Kara had a really cranky, irritable night last night. I'm not sure anyone got much sleep in our house. She woke up this morning and seemed ok, so we got ready to go to work and daycare. I was tired, but hoping for the best!
I had a message this morning from Kara's allergy nurse. I swear, they somehow seem to know when we are having problems and call to check on things! Have I mentioned how amazing they are?! I told the nurse about how Kara isn't looking much better and how things went for us the night before. She said she would talk with the doctor and call me back shortly.
Around noon, our daycare gal called to let me know that Kara's cough was pretty barky sounding. I sort of panicked, as I tend to do, but was told that I didn't have to come get her, she just wanted to let me know. She said it was almost nap time so she could just put her down for a nap...No, I said, laying her down is only going to make things worse for her. I let her know I was waiting on some phone calls from her doctor, anyway, so I'd come get her so we could get a neb in her right away. I left work and went to pick Kara up. She wasn't terrible but certainly didn't look good! On the way home, I left a message for the allergy nurse to call me so I could let her know about the latest.
We got home, took a neb, had a bottle and snuggled in the recliner. Kara doesn't go too far from my side when we are together! I didn't have the heart to put her in the crib and had too much to do to snuggle her in my bed, which is our new favorite! The nurse called back shortly after. We talked about things, she told me the doctors suggestions and then ended up putting the doctor on the phone with me. We are two and a half hours away and this office respects that and doesn't want us to drive down if it's something we can take of over the phone!
Dr. Ott, Kara's allergist, explained how we cannot start food trials on Friday with how Kara has been. My heart sunk, I started shaking and wanted to cry. Forget about the anxiety with starting foods- now we are getting pushed back again! With how much inflammation Kara has going on with her airway and skin, it will be way too complicated to add anything new to her system at this time. She said to hold off at least another week. We talked about everything I've been doing with her skin, Kara's history last winter (constant nebs - pulmicort and albuterol) and the winter before (hospitalization from respiratory complications). She prescribed Kara a two week dose of Prednisone to help get this inflammation under control. We will do the slow taper off, as you do with Prednisone, and then start the Pumicort nebs right away. We discussed a small dose antibiotic to get us through the winter but I brought up my concern of her intolerance to antibiotics. She said she wants to see Kara soon, within the next two weeks so we made an appointment for the end of next week. I'm hoping we can get the food trials started after that appointment but am ready for anything at this point.
Showing posts with label asthma. Show all posts
Showing posts with label asthma. Show all posts
Tuesday, October 4, 2011
Allergies and Asthma
Kara's eczema has been completely out of control. Despite the measures we've taken since our last allergy appointment in mid-September it hasn't gotten much better. With this we've seen even more of an increase in the sneezing, stuffy nose, and icky, croupy cough.
It was a beautiful fall day yesterday and we spent the late afternoon and evening outside. Brenna just learned how to ride her bike without training wheels and Kara has mastered pedaling on her trike. The girls rode in circles around the driveway. I noticed Kara getting puffier and puffier. We came in for baths and the eczema around her eyes was bright pink again. Her wrists looked like they had welts on them. I put her in the bath quick and did her full skin regime afterwards. I wanted to cry looking at the random patches all over her legs and arms. Kara did a good job covering her entire face in vaseline (!) helping Mamma while I applied her meds everywhere else. We wrapped her ankles, put jammies on and her itchy was making her crazy. Another dose of Benedryl was given - we should really buy stock in this stuff! Not too long after this, the wheezing started. She was scaring me! I'm so tired of having night after night wondering if we are going to end up in the ER! I swear it's every other day lately! We started up the nebulizer and Kara took that and fell asleep in my lap.
It's been one thing after another. These symptoms clear a lot of things up for us as far as what all was food related. Since she has always had these symptoms, we didn't know if it was food driven or not. Given the fact that she is on no food right now and hasn't been for almost four weeks now, it's clear that this is all related to something else - something in the environment that we haven't been able to figure out yet, despite the skin prick testing. Who knows if we'll ever figure it out. For now, Benedryl and Zyrtec are our friends. :)
It was a beautiful fall day yesterday and we spent the late afternoon and evening outside. Brenna just learned how to ride her bike without training wheels and Kara has mastered pedaling on her trike. The girls rode in circles around the driveway. I noticed Kara getting puffier and puffier. We came in for baths and the eczema around her eyes was bright pink again. Her wrists looked like they had welts on them. I put her in the bath quick and did her full skin regime afterwards. I wanted to cry looking at the random patches all over her legs and arms. Kara did a good job covering her entire face in vaseline (!) helping Mamma while I applied her meds everywhere else. We wrapped her ankles, put jammies on and her itchy was making her crazy. Another dose of Benedryl was given - we should really buy stock in this stuff! Not too long after this, the wheezing started. She was scaring me! I'm so tired of having night after night wondering if we are going to end up in the ER! I swear it's every other day lately! We started up the nebulizer and Kara took that and fell asleep in my lap.
It's been one thing after another. These symptoms clear a lot of things up for us as far as what all was food related. Since she has always had these symptoms, we didn't know if it was food driven or not. Given the fact that she is on no food right now and hasn't been for almost four weeks now, it's clear that this is all related to something else - something in the environment that we haven't been able to figure out yet, despite the skin prick testing. Who knows if we'll ever figure it out. For now, Benedryl and Zyrtec are our friends. :)
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.
Sunday, July 25, 2010
Week Wrap-Up
We have been on a nice, even keel for the past few days with Kara, nothing major has happened. There is something that she's been having that bothers her once in a while but I can't, for the life of me, figure it out. She's been having really icky diapers a few times a day that literally BURN her bottom, even though she gets changed immediately after. I don't know if it's too much fruit, a certain vegetable, something in a cracker that she's gotten, no clue. It's frustrating but it's minor compared to what we've gone through with her in the past.
We have her one month follow up with the pediatric allergist on Thursday down in St. Cloud. I'm really anxious for this appointment and it's the start of a busy four weeks for appointments for her. It's hard to believe the changes we've gone through in this last month. It's been life changing!!!
One thing that we need to talk to the allergist about is Kara's possible asthma. Her nebs are doing wonders and as much as I'd like to think she does not have it, I'm pretty sure that she does. I'm really hoping that he'll run the other environmental and animal scratch tests too so we can have answers to that before it becomes a problem. He had mentioned that we'll be following up with a gastroenterologist but we're one step ahead and already have those appointments made.
One thing that we did this weekend is tried eggs with Kara. I was SO incredibly nervous to give her them but knew we needed to - if that was something she could tolerate it would open up some more options on feeding my babe. After a negative blood test and scratch test for the egg allergy, I decided it was time I try it but I was still so nervous about an FPIES reaction. I mixed the egg up with some of her formula and scrambled it up, it worked out pretty well! Kara loved it, eating almost the entire egg. I watched her like a hawk for the first few hours waiting for something to happen and nothing did! Yay! She has a new food she can eat!!!
That's about it for what's been going on lately, other than three beautiful days at the lake. We are ready to take on what this week has in store for us and like I said, anxious for Thursday's big appointment. I'll keep you updated! :)
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