We have been on such an emotional roller coaster since November 2010. Andrew was first diagnosed with type 1 diabetes and then celiac disease one month later.
Since then, we've been scrupulous with keeping gluten out of our kitchen. With all of the precautions taken, Andrew's celiac antibodies are still not under the normal of <20. Granted, he started at around 134, but he should have been able to get under 20 eating gluten free. Right now his antibodies are 41.
We met with a nutritionist and went over everything in our kitchen to see if there was something we were missing. We came up with absolutely NOTHING. However, restaurants can definitely be a place for cross contamination. We do eat out 2-3 times per week.
Our plan of action is to repeat the upper endoscopy and see if his body is having damage done to his small intestines. There are some people that test positive for celiac antibodies and not have celiac. Since Andrew never had symptoms, we can never use that as a guide.
If he does NOT have damage, we will use 41 as his normal marker. If he does have damage, then we will stop eating out for 2 months and retest his antibody levels. If he is still high after that, then we will have to look into other reasons for the elevated antibodies.
Showing posts with label celiac disease. Show all posts
Showing posts with label celiac disease. Show all posts
Monday, April 29, 2013
Saturday, February 23, 2013
Things are a Changin'
It has been just over 2 years since Andrew was diagnosed with type 1 diabetes and celiac disease. Throughout his honeymoon, we've been able to only use fast acting insulin to control his numbers, and Carb counting has only included starchy carbs. His A1C was 7.6 at diagnosis and reduced to 5.0 over the past couple of years. So far, his morning fasting numbers have been normal (under 100) without long acting insulin.
Things have been changing this past week. It has really caught me off guard. His numbers have risen into the upper 200's. This is with the normal carb ratio of 1:30 (1 unit of insulin for every 30g carbs consumed), and his morning numbers have also started to rise between 100 - 120.
Full blown diabetes is staring me right in the face!
I always knew that his honeymoon would eventually come to an end, but now I'm feeling a little nervous. I've actually got in a nice groove with his "behaving" diabetes. I don't think I'm going to be liking the "other side"!
I guess the only thing I can do is wait it out a little. I will be contacting his endo. on Monday to go over this past weeks numbers. I'll keep you updated.
Tuesday, July 31, 2012
Punch in the gut
Tonight at VBS the kids played a game of question/answer so they could get to know each other better. All of the kids made a large circle and passed around a beach ball with questions on it. Whoever caught the ball had to answer one of the question where their thumb was sitting.
Andrews question was "If you could go backwards or forward, what would you change?"
His answer: "I would go backwards so that I would have never gotten diabetes and celiac."
PUNCH TO MY GUT!
It's like no matter what, diabetes is ALWAYS in the picture. One thing I'm extremely thankful for is that he is not embarrassed of his diabetes. I've always been open with his testing and shots. He lays all his stuff out during snacks at VBS and I give his shot right there.
The kids in his VBS are kids that he's known for sometime now which softens my heart because they don't judge him. They accept him for who he is......ONE AWESOME KID!
Andrews question was "If you could go backwards or forward, what would you change?"
His answer: "I would go backwards so that I would have never gotten diabetes and celiac."
PUNCH TO MY GUT!
It's like no matter what, diabetes is ALWAYS in the picture. One thing I'm extremely thankful for is that he is not embarrassed of his diabetes. I've always been open with his testing and shots. He lays all his stuff out during snacks at VBS and I give his shot right there.
The kids in his VBS are kids that he's known for sometime now which softens my heart because they don't judge him. They accept him for who he is......ONE AWESOME KID!
Friday, June 22, 2012
Mom, I don't.........
We went to see the new Madagascar movie with the kids the other night. I would highly recommend the movie as it was very colorful and funny.
After the movie, we decided to drop by TCBY for some yogurt. Andrew was not happy with that selection because the only celiac safe topping was slivered almonds. After the rest of us got our TCBY, we hopped back in the car and journeyed off to Houlihan's for a gluten free creme brûlée for Andrew.
My little guy kept complaining that he was going to die because he was soooooo thirsty. When I picked up the creme brûlée, I requested a large glass of ice water. This cup must have held 4 cups of water.
Back to the car, my little guy guzzled that thing down like nobody's business. He has been very thirsty for water lately. I have to admit that one of my "diabetes" antennas have started to tune in.
As we're proceeding down the highway, my husband simply states, "Little guy, you have been drinking a lot of water lately."
Little guy's response: "....and Mom, 'I DON'T HAVE DIABETES!!!!!!!'
Obviously, the siblings have their own "diabetes" antennas.
After the movie, we decided to drop by TCBY for some yogurt. Andrew was not happy with that selection because the only celiac safe topping was slivered almonds. After the rest of us got our TCBY, we hopped back in the car and journeyed off to Houlihan's for a gluten free creme brûlée for Andrew.
