The APFED conference is back in San Diego this year! It's been 3 1/2 years since our last conference and our lives have changed so much since then. The last time, I was 8 months pregnant with our 3rd child and worried about the likelihood he would have to deal with Eos. At that point, Kaylin had been on meds for EoE for a year but things were still not right but we had still not removed any foods at all. We learned so much and realized we were definitely not alone. Less than a year later, Kaylin had to start removing removing foods and thanks to all the information we got at the conference, we weren't completely overwhelmed.
http://apfed.org/drupal/drupal/annual_conference
Friday, March 23, 2012
Tuesday, March 20, 2012
Eos on Anderson Cooper
Set your DVR's. This Thursday, March 22nd an amazing family is on the Anderson Cooper show (daytime show, not CNN) to raise awareness on Eosinophilic Disease.
Here's the info from the AC website. Check out the link below to view the preview and to find out when it's on in your area.
"What if your child were deathly allergic to food? Anderson speaks with a desperate mom, Cara, whose son, Joshua, suffers from a rare genetic condition that makes even the smell of certain foods potentially fatal. Cara's husband, Brant, and older son, Jacob, join Anderson to discuss how the family copes with this rare condition... and the hope they have for a cure."
http://www.andersoncooper.com/episodes/kathy-bates-the-boy-who-can-not-eat/
Here's the info from the AC website. Check out the link below to view the preview and to find out when it's on in your area.
"What if your child were deathly allergic to food? Anderson speaks with a desperate mom, Cara, whose son, Joshua, suffers from a rare genetic condition that makes even the smell of certain foods potentially fatal. Cara's husband, Brant, and older son, Jacob, join Anderson to discuss how the family copes with this rare condition... and the hope they have for a cure."
http://www.andersoncooper.com/episodes/kathy-bates-the-boy-who-can-not-eat/
Monday, August 8, 2011
Why Meds?
It's funny when we tell friends or new acquaintance about Kaylin having EoE, the first response is usually, "Is there medication you can give her?" But on the opposite side, when we explain she's on meds to friends in the EoE community, they ask "why?" We also get a lot of questions from patients going down the road to using meds and ask if they really work and all the fun details. Each kid is so different and at different states of this disease that it really varies whether it's a good option but for us, it was the only option.
Kaylin was always a fussy baby, fussy eater, fussy sleeper but she was healthy and happy for the most part. Looking back, we now know how much the "fussy" part had to do with the EoE but at the time, so many of those things had just been explained away as "normal kid stuff." When we got her diagnosis, we were given the 3 options of treatment. First she was tested for allergies via skin prick testing and they asked us a million questions about foods and everything lead no absolutely no hint of having food triggers or food allergies. The three treatment options were Medication, Top 8 Elimination and Formula. Well immediately formula was off the table. She had been on a full diet and growing and the symptoms we knew about would come and go and she'd seem fine for weeks. Kaylin was starting preschool so the thought of having to completely change her diet and remove Wheat, Soy, Dairy, Egg, Fish, Shellfish, Peanuts and Treenuts seemed not only ridiculous but cruel. She was already picky and never seemed to eat enough, we thought there would be NOTHING left for her to eat that she actually would eat. When I've said it seemed cruel before, I get so many of the EoE parents in an uproar but for our daughter at age 4, it would have been. As far as she was concerned, there was nothing wrong with her. We also worried about her complying. As we've since had to remove foods from her diet, we know now that we were right because even now that she correlates certain foods with pain, she still struggles with staying away from those foods. Knowing absolutely nothing about food allergies or top 8 diets, they were basically telling us we could give her a medication that is working in most kids or turn our entire lives upside down with diet changes. It was pretty simple.
The medication worked within weeks. We noticed she stopped spitting up almost immediately, this was her major symptom we knew about at the time. We didn't see any symptoms from the medication and the scopes proved it was working.
