Mast Cell Activation

Well, I am long overdue on this AGAIN.  Life just always gets in the way.  I will bring you up to speed though.

We saw the new allergist and he almost immediately said he knew exactly what was going on.  He grabbed a cotton swab and "drew" on her back. He made an imaginary tic-tac-toe box.  He rubbed his hand on it a couple times and she had instant linear hives in the shape of a tic-tac-toe box.  Strange.  Go figure, we got another diagnosis--Mast Cell Activation Disorder (MCAD).  Mast cells release histamine.  So just like the other allergy cells in her body--the T-cells, eosinophils etc, the mast cells over-react and try to fight off the food, or other allergen.  This can also affect her GI tract.  Now, of course, I'm questioning all the other diagnosis.  What is causing what? It's kind of like the chicken and the egg, what came first? We are doing a daily dose of Zyrtec, and Benedryl as needed. 

Brynn is doing well.  She doesn't want to try any new foods and we are ok with that.  She knows that whatever she tries might make her sick, so she chooses not to.  The new allergist is very pleased with her weight, height, and diet.  Yes, it is a limited diet (about 20 foods now), but we chose these foods carefully, making sure she has the nutrition she needs.  She had her preschool screening in March and did fabulous, she had all the teachers cracking up.  They asked what we thought about her starting a 3 day a week preschool class because they thought she would be a great addition to the class because of her leadership skills.  We loved the idea and she started up right away!  So far, she seems to be enjoying it.  Cody is there with her most of the day and when the do split up, they are in classrooms right next to each other.  She is wearing her allergy bracelet every day (she won't let me forget about it) and we pack breakfast, lunch and snacks for her to take each day.  Cody has been a great big brother and reminds me often that he will keep her safe. So sweet.

Brynn had her 4th birthday in March. I can't believe my BABY is FOUR.  I have no idea where all the time has gone! She enjoyed her Sophia party and her purple princess cake and, of course, all the gifts!  She also started Dance this past week and she loves it.  We are now patiently awaiting Spring..........


  

New allergist

Today, we will be checking out a new, LOCAL allergist. I have heard that others have had positive experiences with him and we are in need of an allergist....or any doctor at all to help guide us in the right direction. So, cross your fingers (and toes)!! We have had some uncertainties in the last year. Brynn has experienced some symptoms that don't seem to fall under the FPIES category, but we have just been managing them on our own. Don't get me wrong, she has progressed and is doing very well, looking very healthy etc, but I feel like we need more guidance--or ANY guidance would be nice... (after all, I am NOT a real doctor...I just play one). =) As you probably know, she has also been diagnosed with eosinophilic gastritis and eosinophilic colitis. The GI doctor who diagnosed Brynn literally said, "wow, it seems like you got struck by lightning 3 times! All 3 of the diagnoses are so rare."......and then a few minutes later, basically said "well, good luck!!" So, our goal today with the new allergist, is to get someone who will guide us and work WITH us in figuring this all out. We haven't done a whole lot of trialing foods recently. Brynn is content with her safe foods and is completely done with her formula. She will occasionally ask for some, which we let her have of course. I can't say no to a little boost in nutrition. She really wanted to try some regular peanut butter a couple months ago and that turned into a success. She is enjoying her Natural Skippy peanut butter (only 3 ingredients!!). We attempted to re-trial apples and bananas, but she still had reactions to both of them. We did, however, retrial green beans (basically because we were at Grandma and Grandpa's house and everyone else was picking them from the garden and eating a few here and there and she wanted to as well!) and it was a pass! She isn't a huge fan of them, but we do get a few in her at least. =) A couple weeks ago, we re-trialed eggs. She had a scrambled egg Saturday morning and one Sunday morning. We didn't see any symptoms at all. Monday and Tuesday were crazy days for us, so she didn't have eggs those days. Wednesday morning, she woke up covered in hives and feeling itchy. We gave her allergy meds, which seemed to clear them up later in the day. Thursday, she woke up with hives all over. Again, we gave her the allergy meds and hoped they would go away again. They did not, and then she started complaining of a "yucky" throat. What does "yucky" mean to a 3 year old? Does it mean she has a sore throat? I know you can get a rash with strep. Does it mean she was refluxing from the egg? Reflux is one of those symptoms we see occasionally that we aren't really sure why. It would fit under the EoE (eosinophilic esophagitis) category, but as far as we know, she doesn't have that diagnosis. Or does "yucky" mean her throat was itchy or worse, felt like it was tightening? We, fortunately, haven't had to deal with any IgE (regular) food allergies as of yet, but it could be that too. I had my fingers crossed that it was strep (Yes, I'm that crazy mom who HOPES for a simple illness like Strep, so we don't have to add more to Brynn's list of food issues). Friday morning, when she was covered again, I brought her to the doctor, who was convinced it HAD to be strep because it wouldn't make sense to have a reaction to a food she had eaten days prior. Haha. Both the rapid and 24 hour strep tests were negative. The doctor we saw also thought it was just crazy that we don't have a doctor taking the lead for us. I (kind of jokingly?) asked if she wanted to be that doctor, and she just chuckled, so I took that as a no. =/ We clearly haven't given her eggs again and we won't until we know for sure it wasn't caused by eggs or until we have an epi pen on hand as a precaution. Over the course of the summer, we have also realized she reacts to gnat and mosquito bites. She swells like CRAZY. She had a bite on the side of her head, like by her temple, and she woke up in the morning with her eye swollen shut. She had another one on her forehead and it looked like she fell and cracked her head on a cement floor. The bites on her legs are just as bad. Poor girl. I'm hoping the allergist will test today for at least the eggs and bug bites. I will post an update after her appointment, probably tomorrow. Fingers crossed for a brave allergist, who wants to help us figure this all out and guide us in the right direction!! Thanks!

