!  Regardless, I am too informed to respond to the "less mercury than a can of tuna" line. 

I am asking for feedback tonight, on what ultimately made your decision, one way or the other.  I don't have to make a decision right now (in fact, I can't) but I could use some guidance. 

Why did you decide to vaccinate your child, or choose to skip or alter the standard schedule?

Avoid formula "like the plague"?

I don't know why I read everything that comes across my facebook feed, but I have a rather unquenchable thirst for knowledge....so I do.  Even stuff that I know is going to "get my goat", and boy did this one! 

100 Reasons to Avoid Formula like the Plague

First, it made me incredibly sad.  I had just finished giving David a bottle of formula; I don't have a donor right now for breast milk, and our family decided that we would only take breast milk donation from people we know well (which is 2 awesome ladies with small freezer stashes).  There is another local baby, newborn and sick, who needs the milk more than my healthy horse of a toddler. The last comment had me crying into my colt's feather-soft hair as he slept in my arms.

"When you don't breastfeed you increase many risks and the child will never know it's true potential."

I cursed my body.  I hated my body for its failure.  I cursed my own inability to stay healthy enough to continue breastfeeding my son.  I kissed his petal-soft skin and tears ran down my face as I considered the list and its comments.  What if it's true?  What if my baby boy will never reach his true potential because my body failed him?


Then, of course, my brain kicked in.


You see, what this list forgot (and the list is not necessarily accurate or 100% truthful, I'll address that later) is that a healthy mother, in both mind and body, trumps every single reason on that list.  I am not a formula pusher.  I am a lactivist, truly told.  I don't think breast is "best"; I think it's "normal."  That is a very, very important distinction.  If you can breastfeed, you should.   If you don't breastfeed because you want pretty boobs or you want to party or because it's simply "convenient", I don't have a lot of respect for your choice.  Sorry.  Doesn't mean I don't respect you, or that you're a bad mother, it means we disagree.


Cesarean section is not "normal".  Vaginal birth is.  Does that mean vaginal is best in every situation?  No.  Everything is relative.  Guggie Daly, bless her amazing and insightful heart, wrote a wonderful piece recently about the need to end the Breast is Best campaign.  I agree with her for all the reasons she mentioned, plus one.  


I didn't take the medicine I needed after my son was born because of lists like The Plague.  I almost DIED.  I needed 2 blood transfusions.  I almost had my large intestine cut out of my body.  My large intestine is still bleeding, a year later, because I actually did avoid formula like the plague.  Smart?  No!  Stupid!  A miserable, sick, barely human breastfeeding mother is not ideal.  Dead mommies don't make milk, duh. 

I am not the only one.  I know 3 other mothers who also avoided medicine that was incompatible with breastfeeding, and who suffered serious health consequences as a result.  One was suffering from PPD, and it got so bad that she attempted suicide and had to be committed.  The low-level antidepressants she was taking weren't working, and the next level meant she couldn't breastfeed.   She avoided formula "like the plague", and slit her wrists.   I'm not making this up.


See, the funny thing is, when you've just had a baby, you just might not think straight, and lists like this haunt you.  I didn't.  Others didn't. 

I am an active member of many online mommy communities.  Lately, I have seen a number of mothers with supply problems, who are trying everything they can to raise their supplies, discuss giving their young babies cow's milk or soy milk, believing that it's healthier than formula.  There is a label now on the soy milk we purchased at Whole Foods - "not to be used as infant formula."  Why, do you think, does it need to be there?  It's not there for the mother who doesn't care what goes into her baby.  It's there so people know that other milks are NOT a viable alternative to breast milk or formula.   

Formula, while deeply flawed, inferior and imperfect, is better than giving a 3 month old baby cow's milk, which is made for baby cows, not baby humans.  Soy milk in particular is exceptionally dangerous for infants, lacking vital nutrients which are necessary to healthy development..


Don't avoid formula like the plague.  Don't avoid it like it's poison.   It is neither plague nor poison.  Avoid it if you have a breast milk alternative, be it pumped or from the breast.  Avoid it as a sub-normal, vastly inferior alternative and don't kid yourself that it's "just as good" as breast milk, because it's not.  It's not close to breast milk, no matter what the formula ads tell you.  But don't avoid it to the detriment of your own health, mental or physical.  Babies need a healthy mother more than than they need her breasts. 

[Related: this whole conversation goes away (or mostly goes away) if mothers who can breastfeed do, and if mothers who can donate do, and if mothers who can't have access to that donated breast milk.  Please support breast milk donation!  Check out Human Milk for Human Babies on Facebook!]

