Wednesday, October 14, 2015

GAPS for FPIES: Part 1

If you read my last post, you saw that we were going forward with the GAPS diet/protocol to heal Sweet P’s FPIES and immature gut. Because she never had a vomit-to-shock reaction to any foods, we don’t know if she 100% has FPIES or if we are just dealing with an immature gut. Either way, the GAPS diet addresses both of these issues. I will preface the rest of the post by saying that neither Dave nor I are medical professionals, but do want to share what we are doing with others, in the chance that it helps someone.
GAPS came highly recommended from a friend of ours that had a daughter with severe FPIES, and so wanted to give it a try. GAPS stands for Gut and Psychology Syndrome, so actually much of the research and protocols for the diet come from the understanding that our gut health directly affects our brain’s functioning. So, even though the focus of the GAPS diet is to work on gut health to help create a positive and healthy gut flora, many people to GAPS to help with issues like ADHD, Autism, and other health concerns that are related to the brain. Other than having heard about this diet, we were total newbies, so our first step was to buy the GAPS book by Dr. Natasha Campbell-McBride. I love how she started the book off with the research that shows how, as a society, our gut health has deteriorated, and what the effects have been. I highly recommend the book for anyone interested in the gut/brain connection.
From the research and reading we have done, when adults or children who have already been eating solid food get started on GAPS, it is recommended that they start with the Intro version of the diet (there is the Intro and then 3 stages). The Intro means starting with homemade bone broth and only meat products and a few select vegetables. But to be quite honest, we haven’t done much research in terms of how to do GAPS for grown ups or older kids, because we are obviously starting from scratch with our Sweet P. I felt overwhelmed and wasn’t sure how to start. So, Dave and I decided we would hire a GAPS practitioner. This is someone who has been trained specifically in the GAPS protocol by Dr. Campbell-McBride. We felt that even though it would be more expensive this way, that it would be worth it.
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She loves getting her broth from a spoon!

After some research and networking, we found a practitioner who has worked with multiple babies and children with FPIES and been able to get these kids on full, healthy diets by following the GAPS protocol. Knowing we have this woman as a resource to go to whenever we have a question or a possible issue puts my mind so much more at ease than if I felt like I had to do all the research on my own.
The practitioner we chose has been awesome and a wealth of information for us so far. I was afraid we were going to have to take Sweet P off of her Alimentum formula because it’s full of non-GAPS-approved foods, but she had enough experience to let us know that was not a good idea. What she recommended, and what we have done, is start with 1 tsp of homemade chicken broth (from a pasture raised/organic chicken) twice a day, and to slowly increase it until we eventually are able to replace the Alimentum with the broth while keeping 15-20oz of breastmilk in her diet. And by that point, she would hopefully be tolerating several solid foods as well.
We are about to start Week 4 and Sweet P is doing pretty well! The big key has been to go slowly. After 3 weeks she continues with the same amount of breastmilk and formula, but she now has 5 servings of 3-3.5 tsp of broth each time! I know it’s still such a small amount, but it’s progress! She did have one incidence of diarrhea-ish poo a couple of times along the way, so we have had to back up and then build back up again. This week I will add pureed chicken meat and fat to the broth (I previously skimmed that out), and if she does well on that for a week or so, we will start giving her tiny pieces of chicken to start practicing how to eat finger foods.
I know this will be a long and slow journey for us, but we are continuing to hope and pray that going the GAPS route will be so beneficial to her and her gut health in the long run.
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This picture actually has nothing to do with GAPS, but everything to do with how cute and hilarious this photo is from my birthday dinner at a Mexican restaurant. She couldn’t eat anything while we were out, but she got to watch us eat, so that counts as related to this post, right? (Also, I know her car seat straps are a little low; rest assured that we raise them to armpit level for the actual car ride.)

Thursday, October 8, 2015

What is FPIES?

