We took my son to the allergist the other day, and if the poor kid hasn't been through enough, he received 18 skin pricks. Thankfully skin pricks are not so bad if they are done in the arm. He had to sit still and promise that he wouldn't itch which was far harder than the little pricks. Turns out the skin pricking showed that he is not allergic to wheat, soy, or peanuts. What? Why did the blood test show one thing and the skin pricking show another?? Well, that means that we don't have to do the gluten-free diet after all. Unfortunately, for this gluten-eating-and-loving-it family, since going gluten-free Jayden's night time horrors have been cut dramatically in half. We started August 17th gluten-free, and by the night of the 20th, we went from four solid hours of dry heaving and burping to two. Plus we made a huge financial commitment to it so we will stick it out until Jayden heals. The allergist warned me that could be anywhere from 6 weeks to a year!
I don't know if I can take a year of this, or even 6 more weeks. I'm out of my element on the gluten-free cooking. I don't find it fun at all. And it is expensive. With all the food restrictions, we have very foods left, gluten-free or otherwise to feed our son. It is one thing to live like this at home. It's totally different when you walk out the door. School is coming soon, my son will walk out the door with a lunch sack five days a week. What will we put in there? What happens if a kid has a birthday at school and brings some yummy gluten chocolate thing. And it's not the gluten that will do him in at all, but the chocolate. Or the class has a pizza party with forbidden tomato sauce on it?? I am so frustrated. All I want to do at this point is find a way to feed my son, and have him feel like he is going to be okay.
I know when I write the words acid refux or burping, it sounds almost like a joke. But the burps aren't like the ones you have sitting at the dinner table, or after you drink a can of soda or beer. They are forceful and can't be controlled and they cause Jayden pain. They start with his stomach whirling like a tornado. I tried counting them a while back. There were so many I lost count several times. He burps about 40 times in ONE MINUTE. That means there are two THOUSAND, four hundred of them in one hour and 9600 for the four hours that he has been enduring. It's awful. They stop when he's so exhausted that he finally falls asleep. And we are so exhausted too. The allergist, while he was more knowledgeable about acid reflux in general, and did agree the Advil caused these events, was no help at all. The next thing on our agenda is to take Jayden to the Children's hospital and go to a pediatric gastroenterologist. All this because we gave him Children's Advil.
Right now, I am very overwhelmed and I'm very tired. I am grateful to God that he is experiencing less of the reflux at night. I pray we keep moving in the right direction. Thanks all for keeping up with us.
Saturday, August 27, 2011
Saturday, August 20, 2011
Started Gluten Free today
Today was the first official gluten-free day. I know we are totally, I mean TOTALLY going overboard. And I have to ask is totally going overboard worth all the hassle??? Gluten-free is not fun. But yes, it's worth it because I just want to feed my son. I want to feed my son. And when we get to the allergist and the gastroenterologist I want to be able to tell them with absolute, positive certainty that as far as his diet is concerned we are doing everything we can possibly do. So gluten-free it is.
We are also dairy-free. Dairy-free is not so bad. There is many different types of dairy substitutes. In cooking and baking 1 cup of milk is 1 cup of milk whether it is cow, rice or soy. In addition, Costco sells the Rice milk for a fraction of the price. Love Costco.
We are peanut-free and we are staying away from other nuts just in case. We love peanut butter in this house. But all in all it's just a missing food. It doesn't really affect how I eat. Gluten-free is a major transition. You have two choices. You can drop a ton of money and buy gluten-free stuff or drop a ton of money and make gluten-free stuff. Unlike milk, where milk is milk, flour is not flour. One cup of regular flour equals 1 cup of white rice flour, plus some potato starch, plus some tapioca flour OR bean flour plus brown rice flour plus cornstarch plus tapioca starch plus sweet rice flour. OR some other crazy concoction. Oh my goodness, gluten-free is very overwhelming. I am so very grateful that some very wonderful people sat down and figured all this out ahead of me.
Personally, I'd prefer to drop the money on prepared foods and cook sparingly. But we really can't because we are also soy-free. Soy-free is the worst of them all. Soy is a substitute for dairy and for wheat. I could find a decent spot in a grocery store for gluten-free foods but out of that spot maybe one or two items have no soy in them - even in the big stores like New Seasons. At the wonderful specialized gluten-free bakery in Portland, I have to call even them up ahead of time to order special soy-free goodies, where they have to go out and buy specialized soy-free ingredients to meet my personal need.
