365 days since the cheese sandwhich

Well, here it is. A full year since I reintroduced cheese to Jayden and started a mess we can't stop. 365 days. In 365 days there have been only 4 days that we have had no problems at all. Only four. We are many times better than where we started. We have gone from 14 hours of acid and a very sick kid to only three hours a day and a not so sick kid. We have been able to successfully reintroduce several foods. He can have any drink now, like orange juice and apple juice. Soy free and dairy free chocolate has been found, we are used to cooking dairy free,soy free, and gluten free, and we are working CAUTIOUSLY on Parmesan cheese. We are also more weary. Twelve doctors later and many hard tests, we still have no answers...nor any help. This has been stressful on everyone, and it's very hard to stand here and say we still have no idea. A couple months ago, Jayden got hit by a ball in the stomach, which aggravated his symptoms, going from medium, back to intense. He had a cold with a cough last week. Every time he coughed he brought up acid. That was two months ago, yet we promised Jayden he could play football. I will be praying through every practice and game. I don't want to live in fear, but I saw the results of the kickball, so I am fearful. Yet, all in all, Jayden plays, and has fun, and looks normal (as opposed the first three months where he was a sickly green all the time.) He laughs and jokes and reads all the time. But at night, he's frustrated and in pain.

There are very few mainstream pre-packaged food that are soy-free, dairy-free, and gluten-free. There are a couple on this list that if everyone had at their party, then everyone could eat.

Lays Potato Chips
Frito Lays
Skittles
Quaker Rice Cakes Kettle Corn (only)
Corn Chips (a few have soy...most don't)
All Chex cereals except wheat

Here are some mistakes that we have made: Oscar Meyer Ham. The cheaper brands do not contain soy, but I have found in both hot dogs and ham when you get into the main brands, soy is found. Other mistakes: just about anything else, soy is dangerously in most foods, especially if it is gluten-free, or dairy-free. The gluten-free aisle is worthless in our case. I think the biggest mistake is allowing people to help with cooking. It's so nice and kind but it's so dangerous. You have to train yourself not to spray Pam into your pan, or to not sprinkle your work area with flour. Another mistake was rushing the reintroduction of foods. Once we slowed WAY down, we had more successes then misses. Finally, a HUGE mistake for us: seeing a naturopath. It's not that I don't believe in them. But it goes along with the foods. She prescribed three different types of vitamins which we gave to him all at once as prescribed and after one dose we went from mild to extreme for two months. Jayden's system can not take it. So what I have learned, doctors know what they know, but you are there every day. If I were to do the naturopath again. I would have gotten her prescription, started with one of the vitamins and cut it down to a forth of it and introduced it very slowly. We won't give medicine out as readily as before to any of our kids.

Here are some hits: Asian Rice Noodles, they sell at Winco pretty cheaply. They are extremely filling (although, you should look on the web for how to cook them as it is different from regular pasta). Discovering Bob's Red Mill and buying flours in bulk. It's a 40 minute drive, and very worth it. Are best hit there is the gluten-free brownie mix. That's the best brownie mix from any store! Biggest hit: I can get rid of the gluten-free taste in almost anything with a little extra sugar, a little extra vanilla, and cinnamon. That was my main goal in gluten-free cooking. I wanted to feel that I would actually eat the foods I cooked, and the recipes (just about all of them) are not very pleasant to eat the way they are written.

We appreciate your thoughts and prayers as we continue to figure this all out,
Thank you for traveling this journey with us.

Peace, Susan

Still struggling

It's only a couple more weeks before the year mark of the Advil incident comes up. Now about 300 days straight in a row that we deal with stomach issues. Jayden has had MRI's, an EEG, endoscopy and has seen 12 doctors. Frustrating. Sad.