I have shared that Sweet P is likely dealing with FPIES. But, for most of you (like it was for me before), this is a strange acronym with which no one is very familiar. This is because it's only recently begun to be recognized and diagnosed more. Before October 1st, it didn't even have an official insurance code!

FPIES stands for "Food Protein Intolerance Entercolitis Syndrome." The basic definition is that it's a type of food allergy that affects the gastrointestinal (GI) tract. Symptoms include vomiting, diarrhea, constipation, or even lethargy. What this means is that when certain proteins from certain foods are introduced to your child, the GI system rejects them and the body has an allergic reaction. However, instead of the usual allergic reaction people think of, like rashes, hives, difficulty breathing, etc., the body reacts through the digestive system. 


The way our allergist described it to me (in the most basic way I'm sure) it is that we have an immune system for our body, and a separate immune system for our digestive system. Instead of the body's immune system identifying a food as an attack against the body, the immune system of the gut identifies the threat and therefore tries to rid the body of the 'threat' through vomiting, diarrhea, etc. What makes it so difficult to diagnose FPIES is that there is no actual test that can determine what foods the child will not react well to. With typical IGE allergies, there are blood tests and skin patch tests that can be done, but these tests do nothing to predict or identify which foods a child will have an FPIES reaction to. The only way to tell if a child with FPIES will react negatively is to actually trial the food over the course of several days to see if there is a negative response from the digestive system. For many kids the reaction is quick and severe, with vomiting to shock episodes within 2-3 hours after consuming the food. I'm so grateful we haven't had that experience as it sounds so scary! We did discover at 3 months that one of Sweet P's trigger foods is dairy, but her symptoms were reflux, colic-like screaming and poor sleep. Her only other symptom so far has been diarrhea.

Both our pediatrician and allergist think that based on her exposure to food and the following symptoms she likely has FPIES, but haven't officially given us the diagnosis, since there is no official test to give and thankfully so far, even though she doesn't really have "safe" foods, her reactions have not been severe. Unfortunately, the most common FPIES trigger foods are typical first foods! Dairy and soy (the main formula ingredients of course) top the list, followed by barley, rice, oats, peas, green beans, sweet potatoes, and squash. But, just because those are the most common doesn't mean that kids can't react to other foods as well. Sweet P ended up having issues with carrots and apples, two of the 'safest' foods for FPIES kids, so when a parent suspects that their child has FPIES, they will need to try each food slowly to be sure the food is tolerated well before adding new foods to their child's diet.

The symptoms and reactions are generally divided into two different categories, acute or chronic. Children with chronic FPIES symptoms usually have a hard time gaining weight and are lethargic babies, which can be extra stressful as you're trying to figure out what you can safely feed your baby. Vomiting, diarrhea, and other immediate gut responses would be included in the acute category. Although kids often have just one or the other reaction to a negative trigger food, some kids can have both. The only treatment for FPIES at this point is avoidance of trigger foods. Most children with FPIES just have a handful of foods that they can't tolerate, but some kids can't seem to handle any solid food, and this includes our Sweet P. 


Oftentimes parents don't realize their child is reacting poorly to foods until they try it in a solid form, but some babies are even sensitive to foods introduced through breastmilk. We are grateful that so far Sweet P has been able to take donated breastmilk as long as the donor is dairy free. I know it must be a difficult road for mothers who want to breastfeed and just can't seem to figure out what trigger foods are bothering their little ones. Oftentimes the baby ends up on hypo-allergenic or elemental formula because it becomes too difficult to determine which foods are causing the baby discomfort. In our case, Sweet P tolerated Alimentum just fine, which is a hypo-allergenic formula that is very expensive and can still be found in grocery stores (similar in content to Enfamil's Nutramigen). If the baby still reacts to these formulas, they can end up on elemental formulas like Elecare or Neocate. These elemental formulas are as broken down as possible and are made up of amino acids for easiest digestibility, but are even more expensive and are generally not as easily accessible. 

