Hunter had his second endoscopy as part of the research study this morning. Visually, everything looked PERFECT!!! We do need to wait until the biopsies come back from pathology to be sure nothing is found there. Although a visual scope is a good sign, often times, the biopsies will still show eosinophils, so we need to wait and see. We should have details by the middle of next week.
Everything went well overall. I was a little disappointed about one thing though....Hunter HATES the "stinky mask," (general anesthesia), so we give him versed before the procedure so he's out of it enough to not even realize he's getting the mask. It saves us ALL a lot of stress. I promised him we would do this again. They say it's supposed to work in about 10 minutes or so, but for Hunter it doesn't seem to work for closer to 30 minutes.
Well, today, they were way behind. He was supposed to have the procedure at 7:30am. At 7:15, I mentioned again that he needed the versed and that it takes about 1/2 hour for him to get relaxed enough with it. By the time the nurse came with it, it was already about 7:30. She seemed very rushed and quickly squirt it in his mouth, so some spilled down his chin, then rushed out again. They waited about 10 minutes and took us back. He was a little "floppy" but certainly not "out of it." I'm mad at myself for not speaking up. I usually do in situations like this, but I felt so rushed and just froze and didn't say anything. Hunter was still very coherent and fought the mask.
When we got home, Hunter kept asking me over and over why they gave him the mask...that they were supposed to make sure the "special medicine" (versed) would help him. He remembered every little part about being in that room, what people said in there, and getting the mask. He was upset that they did that after we all promised it wouldn't go that way. I felt really bad, like I let him down. I learned my lesson from it though and will be sure to speak up for him next time, no matter how minor it may seem to us. I know it's a big deal for him and this is the least we can do for him with all that he has to go through.
Originally, Hunter was also supposed to have an IV in all day with frequent blood draws as part of the study. We received a very welcome call a week or so ago, saying that they reached their quota of how many people had to go through this step, so Hunter no longer needed to do it. Woohoo!
We now taper down the medicine, just once per day for the next week, then 1/2 dose 1x/day for the next two weeks, then we're finished.
Friday, June 19, 2009
Wednesday, June 10, 2009
National Jewish and The Children's Hospital in Denver, CO - just two weeks away!
Our flights are booked. I'm taking the kids by myself this year. We leave on Wednesday, June 24th and return on Saturday, June 27th, so it'll be much shorter and easier this year.
We have back to back appointments on Thursday at National Jewish (NJ) from 9am-5:30pm with an hour and fifteen minute lunch break. We'll do a bunch of allergy testing for all three kids, meet with the allergist and the GI...times this by 3 and it takes all day long.
On Friday, we head over to The Children's Hospital (TCH) for upper endoscopies for both Kaleigh and Tanner. That's going to be a rough day as they're scheduled at 2pm and 2:45 respectively with no solid foods for 8 hours prior and no liquids for 3 hours prior. We'll then have the afternoon to rest and take it easy. We leave back home to Phoenix the following day around noon.
Hunter will be having an endoscopy here locally next week as part of the research study. I'm excited to see how that goes and if there's any difference in the number of eosinophils from his last scope 3 months ago.
We have back to back appointments on Thursday at National Jewish (NJ) from 9am-5:30pm with an hour and fifteen minute lunch break. We'll do a bunch of allergy testing for all three kids, meet with the allergist and the GI...times this by 3 and it takes all day long.
On Friday, we head over to The Children's Hospital (TCH) for upper endoscopies for both Kaleigh and Tanner. That's going to be a rough day as they're scheduled at 2pm and 2:45 respectively with no solid foods for 8 hours prior and no liquids for 3 hours prior. We'll then have the afternoon to rest and take it easy. We leave back home to Phoenix the following day around noon.
Hunter will be having an endoscopy here locally next week as part of the research study. I'm excited to see how that goes and if there's any difference in the number of eosinophils from his last scope 3 months ago.
Sunday, June 7, 2009
Thursday, May 28, 2009
The Budesonide Study (Appointment #4...I think)
Hunter had his easiest appointment yet today. This one did NOT require a blood draw...yippee!!! It was just vitals and quick exam/symptom check by the doctor. He has been having undigested food in his stool (I'm getting pretty good at all these medical terms, aren't I?!) quite a bit lately but it's hard to tell if it's something viral or what. Overall, he is still doing very well...happy and full of energy. He was so nervous though, asking every single person we came in contact with if they had needles and if they were going to poke him today. :(
In three weeks, he'll have another endoscopy to check for eosinophils again. This will be interesting to see if they're still there or have gone away since the one he had done at the beginning of the study. They will also be combining his "big appointment" on this day, so he only has to have the IV put in once. We will stay at the hospital all day (endoscopy time plus 9 hours for the study visit) and have blood draws every hour (or two?) After this, I believe there will only be one more appointment a few weeks later to conclude the study.
In three weeks, he'll have another endoscopy to check for eosinophils again. This will be interesting to see if they're still there or have gone away since the one he had done at the beginning of the study. They will also be combining his "big appointment" on this day, so he only has to have the IV put in once. We will stay at the hospital all day (endoscopy time plus 9 hours for the study visit) and have blood draws every hour (or two?) After this, I believe there will only be one more appointment a few weeks later to conclude the study.
Tuesday, May 26, 2009
So Far, Soy Good
Tanner and Kaleigh have been doing very good overall on soy. They've been getting the bulk of it from edamame. They love popping them out of the pod and eat them hot or cold. They both have had some minor choking/gagging since starting it, but nothing bad enough to warrant removing it from their diet without knowing for sure. We'll wait and see what the biopsies show. If they're bad, we'll know that this was probably a symptom. If not, it was a fluke. They have no other symptoms at all though!
Sunday, May 17, 2009
National Eosinophil Awareness Week
Today marks the first day of National Eosinophil Awareness Week. Beginning last year, and every year going forward, the third week in May is dedicated to spreading awareness and education about eosinophilic disorders.
The following video was created by an Arizona mom who has a child with EE. She spent hundreds of hours planning, shooting, editing, and copying, all for the purpose of spreading awareness as well as educating the public, and hopefully helping in fundraising efforts as well. She is an amateur, but you'd never know it watching it. I think she did a phenomenal job putting it all together.
Along with many other Arizona families, Kaleigh, Hunter, and I all participated. Please take a few minutes to watch if you haven't seen this yet, and feel free to pass on the link to others as well.
I'm having trouble loading the actual video but if you search under "Life Without Food" on youtube, you should be able to view it.
The following video was created by an Arizona mom who has a child with EE. She spent hundreds of hours planning, shooting, editing, and copying, all for the purpose of spreading awareness as well as educating the public, and hopefully helping in fundraising efforts as well. She is an amateur, but you'd never know it watching it. I think she did a phenomenal job putting it all together.
Along with many other Arizona families, Kaleigh, Hunter, and I all participated. Please take a few minutes to watch if you haven't seen this yet, and feel free to pass on the link to others as well.
I'm having trouble loading the actual video but if you search under "Life Without Food" on youtube, you should be able to view it.
Sunday, May 10, 2009
A conversation between Tanner and I the other day
Tanner (very serious): "Mom, can we stay up late tonight?"
Me: " I'm going to be gone all day tomorrow, so you can ask dad since he'll be the one dealing with you tomorrow."
Tanner (laughing hysterically): "YES! Dads always say yes to stuff like this cuz they don't really know how to take care of kids or anything!"
Me: " I'm going to be gone all day tomorrow, so you can ask dad since he'll be the one dealing with you tomorrow."
Tanner (laughing hysterically): "YES! Dads always say yes to stuff like this cuz they don't really know how to take care of kids or anything!"
Friday, May 8, 2009
We're going to Denver again
I got a call the other day from our allergist at National Jewish, or NJ, (#1 respiratory hospital in the U.S. and home of the multi-disciplinary Eosinophilic Center). Here's what he wants us to do:
Tanner Keep peanut and egg, despite 19 eos in mid-esophagus (0 in other areas). AND add in soy!!! Scope next month when we are in Denver.
