Wednesday, February 22, 2012
Gluten?
OK. It's Wednesday. It has officially been one full week since JB began her digestive adventure. She has been using Prev-acid 2x a day since Thursday. We began using Prev-acid because the docs thought she might be suffering from ulcers. She has been depressed, and moody, and under a lot of stress so it makes sense. She gets so stressed out that she gets terrible migraine headaches. Like I said, it's been a full week, and so far there has been no change in her pain level. It hurts her to walk through the grocery store. She has missed multiple dance classes and 2 performances. She dropped out of guitar lessons because she doesn't have the energy to practice. It hurts to sneeze.
We were told to try Prev-acid for 2 weeks, and then follow up at the Budge Clinic. Well... I don't need to be an M.D. to see that this is not working. The docs told us it takes a while for Prev-acid to build up enough to make a difference, but so far I don't see any improvement at all. NONE! Many of our friends and family have suggested the possibility of JB having developed a gluten intolerance, A.K.A Celiac disease, A.K.A. Wheat allergy. Our Pastor, Susan+ forwarded this article to me http://www.huffingtonpost.com/dr-mark-hyman/wheat-gluten_b_1274872.html?ref=healthy-living and it had a lot of good information, and pointed to some signs that we have been seeing. He mentions a "Frankin-wheat" or basically a super scientifically engineered wheat that produces mega yields and mega doses of nutrients that is now being used in most of our packaged wheat products, and that many humans simply cannot tolerate it. Made it sound like less of an allergy, and more of an overdose. Other articles I have read recently mention that wheat intolerance can lead to depression, mood swings, fatigue, and migraines, as well as stomach and digestive issues. Things that made me go Hmmmm. Made me wonder if the signs of stress we have been seeing, have actually been signs of gluten overdose. At this point, I am not confident enough to say that she suffers from celiac disease in any shape or form, I just wonder if it could be a factor.
So....the best way to find out is to cut back. We are still going to continue the Prev-acid treatment, but starting today we are also going to begin limiting her wheat intake. In researching foods I have determined that a full blown wheat allergy would require a full blown life style change. Wheat is EVERYWHERE! You can find wheat in yogurt, and from postage stamps to crackle bread. It is in your salad dressing. On your potato chips, and in your self stick envelopes. We are not throwing all of those things out...not yet. So, starting today we are only cutting back, not eliminating. This means Rice Krispies for breakfast instead of shredded wheat. +++Note+++ Yes, Regular Rice Krispies still have gluten in them due to a tiny ingredient of barley flavoring...gluten is in barley too, and oats. Not just wheat. Kelloggs now makes a gluten free Rice Krispies that has eliminated this barley flavoring, but that's not the cereal we had in the house, and we figured even with a small barley ingredient, rice based cereal would have less gluten than wheat based. For lunch I packed her some slices of roast turkey and cheddar cheese. ( I have no idea what the turkey was roasted in, but it probably has gluten in it...again, decrease, not eliminate) No bread. An activia yogurt (again not gluten free, due to the wheat used in the strawberry flavoring--but heavy on the healthy digestive tract bugs) Lays brand regular potato chips (GLUTEN FREE!!!!) fruit juice, and some gummy bears. We will continue with this gluten reduced diet for another week and see where we are next Wednesday. If any of you out there in cyber land have any fabulous ideas of how to painlessly reduce gluten in our diet, please let me know. :-)
We were told to try Prev-acid for 2 weeks, and then follow up at the Budge Clinic. Well... I don't need to be an M.D. to see that this is not working. The docs told us it takes a while for Prev-acid to build up enough to make a difference, but so far I don't see any improvement at all. NONE! Many of our friends and family have suggested the possibility of JB having developed a gluten intolerance, A.K.A Celiac disease, A.K.A. Wheat allergy. Our Pastor, Susan+ forwarded this article to me http://www.huffingtonpost.com/dr-mark-hyman/wheat-gluten_b_1274872.html?ref=healthy-living and it had a lot of good information, and pointed to some signs that we have been seeing. He mentions a "Frankin-wheat" or basically a super scientifically engineered wheat that produces mega yields and mega doses of nutrients that is now being used in most of our packaged wheat products, and that many humans simply cannot tolerate it. Made it sound like less of an allergy, and more of an overdose. Other articles I have read recently mention that wheat intolerance can lead to depression, mood swings, fatigue, and migraines, as well as stomach and digestive issues. Things that made me go Hmmmm. Made me wonder if the signs of stress we have been seeing, have actually been signs of gluten overdose. At this point, I am not confident enough to say that she suffers from celiac disease in any shape or form, I just wonder if it could be a factor.