Moms with IBD: All About The Meds

This isn't as universal a post as my other stuff, but hopefully it will be helpful to those who find it relevant.  This is directed at mothers or would-be mothers with Ulcerative Colitis or Crohn's Disease.


When I was pregnant with my son, I didn't realize how much my (then latent) Ulcerative Colitis would affect my pregnancy, delivery, and recovery.  The information online is patchy at best, and every doctor seems to have differing opinions on how to treat UC or Crohn's in pregnant and breastfeeding patients, or in those who are trying to conceive.  It was difficult to put everything together, and there is a lot of bad information out there.  I was going to put this all in one post, but it's too much.  This post is about medication.  See Part 2 about additional concerns during pregnancy and breastfeeding.

I'm not a doctor.  This is the internet.  Don't be stupid.  Talk to your doctor about the best courses of treatment for your disease, and work with your doctor to assess the risks and benefits of any treatment.

Q: "Should I take medicine for my IBD while pregnant/breastfeeding?"


A: Work with your doctor(s).  Flaring while pregnant or lactating isn't good.  If you're pregnant, being malnourished can harm your baby.  If you're lactating, it can severely impact your supply and your ability to be a good mommy.  Don't neglect your own health because you're afraid of the medication.  Try non-medical stuff, but don't end up in the hospital (like I did) because you fear the necessary medications.

ALL ABOUT THE MEDS
I'll start here because it tends to be the thing weighing most on mommy minds.  Let's start with the safest ones, then go up from there.

Safe(r) for Pregnant and Lactating Women

Probiotics 
If you're not already taking these, I highly suggest that you start.  There have been numerous studies that show a strong positive relationship between IBD remission and the use of probiotics.  You can start simple - Kefir (sold at your local grocery store) has high levels of "good" bacteria.  Many folks make their own.

For supplements, the "top dog" is VSL#3, which is available online.  Alternatively, you can try Acidopholus, available at your local pharmacy or health food store.  Get the highest count you can, and keep the pills refrigerated for longest life and potency.  There are no known negative side effects to probiotics; even if they don't work for you, there is no risk in trying.

Vitamin D
I have done a good amount of research, and found that vitamin D deficiency can also contribute to possible flares.  I take 1000-2000IU of additional vitamin D in the summer and 3000-4000IU in the winter.  If you spend a lot of time in the sun, or eat a good amount of foods containing soluble vitamin D, you may need less.

Fish Oil/Omega3
Be careful to look for oils that are mercury-free.  Omega-3 fatty acids can really help your digestive system stay in balance.   If you're not flaring, you can get this from fish and some meats, but if you're flaring or pregnant some of these may be off limits.  Fish Oils also provide DHA and EPA, which reduce inflammation and are also good for the baby's development.

Folic Acid
You may not be able to take a "regular" prenatal vitamin (see below), but folic acid is of vital importance to your baby's health.  Ideally, you should start taking it before you are pregnant.

Vitamin C
Always a good choice.  Again, there have been studies that suggest improvement in IBD with increased vitamin C, and it's also good for the baby (some studies have even shown a link between increased vitamin C and lower SIDS risks).  It supports natural tissue growth and healing - you need healthy tissue and healing, right?

Potassium
If you get cramps (muscle, stomach, whatever), potassium can really help.  Flaring IBD can inhibit your body's natural processing of potassium, so you should pay special attention to this if you have diarrhea or vomiting as a regular symptom.  You can either take a supplement (I did), drink potassium-rich drinks (I kept a bottle of Gatorade in the bathroom; every time I ended up in there, I'd drink it), or eat potassium-rich foods like bananas, avocados, and potatoes.

Prenatal Vitamins - proceed with caution.
Many women with IBD are sensitive to the increased Iron in prenatal vitamins.   You may want to consider an iron-free multivitamin or a combination of other vitamins rather than standard prenatals.  There's a lot of (usually good) stuff packed into a prenatal.  I personally found it better to take everything seperately than in one package.  Less convenient, certainly, but easier on my system.  I find that I am very sensitive to all of the metals (zinc, copper, sometimes magnesium).

Dietary Stuff
This could be really long, but I'll keep it short.  Most doctors say diet doesn't have much to do with IBD.  Pretty much every patient I know wildly disagrees with their doctor on this matter.  Frankly, I think it's ridiculous to ignore diet as a part of treatment!  Personally, I'm very sensitive to sugar and white carbs, popcorn, nuts, and any oil but olive oil or butter.  Other people have other things.  One neat trick - right before you eat something, take your pulse.  20 minutes after eating (and relaxing), take your pulse again.  If it's much higher, you may be sensitive to that food.  Also notice if you feel flushed or anxious; these can also point to sensitivity.  Eliminate or limit the "bad" foods and you'll feel better.

