Wednesday, July 18, 2012

Paleo Diet

I have read so much over the last few years about various diets...GAPS, specific carb, the list goes on and on.  I have also since learned that I "probably" have adult FPIES.  I've suffered from severe GI problems and food aversions for years.  There have been times when I have been on the verge of vomiting while breaking out in a cold sweat after eating certain foods as an adult.  On so many nights I would (and still do) lie in bed, afraid to roll over, much less move a muscle for fear of throwing up after eating certain foods.  I guess you can call it an “ah ha” moment…the moment you realize FPIES runs in the family.

It also appeared as reflux, colic and formula intolerance in my oldest child.  He was fine while I breastfed and the moment we stopped, the GI problems started.  He ended up on a hypoallergenic formula and was a chronic spitter/colicky baby until one year of age.  Brendan’s older brother had a mild form of FPIES. ..to milk and soy only.  He outgrew it after the first year and was a happy baby after.
Let’s now fast forward to four kids, many doctor visits and countless hours of research later.  Brendan and I were unknowingly following a Paleo diet.  Our diet consists of meats (baked, grilled or sautéed in olive oil), lower carb veggies, fruits such as berries, almonds, coconut and eggs.  Funny enough, the higher carb veggies such as sweet potato, are listed as common FPIES triggers.  We avoid all grains and rice and personally, I have never felt better.  My GI symptoms (which previously prevented me from functioning some days) have subsided.  I have eliminated all gluten, rice and processed foods.  Brendan also seems to do very well on this type of diet.  That is, of course, until we attempt to retrial things like rice.  Is there a correlation between a Paleo diet and FPIES triggers?  I don’t know, probably not but for us, it seems to work.

Sometimes I think about the advice I will pass on to my children in regards to infant care and diet.  What will that advice be?  Do not introduce rice or oat cereal as a “first” food.  Start with a meat or broth.  Don’t trial a new food for just a few days…do it for a few weeks.  Stay away from the all too convenient Gerber baby food products.  Make your own baby food with single ingredients and last but most certainly not least, breastfeed your child.  There are so many gut healing properties and natural probiotics in breast milk, how can you go wrong? 

Tuesday, July 3, 2012

Where Do We Go From Here?

Believe it or not, I can actually answer that question with clarity I have never had before.  First of all, I filed a complaint with the hospital who did not provide medical treatment for Brendan during his reaction.  Where will that get me?  I don't know, but someone needs to answer for that.  The last few years we have put up with so much in regards to lack of response and follow through from certain medical facilities and care providers.  In the past, I was too tired and overwhelmed to push back.  Today, I am still tired but not willing to give in.  I can't because Brendan deserves more.  The number of infants diagnosed with FPIES is growing.  Don't those children deserve the best in medical care as well? 

My mind has been swimming the last few days.  I have been contemplating next steps, who to contact, and how to best help Brendan.  I contacted Dr. Drew Bird in Dallas. Although he only saw Brendan once last summer, he and his dietician have done everything they can from afar to consult on Brendan's case.  It has been several months since we spoke, but Dr. Bird called me after hearing about Brendan's latest reaction.  He displayed a genuine interest and consulted with me about a game plan.  It is not the plan any of us had hoped for but the validation and support Dr. Bird offered was priceless.  I only wish we lived close enough to see Dr. Bird at the Food Allergy Center.  Nonetheless, he is willing to consult with us and his dietician is equally amazing.  If you live in Texas, I would strongly encourage you to take your FPIES child to see him.  There is not a current cure for FPIES, but he will listen, offer genuine support and help formulate a treatment plan specific to your child's needs.  As far as Brendan's plan, he has not outgrown FPIES.  FPIES to rice is one of the tougher ones to shake and the recommendation for Brendan is to avoid all grains (rice included) until 5 years of age.  What does that mean for us?  We will move forward with food trials (more cautiously knowing he still has FPIES), prepare all meals at home and stay away from even the gluten free foods since the majority utilize rice syrup or flour in their products. 

I understand FPIES is a rare disease that is unfamiliar to most.  I have accepted that fact and don't fault anyone for their lack of knowledge...that is unless you are medically treating my child. ;)  However, don't assume an FPIES parent is overreacting or scoff at their routine during meal prep etc.  We do things for a reason and that reason is to spare our child from a reaction.

And, Dr. Bird, if you are out there reading, you are truly a knight in shining armor for this FPIES family.  Validation is everything in our world.  I am a huge fan of your staff at the Food Allergy Center!  Many thanks!


  

Monday, July 2, 2012

Failed Rice Retrial

We began Brendan’s rice retrial yesterday.  Less than a tablespoon of rice and two hours later, the vomiting started with just as much force as usual.  We called an ambulance as the last ER doctor suggested and after convincing the paramedics we needed to go to the hospital, we were on our way.  Here we go again.

We arrived at Evergreen, gave the triage nurse the ER doctor letter with instructions to administer meds to counteract the side effects of the reaction and an IV, and that is when everything came to a halt.  Brendan had already vomited eight times in forty minutes and was down to bile at that point.  We asked the nurse for Zofran to stop the vomiting and she said she would check for us.  Thirty minutes later, we called for a nurse and asked again about the Zofran.  An hour and a half later and a third attempt to get the Zofran, we decided to pick up our sick little boy and leave the hospital.  It was obvious we were not going to get Zofran much less the IV hydration he needed.   We never saw the doctor either.  What would have happened if Brendan went in to septic shock?      

I am thankful he is okay.  Today has been a rough one for him while the rest of the food protein works its way out of his system.  As always, Brendan is a tough little guy and I don’t know how he does it.  I am an adult and just watching it occur scares me to death.  Justin and I really thought Brendan was outgrowing this.  He did so well with dairy and we’ve added a few fruits and veggies.  He is almost the magical “3” and his T-cells had well over the typical 18 months to “forget” the culprit food protein.  It appears FPIES is going to be with us a while longer.  So, we’ll make do with the foods we’ve been given and try to stay positive.  That’s our plan and we’re sticking to it.  However, that does not mean I can’t be furious about the lack of FPIES education in the medical community and what it costs my son and many other FPIES children every day.