I am very grateful for living close to Bob's Red Mill. http://www.bobsredmill.com/ They have all of these flours and then some. It's overwhelming. I went with a couple of recipes and bought the flours I needed. Instead of having one bag of flour I now have 5. FIVE(!) and I found that I actually missed one that I needed - which is a real bummer because that is a haul to go to that store. So I will actually end up with SIX flours to fulfill the duty of one bag of flour that I had before. That's a lot of shelf space I don't have. It's frustrating to me to see all of those bags of flours in the place where my mixing bowls used to be. But this way, I have the most control over our foods.
I am also grateful for Facebook. There are lots of people out there in my own friend community that have gotten me started. And I certainly recommend going to one of these stores, whether Bob's Red Mill, or Trader Joes a with a friend who has already walked the gluten-free road. That was so helpful to have an experienced mom guiding me through the store. I never would have made it out alive. I was so overwhelmed. There are also pamphlets available in stores like New Seasons, and Whole Foods that also guide you through it. I checked out every book in the library. I have to recommend the book Living Gluten-Free for Dummies. I'd insert the picture here if I knew how to do it. Tomorrow we are going out of our house all day and we will have to totally plan every meal before we walk out the door. We can't get caught without our own foods because we don't know how to navigate the outside world. It'll be a hefty challenge for us as we are so new at this. But if we can succeed at something that monumental this early on in the game, we will increase our freedom a ten-fold. I can only describe the feeling as leaving your kid with a babysitter you barely know. What if we don't have food and my kid is hungry than what do we do? We can't just walk into a Safeway and walk out with food and eat (unless you eat dirty fruit)...nor can we walk out of a Trader Joes even though there are more possibilities there and eat because I still don't know what I am doing. It's very nerve-racking. I can walk into a Costco and get a smoothie - God Bless them! I can walk into any Jamba Juice and also get a smoothie. I am excited to increase my "I Can" list, but right now I only know those two things. Wishing us luck!
Peace to all.
Love, Susan
We are also dairy-free. Dairy-free is not so bad. There is many different types of dairy substitutes. In cooking and baking 1 cup of milk is 1 cup of milk whether it is cow, rice or soy. In addition, Costco sells the Rice milk for a fraction of the price. Love Costco.
We are peanut-free and we are staying away from other nuts just in case. We love peanut butter in this house. But all in all it's just a missing food. It doesn't really affect how I eat. Gluten-free is a major transition. You have two choices. You can drop a ton of money and buy gluten-free stuff or drop a ton of money and make gluten-free stuff. Unlike milk, where milk is milk, flour is not flour. One cup of regular flour equals 1 cup of white rice flour, plus some potato starch, plus some tapioca flour OR bean flour plus brown rice flour plus cornstarch plus tapioca starch plus sweet rice flour. OR some other crazy concoction. Oh my goodness, gluten-free is very overwhelming. I am so very grateful that some very wonderful people sat down and figured all this out ahead of me.
Personally, I'd prefer to drop the money on prepared foods and cook sparingly. But we really can't because we are also soy-free. Soy-free is the worst of them all. Soy is a substitute for dairy and for wheat. I could find a decent spot in a grocery store for gluten-free foods but out of that spot maybe one or two items have no soy in them - even in the big stores like New Seasons. At the wonderful specialized gluten-free bakery in Portland, I have to call even them up ahead of time to order special soy-free goodies, where they have to go out and buy specialized soy-free ingredients to meet my personal need.
I am very grateful for living close to Bob's Red Mill. http://www.bobsredmill.com/ They have all of these flours and then some. It's overwhelming. I went with a couple of recipes and bought the flours I needed. Instead of having one bag of flour I now have 5. FIVE(!) and I found that I actually missed one that I needed - which is a real bummer because that is a haul to go to that store. So I will actually end up with SIX flours to fulfill the duty of one bag of flour that I had before. That's a lot of shelf space I don't have. It's frustrating to me to see all of those bags of flours in the place where my mixing bowls used to be. But this way, I have the most control over our foods.
I am also grateful for Facebook. There are lots of people out there in my own friend community that have gotten me started. And I certainly recommend going to one of these stores, whether Bob's Red Mill, or Trader Joes a with a friend who has already walked the gluten-free road. That was so helpful to have an experienced mom guiding me through the store. I never would have made it out alive. I was so overwhelmed. There are also pamphlets available in stores like New Seasons, and Whole Foods that also guide you through it. I checked out every book in the library. I have to recommend the book Living Gluten-Free for Dummies. I'd insert the picture here if I knew how to do it. Tomorrow we are going out of our house all day and we will have to totally plan every meal before we walk out the door. We can't get caught without our own foods because we don't know how to navigate the outside world. It'll be a hefty challenge for us as we are so new at this. But if we can succeed at something that monumental this early on in the game, we will increase our freedom a ten-fold. I can only describe the feeling as leaving your kid with a babysitter you barely know. What if we don't have food and my kid is hungry than what do we do? We can't just walk into a Safeway and walk out with food and eat (unless you eat dirty fruit)...nor can we walk out of a Trader Joes even though there are more possibilities there and eat because I still don't know what I am doing. It's very nerve-racking. I can walk into a Costco and get a smoothie - God Bless them! I can walk into any Jamba Juice and also get a smoothie. I am excited to increase my "I Can" list, but right now I only know those two things. Wishing us luck!