Loooong overdue

Life has been so busy; it is hard to keep up with this thing! Brynn is doing fabulous right now.  She is up to 16 foods now, plus some baking ingredients as well!  She had her 3 year well-check about a month ago and she is growing like a weed--70th percentile for height and 35th percentile for weight.  =)  We are currently working on just expanding on her already safe foods.  For example:  she can have corn and oats, so we found Marshmallow Matey's!! (Aka Lucky Charms) She LOVES them.  A few of her other favorite snacks are no longer sold in stores around here, so we are venturing out and finding some new ones.  I don't like buying cases of crackers online...she will never eat all of them before the expiration date!  Oh, and did I mention online it would be close to $7 per box of crackers? Ugh.  Anyway, she is now loving her Marshmallow Matey's, Honey Wheels and Alphabits. 

We recently re-trialed apples and it was still a fail. Bummer.  It actually took a few weeks to convince her to try it again. She has her mind made up that she is not going to try any new foods (or re-trial any previous fails) because she doesn't want her tummy to hurt.  She says, "That makes me sick, I only eat MY food!!"  She has quite the attitude about it too.  So we aren't pushing her too hard.  Life is so much more enjoyable when she is feeling well (for her AND the rest of us)!  We did get her to try kale after awhile though.  We made kale chips (oven-baked with sunflower oil and sea salt).  They aren't her favorite, but she will eat at least a couple a day, which is great since they are loaded with nutrients. 

She loves it when she can have the "same" meal as everyone else.  We try to make similar foods as often as possible.  We found whole wheat tortillas at Trader Joe's that are safe for her, so when we have tacos, we make her a taco as well--whole wheat tortilla, ground pork, and Daiya cheese.  Or if we have hamburgers, she gets a pork patty with her cheese on her special bread/bun.  She has come across a couple situations where she has gotten mad because she couldn't have the same treat as other kids.  It's really hard to watch and it just breaks my heart.  But, we are working on always having extra treats/snacks with us just in case.  We have safe homemade cupcakes and her coconut ice cream (or Grandma makes a yummy strawberry ice cream)  on hand, so we are always able to grab something to take with as a treat. 

Overall, she is doing fabulous and we will keep on truckin'!  When she is ready to try another food and when things slow down a bit for us, we will start picking out what's next.  Right now, she is enjoying the beautiful weather and feeling great!  Thanks for all the love and support throughout this journey!  

An update finally!!

WOW, I can't believe it has been so long since I've updated!  Summer has been crazy busy I guess!  =)

B has been doing pretty well. We've had a couple more fails, but we have been able to add grapes and wheat to her diet! YAY! She has a few different crackers she can have now and even some store-bought cookies!  She loves them.  She has had quite a few "mystery reactions" and I have yet to figure them out.  We have had quite a few bad days/sleepless nights because she hurts.  She is telling us now when she is in pain, so it is a little bit easier for us to figure things out. The most recent fail was oranges/orange juice.  She actually told me to dump her juice out and that she wanted water instead. I asked her why and she said "juice make my tummy hurt".  =(  Poor girl. 

On a positive note, she is growing like a weed!!  We are working really hard on getting her a well-balanced diet so we can be done with her formula.  We have cut back quite a bit and replaced that portion with coconut milk.  She isn't a huge fan though....she requests "no coco milk PLEAAAAASEEE!!" quite frequently.  Haha!! We also have been managing everything on our own for months now--no GI, no allergist etc.  Slowly but surely, we are getting a handle on this I think.....

BIRTHDAY CAKE!!!

Brynn had some issues the last couple months. We weren't sure what was causing the issues, so we went back down to 4-5 foods to get her back to 100% baseline.  Once we established that, we slowly added her other foods back in, making sure they were still safe.  Once THAT was taken care of, it was time for her 2nd birthday party!!

I was able to find a recipe that *sort of* worked.  It took a few tries, but I successfully made her a birthday cake!! 

She LOVED it....and it was good! A few people even ate a piece of this cake instead of the other "regular" cake we had available.  =)  

Happy Birthday to my big TWO year old!!!



My life as a mother of a child with FPIES and EGID

Written by a mom of an FPIES child: 

"My son has a severe protein allergy to milk & soy. This is not the same as being lactose intolerant. This is not the same as colic. This is a severe allergy that has almost taken the life of my child twice. This allergy is time consuming, life consuming, overwhelming and frustrating. People seem to think it is as easy as just not giving him milk or soy, but it is not.

It is label reading. It is shopping at 4 different stores to get all of his safe foods. It is frustration of not finding any foods he can eat because soy is in everything. It is the disappointing trips to the grocery store, and returning home yet again empty handed for this child.

