I have neglected this blog lately. We took a little break from everything and right about the time that we needed to get back to the doctors for follow ups, things started spiraling out of control.
Kara has recently been diagnosed with Grave's Disease, another auto-immune disorder, and with all of this, the appointments, the symptoms, the new medications, things have been very, very busy and very overwhelming for all of us.
I recently started a Caring Bridge website for Kara, for many reasons, to better track visitors, it's a little easier for me to get on and update, and so on. If you have been a follower of this blog, please continue following us at www.caringbridge.org/visit/karanelson1. It's FPIES, Grave's, IgA deficiency, IgE allergies, and whatever else comes up, all in one.
Maybe someday I will get back to this, but for now, it's going to be on caring bridge. Please drop in and see how we're doing, and leave us a message in the guestbook!
Friday, April 27, 2012
Monday, February 20, 2012
Five Foods!
Trying to decide which food Kara is going to trial next has been very difficult. I'm trying to go by the foods that she had safe, or so we thought, in the past. Our latest food trial pass was driven by Kara. I was in the pantry, at a loss as to what to make for supper (As usual!) and she was right there with me when I asked her what she wanted to try next. She said "Peas, Mamma!", so peas it was!
Generally you are supposed to start with a small amount and work in a little more each day. We haven't done that with Kara with the re-trials because we have a general idea that they are going to be passes, with the exception of corn. I gave her a small bowl of peas at dinner and she wanted more, more more. It was hard to stop her and I didn't want to deny her food, when she was actually eating!
After a week and a half, we felt comfortable to call peas a pass! She was eating large amounts each day and was symptom free, bringing us to the magic number FIVE! Sweet potato, white potato, beef, apple and peas are the foods that consist of Kara's tiny, yet growing diet! Bring on number six!
Yesterday at breakfast I asked Kara what she wanted her next food to be and she replied "Nana's, Mamma!" Banana it is! I'm half tempted to call banana a freebie but will stick with it for at least a week, I think, just to make sure. Banana has never seemed to cause her any problems and she loves them. It's so much more exciting to trial a food when I can have her input on it! It's not worth it to me, to trial a food that we are going to struggle getting her to eat!
Generally you are supposed to start with a small amount and work in a little more each day. We haven't done that with Kara with the re-trials because we have a general idea that they are going to be passes, with the exception of corn. I gave her a small bowl of peas at dinner and she wanted more, more more. It was hard to stop her and I didn't want to deny her food, when she was actually eating!
After a week and a half, we felt comfortable to call peas a pass! She was eating large amounts each day and was symptom free, bringing us to the magic number FIVE! Sweet potato, white potato, beef, apple and peas are the foods that consist of Kara's tiny, yet growing diet! Bring on number six!
Yesterday at breakfast I asked Kara what she wanted her next food to be and she replied "Nana's, Mamma!" Banana it is! I'm half tempted to call banana a freebie but will stick with it for at least a week, I think, just to make sure. Banana has never seemed to cause her any problems and she loves them. It's so much more exciting to trial a food when I can have her input on it! It's not worth it to me, to trial a food that we are going to struggle getting her to eat!
Influenza
A few weeks ago, Kara woke up from a nap not feeling the best. By bedtime she had a pretty high fever, and by 2 am, it was 104.2 and she was grunting with her breathing. Panicked, we got up and headed in to the ER. Kara definitely had croup and was given a dose of Decadron after a clear chest x-ray, but before we left, I was talking with the doctor a little more about her IgA deficiency, the fact that we never did have a good time to get her a flu shot, and maybe, what if, do you think, that she could possibly have the flu? He said he doubted it, but given her history he would swab her for the test. He instructed us that we could leave after she was swabbed and he'd only call if it was positive, but again said he doubted that's what it was. We had the test done and were on our way home.
I got Kara back to bed and just settled in myself when my phone rang. Sure enough, it was the doctor. "I can't believe I'm calling to tell you this, but her influenza test was positive!" He had a prescription for Tamiflu at the desk for us to pick up in the morning when the pharmacy opened.