Peace to all.
Love, Susan
Thursday, August 18, 2011
On a Different Note...To MaryAnn Gunovick Ulm
I am dedicating this next blog to my forever friend, MaryAnn Gunovick Ulm. Two years ago today, Mary passed away at the age of 37, exactly one week before her 38th birthday...
Mary told me that the breast cancer had come back and that she was terminal on June 25th, 2007. It was a Wednesday. The words I hear the most in my head are her telling me "goodbye" after giving me the news. I don't really know how long it really took for the shock waves of that conversation to enter my heart, but it was long into her time in the hospice before I knew what she had really said. I'm sure it wasn't until her last few days before I understood what it meant. The next conversation I remember is the one on July 25th, 2008, telling me she might be going into a hospice in a few weeks and she had only a few months left. MONTHS. She said months. I got there on July 29th so that we could have our last girl time together (4 days later) and she was already in the hospital. On the 30th, she looked better. She was sitting up in bed. We took Mary in her wheelchair to have coffee. Coffee! Great! Let's go home! The next thing we knew, the same day, we were wheeling her into the hospice. What?! What just happened here?
I definitely feel the missing last friend-date, but who am I when her husband, Dave, and three children (two with autism) miss her so incredibly much? Who am I? I am "just a friend." I hear that a lot you know. I guess I'm the person that still picks up the phone to call my friend, and wonders if she is having fun in Heaven. I miss sharing random thoughts, I miss her telling me about the newest issues with her sister, and see what drama is being cooked up this time. I miss the comfortable silences and the knowing what the other was going to say before it was said. I miss the sisterhood we shared and the friendship. I really miss how she was always on my side...no matter what. I think I miss that the most. I could have used a great big, gigantic dose or two of that this year, and last year, and yesterday, and tomorrow.
I don't know if I'll ever be the same person I was two years ago. In some ways I'm broken. I see myself as a vase that has been hit before from other deaths of friends (yes, friends - plural.). So, when I broke this time, I shattered. In some ways I am healing too, but it takes a long time to glue little pieces back together, and I recognize that I'm not being put back together in the same way I once was. However, in other ways I'm healed. A few days before Mary died, I couldn't pray, I couldn't read the Bible. I didn't have any words left, and I didn't have any more hope. There was a moment, a tiny, but real moment, when I felt that God said, "OK, Susan, you have a choice. You can leave me and walk away or stay and continue on my path." I'm sure I thought about it. When you get to the thick of things and you watch a mother say goodbye to her beloved children,and the "Why Mary?" question isn't being answered...well, you think about it. But I made a conscious decision, which may have been the only real conscious decision I actually made during this time, I decided to stick it out with God. I realized leaving wasn't possible. I know that I said, out loud in a empty lobby, the lobby where I spent most of my hours, my lobby, "God, I will stick it out with you. I don't want to leave."
In the hospice, time slows way down. Every hour felt like a lifetime. Every moment that passed was a miracle. An entire lifetime was taken in every single breath. When you would rather see the suffering end than keep a person on this earth, you suddenly understand the meaning of love. Mary's husband, Dave, and I worked pretty hard to give her peace to leave our world. We couldn't figure out what she still needed. We knew there was something. Something missing. Something left undone, or overlooked, what else was there?
In his last moments with Mary, Dave discovered what she was waiting for. He said to her, "Walk in the light with Jesus." And yes, it was then that Mary took her final breath, and did exactly that.
I thought I had a good faith up until that point. But what I had was a small, insignificant mustard seed that Mary, my dear friend Mary, when she took her last breath also took that little seed and planted in a deep soil, she has nurtured it and watered it and has helped me grow.
Thank you Mary for everything.
Thank you Mary for everything.
Mar-Mar I miss you tons.
Friends Forever, Susan
He put before them another parable: ‘The kingdom of heaven is like a mustard seed that someone took and sowed in his field; it is the smallest of all the seeds, but when it has grown it is the greatest of shrubs and becomes a tree, so that the birds of the air come and make nests in its branches.