It is calling and being on hold with food companies for what seems like hours to be 100% certain that the vitamin E or natural flavoring is not soy based, because soy fat ingredients do not require labeling for allergens. It is constant cross contamination research to check what foods are run on the same line as foods made with dairy and soy, because I will not let a drop enter his body.

It is constant research, constant planning, and constant thought about what foods to try next and in what order. It is the facts about food constantly running through my head.

It is constant recipe search, trying to find new ideas for the same foods search, and recipe experimentation. It is the constant meal planning. It is food journaling.

It is frequent trips to the store, since everything needs to be made from scratch. It is the steaming, blending, storing, cleaning, and repeat, multiple times a day. It is the not having the luxury to do "fast food" ever, even on those days where you just need a break from cooking.

It is trying to explain to his sister why she can't share her cookie with her brother. It is the look on his face when he wants to try just a bite of what you are eating.

It is expensive! All his foods need to be organic, natural, and whole. It is having to give up the luxuries that are my sanity in order to pay for hypoallergenic formula, because each can cost $39 and one can lasts about 48 hours. Although expenses are the smallest of the issues because his health is more important than anything money can buy!

It is the constant wonder if a behavior is due to an allergy or not. He is fussy: is he tired or reacting? He is not eating: is he full or is he reacting? He had 3 dirty diapers today: just an off day, or is he reacting? He is sleeping a lot today: is he just tired, or is he reacting? He seems uncomfortable: is it his teeth or is it his stomach? It is the fact that your heart always goes to the allergy, and your head has to try to talk your heart out of it.

It is the poop checking. Every day for 7months, poop check.

It is the not having anything in common with your friends anymore, because you eat, sleep, and breath this allergy. It is talking to people in online support groups that you have never met before more than talking to your friends, because they are the people that truly get what you are going through.

It is the prevention and worry of cross contamination in your own home. It is the little decisions about food that have turned into monstrous ones. It is the selfishness of wanting to introduce more foods then you should for convenience, and then the guilt of even thinking of that. It is the constant thoughts of food running through your head that have taken all the joy and fun out of introducing them to your child.

And the worst of all is the constant anxiety that you are going to put your baby through a reaction again if you don't do everything right. It is the constant fear that overwhelms you every time you put something new into your child's mouth."

 This says it all and I couldn't have described it any better.   This is exactly what we do each and every single day.  THIS is what it means to be a parent of a child with FPIES and Eosinophilic Gastrointestinal Disorder.

Our new normal

Cody (3) and Brynn were playing so nicely the other day.  They then came out of the bedroom and asked for a lunch-box.  I figured they'd just be shoving as many things as possible inside, likey they do with any other bag/box.  So I gave them each their own lunch-box and they went back to their bedroom.  I quietly peeked in on them and observed them playing "lunchtime".  =)  They made a table and chairs with blankets and pillows, and were beginning to pack their lunch-boxes.  Brynn started just grabbing any toy food she could find and Cody stopped her, saying, " BRYNNIE!!! You HAVE to be careful.  You can only pack safe food for the baby (a doll) so she doesn't get an owie tummy and have to go to the hospital!!!"  Brynn said "K" and took the food out and waited for Cody to tell her what was safe for the baby.  They enjoyed their lunch, then began to clean up.  Cody said, "QUICK! Brynnie! Vacuum up the crumbs!!" 

After watching this, I wasn't quite sure what to feel.  Upset that they think food can be a dangerous thing? How can something that is supposed to nourish you, be such a terrible, dangerous thing?  Or should I be happy? Happy that he is there to protect his baby sister?

I decided to be happy.  They need to have this knowledge.  This is a new lifestyle for us.  This IS our normal, and it's ok.  We WILL be ok.  =) 

ER and hospital stay =(

I will try not to get into TOO many details, because that could make this REALLY long.  =/ Brynn's doctor wanted us to stop giving her Quaker Oats because there was a chance they were contaminated with gluten, and her scope showed signs of Celiac disease.  So, we got Bob's Red Mill Gluten Free Oats.  I learned in order for something to be 100% gluten free, it has to SAY gluten free on the package.  Even if the ingredients say 100% rolled oats, it doesn't mean there is no gluten in there!  UGH.  Anyway, so we gave her the new oatmeal Christmas day.  Had a couple reaction diapers later that day.  Gave it to her Monday morning, took 2 bites and was done.  The rest of the day, she drank MAYBE 2 oz of water.  She refused formula, juice, cookies, pear...everything.  She layed around and was very lethargic.  Took her to the doctor at about 6, told us if she gets any worse, take her to ER.  Within 10 minutes of being home, she started throwing up.  We figured out a babysitter for Cody and once she was here, we took her to the ER. 

