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! =)
Wednesday, May 18, 2011
Monday, May 9, 2011
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!!!
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!!!
Monday, May 2, 2011
Variety? No thanks.
We have finally built up a tiny litte menu for Brynn. Her safe foods are: pears, sweet potatoes, white potatoes, blueberries and now strawberries!! We can also use sunflower oil and sunflower seed butter for cooking (however still need a grain to REALLY make something!!). Great right? UGH. She has now decided to either gag and throw up while eating (texture issues) or just skip eating and throw the food on the floor. There were 2 days last week where I decreased the amount of formula she took in because I was thinking she could actually have a little meal and some snacks in between the meals. But no, we are back up to the full amount again. I guess we just keep trying and hope this is just a phase!!
Another thing I wanted to vent about is doctors. The kids' pediatrician that they have both ALWAYS seen, pretty much from birth, is leaving the clinic we go to. Trust me, I dug for info and found out where he was going, hoping it was just another local clinic, because we would have no problem switching clinics. Unfortunately, he is going somewhere a little too far. =( When I first came to him with Brynn's diagnosis, he had not heard of it. I was prepared for that, so brought him some info that our allergist had given us and had gladly accepted the info and appeared to be willing to learn along side of us. Now that he is leaving, we have been forced to find a new pediatrician. I did a little research and found one on the clinic's website and looked at her profile. It said her special interests were food allergies and chronic illnesses. JACKPOT!!! I was so excited and I thought maybe this was a blessing in disquise. SO WRONG. We saw her for Brynn's 1 yr appt and it was alright....nothing what I was hoping for, but after much thought, figured we'd deal with the situation and manage without a ped on board with the FPIES diagnosis. She questioned me...no no....she DRILLED me on a couple different topics, one of them being, why on Earth I would bring Brynn to New Jersey to see a doctor. She asked me numerous times how that appt would benefit Brynn and I explained to her that Dr J could possibly test to find out what foods would trigger a reaction for Brynn and maybe give us some direction in what we were supposed to do with Brynn's condition. Why WOULDN'T we go? If seeing this dr could in any way help our daughter, why not? She just sort of shrugged and moved on.
Fast forward to a couple weeks ago. Our daycare needed some papers filled out for Brynn and her special diet so Danny brought them to the clinic, asking the receptionist to give them to our old doctor. Danny's company also had some papers they wanted filled out just in case Danny would have to take some time off due to Brynn's health. I picked them up a few days later and the receptionist had given them to the NEW ped to fill out. So I looked what she wrote...on the daycare forms, questions were skipped, and it was just half-ass filled out. When I got to the papers for Danny's work, there was a post-it on it reading "this needs to be filled out by the allergist or GI specialist, not me". BULL. Luckily, we had the allergist appt so I just brought the papers to him and he filled them out. That pushed me over the edge. I'm not looking for a dr that knows everything about FPIES, all I'm looking for right now is someone who isn't going to blow me off and say it's not real or it's no big deal. Someone who will listen when I say Brynn can't have a specific medicine because of a previous FPIES reaction to it. So if anyone knows of a great ped in the surrounding areas, please let me know! I friend of mine mentioned one doctor, and we plan on seeing her for the next appt. Wish us luck!
What to trial next? OATS???? That would be a HUGE pass for us, but like I said in a previous post, it could potentially be a HUGE fail as well. Hmmmm
Another thing I wanted to vent about is doctors. The kids' pediatrician that they have both ALWAYS seen, pretty much from birth, is leaving the clinic we go to. Trust me, I dug for info and found out where he was going, hoping it was just another local clinic, because we would have no problem switching clinics. Unfortunately, he is going somewhere a little too far. =( When I first came to him with Brynn's diagnosis, he had not heard of it. I was prepared for that, so brought him some info that our allergist had given us and had gladly accepted the info and appeared to be willing to learn along side of us. Now that he is leaving, we have been forced to find a new pediatrician. I did a little research and found one on the clinic's website and looked at her profile. It said her special interests were food allergies and chronic illnesses. JACKPOT!!! I was so excited and I thought maybe this was a blessing in disquise. SO WRONG. We saw her for Brynn's 1 yr appt and it was alright....nothing what I was hoping for, but after much thought, figured we'd deal with the situation and manage without a ped on board with the FPIES diagnosis. She questioned me...no no....she DRILLED me on a couple different topics, one of them being, why on Earth I would bring Brynn to New Jersey to see a doctor. She asked me numerous times how that appt would benefit Brynn and I explained to her that Dr J could possibly test to find out what foods would trigger a reaction for Brynn and maybe give us some direction in what we were supposed to do with Brynn's condition. Why WOULDN'T we go? If seeing this dr could in any way help our daughter, why not? She just sort of shrugged and moved on.