Matthew 13:31-32 (NRSV)
Peace
Wednesday, August 17, 2011
21 Days Since the Cheese Sandwich - We Are Going Gluten-Free
We are still having the same issues every night (burping and acid reflux) now 21 days after giving Jayden a cheese sandwich, I realize the only real control I have is his diet. So for a little bit of time we will go gluten-free, soy-free, dairy-free, and peanut-free, along with ditching all of the other heartburn foods like citrus, chocolate, tomatoes, mint, spicy and fried foods.
Jayden's doctor will send us to an allergist and we are still waiting for a "go" from Kaiser to head over to OHSU.
I went to Keana's bakery today in SE Portland http://www.keanascandyland.net/ a great gluten free bakery that will work with all of your allergens and also to Bob's Red Mill Store in SE Portland http://www.bobsredmill.com/ .
I am very thankful that a friend took me to these places and explained A LOT of information to me. I am feeling very overwhelmed right now. I think what really got to me was going to the special bakery and realizing that it isn't really the wheat or the dairy that is a problem, these places are used to working with those options. Soy-free foods are more complicated and there seem to be less of them. Keana's will happy make me soy-free goodies but I'll have to order ahead of time to get them (just to make sure). Fortunately the bakery is on my way to my grandma's so I think going there will be some fun opportunities ahead to pick up a little this or that but I just have to remember always call first. Keana's said that they have over 1500 items that they can make, call them and ask them for any type of menu, the ship and deliver (503) 719-5131. They are going make Jayden a special birthday cake with a Star Wars theme. I am so happy he will have something special for his special day.
Monday, August 15, 2011
19 Days Since the Cheese Sandwich
It's now been 19 long and miserable days since the cheese sandwich mishap. We seemed to have started something that just never ends. Jayden's tummy and esophagus have paid a price 18 days over what it should. One day of acid reflux to flush out a cheese sandwich, ok, maybe two, might feel reasonable, or at least livable. But 19!? No. Yet, here we are, day 19. Eighteen nights of problems, and late, sleepless nights for our son and for us. But today, was different. My eight-year old son is actually sleeping. However, for the first time since June, he was burping all day long. He's so uncomfortable. And I feel, despite our forward-moving food efforts, we are just moving backwards and spinning our wheels.
Today, I went to Fred Meyer determined to not leave until I found one food that Jayden could eat. We are trying to go wheat, soy, dairy, and peanut free, plus eliminate the other heartburn foods like chocolate, citrus, soda, mint, and tomatoes. I looked high and low. Even in the organic isle, or the rice isle, I couldn't find anything that didn't have traces of one of those - I found that most foods list allergens in bold lettering which I was most appreciative. I brought one food back excitedly...hello Dinty Moore Beef Stew! Aha....oh,whoops...a little tomato sauce. I feel very defeated. I just need something, anything, that we can eat to buy us some time to find recipes, buy new ingredients, and adjust our lifestyle.I found he can eat Corn Chex, Rice Chex, Kix, and also Rice Krispies, some oatmeal will do. I just want my little guy to be well. That's all.
Today, I went to Fred Meyer determined to not leave until I found one food that Jayden could eat. We are trying to go wheat, soy, dairy, and peanut free, plus eliminate the other heartburn foods like chocolate, citrus, soda, mint, and tomatoes. I looked high and low. Even in the organic isle, or the rice isle, I couldn't find anything that didn't have traces of one of those - I found that most foods list allergens in bold lettering which I was most appreciative. I brought one food back excitedly...hello Dinty Moore Beef Stew! Aha....oh,whoops...a little tomato sauce. I feel very defeated. I just need something, anything, that we can eat to buy us some time to find recipes, buy new ingredients, and adjust our lifestyle.I found he can eat Corn Chex, Rice Chex, Kix, and also Rice Krispies, some oatmeal will do. I just want my little guy to be well. That's all.
Sunday, August 14, 2011
Jayden
Jayden has not felt well for about 24 hours. He has had some acid reflux but mostly it is just burping and dry heaving. It's rare to have this type of flare up in the daytime/all day. I am starting to look up some recipes for dairy free/wheat free foods. I found a brand for kids sold at Fred Meyer and at New Seasons called Ians http://www.iansnaturalfoods.com/ . They make the "normal" kid food but without wheat/soy/dairy/nuts in them, like chicken nuggets and a "no cheese" mac and cheese. I'm sure the price tag will be $$$. But at this point it will buy us some time to rethink the ingredients in our home. This is so frustrating.
