Here we are again...the day before a scope. My friend Glendia keeps asking me if I'm nervous yet, but I've decided to go with the mentality of 'what's the point'? It doesn't matter how you prepare yourself before a scope...you're never ready for the news. I figure that since the last one showed absolutely no improvement, I'm hoping for the best and preparing for the worst.
After our original diagnosis, we tried just treating with swallowed steroids (pulmicort splenda slurry). We thought we were one of those unique cases of EoE where Gavin could eat anything as long as he took the steroids. Well, we were wrong. So, we took a baby step down the road of food elimination diets. While most doctors would recommend taking the top six allergens away right from the start, our wonderful GI gave us a more palatable option of only removing dairy and soy to start. Since Gavin has eaten all foods his whole life, and since the thought of providing top 6 free meals was daunting to me, we felt this was the right choice for our family.
Removing dairy and soy from Gavin's diet was challenging at first (to say the least), but with the help of friends, online support, and many natural food stores within our reach, we learned quickly and adapted. Gavin immediately started eating more and having an appetite again, which was encouraging. In addition to the elimination diet, we also changed his steroid treatment to Flovent. The Flovent comes in an inhaler and would typically be inhaled for asthma treatment, but since the inflammation is in Gavin's esophagus, he puffs the medicine into his mouth and then swallows it, instead of breathing it in. The main side effect of swallowed steroids is thrush, a yeast infection in the esophagus, since he can't eat or drink anything after taking it. We did have a bout with thrush already, but the 21 day treatment cleared it up.
Unless this scope shows no eosinophils, we will proceed to the full top six elimination diet, which means removing wheat, eggs, fish/shellfish, and peanuts/tree nuts. It will be a hard transition, especially for Gavin, but I have much more confidence now than I did when we faced this option a few months ago. I'm praying like crazy for a miracle because no mother wants to take food away from her child, even when it is to make them better. The next few months include many holidays focused around food and Gavin's 6th birthday, and it breaks my heart to think about how it will be, but I have to stop myself from looking too far down the road yet. Let's get through the week and see what the numbers are, and then we will hold tight to each other, draw strength from God, and face whatever comes next.
Thank you all for your continued prayers and support. It carries me through the hard times and helps me focus on how lucky we are for what we do have, which is a lot of love. I'll update tomorrow and let you know how the procedure goes.
Tuesday, September 6, 2011
Monday, May 30, 2011
The time has come to start eliminating foods...
 |
| EoE buddies |
Where to begin. Well I guess I should first apologize for taking so long to post the results of Gavin's scope. As many of you who deal with EoE know, no matter what you prepare yourself for, it never quite goes the way you think it will.
This was Gavin's second endoscopy. His first scope was last July when he was diagnosed, and this one was to determine if the swallowed steroid treatment was working. Going into the procedure, we were hoping for a clean scope, meaning no eosinophils and no inflammation or furrowing, but would have been happy with a low number. The scope experience was much more fun this time because Gavin's friends Camden and Lawson were scheduled for their scopes on the same day, and I'm friends with their mom, so the boys and I both had some support. We saw our friends, got Gavin prepped, and then I held his hands while he went to la-la land. There I was again, sitting in the consultation room waiting for news while I entrusted the nurses and doctors with my child's life. Last time, the waiting was the worst part. This time, the news was the worst part. Gavin's doctor came into the room and said that Gavin's esophagus looked like one of a newly diagnosed EoE patient. My heart sank. I knew that we would have to wait for the pathology results from the biopsies, but he was basically telling me that it looked like the steroid treatment had done nothing.
 |
| in recovery |
"Don't be discouraged" were his words to me. So I tried to hang on through the next two days while I waited painfully for the numbers to come back. Two days later I spoke with the nurse and she told me that Gavin had 53 EOS (eosinophils) per HPF (high powered field). There was no miracle. The numbers only confirmed what the doctor had seen. There was very little change from his first scope, where he had 59 EOS per HPF. I didn't know exactly what this meant for treatment, but I knew the steroids alone were not doing the job. Our GI doctor was going to consult with our Allergist to discuss increasing the steroids, eliminating foods, or both. By the time I got the call from the GI, I knew what we were going to have to do. In the words of my 7 year old daughter, "Gavin's not one of the lucky EoE kids who can eat anything anymore, is he?"