Kaylin was always a fussy baby, fussy eater, fussy sleeper but she was healthy and happy for the most part. Looking back, we now know how much the "fussy" part had to do with the EoE but at the time, so many of those things had just been explained away as "normal kid stuff." When we got her diagnosis, we were given the 3 options of treatment. First she was tested for allergies via skin prick testing and they asked us a million questions about foods and everything lead no absolutely no hint of having food triggers or food allergies. The three treatment options were Medication, Top 8 Elimination and Formula. Well immediately formula was off the table. She had been on a full diet and growing and the symptoms we knew about would come and go and she'd seem fine for weeks. Kaylin was starting preschool so the thought of having to completely change her diet and remove Wheat, Soy, Dairy, Egg, Fish, Shellfish, Peanuts and Treenuts seemed not only ridiculous but cruel. She was already picky and never seemed to eat enough, we thought there would be NOTHING left for her to eat that she actually would eat. When I've said it seemed cruel before, I get so many of the EoE parents in an uproar but for our daughter at age 4, it would have been. As far as she was concerned, there was nothing wrong with her. We also worried about her complying. As we've since had to remove foods from her diet, we know now that we were right because even now that she correlates certain foods with pain, she still struggles with staying away from those foods. Knowing absolutely nothing about food allergies or top 8 diets, they were basically telling us we could give her a medication that is working in most kids or turn our entire lives upside down with diet changes. It was pretty simple.
The medication worked within weeks. We noticed she stopped spitting up almost immediately, this was her major symptom we knew about at the time. We didn't see any symptoms from the medication and the scopes proved it was working.
Thursday, August 4, 2011
School's Here!!!
Well, almost. Kaylin starts school next week and kinda last minute, we've decided to move her from our wonderful charter school to the regular elementary school. There was a lot to that decision but school hasn't even started and we're realizing it's the right move.
On Monday, we registered Kaylin for school and I mentioned to the school receptionist that Kaylin has food allergies and I wanted to see when the nurse would be in. She immediately got the health clerk who is at the school each day who I told about the EE and she took my information. Well, by Wednesday I had an appointment scheduled to meet with the nurse that spreads her time between four schools. Although we had a teacher last year that was amazing at dealing with food in the classroom, administration was less than helpful and I always worried about when she was in another classroom or what to do next year when her sister with peanut allergy starts Kindergarten. A full time health clerk and nurse needed to be involved instead of a receptionist with a pair of crutches.
Our meeting with the nurse went amazing. I had everything written up for her and she asked for permission to share it with Kaylin's teacher. She went through our plan and understood the temptations because Kaylin is only 8. But when Kaylin came in to introduce herself, the nurse asked Kaylin to help us keep her healthy. She explained to Kaylin that we would have snacks for her in the classroom as well as the nurse's office but that Kaylin needed to be responsible and be part of the process. She also reminded her that eating things her friends gave her without the teacher or parent was not allowed. She told her that if she's experiencing pain, she lay down in the nurse's office and use the restroom but the goal is to get her back into class. Hallelujah!!! I completely understand how difficult it is on Kaylin to be on a restricted diet at school but I also know she is the kid that will rise to meet expectations. It's so nice to know that they are making her part of this process and holding her accountable as well as helping her. Oh and the best part....she knew was Eosinophilic Esophagitis was!!!
On Monday, we registered Kaylin for school and I mentioned to the school receptionist that Kaylin has food allergies and I wanted to see when the nurse would be in. She immediately got the health clerk who is at the school each day who I told about the EE and she took my information. Well, by Wednesday I had an appointment scheduled to meet with the nurse that spreads her time between four schools. Although we had a teacher last year that was amazing at dealing with food in the classroom, administration was less than helpful and I always worried about when she was in another classroom or what to do next year when her sister with peanut allergy starts Kindergarten. A full time health clerk and nurse needed to be involved instead of a receptionist with a pair of crutches.
Our meeting with the nurse went amazing. I had everything written up for her and she asked for permission to share it with Kaylin's teacher. She went through our plan and understood the temptations because Kaylin is only 8. But when Kaylin came in to introduce herself, the nurse asked Kaylin to help us keep her healthy. She explained to Kaylin that we would have snacks for her in the classroom as well as the nurse's office but that Kaylin needed to be responsible and be part of the process. She also reminded her that eating things her friends gave her without the teacher or parent was not allowed. She told her that if she's experiencing pain, she lay down in the nurse's office and use the restroom but the goal is to get her back into class. Hallelujah!!! I completely understand how difficult it is on Kaylin to be on a restricted diet at school but I also know she is the kid that will rise to meet expectations. It's so nice to know that they are making her part of this process and holding her accountable as well as helping her. Oh and the best part....she knew was Eosinophilic Esophagitis was!!!
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