So....the best way to find out is to cut back. We are still going to continue the Prev-acid treatment, but starting today we are also going to begin limiting her wheat intake. In researching foods I have determined that a full blown wheat allergy would require a full blown life style change. Wheat is EVERYWHERE! You can find wheat in yogurt, and from postage stamps to crackle bread. It is in your salad dressing. On your potato chips, and in your self stick envelopes. We are not throwing all of those things out...not yet. So, starting today we are only cutting back, not eliminating. This means Rice Krispies for breakfast instead of shredded wheat. +++Note+++ Yes, Regular Rice Krispies still have gluten in them due to a tiny ingredient of barley flavoring...gluten is in barley too, and oats. Not just wheat. Kelloggs now makes a gluten free Rice Krispies that has eliminated this barley flavoring, but that's not the cereal we had in the house, and we figured even with a small barley ingredient, rice based cereal would have less gluten than wheat based. For lunch I packed her some slices of roast turkey and cheddar cheese. ( I have no idea what the turkey was roasted in, but it probably has gluten in it...again, decrease, not eliminate) No bread. An activia yogurt (again not gluten free, due to the wheat used in the strawberry flavoring--but heavy on the healthy digestive tract bugs) Lays brand regular potato chips (GLUTEN FREE!!!!) fruit juice, and some gummy bears. We will continue with this gluten reduced diet for another week and see where we are next Wednesday. If any of you out there in cyber land have any fabulous ideas of how to painlessly reduce gluten in our diet, please let me know. :-)
Friday, February 17, 2012
Jb's (not so) Great Adventure
February 14, Valentine's day, dawned full of Love and promise. JB went to school, and I snuck in to decorate her locker, complete with Justin Bieber valentine (*NOTE* JB HATES Justin Bieber). Bill is in NYC making money, and all is pretty normal. JB goes to dance class, and complains that her stomach is hurting. We go to the store to buy some blush for her dance performance on Saturday, and head home. As we drive, her pain increases, and by the time we get home she is white as a sheet, and beginning to pass out. She is also feeling as if she is going to throw up. So I run in the house to get a bucket, and turn around and head to the emergency room at Logan Regional Hospital. Time is 8:00 p.m. ish. They do a bunch of tests. Take 4 vials of blood, and an x ray. The x-ray shows an intestinal blockage, but the ER doc doesn't think much of it. It looks a lot like this image I stole off the internet.
The Emergency Room Doc orders an ultrasound of her gall bladder. They determine that the gall bladder is infected, has a thickened wall, and fluid around it, and that it must come out. Tonight. They contact the gall bladder surgeon here in Logan, who says " I don't do 12 year olds" and determine that the best treatment would be to ship her by ambulance ASAP to Primary Children's Hospital in SLC.
She is whisked away in her chariot around 11:30 p.m. I run home, making phone calls as I go, lining up sitters for the dog, wondering what to do about the girl scouts, contacting Clint in New York, and general over-sized freaking out. I chuck some stuff into an over night bag, grab Piggy and head for SLC. I arrive at the hospital around 2 am and find Robyn, Dallin, and his love Michelle waiting for me there. I can't tell you the gratefulness in my heart when I saw them there.They had come to the hospital and waited there until Jb arrived. They sat with her, and talked with her, and comforted her, and only left after Grandma and Grandpa Eliason and Uncle Shane arrived. Jb was never alone. Grandma and Grandpa and Shane left shortly after I arrived, but JB never had to be afraid that someone wasn't looking out for her. I am so blessed to have family that will run to the hospital at 1 in the morning to make sure Jb was safe. Love x 10 billion. Thank you, thank you, thank you!!!