My little guy kept complaining that he was going to die because he was soooooo thirsty. When I picked up the creme brûlée, I requested a large glass of ice water. This cup must have held 4 cups of water.
Back to the car, my little guy guzzled that thing down like nobody's business. He has been very thirsty for water lately. I have to admit that one of my "diabetes" antennas have started to tune in.
As we're proceeding down the highway, my husband simply states, "Little guy, you have been drinking a lot of water lately."
Little guy's response: "....and Mom, 'I DON'T HAVE DIABETES!!!!!!!'
Obviously, the siblings have their own "diabetes" antennas.
Monday, June 18, 2012
The Scary Times with Diabetes
Diabetes and celiac disease has been a part of our lives now for 1-1/2 years. They've gone along with us to doctor appointments, vacations, road trips, restaurants, grocery stores, clothes shopping, swimming, gymnastics, school, piano lessons, Awana, church, play dates, movies, bike rides, walks, trampoline, amusement parks, etc.......
The point is that Andrew's diabetes has always been controlled in MY presence.
A couple of weeks ago our daughter came down with stomach pains that required a visit to the local Children's ER. We just couldn't leave Andrew in a family members hands due to his insulin shots and celiac needs. Diabetes is just not something that comes with Cliff Notes. My husband could have stayed home with Andrew and his brother, but he wanted to be there for his daughter too. So, everyone loaded up in the car.
This is the first time that I felt.....scared. Scared of the huge responsibility on my shoulders to take care of our son. Diabetes kicked me smack dab square in the stomach! I know that eventually Andrew will take on complete responsibility for his diabetes care, but he's not at that point yet.
For now, I have to remind myself that I cannot control diabetes and the sticky situations that it sometimes puts us in. As for the what if's....... I need to give them to God.
The point is that Andrew's diabetes has always been controlled in MY presence.
A couple of weeks ago our daughter came down with stomach pains that required a visit to the local Children's ER. We just couldn't leave Andrew in a family members hands due to his insulin shots and celiac needs. Diabetes is just not something that comes with Cliff Notes. My husband could have stayed home with Andrew and his brother, but he wanted to be there for his daughter too. So, everyone loaded up in the car.
This is the first time that I felt.....scared. Scared of the huge responsibility on my shoulders to take care of our son. Diabetes kicked me smack dab square in the stomach! I know that eventually Andrew will take on complete responsibility for his diabetes care, but he's not at that point yet.
For now, I have to remind myself that I cannot control diabetes and the sticky situations that it sometimes puts us in. As for the what if's....... I need to give them to God.
Wednesday, June 13, 2012
Surviving Gluten Free at Hotels
Staying in a hotel can be extremely challenging for people with celiac disease. Most hotels offer a buffet where there are too many opportunities for cross contamination.
I did several things to keep our son safe during our hotel stays.
- I purchased some Toast it bags before we left. Make sure that you definitely buy more than a 2 pack. At one hotel, I had sat them down on the table and the person cleaning the dining area picked them up and threw them away. Also, you might want to check with the hotel before you go to make sure that they have a regular toaster available. A lot of hotels use the kind that you place the bread on a little conveyor belt and it drops to the bottom when it's done. If this is the case, the toaster bags cannot be used.
There was also a time when the employee had to take the bags into their kitchen to use the regular toaster. I had to reinforce them that the bread stays IN THE BAG and to not touch the inside of the bag. Keep in mind that it might take more than 1 time in the toaster to get it toasted to your liking.
- I made sure that I could have a refrigerator and microwave in our room. Before we arrived at the hotel, I located a nearby grocery store and purchased a small carton on eggs and a bag of shredded cheese. Prior to the trip, I purchased a plastic microwave omelet container like the one shown below. If you will not have a microwave in your room, I would check to see if there would be one that you could use. Make sure you pack a little bottle of dishwashing liquid to wash it when you're finished.
- At the grocery store, I also purchased a quart of milk for cereal. I packed a box of Rice Chex, Splenda and plastic silverware.
- Since Andrew has diabetes, I also packed some measuring cups and a food scale.
Monday, June 4, 2012
The UPS and downs
We had an intern doctor, a diabetic, see us before our regular endo.. He was able to teach Andrew to test the sides of his fingers versus the pads. I have been telling Andrew this for a long time now, but maybe a diabetic doctor will help since he understands first hand.
Andrew is still having lows about 3 hours after he eats so we need to add in a free carb serving (15g) at 2 hours following every meal. The lows are causing ruckus with exercise. I'm going to sporadically check his glucose in-between meals to see how high he's spiking. We might have to change his insulin ratio.
