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.....