So it's time to start making some tough decisions. I knew the day would come, but I really thought we had more time before we had to take foods away from Gavin. Both doctors think we should begin an elimination diet, one just proposes a more conservative plan than the other. Gavin's GI thinks it would be okay to start by removing only dairy and soy instead of all of the top 6 EoE allergens (milk, soy, eggs, wheat, peanuts/tree nuts, and seafood). We have an appointment with the allergist tomorrow, so I'll have a better idea of his suggestion, but it sounded like he typically recommends removing the top 6. We also have an appointment with the nutritionist to make sure Gavin gets what he needs as we remove foods. There are many many families out there who deal with food allergies, whose children can't eat what other kids can, and who have to tell their kids no for their own good, but this is a big first for our family, and it's a sad day.
For now I will remind myself that my child still gets to eat food. That as of today, he has no tubes going into his body to give him the nutrients he needs to grow. I will be as positive as I can for him, and remind him that these changes are to help him heal and feel better. I'm a 'glass half full' kind of gal, and I know it could be (and probably one day will be) a lot worse. But today I mourn a loss for my child as I prepare to take something away from him instead of giving to him, and I curse this disease. I will have a good cry tonight, and tomorrow I will look on the bright side.
Monday, May 16, 2011
Where I'm at...
I started this blog 6 months ago. I thought it would be a good place for me to express my feelings and possibly a theraputic way of dealing with our new normal. The thing is, I haven't written very much. I've been thinking about it lately, and trying to figure out why. I think it is because of the extremes of the past few months. Some days things are going so well that I don't really have much to write about. Gavin is eating just like he was before, and other than his new steroid 'slurry' that he takes twice a day, things really haven't changed that much. On the flip side, when it's bad (either because he's sick or I'm overwhelmed with doctor appts/medicine refills/research) there's no time for telling stories...it's just basic survival, and trying to figure out this EoE monster and how it works so we can beat it, or at least take less of a beating the next time it hits.
The extremes are tough. Some days we go about our day just like everyone else. There is lots of laughter in our house, lots of tickling, lots of sibling bickering, all of those things that make happy family memories. And then there are the days where I throw myself into learning more about this disease and can't do anything else...to the point that real life is just passing by in the meantime. I guess the bottom line is that 6 months ago I was told that my child, my baby, had an incurable illness that we will fight for the rest of his life. That moment changed everything, yet nothing changed.
This week is a very important one for our family, and not only because it is National Eosinophil Awareness Week. It is also Gavin's first endoscopy since the one last July that led to his diagnosis. Since the only way to really tell if his treatment is working is to biopsy his esophagus, this will tell us if the steroids are working enough or not. I'll try to quickly explain my understanding of how this goes. During an endoscopy, they will biopsy multiple locations in Gavin's GI tract. Each biopsy will be sent to a pathologist, who will look to see how many eosinophils (EOS) are present per high powered field (HPF). His first scope last year showed 59 EOS per HPF. If this scope shows no EOS (maybe 1 even), they would consider him 'in remission' and we would continue treatment. Anything more than 0-1 will mean some decisions on our part. A count in the single digits or even low teens might mean that we have it mostly under control, and any count above that means the steroids alone are not doing the job, and we may need to talk about taking food away. I'm trying my best to stay calm, knowing there's nothing I can do by worrying, but I have this sick feeling in my stomach that I just can't shake. At times like this, all I can do is draw on my Faith, my Family, and my Friends.
Thank you all for taking the time to read this. The blessing here is that I don't take a moment for granted. I tell my kids I love them until they don't even hear me anymore. I kiss them until they squirm away in protest. I say yes when Gavin wants to play with Legos and I'm folding laundry. And I lay there an extra few minutes after they fall asleep to soak it all in, to thank God for what we have, and to draw from those moments the strength to get through the next day.