I don't know about you all, but I feel that I have to micro manage everything diabetes related! The doctors read the glucose numbers and proceed to ask me what he ate and when he ate it. I just cannot let myself get so wrapped up in the numbers. His current A1C is 5.1% so I know we're doing something right. Diabetes sometimes just likes to throw odd numbers in the mix for no reason at all....probably just to tick us off!
Since Andrew's celiac antibodies are still not in normal range, they will retest them and call me with the results. They have gone down significantly since diagnosis, but they're taking their good sweet time.
Overall, the doctor is happy with Andrew's progress. I just wish I could walk away feeling happy and not discouraged. I HATE that they constantly talk about him being overweight right in front of him. If you would look at Andrew, he does not look overweight. They go strictly on the BMI chart. I think the BMI chart should be discontinued because not everyone is the same stature. Someone with more muscle will show up as overweight because muscle weighs more than fat. Hmmmmm.....I feel a possible excuse for my next doctor's appointment coming on!lol
Thursday, May 31, 2012
Gluten Free at Raglan Road Irish Pub - Orlando
Raglan Road Irish Pub, in Downtown Disney Orlando, was a special treat for all of us. The food was delicious and the riverdance performers were great entertainment.
I made our reservation prior to leaving for our vacation. They do book up quickly! After our drink order was taken, the chef came directly to our table and spoke to us about Andrew's gluten allergy. We didn't get past the gluten free fish & chips option so I'm not even sure what other gluten free options they offer.
Their gluten free fish and chips consist of a beautiful fish fillet fried in champagne and garbanzo flour. Their fish and chips are fried in a designated gluten free fryer. The portion could have been larger, but it left room for dessert. Andrew said they were delicious!
The chef also made Andrew a side of steamed broccoli.
The rest of us ordered the regular fish and chips and they were also very DELICIOUS! I highly recommend Raglan!
Friday, May 18, 2012
Gluten Free at Planet Hollywood - Orlando
Planet Hollywood is a neat restaurant worth visiting if you are a movie buff. Just beware of the loud music.
As soon as we were seated and told the server that our son had a gluten allergy, he immediately had the chef come to our table. The chef asked what Andrew liked to eat. They could have done a cheeseburger with a gluten free bun, but he wasn't in the mood for that. He really wanted nachos, but the chips were fried in the same fryer as wheat.
He decided on the gluten free chicken fajitas. It consisted of grilled chicken over onions and peppers, white rice, cheese, lettuce and corn tortillas. I asked it to come without white rice because it would do too much havoc on Andrew's blood sugar.
WARNING: THIS IS THE WHEAT VERSION!
If your dish looks like this DO NOT eat it!
The pictured dish showed up at our table and before Andrew could even get his fork to his chicken, a lady came sprinting out from the kitchen and grabbed it from him. The rice that was on his dish was not white, it was a seasoned WHEAT rice! Thank goodness he's not crazy about rice and didn't taste it right away. That would have been a horrible thing to have a bad reaction on the 1st. day of vacation.
The new dish showed up perfect, without rice, and Andrew absolutely LOVED it! Their corn tortillas were very thin and yummy.
Thursday, May 3, 2012
We're Back!
Off to Orlando, Florida
Well, we survived 2400 miles in the car round trip. We had a blast and I'll be blogging about our adventures after I unpack and wash mounds of dirty laundry. I think I need a vacation after our vacation.lol
Andrew's diabetes and celiac were definitely in tow, but remained manageable. The hardest part for us was finding gluten free foods. Sometimes we were sent on a wild goose chase for an hour just to find an acceptable restaurant. He definitely had his fair share of bunless cheeseburgers since that was the most available gluten free option.
I learned one amazing lesson on this trip: don't let diabetes define Andrew. Yes he has diabetes, but it will never hold him back! Andrew snorkeled with beautiful fish and stingrays, swam with dolphins, rode roller coasters with multiple loops, swam in the ocean, rode water slides and ate many SUGARY TREATS (because he can)!
Their smiles above are just priceless!
Friday, March 30, 2012
Nagging Antibodies
At Andrew's endo. appointment this week, they took extra blood to test his celiac antibodies. They like to test them every 6 months.
When he was diagnosed 1-1/2 years ago, his tTG (Anti-tissue Transglutaminase Antibody) was at 134. It was confirmed through a scope that he indeed had celiac disease. I received his new tTG results this afternoon and they are at 49.
Yes, that's great improvement, but he still needs to get <20 in order for it to be normal. The thing that stinks is that he was at 47 six months ago. They aren't budging!
The gastroenterologist does not seem to be concerned as of yet. He said that sometimes the antibodies just take time to come down. In the meantime, they want me to see a nutritionist to see if he's getting glutened somewhere.
