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 can we do now?

Since my last writing, we decided to become much more aggressive trying to solve my son's medical issue. We have since had an MRI, EEG, a radioactive digestive test, been to a naturopath, chiropractor, and a neurologist. The neurologist shooed us out of his office. He said that Jayden does not have a nervous tic as others have indicated, thus we didn't need him. The naturopath gave us some supplements, which I think in all would have been fine, but we stupidly tried them all at once as prescribed. That little experiment set was by far the most damaging of everything we have tried. It set us back about 13 weeks. Jayden went from an hour or two of stomach pain and acid reflux a night back to missing school and activities because it skyrocketed back to up to 14 hours. The chiropractor was the saddest. He really felt confident that he could help Jayden with the acid reflux. We went twice with zero results, and I saw how much time he spent with Jayden. Because he was confident  he could help, we all felt the disappointment harder than everything else.

I am exhausted, and sad, and I feel defeated. I don't know where else to go, or anything else to do. The chiropractor was the 12th doctor that we have seen and still we stand before you "undiagnosed." The good news is that the MRI and EEG came back normal, and the neurologist was adamant that it wasn't a nervous tic. My son, asked me what was next. I don't have any more answers, or thoughts of what to do next. I don't want him to think I am giving up, and I don't want to give up, yet I need to rest, regroup, and yet I need to continue fighting and figuring this out. I don't care what the cause is at all at this point. I want the symptoms to end.

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.

100 days since the cheese sandwich -Endoscopy

Oh wow! I counted back to the cheese sandwich. 100 days! Today is 100 days. Today is also marked by finally getting an endoscopy for my son. We will leave for the Children's Hospital in about two hours. It's been just a lot. A lot of sickness, a lot of late nights, a lot of missed school, a lot of medicine, a lot of food journaling, a  lot of doctoring, a lot of tests, xrays, skin pricks, blood draws, a lot of food elimination, and a whole lot of frustration. Jayden is currently off 16 foods, the doctor recently added 5 more foods to our long list that we had already. The good thing about being off those foods is that everything that goes into Jayden's mouth with very few exceptions are hand made. So if we have any big acid attacks I can pretty much pinpoint the ingredient that did him in. The guess work is fairly minimal which is a much nicer place to be in then when we were spinning out of control.

I still don't enjoy the whole gluten-free experiment, but I'm much more efficient with it now. I understand the cookbooks and I've learned to add in an extra tablespoon of sugar to all the recipes, which gets rid of the "gluten-free taste." I've learned to make bread, and muffins, and cakes that taste really good. We made a great monkey bread, that was really good. I'm going to attempt making cream puffs next (I'm a total baker - I like things that taste good and sweet. :) ) My husband has learned to make pizza dough and a tomato-less pizza sauce which is great tasting. He makes all his own chicken broth now. We know how to not cross-contaminate foods and we have learned that paying for Halloween candy goes a long way towards a happy face on a rather dismal "I-can't-eat-anything" Halloween. And my husband has learned not to surprise me with, "there's no more gluten-free bread," as it takes a three hour time block (which I don't have many of) to make.

Without a doubt we eat better now. All of us. I introduce foods better now too. Here's my plan: Try a small portion of an isolated food ONCE during a week. In the second week, try it two or three times with at least a day in between. And then try it maybe two days in a row. I'm not joking. It's 100 days since we introduced one cheese sandwich. We have 16 foods that we are off of. It will takes us a year to get back on them. And that is when he is well.

So here is the stats:

• June 8th - Gave Jayden Advil by June 10th he was doubled over and couldn't breathe well. Had massive stomach problems and pains.
• Late June: We took him off all the acid-producing foods.
• July 24: Started giving him milk

• July 27: Gave him THE cheese sandwich.
• July 28th: Started him on a medicine for acid reflux
• July 29th: Jayden said he thought he would die because he felt so bad.
• Aug 5th: Started him on Omepetrozole
• Somewhere between Aug. 6th and 19th we committed to going gluten-free and it helped us quite a bit and committed to food journaling! (Best thing we've done).
• Aug. 19th: Jayden told me to chart things out (smart kid!) And we charted these: Feel like throwing up, Stomach pain, Acid Amount, Burping level, and Overall. We assigned everything a number on a 0-4 scale. 0 - no problems, and 4 meaning we are going to ER.
• Since Aug. 19th (and certainly not before that) we have only had three, THREE days of all zeros. That's it. We've had many days where the numbers have hit 3.5-3.9 (he was never willing to say 4). 
• Sometime in Sept. I felt that the medicine might actually be the cause of his stomach issues.
• Late September we switched to Zantac. What a difference that made! His stomach issues and a whole lot of the burping disappeared. Unfortunately, the Omeprazole was making Jayden feel sick all the time (that makes me so mad!) BUT it was also doing a good job controlling the burning acid. When we switched medicines we had some intense and scary days. 10 hours of acid a day. It was so scary. 
• It's been about 30 days since we started the Zantac and I finally feel that it is working a whole lot better at least for this last week.
• Nov. 2, 2011 marked 8 full days that Jayden has been in school and 10 days with school and weekend and after school activities. It's the first time he has been in school for even 5 full days since all of this started.
• November 3, 2011 we have to break the going to school streak for this endoscopy. It's been a big dilemma. We don't want to do the endoscopy and here we are making a turn for the better. But better is not well. Last Saturday he had a rough night.  Jayden turned to me and said, "I just want this to end." --Oh, baby, me too. Me too.

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.