Kaleigh Continue with egg for another week or so AND add in soy at that point (assuming no reactions to egg)!!! To make it easier on everyone, both Tanner and Kaleigh will start soy at the same time. Scope next month when we are in Denver.
Hunter Continue with study. His 12 weeks will end right before we go to Denver so he'll be having his second endoscopy as part of the study the week before we leave. We will get the slides to Denver where they will determine whether we go backwards, forwards, do some food challenges, look at continuing with budesonide, etc. He will obviously NOT be scoped there since he would've just had one. The dr. did NOT sound like adding foods back in with 15 eos in a couple places was a good idea, so I'm really really hoping that number goes down...whether it's from the environment or the budesonide. They may plan some food challenges for him if the numbers go down. I REALLY REALLY want to add in more foods for him and am getting impatient and occasionally kind of sad about his diet. *He* however, is ok with it for the most part.
He said we will plan on doing all allergy testing and appointments on Day One. Depending how the numbers come back for both allergy testing and scopes, we will talk about adding in the next food (wheat probably) or taking a break for a while.
The following day, Tanner and Kaleigh will be scoped. We are trying to keep our trip short this time around, so we should be free to go home after that. We'll probably stay until Saturday, then head home.
So...official appointment dates are 6/25 and 6/26, with travel probably the day before and the day after! I am a little uneasy about how he wants to proceed with Tanner's diet, but completely trust him at the same time, so I'm going to go with it and hope for the best. I feel confident that if it doesn't go well, that he'll have a good back-up plan. And honestly, both Tanner and Kaleigh have such good diets right now that it wouldn't kill us to have to back track a little...a little disappointing yes, but not the end of the world.
I'm taking the kids by myself this year.
They had to tweak the scheduling a little so I don't have 1 kid getting an edoscopy at TCH (The Children's Hospital) while another is at NJ. Both hospitals are part of the program and not too far from each other...fairly easy drive.
Tanner Keep peanut and egg, despite 19 eos in mid-esophagus (0 in other areas). AND add in soy!!! Scope next month when we are in Denver.
Kaleigh Continue with egg for another week or so AND add in soy at that point (assuming no reactions to egg)!!! To make it easier on everyone, both Tanner and Kaleigh will start soy at the same time. Scope next month when we are in Denver.
Hunter Continue with study. His 12 weeks will end right before we go to Denver so he'll be having his second endoscopy as part of the study the week before we leave. We will get the slides to Denver where they will determine whether we go backwards, forwards, do some food challenges, look at continuing with budesonide, etc. He will obviously NOT be scoped there since he would've just had one. The dr. did NOT sound like adding foods back in with 15 eos in a couple places was a good idea, so I'm really really hoping that number goes down...whether it's from the environment or the budesonide. They may plan some food challenges for him if the numbers go down. I REALLY REALLY want to add in more foods for him and am getting impatient and occasionally kind of sad about his diet. *He* however, is ok with it for the most part.
He said we will plan on doing all allergy testing and appointments on Day One. Depending how the numbers come back for both allergy testing and scopes, we will talk about adding in the next food (wheat probably) or taking a break for a while.
The following day, Tanner and Kaleigh will be scoped. We are trying to keep our trip short this time around, so we should be free to go home after that. We'll probably stay until Saturday, then head home.
So...official appointment dates are 6/25 and 6/26, with travel probably the day before and the day after! I am a little uneasy about how he wants to proceed with Tanner's diet, but completely trust him at the same time, so I'm going to go with it and hope for the best. I feel confident that if it doesn't go well, that he'll have a good back-up plan. And honestly, both Tanner and Kaleigh have such good diets right now that it wouldn't kill us to have to back track a little...a little disappointing yes, but not the end of the world.
I'm taking the kids by myself this year.
They had to tweak the scheduling a little so I don't have 1 kid getting an edoscopy at TCH (The Children's Hospital) while another is at NJ. Both hospitals are part of the program and not too far from each other...fairly easy drive.
Wednesday, May 6, 2009
Allergy Shots
Tanner has been doing allergy shots for a couple years now to help with his environmental allergies. He gets one shot in each arm every visit. When he first started, we were going 2x per week, then 1x per week, then 1x every 2 weeks, until we finally worked up to his "maintenance" dose that he goes in for every 3-4 weeks. We always have to stay at the allergist's office for 30 minutes after the shot is given to watch for reactions. Normally, the sites where the shot was given get just a little bump, like a mosquito bite. They itch, but he's given ice to hold on it while we're there and they spray it with some anti-itch stuff right before we leave.
Normally, it's relatively easy (easy for me to say since I'm not the one getting poked...). He has had a few reactions during this time though, which always reminds us about the seriousness of allergies. Once he had just a localized reaction where his arm from his elbow to armpit turned red and very swollen. It was hot to the touch and itched. This came and went several times over the next couple days. He's also had two times (including one of his recent visits) where he had facial swelling. These are a little more scary to see, but I feel comfortable knowing that we are in the best possible place for a reaction to occur. Honestly, I feel safer in our allergist's office than I would if we were in the ER.
Each time, he's been observed a little longer to make sure it didn't progress (which it didn't) and he's been given extra antihistamines. The following dose, they then split in half and he has to have them a week apart. Then, we go back to our old regimen.
Next month, we have a regular appointment with the allergist to review how it's going and see if we want to continue. The plan typically is to do shots for 3-5 years, then stop for 3-5, then possibly go back on them if symptoms start returning, which they may or may not.
Tanner's symptoms prior to shots were horrible. He would scratch around his eyes and nose until they bled. He also had very uncomfortable hives, eczema and other rashes after he'd play outside, especially in the grass. His hands and feet would turn red, itch and swell after playing in the grass too. We had him allergy tested and he was moderate to high positive for everything in the environment except for dogs (whew! since he's a dog-lover and we have one.) He still takes daily medication to help control some of the symptoms, but has drastically improved since starting the shots. For someone who hates needles and cried his first shot (before it was even given), Tanner is the first person to tell you that it's worth going through it. The shots are nothing compared to what he was feeling before.
Normally, it's relatively easy (easy for me to say since I'm not the one getting poked...). He has had a few reactions during this time though, which always reminds us about the seriousness of allergies. Once he had just a localized reaction where his arm from his elbow to armpit turned red and very swollen. It was hot to the touch and itched. This came and went several times over the next couple days. He's also had two times (including one of his recent visits) where he had facial swelling. These are a little more scary to see, but I feel comfortable knowing that we are in the best possible place for a reaction to occur. Honestly, I feel safer in our allergist's office than I would if we were in the ER.
Each time, he's been observed a little longer to make sure it didn't progress (which it didn't) and he's been given extra antihistamines. The following dose, they then split in half and he has to have them a week apart. Then, we go back to our old regimen.
Next month, we have a regular appointment with the allergist to review how it's going and see if we want to continue. The plan typically is to do shots for 3-5 years, then stop for 3-5, then possibly go back on them if symptoms start returning, which they may or may not.
Tanner's symptoms prior to shots were horrible. He would scratch around his eyes and nose until they bled. He also had very uncomfortable hives, eczema and other rashes after he'd play outside, especially in the grass. His hands and feet would turn red, itch and swell after playing in the grass too. We had him allergy tested and he was moderate to high positive for everything in the environment except for dogs (whew! since he's a dog-lover and we have one.) He still takes daily medication to help control some of the symptoms, but has drastically improved since starting the shots. For someone who hates needles and cried his first shot (before it was even given), Tanner is the first person to tell you that it's worth going through it. The shots are nothing compared to what he was feeling before.
Sunday, May 3, 2009
Kaleigh is trialing egg
We ended up adding egg to Kaleigh's diet to see if she can handle it...so far, so good. It's been about a week and she has no symptoms whatsoever. Last time we tried it (July, 2008), she got really sick within about a week. It can take up to three weeks for symptoms to appear, but we're somewhat hopeful at this point, and hoping last year was just a coincidence/timing.