I took the risk of a gluten/non-gluten kitchen in the beginning. I'm really hoping that I don't have to change that because my daughter does NOT like gluten free foods, especially the bread. I actually prefer the Udi's gluten free bread toasted to regular bread. Each is to their own, I guess.
So, for now, I'm off on an I-Spy label reading adventure game throughout my kitchen. Anyone want to join me?
When he was diagnosed 1-1/2 years ago, his tTG (Anti-tissue Transglutaminase Antibody) was at 134. It was confirmed through a scope that he indeed had celiac disease. I received his new tTG results this afternoon and they are at 49.
Yes, that's great improvement, but he still needs to get <20 in order for it to be normal. The thing that stinks is that he was at 47 six months ago. They aren't budging!
The gastroenterologist does not seem to be concerned as of yet. He said that sometimes the antibodies just take time to come down. In the meantime, they want me to see a nutritionist to see if he's getting glutened somewhere.
I took the risk of a gluten/non-gluten kitchen in the beginning. I'm really hoping that I don't have to change that because my daughter does NOT like gluten free foods, especially the bread. I actually prefer the Udi's gluten free bread toasted to regular bread. Each is to their own, I guess.
So, for now, I'm off on an I-Spy label reading adventure game throughout my kitchen. Anyone want to join me?
Wednesday, February 8, 2012
SCARED to death
Maybe my title is a little dramatic, but I have reason to have anxiety. We are going on our first extended road trip since Andrew was diagnosed with diabetes and celiac disease. We're talking 16 hours in the car to Florida, road trip! Am I crazy?
We did this same trip about 6 months prior to Andrew's diagnosis. We all had such a blast and I'm hoping that D and Celiac behave so we can enjoy this trip just as much.
I have a thousand questions and concerns going through my head right now. The following are just a few:
We did this same trip about 6 months prior to Andrew's diagnosis. We all had such a blast and I'm hoping that D and Celiac behave so we can enjoy this trip just as much.
I have a thousand questions and concerns going through my head right now. The following are just a few:
- How in the world am I going to pack enough gluten free food to keep Andrew safe?
- What if Andrew goes low in a coaster line or after he gets on?
- How the heck do you guess a carb count for a gluten free chocolate fondue plate at The Melting Pot?
- How am I going to guess carbs period! We stay on such a strict dietary plan at home, that I'm afraid to see what happens when we stray some.
- I have my Frio pack for the insulin, but what do I do with the meter and strips at the beach?
- How are we going to fit all of our luggage in our van?
- What if Andrew spikes due to my miscalculation? I've never had to correct him before.
- I hope there's enough gluten free restaurants along the interstate to eat at.
The most frustrating thing I'm finding is that the places we will be visiting offer some gluten free options, but they can't tell you what they are until you're there. My son doesn't like salads that much and he's not going to want to eat bunless hamburgers the whole trip. It's vital that I have the right foods for his diabetes and celiac. This is definitely going to be interesting!!!
I'm open to any and all suggestions from those of you that have tackled a long road trip with diabetes in tow.
Thursday, February 2, 2012
Boy VS Diabetes
Every week, our kids participate in a bible program that they really look forward to.
Most of the time, the teachers give me heads up when they will be having a snack. This gives me an opportunity to prepare a comparable gluten free treat.
Last night was different. There was an unexpected SURPRISE! There was a basketball game at the church the previous night and there was food left over.
Hot Dogs and Cookies......NNNNoooooooo!
We had just eaten about 1 hour ago and I was taught to not give more than one shot in a two hour period. I just couldn't stand the thought of seeing Andrew's disappointing face again because diabetes and celiac got in the way.
God helped us out that night. Here, someone had prepared some gluten free cookies. YEAH! There was a little ziploc baggie that held the delicious chocolate chip goodies. I don't give our kids many treats, but I was never so happy to see cookies with those beautiful words "GLUTEN FREE" on the baggie.
I pulled Andrew aside and told him what was going on and that he could take one home for his evening snack. He was disappointed, but ok with it.
When it was time for the kids to get in line for their snacks, Andrew ran as quick as his legs could take him. I followed him with the Dbag to see if by chance he would be low enough. 87! PERFECT!
I told Andrew he could have the cookie without any insulin. He looked at me like I was crazy, but I knew he had a lot of game playing coming up. It was so wonderful to see him be just like everyone else.
At bedtime, he came in at 113. Big sigh of relief! We kicked diabetes butt, at least this time!
Most of the time, the teachers give me heads up when they will be having a snack. This gives me an opportunity to prepare a comparable gluten free treat.
Last night was different. There was an unexpected SURPRISE! There was a basketball game at the church the previous night and there was food left over.
Hot Dogs and Cookies......NNNNoooooooo!
We had just eaten about 1 hour ago and I was taught to not give more than one shot in a two hour period. I just couldn't stand the thought of seeing Andrew's disappointing face again because diabetes and celiac got in the way.