SEVEN and a half hours later, and needles trying to find veins in her right arm, left arm, right hand, left hand with no success, B was finally admitted and taken up to pediatrics.  THANK GOD!  The nurses up there were wonderful.  Got the IV going in her foot (multiple nurses plus myself trying to hold her down, ugh) and finally, at about 4:15am, Brynn and I went to bed. While we sat in the ER, I learned that the oats that we were using were for sure GLUTEN free, but that they can be processed on the same machines that also process rice products.  So this was a reaction from cross contamination with rice.  =/

We were there til late Wednesday afternoon.  She had some trouble tolerating her formula and bad diapers to go along with it.  The Resident seemed to understand FPIES and EC/EG somewhat, so he seemed to take the lead in her care. The Ped still basically said she just had the flu.  =/  =/  We have been home for a week now and she has been on a formula only diet.  She is slowly starting to tolerate her safe foods again, thank goodness, the girl wants to EAT! 

I'm a little worried that this is her new way of reacting.  It was like she KNEW that something she ate/drank caused her to feel so yucky and that's why she refused everything?  I took the time while we were at the hospital to hopefully spread awareness of FPIES and EGID to the doctors, nurses, dietitian....lol. Had to take advantage of the situation....it may help us or another family in the future!  =)

So much to process....

Again, it's been a LONG time since I have updated.  The week after Thanksgiving, Brynn had an upper endoscopy and a flex sigmoidoscopy done.  She had to be put under for this and she did a really good job.  Children's is wonderful...they were blowing bubbles for her and put a flavored chapstick on the mask so it smelled yummy while she drifted off.  In true Brynn fashion, she tore the IV right out of her foot the second she woke up.  She is such a feisty little girl!  The doctor said everything looked ok to the naked eye, except her stomach was really red.  He also said, even though it LOOKED good, we better wait for all the biopsy results before we get too excited.  A few days later, the doctor called with the results.  Not good.  Not good at all.  She has now been diagnosed with eosinophilic colitis (EC) and eosinophilic gastritis (EG), along with her FPIES...all very rare.  Here is a link for more info on eosinophilic diseases, as well as a link to a touching video: 

http://www.apfed.org/drupal/drupal/what_are_egids  

http://apfed.org/video1/video1.htm  << video of kids with eosinophilic disease

The scope also showed signs of celiac disease, however, our GI doctor is stumped, considering she has never really had gluten before.  She also has low lactase (lactose intolerant).  Ugh. 

Last week, we saw her allergist.  He really wasn't very helpful.  EC, EG and FPIES are all so rare, many doctors don't really even know what to do to help us.  I won't go into much more details about that visit.  =) 

Today, we spent 3 hours (?!?!?!) at an appointment with a new doctor, an immunologist.  Overall, it was GREAT.  Aside from the part where they took 8 tubes of blood from my little girl, and had a hard time keeping the needle in one arm, so needed to poke the other arm too.  The nurses said they have never seen such a strong-willed 1.5 year old!  Oh yeah, and aside from the part where she spiked a fever while we were there, needed a chest xray, and now has pneumonia too. Whew. 

Despite all of that, we now have a PLAN in place.  We are holding off on all food trials for at least a month or so to give her gut some time to heal.  Before moving on, we also need to hear back from the doctor on the bloodwork to see if there is anything else we need to be concerned about. Pray for good results!!!!  Thanks for the continued thoughts and prayers! B is a such a tough peanut!! 

 

Quick update!

It has been awhile again, oops!  Just wanted to give a quick little update (I hope it will be quick, I have a house to clean tonight!!). The last time I blogged, Brynn had just passed coconut. We are LOVING having coconut on her menu!  We use the Coconut Manna like it's going outta style.  She loves her potato pancakes with Coconut Nectar too.  I've also changed up a few of the muffin and cookie recipes to use Coconut Manna instead of Sunflower Seed Butter. What a world of difference it makes!! The whole family LOVES them!  =) 

We had to pull broccoli completely as well as blueberries.  =(  In short, they both caused some painful reactions for B and it just wasn't worth trying again. She also failed green beans.  We were really looking forward to her passing green beans since we tend to eat them quite a bit in this house!  I hate to see my little girl in so much pain from something as simple as food.  Poor girl, it just breaks my heart. So, for now, 2 more foods are added to the list of big, fat fails. 

On a positive note, she passed the pork trial!  She has eaten pork loin, pork roast and pork patties!  She was a little iffy on the texture of the patty, but we will keep working on that. 

She also got a hold of a marshmallow about 2 weeks ago.  I saw her putting it in her mouth, and didn't really react. Technically, it should be safe--it's mostly corn, but there is also gelatin in them, which we aren't 100% sure on yet.  Gelatin is actually derived from the collagen inside animals' skin and bones *shivers*.  But so far so good, she has had them twice now and runs around like a wild child yelling "More!! More!! More!!" and shrieking with delight.  I love seeing her so happy! 

Oh yeah!! We also attempted to make homemade fruit snacks (using gelatin).  Brynn's big brother is a fruit snack lover and B gets quite upset with us constantly saying she can't have them, so we decided we need to make her some of her own.  They turned out ok, she tolerated them ok, but...they just weren't the fruit snacks we all know and love.  I wish apple was safe, then we could find some! Even in strawberry only fruit snacks, they use apple juice. GRRRR.  Someday B, someday. 

Anyway, I said this would be short.  So, we are not really sure what we will be trying next. We would really like to get her a safe veggie, but we just haven't had much luck with them to day.  She hasn't really been tolerating much fruit either, except pear, so we will have to get our thinking caps on and see what the next trial should be! 

It's a big, big (coconutty) world!