Fast forward to a couple weeks ago. Our daycare needed some papers filled out for Brynn and her special diet so Danny brought them to the clinic, asking the receptionist to give them to our old doctor. Danny's company also had some papers they wanted filled out just in case Danny would have to take some time off due to Brynn's health. I picked them up a few days later and the receptionist had given them to the NEW ped to fill out. So I looked what she wrote...on the daycare forms, questions were skipped, and it was just half-ass filled out. When I got to the papers for Danny's work, there was a post-it on it reading "this needs to be filled out by the allergist or GI specialist, not me". BULL. Luckily, we had the allergist appt so I just brought the papers to him and he filled them out. That pushed me over the edge. I'm not looking for a dr that knows everything about FPIES, all I'm looking for right now is someone who isn't going to blow me off and say it's not real or it's no big deal. Someone who will listen when I say Brynn can't have a specific medicine because of a previous FPIES reaction to it. So if anyone knows of a great ped in the surrounding areas, please let me know! I friend of mine mentioned one doctor, and we plan on seeing her for the next appt. Wish us luck!
What to trial next? OATS???? That would be a HUGE pass for us, but like I said in a previous post, it could potentially be a HUGE fail as well. Hmmmm
Monday, April 25, 2011
Allergist appt today
We had an allergist appt today. And holy crap, Brynn has gained almost 2 lbs!! What a shocker!! Wow, I love that EleCare!! =) He was happy with the way things were going, but wants us to re-trial a couple foods....CORN being one of them. Oh dear lord, I don't know if I can do that! Corn is SO scary--it's in EVERYTHING. I'm afraid that if we trial it again, the reaction will be worse than last time and it will just keep building until we hit a full-on FPIES reaction....the vomitting, lethargy...shock. Terrifying. But he said that he thinks the reason she may have been failing so many foods could have been because of the old formula she was on--and then underlying chronic inflammtion in the gut. So...to trial corn or not to trial corn.
He also wants to trial oats. Another scary food for us. It seems that rice and oats go hand in hand with so many other FPIES kids, but then again, all kids are different and no 2 kids react to all of the same foods. Yikes.
After our appt, B and I met up with our friends, Kendall, Brian and Kara....Kara being another FPIES baby. We went shopping at Trader Joes and Kara just wanted to keep hugging Brynn. So cute!
We trialled blueberries last week and they are a pass! YIPPIE!! At first I had to peel them (Yes, very tedious, but well worth it) and now this week, she is eating them with the peelings. She still spits out most of the skins, but at least I don't have to sit and peel every single one of them anymore! She still doesn't have any teeth, so I cut them in fourths and she does great with them.
Think happy FPIES thoughts for us this week!! Strawberries maybe???
He also wants to trial oats. Another scary food for us. It seems that rice and oats go hand in hand with so many other FPIES kids, but then again, all kids are different and no 2 kids react to all of the same foods. Yikes.
After our appt, B and I met up with our friends, Kendall, Brian and Kara....Kara being another FPIES baby. We went shopping at Trader Joes and Kara just wanted to keep hugging Brynn. So cute!
We trialled blueberries last week and they are a pass! YIPPIE!! At first I had to peel them (Yes, very tedious, but well worth it) and now this week, she is eating them with the peelings. She still spits out most of the skins, but at least I don't have to sit and peel every single one of them anymore! She still doesn't have any teeth, so I cut them in fourths and she does great with them.
Think happy FPIES thoughts for us this week!! Strawberries maybe???
Sunday, April 17, 2011
PCRCD results.
Yes, that's right, we FINALLY got the results of Brynn's visit to the PCRCD in New Jersey! I open the email from Dr J and see a chart with a whole bunch of words that I have never heard of and numbers that I have no clue what they mean. (SIGH). At the bottom of the chart, this is what Dr J reports:
Relatively low production of counter-regulatory cytokines (sTNFRII and IL-10), but she is starting to produce TGF-b.
High IFN-g production with soy protein.
Th cell cytokine expression-relatively skewed to Th1 (IFN-g) in response to polyclonal T cell stimulant (SEB).
Responses to TLR agonists are within normal limits.
HUH???
So, I fwd the email to a good friend, a fellow FPIES mom, who has done a ton of research on
FPIES and ask her if she will de-code this for me. I also emailed Dr J back and asked her a few
questions to help me understand what these results mean. After reading their responses, as well
as staring at B's chart and googling TNF-a, IL-6, IL-1b, IL-10, IL-12p40, sTNFRII, TGF-b (the only
one I already knew, lol), CCL2, IGN-g.....Ok you get my drift. I had to good pretty much everything.
I then had to look at Brynn's specific corresponding number and figure out what the heck that meant.