God helped us out that night. Here, someone had prepared some gluten free cookies. YEAH! There was a little ziploc baggie that held the delicious chocolate chip goodies. I don't give our kids many treats, but I was never so happy to see cookies with those beautiful words "GLUTEN FREE" on the baggie.
I pulled Andrew aside and told him what was going on and that he could take one home for his evening snack. He was disappointed, but ok with it.
When it was time for the kids to get in line for their snacks, Andrew ran as quick as his legs could take him. I followed him with the Dbag to see if by chance he would be low enough. 87! PERFECT!
I told Andrew he could have the cookie without any insulin. He looked at me like I was crazy, but I knew he had a lot of game playing coming up. It was so wonderful to see him be just like everyone else.
At bedtime, he came in at 113. Big sigh of relief! We kicked diabetes butt, at least this time!
Sunday, January 15, 2012
When You're Struggling
"Obey and leave all consequences to Him"
Sometimes it's so hard to obey God's will for our lives, especially when it involves our children. Type 1 Diabetes is definitely a hard blow to any parent. Shock and numbness comes first and then you start to experience a thousand different emotions from anger to crying in 60 seconds. That's just in the first week of diagnosis!
I didn't get really sad until about 6 months after Andrew's diabetes and celiac diagnosis. I ran on adrenaline for those first six months. I wanted to make sure that Andrew's needs were taken care of. I wanted more than anything to go back to how our lives used to be. I missed the spontaneity of life. We couldn't just pack up and go somewhere without going through a six page check list.
God has been my solid rock! Without Him, I know I would have curled up in a corner and just gave up. Let's face it, a parent of a child with diabetes is an exhausting job! However, I did not choose that path. Instead, I chose to be obedient to God and called on Him for help. One thing I can say is that He delivered!
As I trusted God and put my faith in Him, He has shown himself to me. He has amazing attributes: gracious, loving, kindness, goodness, patient, healer, protector, peace, merciful, faithful, perfect, trusting......
My prayer is that all of you out there struggling as a parent of a child with diabetes would call upon God. God loves you and your child. God hears and answers prayers of His godly children. Get on your knees and call out to Him. Ask Him to forgive you of your sins and that you want Him to come into your heart. Ask God to help you with your daily struggles with diabetes and I promise that He will deliver!
I didn't get really sad until about 6 months after Andrew's diabetes and celiac diagnosis. I ran on adrenaline for those first six months. I wanted to make sure that Andrew's needs were taken care of. I wanted more than anything to go back to how our lives used to be. I missed the spontaneity of life. We couldn't just pack up and go somewhere without going through a six page check list.
God has been my solid rock! Without Him, I know I would have curled up in a corner and just gave up. Let's face it, a parent of a child with diabetes is an exhausting job! However, I did not choose that path. Instead, I chose to be obedient to God and called on Him for help. One thing I can say is that He delivered!
As I trusted God and put my faith in Him, He has shown himself to me. He has amazing attributes: gracious, loving, kindness, goodness, patient, healer, protector, peace, merciful, faithful, perfect, trusting......
My prayer is that all of you out there struggling as a parent of a child with diabetes would call upon God. God loves you and your child. God hears and answers prayers of His godly children. Get on your knees and call out to Him. Ask Him to forgive you of your sins and that you want Him to come into your heart. Ask God to help you with your daily struggles with diabetes and I promise that He will deliver!
When you're struggling with the hardballs that diabetes throws to you, who are you going to trust????
Wednesday, December 21, 2011
Well Deserved Appreciation
The house is decorated, Christmas parties are in full swing and presents are wrapped.
This time last year, we were in the midst of Andrew's diabetes diagnoses and were just finding out that he had celiac disease. Luckily, he was able to somewhat enjoy his favorite foods through the holiday season before he had to say goodbye forever to his most treasured wheat treats.
As I was packing up some diet hot chocolate and gluten free cookies today for a church party, it really hit me on how far we have come. Andrew has done an amazing job with his healthy nutrition and switching over to gluten free foods. Trust me when I say, "IT WAS NOT EASY!"
I'd like to take a moment to thank the whole DOC for the wonderful support that you have graciously extended to us over this past year. Thank you and God Bless you and your families throughout the Christmas Season!
This time last year, we were in the midst of Andrew's diabetes diagnoses and were just finding out that he had celiac disease. Luckily, he was able to somewhat enjoy his favorite foods through the holiday season before he had to say goodbye forever to his most treasured wheat treats.
As I was packing up some diet hot chocolate and gluten free cookies today for a church party, it really hit me on how far we have come. Andrew has done an amazing job with his healthy nutrition and switching over to gluten free foods. Trust me when I say, "IT WAS NOT EASY!"