I was crazy worried about giving this to her, but the benefits were going to greatly outweigh the risks and with Kara's respiratory history this was something we needed to do. Kara made it through the five days of Tamiflu exceptionally well and we were able to get her through the virus at home until the following Monday when I brought her back in to her primary. She had another chest x-ray which showed questionable pneumonia, but again, we were able to get her through it with the nebs and medications at home.
Close to two weeks after the flu diagnosis, we were still noticing that she had a really icky cough but seemed better otherwise. The conversation between Kara's Primary and myself, and the Allergist and myself was whether or not we should put her on Prednisone to help with that. If she went on Prednisone we wouldn't be able to do a food trial and at this point, we are trying so hard to build her tiny diet. I ended up not filling the prescription and went on with a trial. She is still having some barking cough symptoms here and there but the nebs are doing their job and we are hopefully through this!
I got Kara back to bed and just settled in myself when my phone rang. Sure enough, it was the doctor. "I can't believe I'm calling to tell you this, but her influenza test was positive!" He had a prescription for Tamiflu at the desk for us to pick up in the morning when the pharmacy opened.
I was crazy worried about giving this to her, but the benefits were going to greatly outweigh the risks and with Kara's respiratory history this was something we needed to do. Kara made it through the five days of Tamiflu exceptionally well and we were able to get her through the virus at home until the following Monday when I brought her back in to her primary. She had another chest x-ray which showed questionable pneumonia, but again, we were able to get her through it with the nebs and medications at home.
Close to two weeks after the flu diagnosis, we were still noticing that she had a really icky cough but seemed better otherwise. The conversation between Kara's Primary and myself, and the Allergist and myself was whether or not we should put her on Prednisone to help with that. If she went on Prednisone we wouldn't be able to do a food trial and at this point, we are trying so hard to build her tiny diet. I ended up not filling the prescription and went on with a trial. She is still having some barking cough symptoms here and there but the nebs are doing their job and we are hopefully through this!
Wednesday, February 8, 2012
The Last Month
Wow, nothing like leaving you hanging!!! So sorry!! It seems like I could name every post lately "Update" because I've been awful about updating!
Kara's second set of labs turned out to be ok. She does have high antibodies so we are keeping a close eye symptoms, which is actually quite comical if you know the symptoms of hypothyroidism, Kara, and two year olds in general! We will be going back to the endocrinologist at the beginning of April for another work up to see if we can truly relax about all this thyroid business!
Kara continues to be up and down. Her moods swings are terrible but when she's happy, she's the best little girl, playing nicely, entertaining herself. Her appetite is non-existent one day and we can barely get her to drink her formula, some days all she will drink is formula, and other days we can't seem to get enough food into her. Again, typical two year old but what IS typical with her?
We did a beef trial and it seemed to go ok. We called it a pass two days ago, however she has her days where she is all over the place - lots of crying, clinginess, all out of sorts and we finally give her some motrin after not knowing what else to do, and she settles down. We know she still has some stomach pain but that slowly seems to be getting better as well. All in all, we aren't getting very far but she has been stable and not losing foods again, so that is all that matters, right?
Kara's second set of labs turned out to be ok. She does have high antibodies so we are keeping a close eye symptoms, which is actually quite comical if you know the symptoms of hypothyroidism, Kara, and two year olds in general! We will be going back to the endocrinologist at the beginning of April for another work up to see if we can truly relax about all this thyroid business!
Kara continues to be up and down. Her moods swings are terrible but when she's happy, she's the best little girl, playing nicely, entertaining herself. Her appetite is non-existent one day and we can barely get her to drink her formula, some days all she will drink is formula, and other days we can't seem to get enough food into her. Again, typical two year old but what IS typical with her?
We did a beef trial and it seemed to go ok. We called it a pass two days ago, however she has her days where she is all over the place - lots of crying, clinginess, all out of sorts and we finally give her some motrin after not knowing what else to do, and she settles down. We know she still has some stomach pain but that slowly seems to be getting better as well. All in all, we aren't getting very far but she has been stable and not losing foods again, so that is all that matters, right?
Tuesday, January 10, 2012
Waiting for Results
I received a call Friday morning after having Kara's additional lab work done for her tsh levels. It was from Pediatric Endocrinology at Children's and because of how low Kara's TSH level was, they wanted her in right away. Tuesday morning, the 3rd, we headed over there for yet another appointment with yet another specialist.