At the end of a few LONG days of emails and decoding, the results are as follows:
We need to stay away from dairy, soy and wheat...the 3 things Dr J tested. Soy being the most
important one for her to stay away from. Dr J said what isn't something we should trial anytime
soon, but that somewhere down the road, she may be able to tolerate it. She is building TGF-b
(counter-regulatory mechanisms)- just not quite enough for these foods, but shows that her body
is getting there (it does know what to do- it just needs more practice and time).
Relatively low production of counter-regulatory cytokines (sTNFRII and IL-10), but she is starting to produce TGF-b.
High IFN-g production with soy protein.
Th cell cytokine expression-relatively skewed to Th1 (IFN-g) in response to polyclonal T cell stimulant (SEB).
Responses to TLR agonists are within normal limits.
HUH???
So, I fwd the email to a good friend, a fellow FPIES mom, who has done a ton of research on
FPIES and ask her if she will de-code this for me. I also emailed Dr J back and asked her a few
questions to help me understand what these results mean. After reading their responses, as well
as staring at B's chart and googling TNF-a, IL-6, IL-1b, IL-10, IL-12p40, sTNFRII, TGF-b (the only
one I already knew, lol), CCL2, IGN-g.....Ok you get my drift. I had to good pretty much everything.
I then had to look at Brynn's specific corresponding number and figure out what the heck that meant.
At the end of a few LONG days of emails and decoding, the results are as follows:
We need to stay away from dairy, soy and wheat...the 3 things Dr J tested. Soy being the most
important one for her to stay away from. Dr J said what isn't something we should trial anytime
soon, but that somewhere down the road, she may be able to tolerate it. She is building TGF-b
(counter-regulatory mechanisms)- just not quite enough for these foods, but shows that her body
is getting there (it does know what to do- it just needs more practice and time).
A juicy story
Wednesday afternoon, I picked up the kids and headed to my parents house for dinner, then Cody and I needed to leave for preschool. My mom had a few pears, and we decided to use the juicer and give Brynn her first taste of juice! Made it, put it in a sippy (something that she NEVER drinks from...she gets water/Elecare in her mouth and spits it out, then laughs) and she CHUGGED it. Oh my goodness, it was so good to see her actually drink out of a sippy instead of just play with it. One pear does not make much juice and I diluted it with some water as well, so she really didn't drink all that much. But, she drank the entire amount that was in the sippy! =)
The next day, our daycare provided texted me and said that Brynn had pooped 4 times already (and it was only 10AM) and her bottom was so sore. I started thinking....ok what the heck caused that?? She didn't have any new foods, she's not sick...hmmmm. Then it hit me. The pear juice. Pears are a safe food, BUT the juicer has seen many different foods. Apples being the main one. My mom uses it to make Cody apple juice when he's there. At first, I wasn't sure which food the cross-contamination was from, but after seeing Brynnie's bottom, I KNOW that is was from apples. The blistery-hives were exactly the same as they were when we trialed apples 5-6 months ago. Poor baby. Kari (daycare) let her soak in the bath a couple times and let her roam free for 10 mins here, 10 mins there, which seemed to help the soreness.
So, looks as though I need to buy a "Brynn-only juicer".
The next day, our daycare provided texted me and said that Brynn had pooped 4 times already (and it was only 10AM) and her bottom was so sore. I started thinking....ok what the heck caused that?? She didn't have any new foods, she's not sick...hmmmm. Then it hit me. The pear juice. Pears are a safe food, BUT the juicer has seen many different foods. Apples being the main one. My mom uses it to make Cody apple juice when he's there. At first, I wasn't sure which food the cross-contamination was from, but after seeing Brynnie's bottom, I KNOW that is was from apples. The blistery-hives were exactly the same as they were when we trialed apples 5-6 months ago. Poor baby. Kari (daycare) let her soak in the bath a couple times and let her roam free for 10 mins here, 10 mins there, which seemed to help the soreness.
So, looks as though I need to buy a "Brynn-only juicer".
Monday, April 11, 2011
Start of oral aversion?
While feeding Brynn tonight (white potato), I noticed her gagging quite a bit. Finally, she spit some potato out, then threw up...twice. It was definitely not 'reaction' vomit (it wasn't projectile, hitting the wall across the room, lol), but just 'normal' vomit. I cleaned her up and brought her to the bathtub and she seemed totally fine after that. We have seen her do this whole gagging thing while eating more often the past few weeks, but this is the first time it caused her to vomit. I'm really hoping this isn't the start of oral aversion. We will keep on going with the white potato for now and see what happens I guess. I want to move on to a new food trial asap, but we'll have to wait a week or 2 to give her gut some time to heal from that stupid baby wipe.
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