I'd like to take a moment to thank the whole DOC for the wonderful support that you have graciously extended to us over this past year. Thank you and God Bless you and your families throughout the Christmas Season!
Thursday, December 8, 2011
I hate CHANGE!
Andrew's three month appointment started out on a great foot with an A1C of 5.1. I am so proud of him and how he stays on his program!
Then things started to go down hill from there. The doctor was concerned that he gained 2 pounds. But.......he also grew. I think she wants him to stay at the weight he is now forever. I told her that he's been hungry lately and it's probably because he's growing. Also, his celiac antibodies are finally coming down which means his body is absorbing more.
She asked him what he eats for snacks. He said cheese sticks, nuts or sugar free popsicles. She took it as multiple cheese sticks and handful of nuts. So she decided to change his meal plan and add in 2 milks, 2 carbs and 2 meats during the day, plus an extra carb after gymnastics. She is thinking that this will be less calories than he's currently consuming with the protein snacks. He was only eating 2 cheese sticks per day! Now he's eating 2 cheese sticks for the meat plus 2-3 extra carbs and 2 milks. YIKES!
As me and my husband were standing there, she asked Andrew if we all eat the same thing. He told her "No." He then continued to say that he has to eat all gluten free foods and we don't. She then looked me and my husband over and said, "People that are overweight don't eat foods that are good for them." I was completely humiliated. My husband caught the glances as well.
I know that I'm overweight, but don't bring that into my child's appointment when he's lost 17 pounds and has an A1C of 5.1. My son has not lost that weight due to eating junk food I'll tell you that much.
The whole kicker of this is that she wants to put Andrew in a Medical Journal because of his unique case of diabetes. Evidently, he doesn't have the 1st. phase insulin release but has the 2nd. phase.
I don't understand why she wants to change his meal plan when his weight gain is equal to his growth.
So.... I humored the changes and he's gained 1 pound so far and has had lows every single night since the changes. We are talking 40's. You know what it means when lows come in the picture - sugar and calories! Now I'm feeding him juice boxes, yogurt, and cashews right before bed. Not good!
Wish me luck because I will have to face the music with the doctor as I go back to my previous meal plan. Extra steamed vegetables for Andrew for snacks is in order!
Then things started to go down hill from there. The doctor was concerned that he gained 2 pounds. But.......he also grew. I think she wants him to stay at the weight he is now forever. I told her that he's been hungry lately and it's probably because he's growing. Also, his celiac antibodies are finally coming down which means his body is absorbing more.
She asked him what he eats for snacks. He said cheese sticks, nuts or sugar free popsicles. She took it as multiple cheese sticks and handful of nuts. So she decided to change his meal plan and add in 2 milks, 2 carbs and 2 meats during the day, plus an extra carb after gymnastics. She is thinking that this will be less calories than he's currently consuming with the protein snacks. He was only eating 2 cheese sticks per day! Now he's eating 2 cheese sticks for the meat plus 2-3 extra carbs and 2 milks. YIKES!
As me and my husband were standing there, she asked Andrew if we all eat the same thing. He told her "No." He then continued to say that he has to eat all gluten free foods and we don't. She then looked me and my husband over and said, "People that are overweight don't eat foods that are good for them." I was completely humiliated. My husband caught the glances as well.
I know that I'm overweight, but don't bring that into my child's appointment when he's lost 17 pounds and has an A1C of 5.1. My son has not lost that weight due to eating junk food I'll tell you that much.
- Did she ever stop to think of the stress that we are under caring for a diabetic child? NO!
- Did she ever stop to think that a mother will put her own needs last to take care of her children? No!
- Did she ever think that a caretaker is exhausted at the end of the day and doesn't want to exercise? No!
- Did she ever take the time to tell us that we are also doing a great job? No!
The whole kicker of this is that she wants to put Andrew in a Medical Journal because of his unique case of diabetes. Evidently, he doesn't have the 1st. phase insulin release but has the 2nd. phase.
I don't understand why she wants to change his meal plan when his weight gain is equal to his growth.
So.... I humored the changes and he's gained 1 pound so far and has had lows every single night since the changes. We are talking 40's. You know what it means when lows come in the picture - sugar and calories! Now I'm feeding him juice boxes, yogurt, and cashews right before bed. Not good!
Wish me luck because I will have to face the music with the doctor as I go back to my previous meal plan. Extra steamed vegetables for Andrew for snacks is in order!
Thursday, November 3, 2011
My Video Interview with VJ at Diabetic 365
I was blessed with an opportunity to speak with VJ at Diabetic 365 about our journey with diabetes and celiac disease. Please visit him at http://www.diabetic365.com for recipes, exercise suggestions and more videos. Thank you again VJ!
Please click picture to view video
Thursday, October 27, 2011
Zofran to the rescue!