The extremes are tough. Some days we go about our day just like everyone else. There is lots of laughter in our house, lots of tickling, lots of sibling bickering, all of those things that make happy family memories. And then there are the days where I throw myself into learning more about this disease and can't do anything else...to the point that real life is just passing by in the meantime. I guess the bottom line is that 6 months ago I was told that my child, my baby, had an incurable illness that we will fight for the rest of his life. That moment changed everything, yet nothing changed.
This week is a very important one for our family, and not only because it is National Eosinophil Awareness Week. It is also Gavin's first endoscopy since the one last July that led to his diagnosis. Since the only way to really tell if his treatment is working is to biopsy his esophagus, this will tell us if the steroids are working enough or not. I'll try to quickly explain my understanding of how this goes. During an endoscopy, they will biopsy multiple locations in Gavin's GI tract. Each biopsy will be sent to a pathologist, who will look to see how many eosinophils (EOS) are present per high powered field (HPF). His first scope last year showed 59 EOS per HPF. If this scope shows no EOS (maybe 1 even), they would consider him 'in remission' and we would continue treatment. Anything more than 0-1 will mean some decisions on our part. A count in the single digits or even low teens might mean that we have it mostly under control, and any count above that means the steroids alone are not doing the job, and we may need to talk about taking food away. I'm trying my best to stay calm, knowing there's nothing I can do by worrying, but I have this sick feeling in my stomach that I just can't shake. At times like this, all I can do is draw on my Faith, my Family, and my Friends.
Thank you all for taking the time to read this. The blessing here is that I don't take a moment for granted. I tell my kids I love them until they don't even hear me anymore. I kiss them until they squirm away in protest. I say yes when Gavin wants to play with Legos and I'm folding laundry. And I lay there an extra few minutes after they fall asleep to soak it all in, to thank God for what we have, and to draw from those moments the strength to get through the next day.
Sunday, May 15, 2011
Friday, April 1, 2011
EE is now EoE…What’s up with that?
"You may have noticed that APFED is now using the abbreviation EoE for eosinophilic esophagitis. For many years, both EE and EoE were used in the medical literature and by the medical community to denote eosinophilic esophagitis. Eosinophilic esophagitis was primarily described in the pediatric literature, with the “EE” abbreviation catching on quickly. However, adult gastroenterologists had long been using the abbreviation “EE” to denote erosive esophagitis, a problem associated with GERD.
To avoid confusion, the leaders and researchers in the field suggested using EoE as a unique identifiable abbreviation to denote eosinophilic esophagitis. Thus, going forward, expect to see “EoE” as the accepted abbreviation for eosinophilic esophagitis."
-taken from the APFED Spring 2011 Newsletter. If you are not a member, join today for access to the full newsletter and to support the cause http://www.apfed.org/
To avoid confusion, the leaders and researchers in the field suggested using EoE as a unique identifiable abbreviation to denote eosinophilic esophagitis. Thus, going forward, expect to see “EoE” as the accepted abbreviation for eosinophilic esophagitis."
-taken from the APFED Spring 2011 Newsletter. If you are not a member, join today for access to the full newsletter and to support the cause http://www.apfed.org/
Monday, December 6, 2010
One of THOSE nights...
We had a much too eventful night last night. Gavin went to bed with nothing more than a slight cough now and then and woke at midnight struggling to breathe, pale as a ghost, and shivering uncontrollably. Called 911. Firetruck with lights and all in cul-de-sac. Pulse ox was 100% but still struggling to breathe. Hit him with the mother load of steroids and got it under control. He spent the rest of the night with the munchies while Matt and I alternately snuck a few hrs sleep. Kaylin slept peacefully the entire time and had no idea anything had happened. G's lungs are clear today and the best the ped could come up with was maybe he choked on some mucus while sleeping and had a bronchial spasm. Really?? EOS peeps...any thoughts?
Deep breath. Need sleep.
Deep breath. Need sleep.
Saturday, November 6, 2010
Warning: This is long. Very very long.
