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.....