This appointment scared me. The doctor explained why we needed to be seen right away, when the normal waiting list is 6-8 weeks out. This was pretty serious. I answered question after question after giving another full life history of Kara, myself and our families. Thank goodness my Mom was there with me!
Did you know that sleeplessness is a sign of hyperthyroidism and other thyroid relaed diseases? And moodiness? Once she started asking the questions, I wasn't sure how to answer. Just the night before I was explaining how hot and cold Kara is with her mood! I told the doctor that she's extremely moody, but how much of it is from being "just two", how much of it is FPIES complications and her just.not.feeling.good, and what if all this really is because of her non-existant TSH? Kara's health history really complicates things! Because of her complex history, the doctor is taking things pretty seriously. We had more blood drawn to test for more labs (SERIOUSLY!) and the doctor explained that if the preliminaries came back looking ok she'd let me know the next few days and we'd have a follow up in three months. If the preliminaries came back looking more complicated, she'd call me this week and we'd go from there. It's Tuesday evening, a week later, and I have heard nothing. I have been a wreck, to say the least, about this lack of news. If the results are not what we wanted, Kara is going to have to go through another round of testing, and I don't even want to know the details of that, at this point.
Today, a week after the appointment, I finally an beginning to process things a little better, but with that, my anxiety is growing. Last week I was sad. My heart just hurt so bad for Kara. I made the comment "What are the chances that one more thing is wrong?", then realizing that we have so many different things going on, and really, what ARE the chances? Lately the odds have been against us, that's for sure!
This appointment scared me. The doctor explained why we needed to be seen right away, when the normal waiting list is 6-8 weeks out. This was pretty serious. I answered question after question after giving another full life history of Kara, myself and our families. Thank goodness my Mom was there with me!
Did you know that sleeplessness is a sign of hyperthyroidism and other thyroid relaed diseases? And moodiness? Once she started asking the questions, I wasn't sure how to answer. Just the night before I was explaining how hot and cold Kara is with her mood! I told the doctor that she's extremely moody, but how much of it is from being "just two", how much of it is FPIES complications and her just.not.feeling.good, and what if all this really is because of her non-existant TSH? Kara's health history really complicates things! Because of her complex history, the doctor is taking things pretty seriously. We had more blood drawn to test for more labs (SERIOUSLY!) and the doctor explained that if the preliminaries came back looking ok she'd let me know the next few days and we'd have a follow up in three months. If the preliminaries came back looking more complicated, she'd call me this week and we'd go from there. It's Tuesday evening, a week later, and I have heard nothing. I have been a wreck, to say the least, about this lack of news. If the results are not what we wanted, Kara is going to have to go through another round of testing, and I don't even want to know the details of that, at this point.
Today, a week after the appointment, I finally an beginning to process things a little better, but with that, my anxiety is growing. Last week I was sad. My heart just hurt so bad for Kara. I made the comment "What are the chances that one more thing is wrong?", then realizing that we have so many different things going on, and really, what ARE the chances? Lately the odds have been against us, that's for sure!
Re-trial
Well, we called it quits on chicken. It's just too difficult to do a trial when it's a battle to get Kara to eat the food. We have now moved on to our apple re-trial, a food that she is much more likely to eat.
So far there has been nothing out of the ordinary. She's has it about 3 or 4 times now. I'd like to think that if it was going to cause a problem, that we would have seen that problem by now, but we will continue with the trial for the 14 day total. She is loving having apple back in her diet. She has gotten quite sick of potato and sweet potato and doesn't seem to "yike" (like) anything lately! I just hope that apple continues to like her!
So far there has been nothing out of the ordinary. She's has it about 3 or 4 times now. I'd like to think that if it was going to cause a problem, that we would have seen that problem by now, but we will continue with the trial for the 14 day total. She is loving having apple back in her diet. She has gotten quite sick of potato and sweet potato and doesn't seem to "yike" (like) anything lately! I just hope that apple continues to like her!
Wednesday, December 28, 2011
Following Up
We followed up with Kara's allergist last Tuesday, which meant another trip to the cities, less than two days after getting home from there! I had called the allergist's office on Monday morning to let them know what happened over the weekend and they wanted to see her the next day, so, back we went!