She's been eating scrambled eggs about 3x/week and is excited to try other things with egg in it, like tapioca pudding and french toast (made with her special bread). I'll update with a pass or fail in a couple weeks!
She's been eating scrambled eggs about 3x/week and is excited to try other things with egg in it, like tapioca pudding and french toast (made with her special bread). I'll update with a pass or fail in a couple weeks!
Wednesday, April 29, 2009
The Budesonide Study (Appointment #3) and Hunter's BIG SURPRISE!
Hunter was supposed to have a full day appointment yesterday, but we had to postpone it for a later date, and instead, just had a regular 2 hour visit.
They took his vitals and did another blood draw. They used lidocaine to try to numb it a little this time, but it doesn't seem to make much of a difference, if at all. (That was the second time they tried it and one time they did it without). Next time, I think we are going to try emla cream, (which Tanner and Kaleigh both like) to see if it makes a difference for him. Hunter's veins are tiny. I think he's chronically (mildly) dehydrated which makes it even more difficult, and then he starts panicking, which the nurse said makes his veins "flatten." We've had the same nurse every time. She's really nice. She's always gotten it in one poke, which NEVER happened before; however, she has to fish around quite a bit...it's a much longer process than I would like and MUCH, MUCH longer than Hunter would like.
This time, Hunter turned very pale and was sweating, but cold by the time the nurse was done drawing his blood. She just kept asking him if he was ok and he said he was really tired and just wanted to lay down. His color and energy came back within a few minutes.
He has to fast for the blood draws, so as soon as she finished, I gave him his breakfast (Lays potato chips, raisins, and elecare (his elemental formula) - breakfast of champions! :) And for those of you who wonder what kind of parent would feed their kid potato chips for breakfast....well, the answer would be a parent who has a child who is allergic to almost every food. And just so you know, we are being followed by a registered dietician who not only knows we feed him like this, but who encourages it too! A year ago, he didn't have any foods that were safe for him, so he lived on just his formula, sugar cubes and ice....yep, I fed him sugar cubes or a bowl of brown sugar for his meals or snacks. He also ate (and still eats) plain shaved ice/snow cones...no syrup on it.
After breakfast, the dr. came in and checked him out. We reviewed symptoms/changes to anything/etc. One of his more obvious symptoms lately has been food refusal...just doesn't want to eat. In fact, from the nice spread I laid out for breakfast, he only ate a small handful of raisins and said he was finished. Elecare....I understand... (it tastes nasty!), but what kid WOULDN'T want potato chips for breakfast? He has also stopped eating spinach which he used to love. He won't even put it in his mouth any more, let alone eat it.
One thing that can be viewed as either a positive OR negative thing, (and I do view it differently on different days), is Hunter's energy level. He used to sleep A LOT....15 hours per day probably, sometimes more. He was very lethargic A LOT. He always wanted to be carried around and would often lay down wherever he happened to be...floor, couch, ground...didn't matter. Lately, he has had SO much energy...EXTREMELY HYPER....to the point of ME being exhausted. He is like the energizer bunny from the minute he wakes up at about 6:30 am until he goes to bed around 8:00. He' s not napping very often...used to nap A LOT. I don't know how much of this is just his age, maybe our good time of year here, something in the medicine that's making him hyper, or maybe it's the medicine actually working, but it's definitely different.
At the end of the appointment, the research coordinator had a nice surprise for Hunter. Knowing how obsessed he is with everything "firefighterish," she took us next door to the fire station where she had arranged for the firemen to give him a tour and let him feel like a real fireman for a while. They showed him the trucks, let him hold some of the tools (that were bigger than him), answered his questions, and let him sit in the truck. Then, the best part...one of the firemen looked at Hunter and asked if he wanted to drive around the block in the fire truck. So, we buckled up and off we went! He even turned on the lights and the sirens and Hunter Was In Heaven!!! When we returned to the station, the other firemen had the hose hooked up and ready to go. With a little help, they let Hunter spray water everywhere. He had so much fun! Definitely a day he'll remember for a very long time!
Thursday, April 23, 2009
Endoscopy results are in
One good and one not so good. It's weird...I think I feel worse this way than if they were both bad. It creates a whole new set of problems that I didn't think about.
Kaleigh was surprisingly the good one....0-few eos everywhere...nothing increased, mild gastritis (which she's always had and the GI said was very common and not that big of a deal). She's the one who has been so sick...so maybe it's not EE related???
Tanner's was strange. He had 19 eos in his mid, but only 1 in proximal and 1 in distal.
I could see the higher number being at either end, but not in the middle...unless, it's because it's patchy and the dr. just happened to get the right spot (in the middle anyways). Not only has Tanner NOT had symptoms, but he has also gained about 10 (much needed) pounds since starting peanut in November, and actually he gained it all in the first two months or so. I think it took him the last 5 years to put on that much weight, so this was HUGE for us and him (dr. talked about tubing him at his November visit if he didn't start gaining).
So....we will not be adding wheat right now for him. Since he has been doing so well AND gaining weight AND peanut is his absolute favorite food in the world AND since we are fairly confident that environment is playing it's part AND since all his other numbers were really low and the one in his mid wasn't super high, we will keep both egg and peanut for right now. The dr. wants to keep him on the same diet and rescope down the road before adding anything else in. This should give us more information regarding the environmental component as well and be 100% positive before we remove our favorite food in every sense of the word.
So here's the problem....Kaleigh REALLY REALLY wants wheat. *I* think it'll be really hard (especially from a cooking/baking standpoint) for *me* to have one on wheat and one not. Granted, there are some things that she'd be able to have that are easier, but I do not want to make any more meals than I'm already making. I don't want Kaleigh resenting Tanner because of this. It's *my* decision. He can't help it. Not easy for a 10 year who LOVES AND MISSES food to understand.
Since Kaleigh failed egg (we think) last year, I am going to retry this with her again (if she's willing), especially now that her scope was clean and she's been healthy for a few weeks. I'm hoping I can convince her that she can get a lot of good stuff from *just* egg, but I know she had her mind set on wheat. By doing this though, it would put both of them back on the exact same diet (which, selfishly, would be HUGE for me).
I may change my mind, but this is where we stand right now. I still need to talk to the kids after school.
Kaleigh was surprisingly the good one....0-few eos everywhere...nothing increased, mild gastritis (which she's always had and the GI said was very common and not that big of a deal). She's the one who has been so sick...so maybe it's not EE related???
Tanner's was strange. He had 19 eos in his mid, but only 1 in proximal and 1 in distal.
I could see the higher number being at either end, but not in the middle...unless, it's because it's patchy and the dr. just happened to get the right spot (in the middle anyways). Not only has Tanner NOT had symptoms, but he has also gained about 10 (much needed) pounds since starting peanut in November, and actually he gained it all in the first two months or so. I think it took him the last 5 years to put on that much weight, so this was HUGE for us and him (dr. talked about tubing him at his November visit if he didn't start gaining).So....we will not be adding wheat right now for him. Since he has been doing so well AND gaining weight AND peanut is his absolute favorite food in the world AND since we are fairly confident that environment is playing it's part AND since all his other numbers were really low and the one in his mid wasn't super high, we will keep both egg and peanut for right now. The dr. wants to keep him on the same diet and rescope down the road before adding anything else in. This should give us more information regarding the environmental component as well and be 100% positive before we remove our favorite food in every sense of the word.
So here's the problem....Kaleigh REALLY REALLY wants wheat. *I* think it'll be really hard (especially from a cooking/baking standpoint) for *me* to have one on wheat and one not. Granted, there are some things that she'd be able to have that are easier, but I do not want to make any more meals than I'm already making. I don't want Kaleigh resenting Tanner because of this. It's *my* decision. He can't help it. Not easy for a 10 year who LOVES AND MISSES food to understand.