PRESCRIPTION MEDS - LOW(ER) RISK
Many medications for UC and Crohn's are relatively safe during pregnancy (Category B-C).  

Lower risk doesn't mean no risk. But, flaring during pregnancy is certainly something you want to avoid.  You need to work with your doctor to determine what level of risk is acceptable to keep you healthy without causing risk to your baby.  Healthy mommies make healthy babies. 


Mesalamine - Pregnancy Category B
Rowasa, Asacol, Lialda, Pentasa, Apriso, etc.
If you have UC and it affects only your lower colon, the least dangerous (and often most effective) of these are suppositories and enemas.  Ick, yeah, but because they are applied directly to the site of inflammation, very little of the drug enters your bloodstream.   Lialda has the highest dosage of mesalamine per pill, at 1.2g per tablet.

Mesalamine is "bowel-specific", and even taken orally, only a small amount enters your bloodstream.  It does cross the placenta, but studies have not proven any evidence of harm to the baby (note: evidence of harm does NOT mean evidence of NO harm). There have been a few studies that showed a slight risk of cleft palates, but they were not statistically significant.

Mesalamine does pass into breast milk; there is potential that it may cause loose stools in your breastfed infant if they are sensitive to the drug, but most babies do not have a problem with this.   

If you are on Mesalamine as a maintenance drug, your doctor will likely suggest that you stay on it during your pregnancy and while breastfeeding.

Sulfasalazine (Azulfedine)- Pregnancy Category B
Similar to Mesalamine, this is considered another "ASA" med and has similar risks and benefits.  It is often used if you (or your baby) are sensitive to mesalamine.



PRESCRIPTION MEDS - MEDIUM RISK

Prednisone - Pregnancy Category B/C
This is a love it, hate it drug.  The side effects of prednisone are long, very real, and very serious - to you.  Being on prednisone sucks.  Flaring can suck more.  Long-term prednisone use causes adrenal dependency (it's hard to get off of) and even short-term, it causes insomnia, irritability, swelling, weight gain, headaches, and a slew of other annoying, destructive, and frustrating effects.  

That being said, it is probably the first thing your doctor will prescribe if you're suffering from an acute flare (bleeding a lot, really sick).  It works.  I sincerely hope you don't need this drug.  If you do, try to get off it as quickly, safely, and carefully as you can.  Prednisone should only be used in pregnancy if it is necessary, and if there is no safer alternative.  Flaring is not good for you, or your baby, either.  You need to carefully weigh the risks and benefits with your doctor before deciding if it is right for you.  The more you have to take, and the longer you take it, the greater the risks.  A 5mg dose is not the same as a 60mg dose.  Your doctor should prescribe the lowest dose that will control your flare.

There is an increased risk of cleft palates in babies whose moms took prednisone during the first trimester.  During the second and third trimester, there is an increased risk of low birth weight, and taking it in the third trimester has been linked to increased risk of preterm labor. Flaring IBD in the second and third trimester can also cause low birth weight and preterm labor - studies were not always able to determine if the cause was prednisone or IBD.

Prednisone can increase your risk of developing Gestational Diabetes.  If you are undergoing long-term prednisone treatment, your doctor or midwife will probably have you do the glucose challenge testing several times during your pregnancy.  Prednisone also decreases your ability to fight infection.

It is extraordinarily dangerous to stop prednisone abruptly.  If you are on it and want off, you need to work with your doctor to taper carefully.  Just stopping prednisone can cause adrenal failure and even death.

Prednisone has not actually been assigned a pregnancy category by the FDA.  Some brand names are B, others are C.

Other Corticosteroids (endocort, prednisolone, cortisone etc) all have similar side effects and risks to Prednisone, but they don't always work as well.  Some can be prescribed in enema form, which carries the lowest risk but also the lowest reward.

PRESCRIPTION MEDS: UNKNOWN RISK



Anti TNF Inhibitors: Remicade, Humira, Cimzia, Tysabri (aka Biologics)
These are scary drugs, big guns.  If you are on them, or your doctor suggests going on them, you need to do your research.  I am on Remicade, and it's right for me right now - but I'd be lying if I didn't say that it scares me to be on them.  Nothing else works for me; it's either Remicade or remove my colon.  Some people have chosen surgery over them.  With Crohn's, it may be biologics or the hospital.

Anti-TNF inhibitors (all varieties) suppress your immune system.  They all cross the placenta (when you're on them, so is your baby).  There have been very few studies on how they affect babies.  You will need to discuss this in depth with your doctor, ideally prior to becoming pregnant.  We're delaying our try for the next baby for a few years, until I can get off Remicade, or until better studies are available.