I think I can officially say that Brynn has passed the coconut trial!  I am beyond excited, this opens up quite a few more doors for her.  I think we now have a great list of ingredients to do some baking...now to find the time to do it.  =)  Coconut flour, coconut vineagar, coconut manna, coconut aminos, coconut oil, coconut sugar, coconut nectar.....AHHH so many choices!! We already have the coconut ice cream (Brynn LOVES it!), and just picked up the coconut nectar, which is like a syrup.  We plan on making her some potato pancakes (white potato, water and sorghum flour) this weekend and topping it with the coconut nectar!!  Check out these products!

Coconut is said to improve digestion and absorption of nutrients, reduce problems assocatied with malabsorption, and reduce inflammation (among many, many other benefits).  Just what my little B needs! 

No fair Mommy!!!

Yesterday afternoon, Cody asked for a snack.  I got him a snack and set it at the table. He asked for juice, so I grabbed it out of the fridge and poured him some.  Brynn ran up to me and started saying "yeah yeah yeah!!"  I said "ok , let's get your juice!!"  (A few weeks ago I found a pear juice with no other ingredients so it is safe for her)  So I put Cody's juice back in the fridge and pulled out Brynn's pear juice.  She refused to take it and just started crying. I asked her if she wanted a snack and she said "yeah" and ran to the table to get Cody's snack.  I said "sorry honey, that's owie on your tummy".  She threw herself on the floor and started just screaming. So I got her freeze-dried strawberries (her favorite snack), and put her in the high chair. I put some on her tray and she picked every single one of them and tossed them on the floor, screaming and pointing to Cody's snack. If she was able to, she would have been saying "It's just not fair Mommy!!!" 

Up until this moment, she has always seemed to be ok with what she has on her plate and it didn't seem to bother her (or she didn't notice) that her plate/bowl is always filled with something different than what everyone else is eating.  She definitely knew that Cody had a different snack than her yesterday.  I have been dreading this moment for so long. She is beginning to feel left out.   =( 

Broccoli or blueberries?

Last week, we started a broccoli trial.  Well, actually, about 3-4 months ago, we started a broccoli trial, but Brynn got a cold after the first 2 days, so we ended up stopping the trial until she was feeling better.  So I guess I should say we are getting BACK to the broccoli trial.  She actually loves it, she uses a spoon and eats it all by herself! 

We decided to get away for the holiday weekend, so (after our basement flooded due to a busted pipe) we headed to my parent's cabin.  On Sunday, she had her sixth exposure to broccoli, and up until then, we hadn't noticed any symptoms that would lead us to believe we should pull the food.  At dinner, we gave her 5-6 blueberries (which she can normally tolerate).  Well, I was feeling guilty because she wanted more SOOOO badly, so I gave her another 5-6 and she gobbled them up.  A few hours later, the diapers started.  Her bottom was completely raw within the amount of time it took me to grab a diaper and get her changed.  This continued the rest of the day and the following 2 days.  Diaper changes are awful right now because she SCREAMS because it hurts so bad.  She was waddling like a duck the last few days because she is so sore.  She can't even take a bath because the water hurts her.  =( Poor baby. 

So, was it the broccoli or too many blueberries? I have always been somewhat iffy on blueberries and tend to blame them a lot.  Maybe we should just pull them completely.  Or was it the broccoli? She didn't show reaction symptoms up til that day, but then again, it could have been building.  With bananas, we didn't see anything until day 4.  So maybe we saw a broccoli reaction on day 6? I'm stumped.  I guess we have to pull both for awhile and, once she gets back to baseline, try one of them again? I hate to cause pain if I don't have to, but I think we need to know which one is the culprit so she can hopefully keep 1 of them in her diet, rather than pull both for good.  Wish us luck!

Update and Functional medicine

WOW! It has been such a busy summer, I'm embarressed that I haven't blogged in nearly a month!! Yikes!  I will start where I left off with the last entry!

New ped:  I brought B to her 15 month well-check with a new doctor.  She listened to what I had to say and wasn't too judgemental about the whole situation, but I still don't think she understands the situation.  She was more concerned about getting Brynn off of bottles. UGH. That is my absolute last concern.  Her EleCare is her only source of real nutrition, I don't really care how she drinks it. Yes, she gets sippy cups throughout the day, but only with water or her new juice (JUICE!!!! YAY!).  For some reason, she just doesn't care for her formula in a sippy.  She spits it out and just plays around.  Like I said, she NEEDS to drink her formula. Plus, I don't want to waste her formula by her spitting it out.  This stuff is expensive!