Since Kaleigh failed egg (we think) last year, I am going to retry this with her again (if she's willing), especially now that her scope was clean and she's been healthy for a few weeks. I'm hoping I can convince her that she can get a lot of good stuff from *just* egg, but I know she had her mind set on wheat. By doing this though, it would put both of them back on the exact same diet (which, selfishly, would be HUGE for me).
I may change my mind, but this is where we stand right now. I still need to talk to the kids after school.
Wednesday, April 22, 2009
Liver enzymes are normal again
Hunter's blood work came back showing normal numbers again, so we will just wait and watch as we go along. The liver enzymes get checked automatically t/o the study so hopefully, we don't have any more issues. At least for now, we feel comfortable that they look good.
Monday, April 20, 2009
Endoscopies for Tanner and Kaleigh
Tanner and Kaleigh both had upper scopes today. Everything looked great visually (which in itself it huge as they've always had furrowing, rings, inflammation and/or exudate for all their previous scopes.) We have to wait for a couple days to get the official results after the biopsies are read.
They both came out of the general anesthesia quickly and calmly. The anesthesiologist routinely give zofran (for nausea) now. After the kids' first scopes when they vomited afterwards...in the car and at the house...a LOT...the rest of the day, and just overall felt horrible. What a difference the zofran makes. We left the hospital about 30 minutes after they woke up. They were a little groggy, but by the time we got home 45 minutes later, they seemed almost completely back to normal.
We took it easy today...played monopoly, jenga, and computer games as well as watched a movie. By the evening, they were both complaining of pain from where the biopsies were taken, and both were in tears at one point. They usually don't seem to have a lot of pain...just a minor sore throat, but this time, they have distinct spots that are bothering them.
They took a little ibuprofen, ate some ice cream, (coconut milk-based), and are now sleeping. Hopefully, tomorrow they'll feel a little better.
They both came out of the general anesthesia quickly and calmly. The anesthesiologist routinely give zofran (for nausea) now. After the kids' first scopes when they vomited afterwards...in the car and at the house...a LOT...the rest of the day, and just overall felt horrible. What a difference the zofran makes. We left the hospital about 30 minutes after they woke up. They were a little groggy, but by the time we got home 45 minutes later, they seemed almost completely back to normal.
We took it easy today...played monopoly, jenga, and computer games as well as watched a movie. By the evening, they were both complaining of pain from where the biopsies were taken, and both were in tears at one point. They usually don't seem to have a lot of pain...just a minor sore throat, but this time, they have distinct spots that are bothering them.
They took a little ibuprofen, ate some ice cream, (coconut milk-based), and are now sleeping. Hopefully, tomorrow they'll feel a little better.
Wednesday, April 15, 2009
Elevated liver enzymes....again
The research coordinator for the study called me tonight saying that Hunter's blood work from yesterday came back showing elevated liver enzymes. This happened not too long ago when Hunter was hospitalized for dehydration too.
At that time, the pediatrician said that they could be elevated just because he was dehydrated, but wanted us to redo the blood work when he was healthy to be sure. We checked it again a few weeks later and supposedly it was fine.
Both times that they've been elevated have been when he's dehydrated, so I'm not overly worried at this point, although it makes me a little concerned whenever I hear something like this. He will go back in next Tuesday for another re-check.
At that time, the pediatrician said that they could be elevated just because he was dehydrated, but wanted us to redo the blood work when he was healthy to be sure. We checked it again a few weeks later and supposedly it was fine.
Both times that they've been elevated have been when he's dehydrated, so I'm not overly worried at this point, although it makes me a little concerned whenever I hear something like this. He will go back in next Tuesday for another re-check.
Tuesday, April 14, 2009
The Budesonide Study (Appointment #2)
Hunter had his second "official" appointment today. He had a blood draw. They got it in one try, although she had to fish around quite a bit and then couldn't get as much blood as was requested...hoping it's enough.
His formula intake has gone way down...around 10-12 ounces for a couple days, then 2 ounces yesterday, and nothing today...not even one sip. He's drinking water...enough to get by, but he'll go downhill quickly at the rate he's going. His food intake is good though....certainly not enough to make up the lost calories or nutrition that he's missing from the formula, but decent compared to normal.
He was not himself yesterday until late afternoon...sick and very sleepy (slept 17 hours total). He has been surprisingly energetic and happy today which I don't understand seeing how little he is eating/drinking, but I'm glad.
He is about a pound and a half less than what he was at his last appointment two weeks ago. He weighed in at 29 pounds 9 ounces. He is 4 1/2 years old (five on 9/25). I think it's most likely just from being a little dehydrated. We're watching him closely. He's not peeing again, but is acting totally normal. I usually go more off of how he looks/acts rather than any numbers from anything else, but I must say that the lack of fluid and lack of peeing is starting to concern me again even w/o symptoms.
Hunter told the dr. that he doesn't like the study medicine because it's too sweet.
It was about a 2 hour appointment. They check his vitals every time, urine sample, dr. does an overall assessment, they ask about any/all meds, symptoms, changes to anything, and a LOT of just waiting around.
They are also having a tough time getting people to qualify for the study. She asked me today if we'd still be willing to have Kaleigh (because she's more symptomatic than Tanner) in the study if she qualified. She's going to talk to our regular GI and when the kids have their scopes next week, she wants our GI to follow the study guidelines on how/where/number of biopsies just in case. They do not allow siblings to be in the study at the same time, but they do allow you to start the study up to 6 weeks after having an endoscopy. So what she's hoping to do (assuming Kaleigh qualified) would be to get permission to start Kaleigh at the very end of Hunter's study, but within the 6 week time frame. Kaleigh is only being scoped on one food this time, so who knows...OTOH, it's peanuts, so who knows....
I think that's about it. Our next appointment is towards the end of this month. Hunter will be there for 8 hours, with an IV for more frequent blood draws that day.
His formula intake has gone way down...around 10-12 ounces for a couple days, then 2 ounces yesterday, and nothing today...not even one sip. He's drinking water...enough to get by, but he'll go downhill quickly at the rate he's going. His food intake is good though....certainly not enough to make up the lost calories or nutrition that he's missing from the formula, but decent compared to normal.
He was not himself yesterday until late afternoon...sick and very sleepy (slept 17 hours total). He has been surprisingly energetic and happy today which I don't understand seeing how little he is eating/drinking, but I'm glad.
He is about a pound and a half less than what he was at his last appointment two weeks ago. He weighed in at 29 pounds 9 ounces. He is 4 1/2 years old (five on 9/25). I think it's most likely just from being a little dehydrated. We're watching him closely. He's not peeing again, but is acting totally normal. I usually go more off of how he looks/acts rather than any numbers from anything else, but I must say that the lack of fluid and lack of peeing is starting to concern me again even w/o symptoms.
Hunter told the dr. that he doesn't like the study medicine because it's too sweet.
It was about a 2 hour appointment. They check his vitals every time, urine sample, dr. does an overall assessment, they ask about any/all meds, symptoms, changes to anything, and a LOT of just waiting around.
They are also having a tough time getting people to qualify for the study. She asked me today if we'd still be willing to have Kaleigh (because she's more symptomatic than Tanner) in the study if she qualified. She's going to talk to our regular GI and when the kids have their scopes next week, she wants our GI to follow the study guidelines on how/where/number of biopsies just in case. They do not allow siblings to be in the study at the same time, but they do allow you to start the study up to 6 weeks after having an endoscopy. So what she's hoping to do (assuming Kaleigh qualified) would be to get permission to start Kaleigh at the very end of Hunter's study, but within the 6 week time frame. Kaleigh is only being scoped on one food this time, so who knows...OTOH, it's peanuts, so who knows....
I think that's about it. Our next appointment is towards the end of this month. Hunter will be there for 8 hours, with an IV for more frequent blood draws that day.
Monday, April 13, 2009
Sick? EE? The study medicine? Something else?