Early this morning (12:30 AM to be exact), I was awakened by, "Mom, my tummy hurts". As I began to come around, I realized that it was Andrew. He began to crumple up in a ball and cry due to the tummy pain.
As I stood there still half asleep, I remember trying to figure out a plan. The first thing needed to be done was to check his blood glucose. He was 105 which was refreshing, but we needed to get to the bottom of the pain. My next thought traveled to his celiac. Maybe he got glutened?
The pain continued to come in waves. They were excruciating to him. He couldn't lay down; he couldn't sit up. He was just so uncomfortable. As he was sitting on the couch watching TV, I called the on-call number to the hospital and they thought it was probably a virus.
Fast forward to 3:30 AM and he ends up throwing up all over the carpet floor. I don't know about you all, but the sound of someone throwing up is enough to wake anyone up immediately! We didn't have a sick plan, so I was going by instinct and God's guidance. I took his blood and it was 80. I gave him a couple of gluten free crackers and hoped that they would stay down. I tested his ketones - NEGATIVE!
As I was coming in and out of conscienceness, he ends up throwing up again at 5:15 AM. Thank goodness we had a bucket at this point! I took his blood and it was 95. Praise God that He's helping to keep Andrew's numbers down. I tested his ketones - LARGE! Oh No!
The next call to the hospital resulted in them wanting to see us. Thank goodness we have family that lives close by to come and watch the other kids. Through rush hour traffic we drove and finally arrived at the hospital.
His blood glucose was at 75 and his ketones were still large. They gave him a magic pill called "Zofran". Thanks to some of you talking about Zofran, I was aware of it and knew that it was used for nausea. It definitely works fast!
After 15 minutes, they gave Andrew a 15g juice box to bring his sugar up some. About 1/2 hour later, they checked to see where his blood was so we could try some cereal. I'm sitting there waiting for a reasonable number and they blurt out, "219". "What!", I chirped. He should never be that high from one little juice box. The nurse thought that it was a reasonable number. Since Andrew eats the same amount of food all the time, I just knew this number was not correct. We double checked the number with our glucometer - 5.4.3.2.1.....117. Now that's what I expected. They decided to double check him again with their glucometer and it read 120.
Again, God was with us and prompted me to recheck Andrew. I started thinking the "what if's". He would have received double insulin if we would not have questioned the nurse. Knowing that he might not keep the food down really brought on anxiety.
In the end, everything worked out just fine. Praise God for healing Andrew so quickly!
As I stood there still half asleep, I remember trying to figure out a plan. The first thing needed to be done was to check his blood glucose. He was 105 which was refreshing, but we needed to get to the bottom of the pain. My next thought traveled to his celiac. Maybe he got glutened?
The pain continued to come in waves. They were excruciating to him. He couldn't lay down; he couldn't sit up. He was just so uncomfortable. As he was sitting on the couch watching TV, I called the on-call number to the hospital and they thought it was probably a virus.
Fast forward to 3:30 AM and he ends up throwing up all over the carpet floor. I don't know about you all, but the sound of someone throwing up is enough to wake anyone up immediately! We didn't have a sick plan, so I was going by instinct and God's guidance. I took his blood and it was 80. I gave him a couple of gluten free crackers and hoped that they would stay down. I tested his ketones - NEGATIVE!
As I was coming in and out of conscienceness, he ends up throwing up again at 5:15 AM. Thank goodness we had a bucket at this point! I took his blood and it was 95. Praise God that He's helping to keep Andrew's numbers down. I tested his ketones - LARGE! Oh No!
The next call to the hospital resulted in them wanting to see us. Thank goodness we have family that lives close by to come and watch the other kids. Through rush hour traffic we drove and finally arrived at the hospital.
His blood glucose was at 75 and his ketones were still large. They gave him a magic pill called "Zofran". Thanks to some of you talking about Zofran, I was aware of it and knew that it was used for nausea. It definitely works fast!
After 15 minutes, they gave Andrew a 15g juice box to bring his sugar up some. About 1/2 hour later, they checked to see where his blood was so we could try some cereal. I'm sitting there waiting for a reasonable number and they blurt out, "219". "What!", I chirped. He should never be that high from one little juice box. The nurse thought that it was a reasonable number. Since Andrew eats the same amount of food all the time, I just knew this number was not correct. We double checked the number with our glucometer - 5.4.3.2.1.....117. Now that's what I expected. They decided to double check him again with their glucometer and it read 120.
Again, God was with us and prompted me to recheck Andrew. I started thinking the "what if's". He would have received double insulin if we would not have questioned the nurse. Knowing that he might not keep the food down really brought on anxiety.
In the end, everything worked out just fine. Praise God for healing Andrew so quickly!