Thankfully, most children grow out of FPIES. Usually by age 2 or 3 kids can tolerate foods that previously made them sick. However, that's not always the case. I am in a couple of online support groups for moms of FPIES kids and there are several moms of 4, 5 and 6 year olds who still have zero, or just a handful of safe foods. This means the majority, or all, of their nutrition comes from elemental toddler formulas, while they continue to wait for their children to grow out of it. 

In retrospect, I think the buddy had a FPIES reaction to eggs, as after just a couple of tries with eggs and a very scary vomiting episode around 9 months old we avoided eggs like the plague until he was 2. We tried them again in muffins to start and by that point he had grown out of it. I remember it was a pain to be sure that there was never any eggs in any of the foods we offered him for over a year. And that was only one food! 

I hope and pray that Sweet P also grows out of this as well, especially since at this point she has yet to tolerate solid food well. If you are interested to learn more about FPIES some great resources are The FPIES Foundation and the International FPIES Association.

Monday, October 5, 2015

A suspected FPIES diagnosis

I guess I also could have titled this “Getting to the Bottom of Sweet P’s Tummy Issues: Part 4,” but this is a new adventure for us, so I figured I would start a new series of blogs on helping Sweet P get to the point of being able to handle solids. 
As of right now, at 9 months, we are still thinking that our sweet girl has FPIES, but there hasn’t necessarily been an official diagnosis since it’s a tricky condition to diagnose. But, I wanted to share our story of how we have arrived here.
At 5 months old she was still on 50% donated breastmilk from dairy-free donors, and 50% on Alimentum formula. I thought it would be fun to try some solid foods with her since with the buddy, it took a few months to get him used to eating food, and definitely a few weeks before he even swallowed what we fed him on a spoon. But, surprisingly, she took to it right away and ate a full baby jar of sweet potatoes on her first try! She was excited about food! I was so excited because feeding the buddy was such a struggle for so long while he was low on the growth charts, so I thought it would be so much easier this time around.
After that first success I introduced a few other first foods, like bananas and squash, but after a few days she had burning diarrhea. It was so bad that she screamed when I tried to change her diaper. I felt so bad, but decided her tummy wasn’t ready for solids yet, which didn’t matter since the American Academy of Pediatrics doesn’t recommend solid food until 6 months anyway. But, when I returned to solids again at 6 months, the same thing happened again.
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She sure loved eating those sweet potatoes! Too bad her tummy ended up not liking them.

I emailed our pediatrician and let her know, and she suggested that Sweet P might have FPIES. I had actually heard about it before, but didn't know exactly what it was and did some research. To really simplify, it's a food allergy that affects the digestive system instead of the typical IGE allergic reaction (rashes, hives, difficulty breathing, etc.). In the most severe cases (which is actually pretty often), children have severe vomiting, even vomit-to-shock reactions to foods. Thankfully we have just dealt with diarrhea so far. Our pediatrician let us know that the most common trigger foods are dairy, soy, oats, rice, sweet potatoes, squash, green beans and peas- pretty much all the first foods!

