Saturday, June 25, 2011

Breastfeeding and FPIES

I know I have shared my experience about breastfeeding a child with FPIES in past posts but I wanted to take a moment to dedicate a full post on the subject.  I will preface this post with a few comments.  First of all, I believe it is every mom's personal decision whether or not to breastfeed.  There are also times when it is not a mom's decision at all.  Sometimes milk supply is an issue.  I firmly believe each mom should do what works best for the mommy and baby relationship.  As a mom of four, I tried to breastfeed each child.  I was never successful at breastfeeding the first two for any real length of time due to lack of breastfeeding support and excruciating pain even though the baby was latching on properly.  With my third child, I breastfed her until she was two.  Now, with my fourth child, who also happens to have FPIES, we are breastfeeding at almost two years of age out of necessity.  Yes, it is challenging, frustrating, and tiring at times but it is also the best choice I could have made for Brendan.

Breastfeeding is the reason Brendan stayed on the growth charts.  Breastfeeding is also the reason Brendan continues to thrive regardless of the number of food reactions and setbacks.  We tried to introduce solid food at six months of age and after some very scary food reactions, we ceased the introduction of solids and went right back to exclusive breastfeeding until twelve months of age.  It was a difficult decision and many people did not understand our reasoning.  At times, I doubted myself as well.  Looking back now, it was the best thing we could have done for Brendan.  It gave his body a chance to have gut rest and heal.  Oftentimes, it takes the first full year or two before a child's gut becomes fully mature.  We saw no point in trialing food when his body was telling us he could not handle it.  At twelve months, we started introducing food again with the same result...more reactions.  We proceeded with caution and only introduced one new food per month since Brendan was proving to be a very delayed reactor.  There were times when we were being questioned as to why we were holding back so much.  You will never know until you start trying.  It is trial and error after all right?  Well, no, not with my kid.  Yes, I was and still am very afraid of food trials.  But, that is not why I go so slowly with trials.  I have learned to let my gut instinct and Brendan's body/behavior signals be my guide.  Those are the only times we have been successful with a food trial.  So, we have been successful three times!  For us, that is huge.  We'll take what we can get.  I'll post more about our experience with behavioral signs and oral aversion later.

Back to the breastfeeding...I was told many times by doctors that I should stop breastfeeding and switch to elemental formula.  Why?  Well, Brendan had severe anemia and they thought he was not getting enough iron from my breast milk.  "You know, breast milk has very little iron for a baby", I was told.  Yes, but did you know that small amount of iron is more bioavailable than anything you can get from cow's milk or formula?  Pasteurization of cow's milk not only destroys the bad germs but it also destroys the good bacteria and affects the vitamin content of milk.  After a lot of research, I have learned that there are safe ways to drink raw milk from reputable sources.  That is another debate entirely...one I will steer clear of.  The story is the same with formula...it cannot match all the beneficial probiotics that are individually tailored to each baby's digestive system.  There are specific strains that are found in a baby's digestive tract but those strains vary depending on method of delivery at birth and several other factors.  I mention this because I believe this is a big reason why breastfeeding helps Brendan heal after a food reaction.  He is getting the natural medicine he needs to promote gut healing.  It is not our miracle cure but I have noticed it helps soothe him and his tummy.

I was also asked to stop nursing because Brendan was reacting to certain things in my breast milk.  An elimination diet of sorts came in handy during those times.  Once we were able to identify the culprit food, I could remove it from my diet.  Sounds easy enough, but it was not an easy process.  Ultimately, I am thankful my stubbornness and nonconformist nature finally worked in my favor.  If anyone tells me I can't do something, boy, will I try to prove them wrong...especially if it involves my children!  I suppose my message about breastfeeding and FPIES is simple.  If you have the support and the ability to continue breastfeeding during the FPIES journey, try to keep it up!  It has made a difference for us.  It is challenging as Brendan approaches 2 because not everyone agrees with breastfeeding a toddler.  I also struggle with milk supply and still feel like Brendan and I never got past the newborn stage as far as day and night feedings.  It is worth it though.   