Tomato:  It wasn't the WORST fail, but it was bad....it was a LONG recovery.  We will be staying far away from anything containing tomotoes.  Good thing neither Danny or I eat them.  Cody loves them, but we will leave that to the grandparents.  =)

Functional medicine:  We saw a homeopathic doctor and she immediately took interest in Brynn.  Not only did she want to treat the symptoms, she wanted to get to the root of the problem and take care of it from there.  We did some off the wall kinds of tests (so strange, but whatever works!!) and tried to figure out some homeopathic meds to try to heal her, from the inside out.  The first one she wanted us to try contained rice product.   I immediately said no way, can't do it.  She insisted that she shouldn't react to this type of rice, but I knew better. I know how sensitive our little FPIES babies can be.  She somehow talked me into at least trying the tiniest sprinkle ever (after MUCH discussion).   Against my better judgement, I agreed.  I still don't know exactly why I agreed.  I cried the whole way home and talked to numerous people who all thought the same thing: you won't know unless you try...this could be the one thing that really helps her.  So, I got home, and put literally a tiny little speck of the medicine in her bottle.  I apologized a thousand times to her and cried while she drank it, then put her to bed. I immediately packed up her diaper bag, made sure I had her ER letter, and packed a bag for myself, ready to head to the ER.  I (impatiently) awaited the 2 hour mark.  I talked to a good friend who helped me through those 2 hours.  Then, exactly when I expected it, the screaming started.  My poor baby was in so much pain.  She wouldn't let me hold her, she wanted nothing, she just rolled around on the living room floor, screaming and crunching up and stretching out.  I knew it.  It lasted about 50 minutes or so, and finally she asked for a bottle, which calmed her down.  She stayed up for about another hour and I just rocked her while she settled in.  Never again will I go against my better judgement.  =(

I consulted with the dr the following day and we decided to wait a couple more days and then move on to the next med.  I thought this one would be ok....she tolerated it until the next day. We pulled it right away as her bottom was so sore she couldn't even sit or take a bath.  I told the dr that we would wait at least a week before starting the next med.  The next med we tried is supposed to balance the yeast in her body and she is tolerating it. We are still increasing the amount to work up to a full does, but she is doing well!!   We also tried one more, that is supposed to work on her gut flora and she is doing ok with that one too! Slowly but surely.....

Update

It's been a long few weeks. I'm hoping Brynn will start to turn the corner after her tomato fail soon.  =/  Diapers are still not normal, eczema is terrible, mood is all over the place, just like her appetite.  Most of the time, she only wants bottles, with a few decent sized snacks here and there.  She has lost 1 pound as well.  After a struggle with a couple doctors about a week and a half ago, I brought her to a functional medicine doctor to see if they could help at all.  They did a full physical...weight, height included.  I didn't think of it right away, but a couple days later it hit me. I checked what Brynn's height was at her 12 month appt and compared it to the one the dr just did. Exactly the same.  Hmmmm....according to the growth chart, she dropped from the 62nd percentile in height down to the 5th percentile (possibly a common trend in FPIES kids?).  Ugh.  Started calling the doctors again and FINALLY got one of them to help me do SOMETHING. They ordered some stool samples, so we got those taken care of Friday. They are first testing it for bacteria and infection...not want I wanted tested, but I guess you have to start somewhere, right? I'm really hoping that once those tests come back negative (I'm pretty darn sure this is FPIES related and not a bug), they will order a new set of tests to figure out what is going on.

We are also meeting with a new pediatritian on Tuesday. I spoke to her briefly last week and it looks like we may have found a ped willing to help and not just brush us off.  =)  I really hope we have finally found a doctor who wants to be proactive and someone that I can finally talk to when things aren't going smoothly with Brynn. 

Please keep my fellow FPIES families in your thoughts and prayers...there are a few of my good friends that are going through hard times right now with their little kiddos.  Hang in there guys!!  =)

Fail.

Corn has been an amazing addition for Brynn!  She loves her kix and polenta (we call them her pancakes, lol).  We have given her corn flour noodles as well as Trader Joe's corn tortillas, but she hasn't been into those.  She gags with the texture and just ends up throwing them on the floor.  =/  We are still limiting her fresh fruit intake, as it seems if she has more than 1 serving a day of fruit (blueberries,strawberries or watermelon), her gut seems to get irritated.  A typical daily menu looks like this:  plain oatmeal for breakfast, kix for snack, sweet potato or white potato for lunch (plain of course) along with fresh fruit, Original Cheecha Puffs for snack, and sweet/potato/white potato or polenta or a homemade mini-muffin for dinner.  She doesn't usually eat a WHOLE lot per mealtime, so she still has her six 60z bottles a day too.  With the recent illness and tomato fail, her diet has pretty much been her formula. 

Tomato fail:  I have been thinking about a tomato trial since the corn pass, so we would have some sort of sauce to use for her noodles or even for the tortillas.  My mom and I went to the local farmers market last week and picked up some tomatoes.  We gave her a small bite that night and she seemed to do ok with it.  The next night, I got home and the report from the day was a good one, so I gave her 2 bites.  I gave her a bath awhile later and noticed some major eczema going on on her arms and legs.  Poor girl, it was red and blotchy and just sore.  =(  She slept like crap that night, being up for over an hour at a time and just restless.  Her skin got worse the next day, so we decided to wait a day before giving her another bite.  The next day she had major diaper issues....and lots of them!! ICK!  That night and the following day were filled with diapers that had totally undigested food in them.  Great, that means her gut is inflammed and she isn't absorbing her nutrients.  Just yesterday, she finally starting eating a bit more, but her diet is still mainly her formula.  Hoping for a quick recovery and once she is ready, on to a coconut trial!!  There are lots of options with coconut.  Coconut flour, nectar, vinegar, oil, ICE CREAM.  Yes, we are going to be trialing coconut with ICE CREAM =)  Best trial ever.  And of course, we are trialing it not only for the variety, but also for the nutrition!! It reduces inflammation, improves digestive function, relieves symptoms associated with Crohn's disease and other colitis illnesses,  and reduces problems associated with malabsorption issues.  And did I mention that she can maybe have ice cream??  =) 

Thinking 'corny' thoughts...