Tonight is not going as planned. I guess that's the theme around here lately. It's midnight, which is not so terribly late, except that I have to get up at 5:45am to set up a craft booth at the Holiday Market, at which I will need to be cheerily greeting attendees for over 5 hours. But now I'm up and I can't turn my brain off, so I figured this was a perfect time to update the blog.
Hmmm, where to begin? I guess I'll need to pick which kid to start with. Since the blog title does have his name in it, let's start with Gavin...
As a recap, Gavin was diagnosed with EE in late July, we started treatment in August, tested negative to all skin prick testing in September, and have had a pleasantly uneventful first few months of school. With no known food allergies to go on, we decided to follow the doctor's recommended treatment of swallowed steroids. I want to know more before making a decision to take food away, and if I've learned anything from my new EOS family on Facebook, it's that if you make too many changes at once, you don't know which changes are causing the results - good or bad.
Soooo, I kept thinking about updating the blog, but I felt guilty. Gavin has been doing so well, and so many of the EOS kids are struggling with so much, I just couldn't bring myself to blog about our trivial events. I'm starting to realize though, that even though my son is still able to eat all foods, and he's never tasted elemental formula, or eaten through a tube, or been doubled over in pain, or any of the other things these kids battle each day, it's out there looming in our future and waiting for us. I now speak an entirely new language than I did 3 months ago. It's the EOS language, and if you're part of the 'family' you know exactly what I mean. I read every FB thread to learn more and gather information about doctors and centers and procedures so I can make informed decisions when the time comes. My life has changed drastically, even though my family looks exactly the same as we did before, and I'm slowly learning how to accept that.
Ok, back on track Elise, this part was supposed to be about Gavin. So the sick hit our house about 2 weeks ago. It started with croup. 3 days of steroids took care of the barking and turned my angel into a monster who, at his worst, took off his shoes and threw them at my head while I was driving - for not stopping to get him a milkshake at Chick-fil-a. At least he didn't start biting this time. Anyway, the croup morphed into a common cold, which of course is never 'common' for Gavin since it sets off his asthma. At least he has a 'neb friend' at school and they do their breathing treatments together. The cold symptoms have stuck around way too long and the cough has moved in, which brings us to tonight. The kids and I all went to bed early so we could be nice and rested for tomorrow, but then Gavin's coughing started and just didn't stop. The albuterol inhaler (which we refer to as 'puffs'), along with saline, nose blowing, water, and extra pillows to elevate his head didn't make a dent, so I sent the boys outside into the cold to see if that would help. They are now downstairs watching Harry Potter while Gavin eats a Dum Dum. Bed time take two in just a bit.
On to the other kid...
To recap, Kaylin has been a snorer since birth. She made so much noise as an infant that I had to move her into her room at 3 weeks just because I couldn't even sleep when she was sleeping. At age 3 we did a sleep study to confirm she had sleep apnea, due to her extremely large tonsils, and she ended up with surgery to have her tonsils and adenoids removed and ear tubes put in. This fixed the sleep apnea and ear infections, but she has struggled ever since with chronic congestion, fluid in her ears, and snoring. The ENT suggested a CT scan a while ago, but the prerequisite was a month of antibiotics and I just couldn't bring myself to give a healthy child that much antibiotics, so we went with Plan B, which was allergy testing. After skin prick and intradermal testing with not one single positive, the allergist suggested the CT scan. Her recent hearing test showed some hearing loss in both ears due to retracted ear drums, so we need some answers. I sucked it up and gave her a month of Omnicef and prepped her for the scan.
Hmmm, where to begin? I guess I'll need to pick which kid to start with. Since the blog title does have his name in it, let's start with Gavin...
As a recap, Gavin was diagnosed with EE in late July, we started treatment in August, tested negative to all skin prick testing in September, and have had a pleasantly uneventful first few months of school. With no known food allergies to go on, we decided to follow the doctor's recommended treatment of swallowed steroids. I want to know more before making a decision to take food away, and if I've learned anything from my new EOS family on Facebook, it's that if you make too many changes at once, you don't know which changes are causing the results - good or bad.