With an upcoming beach trip with family, we decided to give her some tummy rest and go back to all liquids and would start with uncommon trigger foods when we returned. After about 3 weeks we started with apples, carrots, and blueberries. We started really slowly with just a few bites of apples, and stuck with just apples for 4 days. After she did well for 4 days, we added carrots, which also went well! Hooray! Then, we did 4 days of pears and planned on 4 days of blueberries. However, on day 3 of blueberries she had the awful diarrhea again. So, we thought this meant blueberries were not a safe food for her and planned to stick with the other three foods for awhile.
The problem with FPIES is that there is practically no research or definitive research on it. Until October 1st of this year, there wasn’t even technically a diagnosis code for it for insurance purposes! Very rarely do doctors have much experience with it, and there are many stories of parents being told their children just have bad stomach viruses as pediatricians or even allergists haven’t even heard of it. So I joined some online FPIES support groups and listened to the advice of other moms there who said that when their kids have a bad reaction they remove all solids from their diet for a couple of weeks. Our pediatrician said she didn’t have enough experience with FPIES to know the best course of action and thought a gut rest would be fine.
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Big brother enjoyed feeding her while that lasted.
We took a break for over a week and then added apples and pears back in and the diarrhea returned right away. After we tried carrots she had a huge vomiting episode. We were so disappointed and sad! We thought these were  safe foods for her and now we felt nervous giving her any solid food at all. With our upcoming move, we decided to go back to no solid foods until we could get into an allergy specialist. I got connected with a local mom whose daughter has FPIES and she recommended the allergist that they had been seeing.
In the meantime we were packing and moving and I did some research. The idea of continuing to try foods and just see if Sweet P would react didn’t sound fun to me. I got connected with another mom whose daughter had FPIES and was healed and eating regular foods within months after doing the FPIES after following the GAPS protocol. We continued to research and see what options we had and decided to go the GAPS route, which will go slowly and be quite a bit “outside the box.” More posts on that to come!

Sunday, October 4, 2015

A new Home!

I hate that I haven’t written a blog post in so long, but we have had a crazy couple of months around here! After returning from our family vacation in July, within the time span of one week we put an offer in on a house (that we knew was kind of a long shot because it was over-priced, but we thought it was worth putting in an offer), finalized Sweet P’s adoption, hosted a small celebration for her at our house, negotiated said offer and came to an agreed upon price, freaked out because that meant having to sell our own house ASAP, and got our house decluttered, cleaned up, and on the market. And to top it off, on the 3 main days we had to get our house ready Dave got strep! Talk about a crazy week!

That week was the beginning, but then we went into the crazy flurry of open houses, negotiating the contract on our own house, inspections on both, mortgage company and rate research, and packing, packing, packing for a close date less than a month after selling our house. Add into that our continuous issues with Sweet P’s sleeping and tummy issues (that I will write more about on a future post), a stomach bug that went through our family a week after both contracts were signed, and the buddy's newly discovered skill of climbing out of his crib, and you get a very tired mama! Whew! I went to the chiropractor a couple of weeks ago and he told me he thought I had adrenal fatigue and I said, “Of course I do!” I have no advice on making your move less stressful or simpler, only the proof that we all survived despite the craziness.

IMG_0782 Family photo on the last day at the old house! Apparently it was too sunny.


We have now been moved into our new house for 3 weeks and we love it! We are finally getting settled in, and although there is no artwork on the walls and our bedroom is a complete disaster, our new house really feels like home. We just moved across town to a really family friendly neighborhood, and we have met more people here in the 2 weeks we have been here than in the 6 years we had lived in our previous home. That was one of our main goals as we wanted to raise our kids in a neighborhood where they can eventually ride their bikes safely with friends, and go to the community pool or playground and know all of the kids there; that’s what we got with this house!
  I was really nervous that we would miss our last house. It was our first house and we have the memories of bringing both of our kids home from the hospital to that place. We also put a whole lot of love, care, and hard work into that home and yard. And we loved our next door neighbors! So, we were both silently nervous that when we moved in here it would just feel like we were living in someone else’s house, but I will admit that having a bigger house and having a place to put everything is lovely. And it turns out, when you move all of your things into a home it quickly starts to feel like yours.

IMG_0886 After moving day in front of the new house! I don’t think I could possibly look any more tired.
We are excited for our future here. We have spent that past 1.5 years looking at houses on and off and this was the first house we could really see ourselves living in for the long run. We have enough space for another child (which we pray happens, but no plans for that yet!), and a big playroom where the kids can run around and make a mess in. There is definitely a lot of work to do on this home in the coming years, but we are grateful we had 6 crazy weeks that led us here. And now the plan is to never move again!