So, we did it. We re-trialed corn....and PASSED!!  I can't believe it, this is so awesome!  We used kix cereal again and I wish everyone could have seen her face when we gave the single kix to her on the first day of the trial.  She smiled, she giggled and she just looked at me like life was great! Until she figured out I wouldn't give her more.  Then her mood changed, haha!

I stopped at Trader Joe's last week and found corn tortillas (corn flour, water, lime), which I think will work great. I'm excited to make her PB&J sandwich (sunflower seed butter and strawberries). I have a feeling she will love it! I also want to try corn chex and polenta and see what I can do with those!  If anyone has more ideas on what we can try with this new pass, let me know!!!! 

Last week, my mom and I took Brynn to an Integrated Health Clinic to see a doctor. My mom has Crohn's disease and this doctor has helped her, so we thought we would see what her thoughts were on FPIES.  Overall, it was a great appointment.  The first thing that caught my attention, was a test called the ALCAT test.  This test differs from other food allergy or sensitivity tests as it accurately and objectively measures leukocyte cellular reactivity which is the final common pathway of all inflammatory triggers.  The test is a simple finger prick blood draw and tests 20 foods:  apple, barley, beef, broccoli, cane sugar, carrot, corn, cow's milk, garlic, gluten, lemon, orange, peanut, pork, rice, soybean, sweet potato, tomato, tuna, and turkey. 

Something else I just thought about was a test I had done on myself a few years ago.  I chiropractor was just opening and had advertised one free session, so I decided what the heck and made an appt. While I was there, they did a test called the ZYTO--I put my hand on this machine and had to keep it there for 3-5 mins or something like that.  On the sheet I got, it says that this info is not an indicator of food allergies or food sensitivities. It is simply data showing your body's degree of response to computer signatures that have been linked to the foods indicated.  Anyway, the top 5 foods that it says that I may choose to avoid are RICE (Brynn's biggest trigger), american cheese, ciggarette smoke, millet and pecans.  Very interesting.

Could either of these tests be possible predictors of FPIES triggers?  I'm thinking about cutting out the top 5 foods on my list and then re-introducing them to see if it makes a difference for me.  We are debating on doing the ALCAT with Brynn.  This doctor doesn't take insurance so nothing would be covered. She was an amazing dr though... we just had the consult and she was very interested in FPIES and right off the bat said "Ok, we need to figure out what is causing all of this and what we are going to do to fix it".  She thinks B probably has an overgrowth of yeast in her body, which is what we were thinking as well.  But it's not like we have a pediatritian that I can call and say "hey, this is what I think is going on with Brynn, can we try an antifungal med to see if it helps?"  The doc we currently have would look at me like I was nuts, lol.  The integrated health dr wants us to come back for a more in-depth history or Brynn's life as well as my pregnancy, she wants us to do a yeast in children questionairre, and she wants us to talk to the nutritionist she works closely with to help figure out what is going on. We have never had a dr that REALLY wanted to help us.  It just sucks that NOTHING we do with this dr will be covered....it's going to get spendy.  We need to figure out what we are going to do. 

The last couple days we have been trialling cucumbers.  She doesn't seem to be a fan of them, she just picks around them.  Oh well, we will try them a few more times--just enough to call them a pass.   Hmm what to trial next??  =)

Long overdue update!

I know, I know, it's been way too long! With summer weather....well, I don't know what exactly to call it when it's literally over 100 degrees one day and then the next barely 70, but....life has been very hectic! We try to get outside as much as possible, so I feel like I barely have time to do anything else!

I'm pretty bummed this morning. I'm not sure what is going on with Brynn.  Last week one day, daycare called me and said she had a HORRIBLE, raw butt.  Since it was such a nice day, she just let her run around outside with no diaper on and just a onsie (unbuttoned) to air out.  We hadn't done any food trials that week, so I have no clue what caused it.  I decided maybe we should pull all her safe fruit for a few days to see if that helps, and it did.  So Monday we started to add her safe fruits back into her diet, but only giving her small amounts of them and only a couple times a day. It's really hard to NOT give her fruit, because it's pretty much all that is safe for her other than pototoes and oatmeal.  Monday night she was up quite a bit at night and was crabby/clingy at daycare so I was thinking maybe she had an ear infection. Brought her in and her ears were just fine.  So last night, about 11pm, she woke up and I changed her diaper. It was awful.  Gave her a bottle and put her back to bed. She was then up from about 2-4am screaming.  What the heck is going on??  She had sweet potato, a bunch of blueberries and a strawberry for supper...was it one of the fruits? I thought they were both safe? (Sweet potato is for sure safe)  Now daycare just texted me that she had another terrible diaper and her butt is raw as can be.  =(  Blueberries?  I told her not to give her any blueberries today to see if that helped. I don't know what else to do.....