Monday, June 20, 2011

We're Back!

We visited family in Texas and Oklahoma for a few weeks and flew back to Seattle late last week.  It was a whirlwind of a visit...wish we could have stayed longer.  I loved watching the kids soak up the sun and play with their cousins.  Brendan loved swimming and getting a natural dose of vitamin D.  Good thing because his levels got down to a 7 before we left Seattle!  I have to admit, Texas is a lot different than Seattle.  Each has it's own charm...but I'm a Southern girl at heart.  There is something to be said for drinking a glass of iced tea while sitting outside on a hot summer day.  I had some time to reflect during our visit and I definitely had an appreciation for the simple things.  Justin and I happened to be in his neck of the woods during his high school reunion.  It was a fun night spent with his brother and sister-in-law.  I just remember feeling care free (because Brendan was trialing and seemed to be doing well on almond milk) and I had a chance to dance in the evening rain on a hot summer night.  I haven't done that in years.  I also had a chance to see all of my nieces and nephews.  They have all grown so much and each have their own special talents!  My youngest (and newest nephew at four months of age) has his own special talent of just looking adorable.  Lastly, it was great to see my parents and my siblings.  I needed that!

Now that we are home, it's time to go back to the grind of FPIES.  As much as I'd like to sit around and romanticize the idea of being back home in the South, my focus needs to be on our life here in Seattle.  And, for my Seattle friends, don't take offense, we like it here too.  It is nice to come home to cool temperatures (although I still have issue with wearing long sleeves and pants in mid June)!  Thankfully, we are trialing almond milk with success!!!  I don't want to jinx Brendan, but he has been going strong with almond milk for almost two weeks now.  We have reached a huge milestone in getting Brendan to consume and tolerate a liquid other than breast milk!  I'll continue to breastfeed because we don't know what the future holds, but we are getting closer to some independence for Brendan.  It is hard to trust when all you have known is nursing, but we'll get there.  I'm laughing right now because I'm thinking of what our family doctor said today when I saw him.  He asked how Brendan was doing and I mentioned that he is still primarily nursing.  He said, "Well, that's okay.  It will only cause a problem when he starts dating!".  Most patients would be offended, but I love him!  It's those little things that get me through the day.

Speaking of doctors, while in Texas, we met with a wonderful food allergy doctor at Children's Medical Center in Dallas.  He and his staff have been nothing but supportive.  I would recommend Dr. Drew Bird to anyone living in the Dallas/Fort Worth area.  He was definitely worth the flight from Seattle to Dallas.  He doesn't promise to cure your child but he listened to me and I did not have to spend the majority of the visit convincing him that it is possible to react to Elecare etc.  He is the first doctor who had a genuine concern for Brendan and his quality of life.  He was very open minded and understood the importance of awareness and education in regards to FPIES.  He had some great ideas about baked foods for FPIES children...funny, because a fellow FPIES mom posted a link about baked milk for milk allergies right around the same time.  Dr. Bird's nutritionist is following us closely as we continue with Brendan's almond milk trial.  The next step is a trial of steamed carrots.  We hope to start the carrot trial in the next few days.  I have never had anyone stay in touch with us as much as Dr. Bird's office has.  I look forward to working with him more in the future. 

So, yes, we are back...back to FPIES, back to the uncertainty, back to reality.  I am torn at this point.  I have so many ideas of how to move forward for Brendan and my family but it all takes time.  FPIES and food trials are the most painstaking process I have encountered thus far in my parenting career.  I can't say it enough...I appreciate everyone who follows my blog and our journey with FPIES.  I realize it is a difficult illness to understand.  Some days I don't understand why Brendan has to go through what he does.  What I do know is that I will make it okay for him and my family in whatever way necessary.  I can't say it enough.  God chooses to bless us with trials and tribulations in life and it is up to us to show up in the best way possible.  At the end of the day, I hope this blog helps other families dealing with FPIES and also helps friends and family of those dealing with FPIES.  The most important thing for an FPIES family is acceptance, unconditional love, and support during a very difficult and isolating time.