There may be increased risk of birth defects, an increased risk of miscarriage (maybe because IBD affects your body, who knows), but ultimately, not enough studies have been done to determine if they are safe or not.  I know a few people who have been on these during pregnancy and it worked out very well for them.  Here are some things to check out:

Remicade: http://www.otispregnancy.org/files/infliximab.pdf
Humira: http://www.otispregnancy.org/files/adalimumab.pdf

On the plus side, both Humira and Remicade seem to be safe for breastfeeding.  The molecules are huge and do not appear to transfer into breast milk.

EDIT: New research is ongoing, and it appears that Remicade is relatively safe during pregnancy.   I am trying to get copies of these studies, but I am told that the evidence is pretty clear, and that Remicade is being downgraded to category B.  The risks in smaller studies appear to be lower than the risks of corticosteriod treatment (aka prednisone).  It is important to note that no long-term studies have been done;  of Remicade has been linked to higher risks of certain cancers, and it is unknown if these long-term risks also pass to babies.

PRESCRIPTION MEDS: VERY HIGH RISK



Naltrexone - Category C/D (depends on brand).  Known to cause birth defects, smaller risk than the meds below.  May cause PPD and may disturb bonding with your baby.  Does pass into breast milk and may cause developmental delays, however, it may be possible to breastfeed on this drug.  More research needs to be done.  If Naltrexone is on your table of options, get to know Dr. Google.

Mercaptopurine (6MP) - Category D: It says right on the label that 6MP shouldn't be handled by women who might possibly be pregnant.  There may be extreme circumstances that warrant its use, but I would not personally take it while pregnant or breastfeeding in any circumstance.  It causes known fetal harm, including increased risk of miscarriage, birth defects and still birth.  It is also NOT safe for breastfeeding.  You will have to choose between breastfeeding and 6mp - I had to give up breastfeeding to stay healthy.

Azathioprene - Category D: Again, not safe for pregnancy or breastfeeding.  Causes known deformities and increases risk of fetal death.  Do not breastfeed if you are on this drug.

Methotrexate - Category X: REALLY bad.  MTX is used to treat ectopic pregnancy and causes early abortions.  This is the "abortion pill" used in clinics.  Do not take methotrexate while pregnant or breastfeeding under any circumstances.   If your doctor suggests it, find another doctor immediately.

Thalidomide - Category X.  Known to cause extreme birth defects.  Not safe for breastfeeding or pregnancy.  Also should not be used in the weeks prior to pregnancy, since it has a long life inside your body.  If your doc wants you on this while pregnant, seriously question their medical license.


OTHER MEDICATIONS

Metronidazole (Flagyl) - Category B, BUT.... the use of this drug in pregnancy is very controversial.  The FDA has given it category B, which is a "safe-ish"category.  There is evidence of toxicity in animals, but not in people. It definitely causes problems for baby mice, rabbits and rats, including cancer.  It has not been shown to do harm to humans, but there is real cause for concern, and a campaign to change the pregnancy category by some doctors and patients.  Breastfeeding is also not recommended on this drug - "pump and dump" for 24 hours after the last dose.

Ciproflaxin (Cipro) - Category C.  Oddly enough, the research on Cipro shows less evidence of harm than Flagyl, but it's got a higher catogory.  Who knows... anyway, breastfeeding is safe on Cipro.  There is a slightly higher risk of joint problems in babies whose moms took Cipro.

Sedation (for colonoscopies etc): Every doctor seems to use different drugs for sedation during procedures.  All of them have some risk for pregnant women.  Lactating women should pump and dump for 24 hours following sedation.   If you're going to undergo endoscopy or colonoscopy and want to be sedated (I'll write about that tomorrow), this is a good site to check out:
http://www.sedationfacts.org/sedation-complications/sedation-pregnancy

Pain Meds
Technically, the only "safe" pain medication during pregnancy and breastfeeding is tylenol.  Vicodin (hydrocodone) is sometimes prescribed if your pain gets out of control, but there are very real risks, including dependency and difficulty breathing in newborns, if taken close to delivery or for long periods of time. Other pain medications should be avoided.   When my pain got really hard to handle, my doctor suggested that I take Tylenol PM - the PM is Benadryl.  Really, look it up.  Sleeping through pain is better than being awake for it, if you're the sort of person that gets sleepy on Benadryl. 



Phew!  I think I covered most of the meds.  Feel free to comment or add your information!  I will happily edit any misinformation (again, NOT a doctor) and add anything you believe is relevant.
 CLICK HERE FOR PART 2