Another battle I've been struggling with is her probiotic.  After we got back form our New Jersey appt, we started both the EleCare and the probiotic at about the same time.  Since then, she has been doing A-mazing with food trials, only failing eggs and having a couple other little mishaps with crumbs and cross contamination.  Her current does of probiotic is so small--she only gets 2 tiny pinches every morning.  So, is that minute amount of the probiotic REALLY helping her? Or does she not need it anymore because the EleCare actually made the difference and healed her chronic inflammation?  I just don't know the answers and I hate knowing that I don't have a professional to turn to for advice.  This is all on Danny and I.  We are supposed to figure this out on our own.  I'm not a doctor, how I am supposed to know all of this?? Ask me about autism or behavior analysis and I can help, but all of this GI stuff?  I have no clue. 

Do I pull all of her fruit (except pears since those are a long-time pass) and re-introduce them? That may be the answer.  Should we work on increasing her probiotic and put all food trials on the back-burner? Maybe.  I want so badly for her to be able to eat more foods, so I hate to stop food trials. I want to find her foods other than fruit that she can tolerate so we don't end up giving her so many servings of fruit every day.  Could something else be going on that has nothing to do with her probiotic OR fruit? Good chance....like I said, I'm not a doctor though. Sure would be nice to have a pediatrician on board with FPIES so I'd have someone to call. 

When things like this are going on, it is so incredibly hard for me to focus on anything else. I have to remind myself that I still need to get my job done, I still need to clean my house, I still need to take care of my kids in other ways besides watching what goes into their bodies.  And I need to take care of myself. I just need to take it day by day, step by step and have faith that I will be able to figure this all out. And I pray every day that FPIES is coming to an end, not just for Brynn, but for all the little ones that suffer because of it....please.....

Oats, eggs and watermelon!!

Don't worry, we didn't mix oats, eggs and watermelon together.  =)  We've really picked up the pace on food trials lately and the above items have been the latest ones! We officially have passed oats, which is simply amazing!  She can't get enough of her oatmeal! It's such a great feeling to have both kids eating the exact same thing for breakfast (and even dinner lately, lol). 

This past Friday evening, we decided last minute to trial eggs. I've been thinking about and wanting to trial eggs for awhile now, so we finally just did it.  She seemed to do fine with the few bites she had, slept ok (up a little more than normal, but not a ton).  Saturday morning, she had a dirty diaper and my mom changed her right away and she had an instant blistering rash all over her bottom.  It continued to worsen the rest of the day and then calmed down on Sunday.  Poor girl, it was so sensitive and sore, we decided it wasn't worth giving her anymore eggs for awhile.  But now I'm left with...did she actually have a reaction to eggs? Sulfites maybe?  Or was it because B's body can't handle corn and chickens eat corn?  (I know that whole chicken issue sounds strange, but trust me, it can happen!!) Who knows, but we are staying away for now...no need to push through the pain of not even being able to sit.  =(

Last night, spur of the moment again, I gave her some watermelon. It was another food on our list to trial, so I just did it! Cody was having some and she was reaching for his plate.  I cut her up a couple small pieces and she loved it.  She cried and cried when I wouldn't give her more though.  I didn't want to overload her on the very first day of a trial though.  If a trace amount of a trigger food can make her vomit til bile and show shock symptoms, I defintely don't want to fill her up on a new food!

Oh! And she FINALLY got her first tooth!! At 13.5 months, wow!  =)

MUFFINS!!!

Brynn's favorite food: Muffins.  A fellow FPIES mom, who comes up with some amazing recipes, posted a recipe for Sunny Bunny banana muffins.  Well, Brynn can't have bananas, so we improvised and figured out something that works for her!  We used sorghum flour (new), potato starch, baking soda (new), sunflower seed butter, sunflower oil, and a natural cane sugar (new).  The first time I made them, I used pears, and just last night I made some with strawberries.  They actually aren't THAT bad!!  =/  The sunflower seed butter (tastes exactly like it sounds, lol), overpowers all the other ingredients, but Brynn LOVES them.  She pushes all other food to the side (well, floor I guess) and asks for more muffins.  She wants nothing to do with strawberries, unless they are freeze-dried. Maybe it's a texture thing again.  Oh well, she can eat muffins!!  This is super exciting--I can use that recipe and make bread, a cake...oh the options!!!!!!! Thanks Amanda!!!

She's still randomly gagging and spitting up from food texture.  Not really the vomitting anymore, which is nice, but I hope she gets over this gagging thing soon! 

Yesterday, we were at my parent's house and we were all chatting on what we were going to have B try next.  I, (sort of jokingly) said oatmeal, and my dad jumped on the idea and within minutes I was making her oatmeal.  I have no idea why I all of the sudden had such courage.  She has been doing so well lately with food trials and I just figured, why not? 

So far, so good. She did fine with 1 tsp last night and had 2 tsp for supper tonight.  Her rice reaction was after the 4th or 5th ingestion so we are not for sure in the clear yet....but like I said, so far, things are going ok!!! YAY!!! I'm feeling pretty empowered right now!!  She has passed every food trial since we switched her formula to EleCare.  We've had a few mishaps (wipe, juicer cross-contamination and increasing her probiotic too quickly), but otherwise, things are going SO WELL!  Thanks for all the continued support!!!