At Primary Children's the radiologist there said he didn't think there was a problem with the gall bladder, and felt it was probably thick because it was empty from Jb throwing up so much. He was more concerned about the intestinal blockage, and felt we should clear out the intestines before deciding to operate. So the enemas began. Also the stomach pain was so severe that it started to give JB a migraine headache. Around 7 am They gave her toradol to combat the migrain, but it didn't work. It but made her dizzy, she lost feeling in her hands and face, made her throw up, and so she couldn't see, but did nothing for the pain. So now she was in pain and sicker than before the drug. At this point they refused to give her anything else for the pain, she just had to wait it out until the toradol wore off. They also decided to move us out of the emergency room into a more private room in their outpatient center. They moved us around 8 am. and she was able to rest a little bit.
Here is a pick of the best and the worst chair in the world. As a parent you hate to have to use it, but am so thankful that is there when you do have to use it. Bill headed off to a hotel.
The ultrasound folks arrived around 8 a.m. took some more pics and determined the gall bladder was fine. They sent us out the door around 12:30 p.m. She still has stomach pain, but now we know that it isn't intestinal blockage, and it isn't gall bladder. Theories now are it could be acid reflux, or possible food allergies. We will continue to work through treatments until we find one that works, and then we may have an idea of what is causing it. for now though, we still just don't know.
Thanks to all of you who held us in your prayers, watched the dog, made scout arrangements, did the dishes, took out the garbage cans, and all those little things that mean a lot. Thank you!!!!!
The Emergency Room Doc orders an ultrasound of her gall bladder. They determine that the gall bladder is infected, has a thickened wall, and fluid around it, and that it must come out. Tonight. They contact the gall bladder surgeon here in Logan, who says " I don't do 12 year olds" and determine that the best treatment would be to ship her by ambulance ASAP to Primary Children's Hospital in SLC.
She is whisked away in her chariot around 11:30 p.m. I run home, making phone calls as I go, lining up sitters for the dog, wondering what to do about the girl scouts, contacting Clint in New York, and general over-sized freaking out. I chuck some stuff into an over night bag, grab Piggy and head for SLC. I arrive at the hospital around 2 am and find Robyn, Dallin, and his love Michelle waiting for me there. I can't tell you the gratefulness in my heart when I saw them there.They had come to the hospital and waited there until Jb arrived. They sat with her, and talked with her, and comforted her, and only left after Grandma and Grandpa Eliason and Uncle Shane arrived. Jb was never alone. Grandma and Grandpa and Shane left shortly after I arrived, but JB never had to be afraid that someone wasn't looking out for her. I am so blessed to have family that will run to the hospital at 1 in the morning to make sure Jb was safe. Love x 10 billion. Thank you, thank you, thank you!!!
At Primary Children's the radiologist there said he didn't think there was a problem with the gall bladder, and felt it was probably thick because it was empty from Jb throwing up so much. He was more concerned about the intestinal blockage, and felt we should clear out the intestines before deciding to operate. So the enemas began. Also the stomach pain was so severe that it started to give JB a migraine headache. Around 7 am They gave her toradol to combat the migrain, but it didn't work. It but made her dizzy, she lost feeling in her hands and face, made her throw up, and so she couldn't see, but did nothing for the pain. So now she was in pain and sicker than before the drug. At this point they refused to give her anything else for the pain, she just had to wait it out until the toradol wore off. They also decided to move us out of the emergency room into a more private room in their outpatient center. They moved us around 8 am. and she was able to rest a little bit.