Friday, August 12, 2011
Jayden's test results
The following Monday, after the scary Saturday night, Jayden had his blood drawn to be tested for allergies. We had a week before the results came back from the lab. In the meantime we had to figure out what else we can do. I've looked on the web for any new information and finally decided to start looking into blogs. I thought maybe reading through more personal accounts of acid reflux might shed light on the situation. What I've found has been a long list of possibilities to work on the symptoms of acid reflux but it seems that there is no one thing that works for everyone. There are some basic things out there to try to water down the symptoms of acid reflux to some very strange things to try. I am about ready to try them all at this point.
Here is what we have tried: Apples (didn't work), Tums (worked for a short time), Cinnamon (no), Dietary changes (worked for a while), chewing gum (no), baking soda (NO!) and we have even tried sucking on 10 raisins (actually worked a little bit - and yes - that's how desperate we are).
The "cures," or what seem to be old wives tales, that seem to get the biggest nods are apple cider vinegar, pickle juice, dietary changes, apples, and Aloe Vera juice (which is our next try.)
At the very end of the week, Friday, we got the results back from the blood draw. STILL having bad nights with acid reflux (now TEN days since the cheese sandwich debacle), we were very anxious to hear what the tests found. He was tested for basic food allergies, and Celiac disease, which is the inability to absorb gluten, and an overall blood screening. So, he got a negative for Celiac (good) and some surprising results for allergies. Jayden received a 0 out of 6 for dairy and eggs, a 2 for wheat and soy and a 3 for peanuts. Peanuts! I certainly didn't expect that. When you take out all kid foods like spaghetti, grilled cheese, macaroni and cheese, pizza, ketchup, you are not left with much. The last food we really have had in our back pocket was peanut butter and jelly. I found a great recipe for peanut butter cookies that I could make with out milk in them and have made them non-stop. Now, during the three weeks that eliminated all these acid reflux foods, we fed Jayden plenty of peanut butter, and he was fine, he was cheery, and looked great. So I'm not sure if a 3 means much in our case or not. But, nevertheless, for now, we have eliminated all peanut butter as well. As I write that, I let out a big sigh. We are just spinning our wheels and getting absolutely no where.
I have a call out for a referral for a pediatric gastroenterologist at Dormbecker (the Children's Hospital in Portland), which is going to take some time to get. Jayden has also started a different type of medicine (please God, let it work.) And at the time of this writing, we are now SEVENTEEN days since the grilled cheese sandwich and during that time we have had one good night. One night, where my sweet little boy went to sleep with a smile on his face. One. I want more of those. I am tired, my husband is tired, and my son is tired.
We would appreciate prayers for clarity and solutions. Thank you! With love, Susan
Here is what we have tried: Apples (didn't work), Tums (worked for a short time), Cinnamon (no), Dietary changes (worked for a while), chewing gum (no), baking soda (NO!) and we have even tried sucking on 10 raisins (actually worked a little bit - and yes - that's how desperate we are).
The "cures," or what seem to be old wives tales, that seem to get the biggest nods are apple cider vinegar, pickle juice, dietary changes, apples, and Aloe Vera juice (which is our next try.)
At the very end of the week, Friday, we got the results back from the blood draw. STILL having bad nights with acid reflux (now TEN days since the cheese sandwich debacle), we were very anxious to hear what the tests found. He was tested for basic food allergies, and Celiac disease, which is the inability to absorb gluten, and an overall blood screening. So, he got a negative for Celiac (good) and some surprising results for allergies. Jayden received a 0 out of 6 for dairy and eggs, a 2 for wheat and soy and a 3 for peanuts. Peanuts! I certainly didn't expect that. When you take out all kid foods like spaghetti, grilled cheese, macaroni and cheese, pizza, ketchup, you are not left with much. The last food we really have had in our back pocket was peanut butter and jelly. I found a great recipe for peanut butter cookies that I could make with out milk in them and have made them non-stop. Now, during the three weeks that eliminated all these acid reflux foods, we fed Jayden plenty of peanut butter, and he was fine, he was cheery, and looked great. So I'm not sure if a 3 means much in our case or not. But, nevertheless, for now, we have eliminated all peanut butter as well. As I write that, I let out a big sigh. We are just spinning our wheels and getting absolutely no where.
I have a call out for a referral for a pediatric gastroenterologist at Dormbecker (the Children's Hospital in Portland), which is going to take some time to get. Jayden has also started a different type of medicine (please God, let it work.) And at the time of this writing, we are now SEVENTEEN days since the grilled cheese sandwich and during that time we have had one good night. One night, where my sweet little boy went to sleep with a smile on his face. One. I want more of those. I am tired, my husband is tired, and my son is tired.
We would appreciate prayers for clarity and solutions. Thank you! With love, Susan
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