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!