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!
Tuesday, November 1, 2011
Thursday, September 22, 2011
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!
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!
Thursday, September 15, 2011
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. =(
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. =(
Wednesday, September 7, 2011
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!
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!
Friday, August 26, 2011
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.....
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.....
Saturday, July 30, 2011
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!! =)
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!! =)
Monday, July 11, 2011
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?? =)
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?? =)
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