Soooo, I kept thinking about updating the blog, but I felt guilty. Gavin has been doing so well, and so many of the EOS kids are struggling with so much, I just couldn't bring myself to blog about our trivial events. I'm starting to realize though, that even though my son is still able to eat all foods, and he's never tasted elemental formula, or eaten through a tube, or been doubled over in pain, or any of the other things these kids battle each day, it's out there looming in our future and waiting for us. I now speak an entirely new language than I did 3 months ago. It's the EOS language, and if you're part of the 'family' you know exactly what I mean. I read every FB thread to learn more and gather information about doctors and centers and procedures so I can make informed decisions when the time comes. My life has changed drastically, even though my family looks exactly the same as we did before, and I'm slowly learning how to accept that.
Ok, back on track Elise, this part was supposed to be about Gavin. So the sick hit our house about 2 weeks ago. It started with croup. 3 days of steroids took care of the barking and turned my angel into a monster who, at his worst, took off his shoes and threw them at my head while I was driving - for not stopping to get him a milkshake at Chick-fil-a. At least he didn't start biting this time. Anyway, the croup morphed into a common cold, which of course is never 'common' for Gavin since it sets off his asthma. At least he has a 'neb friend' at school and they do their breathing treatments together. The cold symptoms have stuck around way too long and the cough has moved in, which brings us to tonight. The kids and I all went to bed early so we could be nice and rested for tomorrow, but then Gavin's coughing started and just didn't stop. The albuterol inhaler (which we refer to as 'puffs'), along with saline, nose blowing, water, and extra pillows to elevate his head didn't make a dent, so I sent the boys outside into the cold to see if that would help. They are now downstairs watching Harry Potter while Gavin eats a Dum Dum. Bed time take two in just a bit.
On to the other kid...
To recap, Kaylin has been a snorer since birth. She made so much noise as an infant that I had to move her into her room at 3 weeks just because I couldn't even sleep when she was sleeping. At age 3 we did a sleep study to confirm she had sleep apnea, due to her extremely large tonsils, and she ended up with surgery to have her tonsils and adenoids removed and ear tubes put in. This fixed the sleep apnea and ear infections, but she has struggled ever since with chronic congestion, fluid in her ears, and snoring. The ENT suggested a CT scan a while ago, but the prerequisite was a month of antibiotics and I just couldn't bring myself to give a healthy child that much antibiotics, so we went with Plan B, which was allergy testing. After skin prick and intradermal testing with not one single positive, the allergist suggested the CT scan. Her recent hearing test showed some hearing loss in both ears due to retracted ear drums, so we need some answers. I sucked it up and gave her a month of Omnicef and prepped her for the scan.
The day after Gavin came down with croup, Kaylin had her CT scan. Matt took her down to Scottish Rite and reported back that it was very easy. She got her nervous face at one point (see photo), but Matt said he was able to talk to her the whole time and tell her stories to distract her, and it was over before they knew it.
We follow up with the ENT on Nov. 16 to find out if she recommends sinus surgery. To add to her story, Kaylin woke up about 2:00 am on Tues night/Wed morning saying her neck hurt. She has been stuck in the same position (with her head tilted down and a little to one side) since then, and can't move her neck. It is called temporary tortacoulis and can be caused by sleeping wrong or when a child's lymph nodes are inflammed after a cold. It is supposed to go away with some rest after a day or two, but now we're at 3 days and of course the week is over and the doctors' offices are closed. I'm crossing my fingers that a good night's sleep and a day of rest tomorrow will fix her up.
In the midst of all this, I got laryngitis and recovered, Matt got laryngitis and is working on the recovery part, and of course I'm behind on bills, housework, work, Girl Scout registrations, and pretty much anything else there is.
HEY!!!! It JUST came to me! I know why Kaylin's neck spazzed out! Tuesday night she went with my mom to the Sound of Music Sing-a-long at the movie theatre. Kaylin was so excited she wanted to sit in the very first row, so she sat there, looking up at the screen while singing, for over 3 hours. That HAD to be it!
And now...I can go to sleep. For 4 hours. Goodnight.
Subscribe to:
Posts (Atom)