Hunter went to sleep at 8pm last night and woke up at 10:50 this morning. He was up for just an hour or two and said he was tired again. He laid down and immediately fell back to sleep for about 2 more hours....so almost 17 hours of sleep! He said his tummy, mouth and throat hurt. He also said his study medicine is too sweet and makes him sick.
His formula intake has been WAY down the last couple days, yesterday and today especially. He probably only had 10-12 ounces each of the last two days and only a couple ounces today. He DID however, drink at least 20 ounces of water last night, maybe more and he had a LOT of food (compared to how he normally eats) for dinner...he probably ate 1/2 cup each of red potatoes, green beans and pears, with LOTS of oil on both the potatoes and green beans. He also had about 1/2 apple for lunch. The day before, both his food and drink intake were very low. He ate a decent amount again today...sweet potatoes, pears, and a fruitaboo. He only drank about 10-12 ounces of water though. Cathy, can you come over and have a drinking contest with him again? ;)
He was VERY, VERY energetic yesterday...wrestling with the kids, running around, laughing, playing, etc. all day long. Today, he seemed almost normal after his 2 hour nap, but definitely did not look well prior to that.
We have our next study appointment tomorrow morning, so I'll update after that.
His formula intake has been WAY down the last couple days, yesterday and today especially. He probably only had 10-12 ounces each of the last two days and only a couple ounces today. He DID however, drink at least 20 ounces of water last night, maybe more and he had a LOT of food (compared to how he normally eats) for dinner...he probably ate 1/2 cup each of red potatoes, green beans and pears, with LOTS of oil on both the potatoes and green beans. He also had about 1/2 apple for lunch. The day before, both his food and drink intake were very low. He ate a decent amount again today...sweet potatoes, pears, and a fruitaboo. He only drank about 10-12 ounces of water though. Cathy, can you come over and have a drinking contest with him again? ;)
He was VERY, VERY energetic yesterday...wrestling with the kids, running around, laughing, playing, etc. all day long. Today, he seemed almost normal after his 2 hour nap, but definitely did not look well prior to that.
We have our next study appointment tomorrow morning, so I'll update after that.
Friday, April 10, 2009
What do they eat?
As of today, (and keep in mind that this can and does change), here's what the kids are eating:
Tanner eats everything EXCEPT dairy, soy, wheat, tree nuts, fish and shellfish. We have to be very careful of cross-contamination as well, so if a company does not have good manufacturing practices to keep his allergens out of the food, we dont' eat it.
He scoped clean (no/low eos) in June, 2008 on a top 8 free diet, which meant that he was avoiding all of the above foods, plus peanuts and eggs. Since June of last year though, we have trialled (eating the food until we either see symptoms or have an endoscopy to confirm whether or not it's ok) both the peanuts and eggs and he has done very well on the outside.
He will have another endoscopy on April 20th, 2009. If the biopsies show no/low eos again, that would mean that both of these foods are "safe" for him. This would be HUGE! If he has eos, then it could be one of two things...either one or both of these foods are EE triggers for him OR something in the environment is a trigger and it would've happened regardless if he had the new foods or not. For the majority of people with EE though, food is the trigger and it would have to be removed if eos were found.
Tanner has struggled with gaining weight in the past and our GI had threatened putting a feeding tube in last year if he did not gain enough soon. Since peanut butter is his favorite food and is a great source of fat and calories that we know he would eat, our allergist had us do an IOFC (in office food challenge), where they gradually gave him increasing doses of peanut butter over several hours to make sure that he wasn't going to have an allergic reaction to it. He passed w/o problems and has been eating it in VERY LARGE quantities ever since. He has put on approximately 10 pounds since November. He is still on the small side, but this is a big improvement (pun intended).
Kaleigh is on the same diet as Tanner, with the exception of eggs. She trialed this last year and became very ill within about a week of starting on it. It may have been a coincidence but neither her nor I were willing to retry it any time soon.
She also had a clean scope in June, 2008 on the top 8 free diet and is currently trialling peanuts as well. Speaking of peanuts, Kaleigh had allergy testing done (one little piece of the puzzle when trying to figure out "safe" and "unsafe" foods for kids with EE) and tested positive to all 43 foods that they checked. Peanuts were very high. In fact, the allergist said it was 3x higher than a level where 90% of people would go into anaphylactic shock if they ate it. The strange thing is that Kaleigh had eaten peanut butter almost daily for years and years prior to her EE diagnosis. We did an IOFC for her as well and she passed. She got sick though within a week of trialling them. We stopped and retried another time when she was healthy again. That time, she did great, so she has continued eating it.
She will be scoped the same day as Tanner. So....we are less than two weeks away from finding out if these new introductions are going to be something they can continue or need to stop. Tanner will probably go through at least one Costco size jar of peanut butter between now and then. :) They are both VERY excited to not only possibly gain these new foods, but if their scopes are clean, they will get to trial another new food....WHEAT! Yay...bread! They have been eating a tapioca/rice bread that has to be toasted prior to eating. It also costs almost $6 for a very small loaf. Needless to say, we are ALL excited and hoping it goes well.
Hunter stopped ALL foods in December, 2006, after he was diagnosed with EE. He had so many symptoms and was sick every single day no matter what he ate, so it was better to make him well and then figure out the food situation later. He immediately started on an elemental formula. He still drinks Elecare today, (affectionately called his "lemon milkshake" even though there currently is no lemon in it - long story.) It is an amino acid-based elemental formula that is tolerated by the majority of the most allergic kids. He has done so well with it and most of his old symptoms vanished after just several weeks of being on it. This is still his main source of nutrition. It has everything he needs to grow and thrive. He trialled and "failed" (bad symptoms and/or eos found in biopsies) the first foods we tried introducing.
Then, FINALLY, in June, 2008, he had a clean scope after trialling sweet potatoes, which meant that he had ONE known safe food. This was so HUGE for him and us. He loves sweet potato fries and will eat them almost every day. He has since trialled, and done well symptom-wise, apples, grapes, pears, peaches, spinach, green beans, and white potato. Unfortunately, his eos count went up, but it wasn't terribly high, which is good. As I mentioned in my earlier post, since he's in the study, he will continue eating these foods while testing a new medication. We're not sure what will happen with these foods at the end of the 12 weeks.
Holidays/Birthday and School Parties/Eating Out
One thing we've noticed through all of this is that food is EVERYWHERE. We bring a cooler of their own food everywhere we go. They have their own "safe" candy at school for when there's an unexpected party. They bring their own food and homemade cupcake to birthday parties. They donate their trick-or treat candy that they can't eat (which is most of it.) There are only a small handful of "safe" restaurants that they can eat at. No more Costco samples. Etc, etc.
We have, however, expanded their diets to things they never would've considered before, and some have even become new favorites. Although I never considered myself a good cook/baker before (probably because it's something I never used to enjoy), I have since learned to cook...from scratch too! I have learned to create special treats for them that the OTHER kids wished they had. (The kids LOVE it when this happens.) No more fast food! (Yes, this can have drawbacks, but overall, I know this is a good thing.)
Tanner eats everything EXCEPT dairy, soy, wheat, tree nuts, fish and shellfish. We have to be very careful of cross-contamination as well, so if a company does not have good manufacturing practices to keep his allergens out of the food, we dont' eat it.
He scoped clean (no/low eos) in June, 2008 on a top 8 free diet, which meant that he was avoiding all of the above foods, plus peanuts and eggs. Since June of last year though, we have trialled (eating the food until we either see symptoms or have an endoscopy to confirm whether or not it's ok) both the peanuts and eggs and he has done very well on the outside.
He will have another endoscopy on April 20th, 2009. If the biopsies show no/low eos again, that would mean that both of these foods are "safe" for him. This would be HUGE! If he has eos, then it could be one of two things...either one or both of these foods are EE triggers for him OR something in the environment is a trigger and it would've happened regardless if he had the new foods or not. For the majority of people with EE though, food is the trigger and it would have to be removed if eos were found.