By 10:30 ish, they decided the enemas were not working to clear JB out fast enough and that she should begin a treatment of "golytely." Basically this is a laxative solution that you drink and is most commonly used for people preparing for colonoscopies. They bring in a gallon size container of this stuff that is described as liquid Vaseline, and she is required to drink about 14oz of it every hour. Like a trooper she makes it through the first 14 ounces. But when presented with the second cup, she begins to panic. She hates it. She knows she can't do it, and starts to freak out (Yes she still has a migraine) they decide the best solution now is to intubate her so the drip can just go right into her stomach and she doesn't have to drink the stuff anymore. That was pretty scary, but at this point Bill arrived from NYC and was able to help calm her down. We were also far along enough that they decided they could give her some old fashioned Tylenol for the headache.
She did great for a few hours until her stomach just couldn't take it anymore, and she began throwing up again. Threw up everything, including the tube. We did x-rays, and they decided she was cleaned out enough that the blockage was gone so she didn't have to use the tube anymore. (whew) However, the stomach pain was still there, so they wanted us to do another ultrasound. Time now is about 7:00 p.m. and the ultrasound folks are gone for the day, so that means we get to stay the night. Again.
Here is a pick of the best and the worst chair in the world. As a parent you hate to have to use it, but am so thankful that is there when you do have to use it. Bill headed off to a hotel.
The ultrasound folks arrived around 8 a.m. took some more pics and determined the gall bladder was fine. They sent us out the door around 12:30 p.m. She still has stomach pain, but now we know that it isn't intestinal blockage, and it isn't gall bladder. Theories now are it could be acid reflux, or possible food allergies. We will continue to work through treatments until we find one that works, and then we may have an idea of what is causing it. for now though, we still just don't know.
Thanks to all of you who held us in your prayers, watched the dog, made scout arrangements, did the dishes, took out the garbage cans, and all those little things that mean a lot. Thank you!!!!!
Monday, February 13, 2012
Special Friend Day
Thursday I was invited to attend Kindergarten with Taz for "Special Friend Day". When I arrived, he helped me find a chair and had me sit next to him at his table. He had drawn me a special picture, and I was so excited to be there.
After the rest of the special friends arrived, the class entertained us with a rousing concert. My favorite song was this one:
Skinnamarink e-dink e-dink
Skinnamarink e-doo
I love you.
Skinnamarink e-dink e-dink
Skinnamarink e-doo
I love you.
I love you in the morning
and in the afternoon.
I love you in the evening
underneath the moon.
Skinnamarink e-dink e-dink
Skinnamarink e-doo
I love you.
I love you in the morning
and in the afternoon.
I love you in the evening
underneath the moon.
Oh, Skinnamarink e-dink e-dink
Skinnamarink e-doo
I love you.
I do.
After the song, we worked on drawing a picture together. I drew Taz with a cast on his arm. He acquired it via a mishap involving a bed and one of his brothers "accidentally" pushing him off of it...., and broke it in three places, but that is not the story we are telling here. The first drawing is the one he made special just for me. It says I (heart) U Rej. I love it!
After our drawing was complete, we worked together to decorate paper sacks that will be given to Lee's Market Place. The sacks will then be used at the grocery store to wish their customers a Happy Valentine's Day. We cut out hearts and glued them on, then colored some hearts on as well.
Then we had a yummy cookie and some delicious sprite.
Thanks Taz for inviting me to be your special friend. I loved it!
p.s. If you would like to see the rest of the photos from our special day, click here: SPECIAL FRIEND DAY
Wednesday, February 8, 2012
Friday, February 3, 2012
Your Shirt
Found your shirt today. Hidden, neglected in the far recesses of an abandoned drawer. I held it close to me and could smell the lingering traces of you from when it was last worn. It looks so small. I wonder if you think of her. I wonder if you know how deeply she misses you. She struggles daily to keep moving forward and I watch her, and I worry. Not just for her but for both of you. You were not meant to be this far apart. My soul twins. Please know that you are in our hearts each and every day, and in our prayers each and every night. XOXOXXX. Always.
Thursday, February 2, 2012
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