On the positive side, Jayden has about 2 hours of intense issues at night, but he is fully functioning in the daytime world. He mostly seems healthy during the day and plays with the other kids and participates in after school activities. He just finished a play at church where he had the most lines. I'm so proud of him. But every night, his system has to settle. It settles through hard stomach pains, and acid, and burping. The burping is changing to be more intense. Before you could almost think it was a hiccup, but it's deeper now. I have tried to cut back on the Zantac. I've cut an entire 1/2 of a pill out. I've tried to cut out another 1/4 and we have had severe consequences. So where I didn't think him being on the Zantac was a helping, I now know that it is. I also chart his nights. And in a two week time frame, though the stomach pains and burping are constant, I'm finding that the acid comes into play about two to four times a week.

For the time being we are taking a break from doctoring. I need to catch my breath and try and figure out where to go to from here. I really have no idea. Clearly, 12 doctors have no ideas collectively.

Wishing you all health.
Peace.
Susan

What now???

Jayden's endoscopy came out clean, so now what? I gave a video of Jayden having an attack to a doctor, and three psychologists. I took him to a naturopath today. I don't even know how many people that makes. Tons. 12 or 15 maybe? Just about every person has said something different. So now what? But now that the physical tests showed that all is well, the question might be neurological. That's sad, and harder to think about than physical. The naturopath doctor thought that a concussion that Jayden had two years ago might be a part of this. I thought that at one point myself, so her idea makes sense to me, but it's just a theory. Another theory and no answers. What now? What now.

THE appointment at Children's Hospital

The giant words, Children's Hospital, loomed on the building I was about to enter. I realized two things in that moment: 1) We are moving up a level in the severity of this situation and 2) some parents are taking their children  into this building and looking up at the same letters, praying that their child will come home soon. On #1) this is scary. I'm scared that my poor kid has to come here at all. I'm praying that we will walk in this giant place and walk out with answers of some kind. Something to work with. On #2) Thank you Lord, even though my child is sick, he will come home tonight. Even though he doesn't feel well, he is healthy child compared to so many sweet babies that lie in this hospital. Oh, the prayers that surround this place. Back to #1) When we walked in we passed the pediatrics desk and had to head over to special appointments.

The end result is that nothing really happened. I know that we are on this specialist's radar. But nothing happened. She is switching his medications from expensive Omeprazole to super cheap Zantex because the Omeprazole is making him nauseous. But that was about the extent of it. She won't talk about anything invasive for two more months. I don't want to wait two more months. I want my son to stop having pain in his stomach now.
.

Jayden 44 days since the cheese sandwich

Hmmm, it's been 44 days now since the dreaded cheese sandwich. Forty four days. That's a long time to suffer from acid reflux without any breaks. Well, I shouldn't say that. We've had two or three breaks at night, but those have been made up for some long daytime attacks.

School has started. After many sleepless nights (my sleepless nights, not Jayden's), I had to send my little boy to school. So, I hope and pray that nothing will happen in the daytime, and I hope and pray that if something did happen in the daytime the children, the teacher, and school will be kind to my sweet boy. I looked around on the Internet, at other blogs, and found advice on how to inform the school about Jayden's health issues. Essentially, it was advised:

1) inform in writing,

2) skip being nice (don't be mean, but be firm)

3) make sure that everyone who cares for your child is aware of the situation.

The following is my attempt at doing all this. I would normally write this overly flowery letter but here is my attempt at "to the point." I sent this letter to my son's teacher, the school nurse, the school, everyone on staff at my church, and also sent it to Jayden's grandparents. I sent this to the grandparents mostly to share with them the letter, but as I pressed the send key I realized that this letter is very clear, and contains good information should they ever need it. It's something they too can hold on to. I will take this letter to the multitude of doctors that we have seen in hope that they will read it.

The following is a note about Jayden that I will also give as a hard copy to the office.

In June, Jayden had a severe allergy to Advil. It tore up his stomach lining or something to that nature. He has been under great distress since then. The Advil has resulted in Jayden having severe acid reflux which means he has a lot of burping (sometimes 40 or more per minute that are very forceful, painful, and uncontrollable) and sometimes has burning acid. These problems usually start in the 9:00 hour at night but I'm not sure what will happen when we switch his schedule to school hours. We are working very hard to get this under control. Jayden does have medicine that he needs to take twice a day and we have him on strict food restrictions. We will try to have all medicine taken outside of school functions.