Tanner has struggled with gaining weight in the past and our GI had threatened putting a feeding tube in last year if he did not gain enough soon. Since peanut butter is his favorite food and is a great source of fat and calories that we know he would eat, our allergist had us do an IOFC (in office food challenge), where they gradually gave him increasing doses of peanut butter over several hours to make sure that he wasn't going to have an allergic reaction to it. He passed w/o problems and has been eating it in VERY LARGE quantities ever since. He has put on approximately 10 pounds since November. He is still on the small side, but this is a big improvement (pun intended).
Kaleigh is on the same diet as Tanner, with the exception of eggs. She trialed this last year and became very ill within about a week of starting on it. It may have been a coincidence but neither her nor I were willing to retry it any time soon.
She also had a clean scope in June, 2008 on the top 8 free diet and is currently trialling peanuts as well. Speaking of peanuts, Kaleigh had allergy testing done (one little piece of the puzzle when trying to figure out "safe" and "unsafe" foods for kids with EE) and tested positive to all 43 foods that they checked. Peanuts were very high. In fact, the allergist said it was 3x higher than a level where 90% of people would go into anaphylactic shock if they ate it. The strange thing is that Kaleigh had eaten peanut butter almost daily for years and years prior to her EE diagnosis. We did an IOFC for her as well and she passed. She got sick though within a week of trialling them. We stopped and retried another time when she was healthy again. That time, she did great, so she has continued eating it.
She will be scoped the same day as Tanner. So....we are less than two weeks away from finding out if these new introductions are going to be something they can continue or need to stop. Tanner will probably go through at least one Costco size jar of peanut butter between now and then. :) They are both VERY excited to not only possibly gain these new foods, but if their scopes are clean, they will get to trial another new food....WHEAT! Yay...bread! They have been eating a tapioca/rice bread that has to be toasted prior to eating. It also costs almost $6 for a very small loaf. Needless to say, we are ALL excited and hoping it goes well.
Hunter stopped ALL foods in December, 2006, after he was diagnosed with EE. He had so many symptoms and was sick every single day no matter what he ate, so it was better to make him well and then figure out the food situation later. He immediately started on an elemental formula. He still drinks Elecare today, (affectionately called his "lemon milkshake" even though there currently is no lemon in it - long story.) It is an amino acid-based elemental formula that is tolerated by the majority of the most allergic kids. He has done so well with it and most of his old symptoms vanished after just several weeks of being on it. This is still his main source of nutrition. It has everything he needs to grow and thrive. He trialled and "failed" (bad symptoms and/or eos found in biopsies) the first foods we tried introducing.
Then, FINALLY, in June, 2008, he had a clean scope after trialling sweet potatoes, which meant that he had ONE known safe food. This was so HUGE for him and us. He loves sweet potato fries and will eat them almost every day. He has since trialled, and done well symptom-wise, apples, grapes, pears, peaches, spinach, green beans, and white potato. Unfortunately, his eos count went up, but it wasn't terribly high, which is good. As I mentioned in my earlier post, since he's in the study, he will continue eating these foods while testing a new medication. We're not sure what will happen with these foods at the end of the 12 weeks.
Holidays/Birthday and School Parties/Eating Out
One thing we've noticed through all of this is that food is EVERYWHERE. We bring a cooler of their own food everywhere we go. They have their own "safe" candy at school for when there's an unexpected party. They bring their own food and homemade cupcake to birthday parties. They donate their trick-or treat candy that they can't eat (which is most of it.) There are only a small handful of "safe" restaurants that they can eat at. No more Costco samples. Etc, etc.
We have, however, expanded their diets to things they never would've considered before, and some have even become new favorites. Although I never considered myself a good cook/baker before (probably because it's something I never used to enjoy), I have since learned to cook...from scratch too! I have learned to create special treats for them that the OTHER kids wished they had. (The kids LOVE it when this happens.) No more fast food! (Yes, this can have drawbacks, but overall, I know this is a good thing.)
Thursday, April 9, 2009
The Budesonide Study (Appointment #1)
Before being accepted:
The dr. reviewed all of Hunter's old records, examined him, took our history, etc. and said he looks like a perfect candidate for this study. He needed to have an endoscopy (scope) with biopsies first though to be sure.
He had this done a couple weeks ago. They gave him versed first so they could get the IV started ahead of time, draw blood and get a few things done that had to do with the study, aside from the scope. They pre-treated his asthma with albuterol to be on the safe side and gave him zofran for nausea. (All three kids vomited a LOT their first time getting anesthesia, so they now automatically get zofran).
They also got his liver enzymes retested as well since they were high when he was in the hospital a few weeks back and had us bring in a urine sample.
If he was clear, (few if any eosinophils), that would be the best news of all because it means he would've gained 7 new foods (apples, pears, peaches, grapes, green beans, spinach, and white potato)! Unfortunately though, the dr. came out with pictures and said that although Hunter tolerated everything fine, there was "mild furrowing and exudate in his mid-esophagus." The other areas looked "ok." He said it didn't look perfect, but not bad either, so we needed to wait and see what the official results said.
Pathology at Phoenix Children's Hospital reviewed the slides, and we were told that it looked like Hunter met the criteria....barely. (He had the minimum amount of eos). Per the study guidelines though, his slides had to be sent to Cincinatti Children's Hospital for review. They agreed that he qualified (a minimum of 15 eos in at least 2 different places in the esophagus).
This was both good and bad news. I'd rather see 0 eos, but if he's going to have them, 15 is on the low end, and I'm happy that he *only* had 15 while eating white potato (as that's a big EE trigger for a lot of people). I'm also glad that if he was going to have them that at least he met the criteria to be in the study. I was really dreading having to take away these new foods, but now we get to keep them...at least for another 3 months.
Details of the Study:
One out of every 4 kids in the study will be given a placebo, one will be given a low dose of budesonide, (a swallowed steroid designed to coat the esophagus and reduce inflammation), one a medium dose, and one a high dose. We will not have any idea until the end of the study which group Hunter is in.
Everything needs to be kept the same. He will remain on all his usual medications. He will keep the same diet. We are not to add or take away anything from him. We need to try to keep his environment the same as well...no new pets or anything like that.
He will go in every couple weeks for blood draws and an assessment. He'll have one all day appointment in a few weeks where he'll stay at the hospital for 8 hours. He'll get an IV that day and blood draws every couple hours I believe...not sure what else is happening at that appt.
At the end of the 12 weeks, he'll undergo another endoscopy with biopsies to see if there is any improvement. I think we have one more appointment a couple weeks after that.
His First Appointment:
It was really basic. He got his first dose of medication while we were there so they could observe him afterwards....no problems. The doctor checked him over. We got instructions on how/when to give the medication and our schedule for the next few months.
He has a box full of bottles to last us to the end of the study. He has morning bottles and afternoon bottles. He takes his first dose right after breakfast and can't have anything to eat or drink..can't even brush his teeth....for 30 minutes after. He'll then get his second dose right before bed...same thing...no food/drink/tooth brushing.
Other Random Stuff:
The highlight of Hunter's first appointment was when the fire alarm went off. He went nuts! (in a good way....) He is OBSESSED with anything "fire fighterish." The lights were flashing in our room from the fire alarm. Hunter was wearing his fire fighter shirt that day and the dr. made a comment that we would be safe since there was a fire fighter in the room. (Hunter had the BIGGEST smile!). We started to evacuate, and Hunter was so excited that he might see "real live fire fighters" but then the alarm shut off and we were told to return to our room.
Speaking of Hunter's firefighter obsession, a few weeks back when we were at the allergist's office, we were actually in the appointment talking with the dr. and Hunter asked, "Wouln't it be cool if this whole place just caught on fire and the fire fighters had to come?" He was so excited! The dr. quickly turned around with a shocked look on his face. (Lucy, you got some esplainin' to do!)
