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Let's call this page "A Work in Progress." So, you have RA and you're thinking you want a family or maybe you're just thinking you want to keep that possibility open for the future. What should you do? Well, here's the deal. I have talked to many women, some of whom get adequate care, some get terrible care, very rare do I hear from somebody who gets great care when it comes to having RA and having children. Part of me wants to stand up and scream at doctors for not taking care of us, but then part of me thinks that they just don't get what we go through. So, what I would like to do is put together a "To Do" list for RA women thinking about having babies. Keep in mind, I'm not a doctor, but I think this would be a superb thing to take to your doctor to spark that discussion about your care when it comes to conception, pregnancy, birth, breastfeeding, and postpartum flares. Below, I will chat a bit about my experiences and those of others I have heard. At the bottom, I will do a simplified list if you wish to copy that small part and print for a doctor visit. If you have any other thoughts or additions to this list, I would LOVE to hear it. Please e-mail me by visitng the "Contact Us" page or visit the forums under 2007 Discussions.
Thinking About Conceiving in the Future:
From my own experience, my favorite rheumy who I had from day 1 closed her practice when my husband and I were ready to start trying to conceive. This rheumy was ok with my staying on Enbrel through my pregnancy, but my new rheumy was not. This created quite a difficult situation given that it took me 3 months to get an appointment with this new rheumy (or pretty much any new rheumy in my area). Rule number one ought to be that you are ALWAYS having discussions with your rheumy about your meds and your future ability to have children. Ask your rheumy for his/her thoughts on your care during pregnancy. Does your rheumy even support you having a baby (many do NOT). Find this out way ahead of time. If you don't agree with your doc, it's time to part ways and find a doc who is on the same page as you. Also ask if your body is able to handle a vaginal delivery. How does your rheumy work with your ob? Ask for stories about what other patients have done when having children.
Conceiving
Ok, ladies! Are you off all the meds you need to be off for the recommended periods of time? Does your rheumy say "go for it?" Are you and your rheumy on the same page? If not, this could make life very difficult once you conceive. Make sure you have support! Could you call him/her if you start flaring? If you have a flare, how soon could the doctor get you in for an appoinement (an EXTREMELY important question to ask). What will you do if you start to flare? Have you looked into entering a drug study if you are staying on meds? What can you take that will be safe for a baby if you are having problems, if anything? If you are going the no med route, get a handicap sticker for parking if you need it. Depending on what you and your doctor decide, this might be a very difficult time for you. If you have gone off all meds to conceive, be prepared for what may be ahead. Prepare your family for what to expect and let them know that you will be needing a lot of help.
Pregnancy
Many women have a lessening of symptoms during this time. Some do not (I got mildly worse during pregnancy). If you are feeling up to it, now is the time to get prepared for baby. Most women flare after baby is born, so NOW is the time to put together the crib, find the right height for the changer, get a comfy nursing chair. Also during this time, you need to prepare for the likely postpartum flare. We have a mom on our site whose rheumy said to call if she started to flare after the birth of her baby. She called and was told she'd have to wait nearly 3 months to get an appointment. In the meantime, she dropped her baby (who was luckily ok). This is NOT ok, ladies! Given that most women flare 4-6 weeks after the birth of their little one, tell your rheumy you'd like to set up an appointment at 4, 8, and 12 weeks after the baby's due date. If you are doing ok, you can always cancel the appointments. This goes the same for women who stayed on their meds. I stayed on Enbrel and still flared.
Start looking for a carseat. Carseat buttons are the WORST thing ever when you are flaring. I even saw Humira is using them in their ads now. I don't know of any great carseat buttons when babies are really little, but do investigate. Will you need a stroller to take baby out if you flare? What will be EASIEST on YOU?
Make an appointment with your baby's future pediatrician. Let him/her know about any meds you are taking while pregnant or will be taking when nursing, should you choose to do so.
You also need to make those important nursing decisions. Will you go right back on your meds and still nurse, stay off meds and nurse, nurse for a long time or just a little while, go back on meds and not nurse, or just say, "Horray for formula!" There is a small amount of literature out there that says breastfeeding may contribute to that flare after birth. More research is still needed. Some moms I have talked to have stayed off meds and nursed for a year, but have been unable to care for their babies. Remember, to have a healthy baby, you need a healthy mommy! Don't forget to take care of yourself!
Prepare for the likelihood of a flare. Do you have family who can come and help? Can you afford to get help from a nanny? Research your back-up plans.
More to come.... it's night night time!
List to Print:
Trying to Conceive in the Future:
- Always talk to your doctor about all your meds and their impact on your baby future.
- Ask (seriously) if your rheumy can fully support your decision to have a baby.
- If not, get a new supportive rheumy.
- Ask rheumy about his/her care of you during pregnancy. What experiences does he/she have with RA and pregnancy. Make sure this matches what you need.
- Can your body handle vaginal delivery?
TTC and Pregnancy:
- Are you off all meds you need to be off for recommended period of time?
- Does your doc say, "Go!"
- You and rheumy on same page with your care?
- Can you call rheumy if you start to flare?
- How soon could you get an appointment (very very important).
- What can you do safely for baby if you start to flare?
- Ask doc to make a list of dos and don'ts.
- Look into entering a drug study if you are staying on meds.
- If going off meds, get handicap sticker for car.
- Prepare family and friends for your journey. Get support!
Pregnancy:
- This is likely when you will feel best, so
- Put crib together.
- Get a changer at a good height.
- Get a comfy chair for feedings.
- Find the best carseat (think about that button!) and stroller you think you can manage when flaring.
- Go to a good baby store and ask to fit strollers and carseats in you car. Some strollers are too big for the trunk. (I did this at Baby Depot, and they even helped me).
- Make an appointment with baby's future pediatrician. Dicuss your meds for pregnancy and (if applicable) breastfeeding.
- Make those feeding decisions!
- Research your meds and the breastfeeding or formula feeding options.
- Prepare for a flare.
- Call in family and friends.
- Hire help.
- Have a back-up plan. Most women flare 4-6 weeks postpartum.
Printable Version, Click here: What to Expect Planning
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