Currently Jayden is:
Dairy-free (no milk or cheese)
Chocolate-free
Citrus-free (no orange-juice or lemonade)
Mint-free
Spicy-food-free

Fried-food-free
Tomato-free (no pizza)
Soda-free/Caffeine-free

We have also put him on a gluten-free/soy-free/peanut-free diet.

We took him to an allergist and had Jayden tested for allergies. He is NOT allergic to wheat, soy or peanuts and does not need to be isolated from any of these foods. However, he seemed to have a slight intolerance for these since the Advil mess and we are doing everything we can to help him. Since going gluten-free Jayden's acid reflux symptoms have decreased from 4 hours at night to 2 hours, so we are making a commitment to doing this. I will happily provide snacks for him, please let me know ahead of time if there are birthdays or other school parties that I can bring a special treat for Jayden so he does not feel left out. We are really struggling with all of this. Jayden has been in and out of the doctor's offices since June and we will start seeing a pediatric gastro-enterologist at Children's soon in September. I anticipate other school absences for doctor appointments as we work through this. We hope to work with the school as these come up.

Mostly, Jayden experiences acid reflux at nighttime. However, Jayden has had issues during other hours of the day. Sometimes he has a day "attack" of acid reflux. If this should happen while at school, he really doesn't want to be near people during that time. Jayden is very aware of when the acid reflux/burping attack will start up. Please take him seriously if he shares that his stomach does not feel well. Should the burping happen, while in your care, please take Jayden out of a public situation and send him to the office and have them call me or text me at (cell), or (home). I live 20 minutes away from the school, which will feel like a long time to Jayden. During this time, please have Jayden eat 10 raisins, which we will send with him. It's a strange but true "old wives tale" that we found on the Internet but it seems to work (but doesn't work all the time.) Tums, DO NOT work for us unfortunately. Please note, if Jayden is burping this is NOT something he can control, please don't ask him to use "good manners" with this situation. Once it starts, his burping can last for two hours or more and he is very uncomfortable as it makes him feel sick to his stomach. Usually the burping stops when he's absolutely exhausted from them at night and he falls asleep, but in the daytime, we have noticed that there seems to be a sudden relief. We will update you as we go, we truly hope that this is temporary. Jayden is a very active little boy and will enjoy PE and recesses and dance fully.

Thank you for your kindness in this matter.

Jayden goes to the allergist

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.

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. 

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.

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.

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

More to the Jayden story...the Nightmare Begins

After the three weeks of limiting or eliminating foods we decided to reintroduce foods. On July 23rd, we gave him a cup of milk in the morning. He did great. July 24th one cup of milk in the morning and he was fine. On July 25th, we got daring and gave him a cup of milk in the morning and one at lunch. One of the tips for acid reflux/heartburn is to keep the no-no foods to the daytime so we were happy to honor that. We had intention of bringing it to a full three cups of milk to really feel like we could rule out dairy as an acid reflux cause. The next day - same thing. On Wednesday the 26th, I gave him the cup of milk in the morning, and  then decided to substitute a grilled cheese sandwich for the cup of milk in the afternoon....

We had a terrible night on Wednesday, which was the first bad night in almost a month. When you see him at night, and then you see him in the day, it's like a Dr. Jekyll and Mr. Hyde story. Jayden is FINE in the daytime, but crying, and retching, and burping at night. All night. He doesn't settle down until after 2:00 AM. On Thursday, we had another bad night. (Bad is the wrong word...maybe horrible/terrible/frightening are better words for it.) On Friday, we went to the doctor and she started us on a medicine that was suppose to even out the acid in Jayden's stomach. The biggest problem is that Jayden is a child and there are a lot of medicines out there for adults but not many for children.

And then Saturday happened. Again, Jayden was fine in the day, but at night, now FOUR days since the dreaded cheese sandwich, Jayden had the worst episode he has ever had. He felt so horrible, he said he thought he was going to die. DIE. Parents can't handle hearing things like that. I think that will mess me up for a long time to come. I would have taken him in to the ER but I looked on the internet and all over, in people's personal stories were statements like, " the pain was so bad, I thought I was going to die." I certainly am the first to admit that I had no idea that heartburn or acid reflux could be so serious.