This next part has nothing to do with the study, but I thought I would end with yet another embarrassing/funny story. We were at the lab getting a blood draw for Kaleigh. Hunter was picking his nose. I tried to distract him, but he knew what I was doing. He announced VERY LOUDLY that he had dry boogers in there and that the ONLY way to get them out was with his finger and that kleenex does NOT work for THAT kind of booger. I'm used to getting embarrassed by now, but Kaleigh was MORTIFIED.
The dr. reviewed all of Hunter's old records, examined him, took our history, etc. and said he looks like a perfect candidate for this study. He needed to have an endoscopy (scope) with biopsies first though to be sure.
He had this done a couple weeks ago. They gave him versed first so they could get the IV started ahead of time, draw blood and get a few things done that had to do with the study, aside from the scope. They pre-treated his asthma with albuterol to be on the safe side and gave him zofran for nausea. (All three kids vomited a LOT their first time getting anesthesia, so they now automatically get zofran).
They also got his liver enzymes retested as well since they were high when he was in the hospital a few weeks back and had us bring in a urine sample.
If he was clear, (few if any eosinophils), that would be the best news of all because it means he would've gained 7 new foods (apples, pears, peaches, grapes, green beans, spinach, and white potato)! Unfortunately though, the dr. came out with pictures and said that although Hunter tolerated everything fine, there was "mild furrowing and exudate in his mid-esophagus." The other areas looked "ok." He said it didn't look perfect, but not bad either, so we needed to wait and see what the official results said.
Pathology at Phoenix Children's Hospital reviewed the slides, and we were told that it looked like Hunter met the criteria....barely. (He had the minimum amount of eos). Per the study guidelines though, his slides had to be sent to Cincinatti Children's Hospital for review. They agreed that he qualified (a minimum of 15 eos in at least 2 different places in the esophagus).
This was both good and bad news. I'd rather see 0 eos, but if he's going to have them, 15 is on the low end, and I'm happy that he *only* had 15 while eating white potato (as that's a big EE trigger for a lot of people). I'm also glad that if he was going to have them that at least he met the criteria to be in the study. I was really dreading having to take away these new foods, but now we get to keep them...at least for another 3 months.
Details of the Study:
One out of every 4 kids in the study will be given a placebo, one will be given a low dose of budesonide, (a swallowed steroid designed to coat the esophagus and reduce inflammation), one a medium dose, and one a high dose. We will not have any idea until the end of the study which group Hunter is in.
Everything needs to be kept the same. He will remain on all his usual medications. He will keep the same diet. We are not to add or take away anything from him. We need to try to keep his environment the same as well...no new pets or anything like that.
He will go in every couple weeks for blood draws and an assessment. He'll have one all day appointment in a few weeks where he'll stay at the hospital for 8 hours. He'll get an IV that day and blood draws every couple hours I believe...not sure what else is happening at that appt.
At the end of the 12 weeks, he'll undergo another endoscopy with biopsies to see if there is any improvement. I think we have one more appointment a couple weeks after that.
His First Appointment:
It was really basic. He got his first dose of medication while we were there so they could observe him afterwards....no problems. The doctor checked him over. We got instructions on how/when to give the medication and our schedule for the next few months.
He has a box full of bottles to last us to the end of the study. He has morning bottles and afternoon bottles. He takes his first dose right after breakfast and can't have anything to eat or drink..can't even brush his teeth....for 30 minutes after. He'll then get his second dose right before bed...same thing...no food/drink/tooth brushing.
Other Random Stuff:
The highlight of Hunter's first appointment was when the fire alarm went off. He went nuts! (in a good way....) He is OBSESSED with anything "fire fighterish." The lights were flashing in our room from the fire alarm. Hunter was wearing his fire fighter shirt that day and the dr. made a comment that we would be safe since there was a fire fighter in the room. (Hunter had the BIGGEST smile!). We started to evacuate, and Hunter was so excited that he might see "real live fire fighters" but then the alarm shut off and we were told to return to our room.
Speaking of Hunter's firefighter obsession, a few weeks back when we were at the allergist's office, we were actually in the appointment talking with the dr. and Hunter asked, "Wouln't it be cool if this whole place just caught on fire and the fire fighters had to come?" He was so excited! The dr. quickly turned around with a shocked look on his face. (Lucy, you got some esplainin' to do!)
This next part has nothing to do with the study, but I thought I would end with yet another embarrassing/funny story. We were at the lab getting a blood draw for Kaleigh. Hunter was picking his nose. I tried to distract him, but he knew what I was doing. He announced VERY LOUDLY that he had dry boogers in there and that the ONLY way to get them out was with his finger and that kleenex does NOT work for THAT kind of booger. I'm used to getting embarrassed by now, but Kaleigh was MORTIFIED.
Wednesday, April 8, 2009
Funny or embarrassing....I'm not quite sure
My good friend, Pam, who I hadn't seen in 12 years, flew in to Phx yesterday to visit. Just minutes after we sat down in our house, Kaleigh had a huge smile on her face and looking around announced, "I just LOVE this! I feel like I'm sitting in a model home right now 'cuz our house is NEVER this clean." Thanks, Kaleigh!
For family that's reading this, it immediately reminded me of something that happened when we were kids. The details are a little fuzzy, but mom and dad had a guest (maybe a priest?) over for dinner and a nice spread was put out. One of the kids, (who was it?) announced at the dinner table that they wished we could have a guest every night so we could ALWAYS have meals like this.
Then there was the time when I was in line at the bank. Hunter was with me and all of a sudden, he yells out, "Wow, mom, look at that guy! He has a LOT of tatoos." I turned around (no, I'm not quite sure why..) to see a guy, exactly like Hunter described, standing about 2 feet behind me with Hunter staring and pointing. I just smiled (as did he).
I NEVER did this stuff when I was little. ;)
For family that's reading this, it immediately reminded me of something that happened when we were kids. The details are a little fuzzy, but mom and dad had a guest (maybe a priest?) over for dinner and a nice spread was put out. One of the kids, (who was it?) announced at the dinner table that they wished we could have a guest every night so we could ALWAYS have meals like this.
Then there was the time when I was in line at the bank. Hunter was with me and all of a sudden, he yells out, "Wow, mom, look at that guy! He has a LOT of tatoos." I turned around (no, I'm not quite sure why..) to see a guy, exactly like Hunter described, standing about 2 feet behind me with Hunter staring and pointing. I just smiled (as did he).
I NEVER did this stuff when I was little. ;)
Tuesday, April 7, 2009
What is Eosinophilic Esophagitis (EE)?
For great information about eosinophilic disorders, go to www.apfed.org.
You can also watch this video, http://www.youtube.com/watch?v=jkJlycbk8wI. Kaleigh, Hunter and I are all in it. It was filmed locally by a mother who has a child with EE.
And if you have specific questions, you can always just ask me, too. :)
You can also watch this video, http://www.youtube.com/watch?v=jkJlycbk8wI. Kaleigh, Hunter and I are all in it. It was filmed locally by a mother who has a child with EE.
And if you have specific questions, you can always just ask me, too. :)
Pre-diagnosis
Here's the shortened version of our kids' issues from birth to diagnosis of EE:
Tanner:
From birth, he cried/screamed almost 24/7, taking short 10-20 minute naps on and off around the clock. He didn't sleep through the night until just before his 5th birthday (after having his tonsils/adnoids out). He vomited daily probably 4-12 times per day. We used bath towels instead of burp cloths, but the dr. insisted that "all babies spit up." The ear infections started when he was 2 months old and would always return after antibiotics until the ENT finally put tubes in at 15 months. He started on breathing treatments for his wheezing/breathing difficulties when he was about 6 months old.
By one year of age, Tanner had already had multiple bouts of bronchitis, pneumonia, croup, and other miscellaneous infections and illnesses. There was also a couple year stretch from about 3-5 years where he suffered severe leg pain. We went to dr. after dr. and had lots of testing done to try to figure out the source. The dr. at the time said it was growing pains, but we are now learning that so many kids with EE also describe this type of pain. The screaming during these attacks was almost unbearable.
