Here's our Forbidden Foods list now.
Rice
Oat
Dairy
Beans
Peas
Other Legumes
Sorbitol
She can have minimal amounts of soy.
Showing posts with label rice. Show all posts
Showing posts with label rice. Show all posts
Thursday, July 29, 2010
Allergist Appointment # 2
I don't even know where to start this after our appointment today. I feel like we are moving backwards in our journey with Kara.
We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.
Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...
Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.
We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.
I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)
So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.
We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.
Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...
Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.
We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.
I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)
So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.
Friday, July 2, 2010
The Gastro Trip
Back in January we made our first visit to the pediatric gastroenterologist at MN Gastro. Kara was almost 8 months old.
It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.
We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."
I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.
A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?
It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.
We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."
I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.
A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?
Thursday, July 1, 2010
Her Story
Kara has always had sensitivity issues, since being only weeks old. I remember bringing her into the clinic at about 5 months old when she was broken out in eczema pretty bad. The only thing different we had done was give her a small amount of rice cereal for the first time. We were told to stop and try again in a few weeks so at six months old we attempted the cereal again. She gobbled another small amount down and we were on our way, as we had an event we needed to attend that night. Kara started acting really strange about an hour later, very lethargic and a little fussy. Shortly after that she really started acting funny, like she wasn't quite with us. I remember holding her up saying her name as she vomited a very large amount all over me and seemed to pretty much pass out. I panicked, trying to get her to come out of this and she proceeded to do these vomiting episodes 3 or 4 more times in the next 20 minutes or so. At that point, I grabbed Brian and we were on our way to the ER. They observed her and decided that it was a vesovagal response to the vomiting, educated us on dehydration signs and sent us on our way telling us not to try the rice again for 2 weeks and see what happens.
At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.
Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.
At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.
Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.
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