Although, I fully believe that this started because of the Advil, I certainly can't ignore the obvious terror created by a single cheese sandwich. Of course, we immediately returned him to the previous diet without any dairy in it. I have been up and down the Internet, I started looking up food allergies to dairy and wheat, and to cures of acid reflux. The worst realization has been that any reintroduction of food comes with a consequence. That consequence, like the milk, was positive. The consequence, like the cheese sandwich, came at a great price. A great price to my little boy. One cheese sandwich on a Wednesday lunch was now destroying our family's mental and emotional well being, and Jayden's physical well being. I don't really see any way out of these consequences in the long-term future.  If it truly is the Advil, my thinking is that at some point he will be able to return to the foods he once ate with no difficulties...shouldn't he??

Jayden continued

After all these doctor visits, we started limiting (but not eliminating) the typical heartburn foods. These foods you can find all over the internet as no-no's but in case you don't know them they are: dairy, chocolate, tomatoes, mint, citrus, soda/caffeine. There are additional lists that we have found and incorporated as well which have included fried foods and spicy foods. So for an 8-year old kid that means no spaghetti, macaroni and cheese, grilled cheese sandwiches, pizza, ice cream, french fries, cheeseburgers, or chocolate milk. Going to a restaurant is not really possible right now. An adult might moan and groan about giving up these foods, but for a kid, these are some pretty basic things. I think it is great, and give parents kuddos, who raise children on salads and vegetables, but we aren't those parents, we are normal, and these are pretty normal foods. With limiting these foods, which basically meant that we only gave him milk in his cereal, and let him have yogurt, we saw a HUGE difference in Jayden. He looked better and healthy and was running around, which was a very welcome site. We realized that we really needed to eliminate all these foods because we realized that we needed a clean slate and wanted to give Jayden's stomach the best opportunity to heal, and maybe by eliminating them he would improve further. So we started our time all over and took Jayden off all of the heartburn foods completely.

We have looked up and down the internet about heartburn and acid reflex (also known as GERD). Essentially there are a zillion websites out there and there are some basics about heartburn and acid reflux that most of the sites talk about. In case you come to this blog - here they are: 1) Limit the heartburn foods: dairy, chocolate, tomatoes, mint, citrus, soda/caffeine, fried foods, spicy foods. 2) Make meals smaller. 5-6 meals verses 3 main meals. 3) Usually heartburn/acid reflux symptoms occur at night time and they can be very painful. and 4) Acid Reflux (aka GERD) and heartburn are NOT the same thing as I had previously thought.

Peace to all of you, Susan

How this started

My son, Jayden, had a back injury from sports and on June 8th 2011, Wednesday night, I decided to give him a dose of Children's Advil, which is what I had in the house. The next day he was having trouble with his stomach, and back and breathing. I took him in and she told us to continue Advil for his back. 7 doses later my husband brings Jayden to Urgent Care on Sunday, June 12th because he was doubled over and having trouble breathing. He's doubled over because his stomach hurt so badly he couldn't stand up straight. The doctors took an x-ray and thought all looked ok, but to take him off Advil, and put him on Tums if needed. On Tuesday Jayden went to school, the first time in about a week. But he was saying things about his stomach, like he felt that he had been punched in the stomach. So later that week we head back in to the doctor, and another doctor looks at his x-ray and tells us he's very constipated and constipation can lead to heartburn.

My First Blog

I am mostly starting this blog to work through my son's health issues. My 8 year old son, Jayden, recently took Advil about a month and a half ago. The Advil seems to have hurt his stomach lining and now he has terrible heartburn and acid reflux as a result. Jayden is too young to really take any decent medicine so we are relying mostly on home remedies. There are some really strange ones out there so this is blog is part of our journey of trial and error. I thought it might help others as well. I titled the blog Reflections because I have some really random thoughts and I'm sure as I grow in comfort with blogging I will post them as well. :-P

Peace and love, Susan