Over the next several years, Tanner stopped gaining weight and became very irritable. He had his first endoscopy in March, 2007, just 3 months after his little brother was diagnosed, and we found out he had EE, too. When I asked him how he felt about this, he said, "Good, I'm glad I have it. Now the doctors and teachers will believe me." :(
Kaleigh:
She was an exceptionally healthy and happy child until she was about five years old. Then, she started getting sinus infections and coughed a lot at night. Our pediatrician said she had asthma.
Over the next few years, the coughing increased, sinus infections came more often and lasted longer, (they'd clear on antibiotics, then come right back) and she became increasingly fatigued. She also started complaining of bad headaches and stomach aches. She had many heartburn and reflux episodes and was always asking for "something cold and soft"� to eat. She had sore throats often and strep throat several times.
She complained of feeling nauseous and had a few bouts of vomiting. She started getting fevers, (some explained, others not) several times per month. Through most of this, she remained a "normal"� kid. We just figured she was one of those kids who caught everything.
She was the last of the three kids to get diagnosed with EE and had the worst damage inside, even though she appeared the healthiest on the outside.
Hunter:
As an infant, Hunter had "cradle cap"�and eczema that was so bad it would bleed. The ONLY thing that would work was steroid cream, but as soon as we stopped, it would come right back. He got the first of many sinus and eye infections at about 2 months and started getting "colicky."�
He was still very irritable around four months, so we decided to try food, thinking maybe he was hungry. He broke out in hives all over his body. We tried multiple times to start him on solids until he finally accepted them at around 7 months, (getting hives every time). He had many pediatrician visits and we were just told to give him benadryl. He had it every day from about 4 months to 20 months old, when we went to the allergist for the first time.
When Hunter was about a year old, he developed a "cold"� that wouldn't go away. He started having frequent vomiting, asthma requiring ER visits and a hospitalization, and the on-going sinus and eye infections and hives, was labeled failure to thrive, started having difficulty sleeping, and plenty more issues.
He was the first to get diagnosed in December, 2006. I thought that was going to solve all his problems, but unfortunately, it hasn't been that easy. About a year later, he began having blood in his stool (quite regularly and sometimes a LOT). He also complained of severe abdominal pain and would fall asleep for a long time after these episodes.
They never did find the source of the bleeding and it still happens...almost always in the fall though. There's a definite pattern to it... severe abdominal pain, followed by bloody stool, he gets pale and lethargic, and then falls asleep. It comes out of nowhere every single time. He will literally be running, jumping, smiling and then just lay down wherever he happens to be...on the floor, my chest, the couch..somewhere.
Tanner:
From birth, he cried/screamed almost 24/7, taking short 10-20 minute naps on and off around the clock. He didn't sleep through the night until just before his 5th birthday (after having his tonsils/adnoids out). He vomited daily probably 4-12 times per day. We used bath towels instead of burp cloths, but the dr. insisted that "all babies spit up." The ear infections started when he was 2 months old and would always return after antibiotics until the ENT finally put tubes in at 15 months. He started on breathing treatments for his wheezing/breathing difficulties when he was about 6 months old.
By one year of age, Tanner had already had multiple bouts of bronchitis, pneumonia, croup, and other miscellaneous infections and illnesses. There was also a couple year stretch from about 3-5 years where he suffered severe leg pain. We went to dr. after dr. and had lots of testing done to try to figure out the source. The dr. at the time said it was growing pains, but we are now learning that so many kids with EE also describe this type of pain. The screaming during these attacks was almost unbearable.
Over the next several years, Tanner stopped gaining weight and became very irritable. He had his first endoscopy in March, 2007, just 3 months after his little brother was diagnosed, and we found out he had EE, too. When I asked him how he felt about this, he said, "Good, I'm glad I have it. Now the doctors and teachers will believe me." :(
Kaleigh:
She was an exceptionally healthy and happy child until she was about five years old. Then, she started getting sinus infections and coughed a lot at night. Our pediatrician said she had asthma.
Over the next few years, the coughing increased, sinus infections came more often and lasted longer, (they'd clear on antibiotics, then come right back) and she became increasingly fatigued. She also started complaining of bad headaches and stomach aches. She had many heartburn and reflux episodes and was always asking for "something cold and soft"� to eat. She had sore throats often and strep throat several times.
She complained of feeling nauseous and had a few bouts of vomiting. She started getting fevers, (some explained, others not) several times per month. Through most of this, she remained a "normal"� kid. We just figured she was one of those kids who caught everything.
She was the last of the three kids to get diagnosed with EE and had the worst damage inside, even though she appeared the healthiest on the outside.
Hunter:
As an infant, Hunter had "cradle cap"�and eczema that was so bad it would bleed. The ONLY thing that would work was steroid cream, but as soon as we stopped, it would come right back. He got the first of many sinus and eye infections at about 2 months and started getting "colicky."�
He was still very irritable around four months, so we decided to try food, thinking maybe he was hungry. He broke out in hives all over his body. We tried multiple times to start him on solids until he finally accepted them at around 7 months, (getting hives every time). He had many pediatrician visits and we were just told to give him benadryl. He had it every day from about 4 months to 20 months old, when we went to the allergist for the first time.
When Hunter was about a year old, he developed a "cold"� that wouldn't go away. He started having frequent vomiting, asthma requiring ER visits and a hospitalization, and the on-going sinus and eye infections and hives, was labeled failure to thrive, started having difficulty sleeping, and plenty more issues.
He was the first to get diagnosed in December, 2006. I thought that was going to solve all his problems, but unfortunately, it hasn't been that easy. About a year later, he began having blood in his stool (quite regularly and sometimes a LOT). He also complained of severe abdominal pain and would fall asleep for a long time after these episodes.
They never did find the source of the bleeding and it still happens...almost always in the fall though. There's a definite pattern to it... severe abdominal pain, followed by bloody stool, he gets pale and lethargic, and then falls asleep. It comes out of nowhere every single time. He will literally be running, jumping, smiling and then just lay down wherever he happens to be...on the floor, my chest, the couch..somewhere.
Sunday, April 5, 2009
Gotta start somewhere, right?
Alright, Cathy...here it is! ;)
The title for my blog says it all. We have so much for which to be thankful. We have also had our share of struggles. One thing for sure though..not a day goes by that the kids don't make me smile and laugh with the things they say and do.
I will primarily be using this blog to track the kids' health issues (so I can keep it all straight!) I'll give a little history (or maybe a lot) in my next post, but in short, all 3 kids were diagnosed with eosinophilic esophagitis (EE). It was a rough road getting to the diagnosis, and we've had our ups and downs ever since; however, we continue to be encouraged by all the research which will hopefully one day lead to better diagnostic and treatment options for not only our kids, but all who suffer from eosinophilic disorders.
I also want a place to jot down all the "funnies" from our kids, so hopefully, an occasional story will help lighten the reading material a bit and remind us that it's really not so bad.
And lastly, our kids are the smartest, nicest, best-looking kids in the whole wide world so I'll be sure to brag about them here too and probably post a few pictures (or more). :)
The title for my blog says it all. We have so much for which to be thankful. We have also had our share of struggles. One thing for sure though..not a day goes by that the kids don't make me smile and laugh with the things they say and do.
I will primarily be using this blog to track the kids' health issues (so I can keep it all straight!) I'll give a little history (or maybe a lot) in my next post, but in short, all 3 kids were diagnosed with eosinophilic esophagitis (EE). It was a rough road getting to the diagnosis, and we've had our ups and downs ever since; however, we continue to be encouraged by all the research which will hopefully one day lead to better diagnostic and treatment options for not only our kids, but all who suffer from eosinophilic disorders.
I also want a place to jot down all the "funnies" from our kids, so hopefully, an occasional story will help lighten the reading material a bit and remind us that it's really not so bad.
And lastly, our kids are the smartest, nicest, best-looking kids in the whole wide world so I'll be sure to brag about them here too and probably post a few pictures (or more). :)
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