I didn't have records or anything yet but the doctor and I talked about the circumstances of everything that happened. We decided to RAST test Kara for apple, due to the reaction and the hives, as well as RAST test a few other foods. I explained that I wanted her tested for corn. If Kara simply (ha!) had an IgE allergy to corn, that would explain so much! The reaction, the eosinophilic colitis, the swelling all of late summer and fall...I mean, EVERYTHING! She chose a few foods to add since we were doing blood work anyway, and then repeated the iron labs (Kara's iron saturation has been low in the past). She began asking about some other labs and what her results where from her inpatient stay. She asked about her TSH and I explained that I wasn't aware of Kara ever having that test ran, so that was added to the list as well.
We discussed future food trials and with that, Dr. Ott decided that we needed to re-trial chicken for two weeks since we were fairly certain it wasn't chicken that caused the reaction and then she wants us to re-trial the apple again. This is really scary, in case it was the apple that made her so sick, but if it wasn't, it would be a nice food to have back in her diet. I can only hope that we can recognize symptoms before they get that bad, if that's the case. After those two, it was suggested that we trial spinach. We shall see...
Dr. Ott called a few days later and let us know that Kara's TSH levels are very, very low. She called Kara's primary doctor and it was suggested that she now see an endocrinologist. Add one more specialist to the list, I suppose, but MAN, this has gotten just crazy. This does explain a lot of Kara's symptoms so I can only hope that this finding will help us out. We are waiting on hearing back on an endo appointment but for now, Kara will be going back to the clinic tomorrow for a bunch of lab work that the endocrinologist wants done before we go. Wonderful...
With the holiday celebrations behind us, we gave chicken a go tonight. Kara was so excited to have chicken with the rest of us. She took one bite and that was it. She covered her mouth with both hands if we said the word "chicken". It's hard to do a food trial when she won't eat the food! As we were cleaning up supper, she walked back to the table and took a few more bites on her own time. She's a bit stubborn that way! We are at the two hour mark and things are ok. I hope our night goes ok, chicken would be great to get back in her diet!!!
I didn't have records or anything yet but the doctor and I talked about the circumstances of everything that happened. We decided to RAST test Kara for apple, due to the reaction and the hives, as well as RAST test a few other foods. I explained that I wanted her tested for corn. If Kara simply (ha!) had an IgE allergy to corn, that would explain so much! The reaction, the eosinophilic colitis, the swelling all of late summer and fall...I mean, EVERYTHING! She chose a few foods to add since we were doing blood work anyway, and then repeated the iron labs (Kara's iron saturation has been low in the past). She began asking about some other labs and what her results where from her inpatient stay. She asked about her TSH and I explained that I wasn't aware of Kara ever having that test ran, so that was added to the list as well.
We discussed future food trials and with that, Dr. Ott decided that we needed to re-trial chicken for two weeks since we were fairly certain it wasn't chicken that caused the reaction and then she wants us to re-trial the apple again. This is really scary, in case it was the apple that made her so sick, but if it wasn't, it would be a nice food to have back in her diet. I can only hope that we can recognize symptoms before they get that bad, if that's the case. After those two, it was suggested that we trial spinach. We shall see...
Dr. Ott called a few days later and let us know that Kara's TSH levels are very, very low. She called Kara's primary doctor and it was suggested that she now see an endocrinologist. Add one more specialist to the list, I suppose, but MAN, this has gotten just crazy. This does explain a lot of Kara's symptoms so I can only hope that this finding will help us out. We are waiting on hearing back on an endo appointment but for now, Kara will be going back to the clinic tomorrow for a bunch of lab work that the endocrinologist wants done before we go. Wonderful...
With the holiday celebrations behind us, we gave chicken a go tonight. Kara was so excited to have chicken with the rest of us. She took one bite and that was it. She covered her mouth with both hands if we said the word "chicken". It's hard to do a food trial when she won't eat the food! As we were cleaning up supper, she walked back to the table and took a few more bites on her own time. She's a bit stubborn that way! We are at the two hour mark and things are ok. I hope our night goes ok, chicken would be great to get back in her diet!!!
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