Saturday, October 22, 2011
Edging Up
Between homeschooling, church, Awana, gymnastics, piano lessons, gym class and various appointments, I have unfortunately neglected my blog.
Andrew's diabetes has been behaving for the most part until the past couple of weeks. I'm noticing that his fasting numbers are starting to creep up a bit. He had been waking in the 80's. I've been seeing some 90's and a 102 this morning that made me cringe.
I know a lot of you are thinking, "What the heck are you complaining about?", but I know that this is the last step to the inevitable failure of his pancreas. I know that the next step will be adding in long acting insulin, probably Levemir. We started on Levemir when Andrew was released from the hospital after diagnosis and were able to wean off of it after a couple of months. This is a scary thought for me since he's still having some 70's and 80's when he awakens. His pancreas definitely has a mind of its own throughout this honeymooning stage.
We are coming up on his 1 year diabetes anniversary and I have to say that I'm starting to feel some anxiety. That day, November 23, is the day that our whole life changed. I praise God that He let us enjoy a wonderful care free vacation to Disney the April prior to his diagnosis of type 1 and celiac disease. His hand has literally been in every nook and cranny of our lives. Praise God for his grace (giving us something that we don't deserve)!
As I come closer to Andrew's 1 year anniversary, I'll be looking to the Lord for comfort. The following verse speaks to my heart and I hope it will speak to you too:
Joshua 1:9 "Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Andrew's diabetes has been behaving for the most part until the past couple of weeks. I'm noticing that his fasting numbers are starting to creep up a bit. He had been waking in the 80's. I've been seeing some 90's and a 102 this morning that made me cringe.
I know a lot of you are thinking, "What the heck are you complaining about?", but I know that this is the last step to the inevitable failure of his pancreas. I know that the next step will be adding in long acting insulin, probably Levemir. We started on Levemir when Andrew was released from the hospital after diagnosis and were able to wean off of it after a couple of months. This is a scary thought for me since he's still having some 70's and 80's when he awakens. His pancreas definitely has a mind of its own throughout this honeymooning stage.
We are coming up on his 1 year diabetes anniversary and I have to say that I'm starting to feel some anxiety. That day, November 23, is the day that our whole life changed. I praise God that He let us enjoy a wonderful care free vacation to Disney the April prior to his diagnosis of type 1 and celiac disease. His hand has literally been in every nook and cranny of our lives. Praise God for his grace (giving us something that we don't deserve)!
As I come closer to Andrew's 1 year anniversary, I'll be looking to the Lord for comfort. The following verse speaks to my heart and I hope it will speak to you too:
Joshua 1:9 "Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Tuesday, October 4, 2011
Compassion for the Non-Diabetic Family Members
I have to admit that when Andrew was diagnosed with diabetes and celiac disease, the whole entire household was turned upside down. Cupboards were filled with syringe containers, alcohol wipes, blood glucose meters and syringes. The kitchen was restocked with gluten free foods according to Andrew's palette. In my mind, everyone just had to go with the flow and adjust.
Overall, everyone has done a fantastic job! I've been able to schedule fun dates with the non-diabetics/celiac siblings to go and feast on gluten containing foods. I feel that I've been able to accomplish some balance so that the siblings wouldn't resent Andrew's situation. It's not his fault and I never want him to feel that way.
One thing that I've noticed over the months is that I've become somewhat "hardened" to Andrew's multiple insulin injections and finger pricks. We've taken the approach that it's just something he has to do.
I learned a great lesson this week that our daughter definitely does not share in the same approach that works for Andrew. She had a doctors appointment the other day for her vaccinations. A couple of days prior to her appointment, we made the mistake of mentioning, "Andrew gets shots everyday." She then was sure to make it clear that her shot would hurt more than the shots that he receives. At this point, I just fluffed it off and told her that everything would be ok.
As we walked into the examination room at the pediatrician's office, the floodgates were opened and tears were flying - everywhere! I felt so bad for her. Thankfully, the nurse had great aim and the shots didn't hurt her that bad. The days following the injections welcomed intensive 1-on-1 care including ice packs, a day off of school and hand picked movies.
I learned a great lesson that just because Andrew puts on the brave face, doesn't mean that the rest of us in the family are capable of that. That's what makes us all unique and special. Andrew's strength and bravery still amazes me as he tackles the diabetes and celiac monster day in and day out.
I'll definitely be sure to have more compassion next time when the floodgates open.
Overall, everyone has done a fantastic job! I've been able to schedule fun dates with the non-diabetics/celiac siblings to go and feast on gluten containing foods. I feel that I've been able to accomplish some balance so that the siblings wouldn't resent Andrew's situation. It's not his fault and I never want him to feel that way.
One thing that I've noticed over the months is that I've become somewhat "hardened" to Andrew's multiple insulin injections and finger pricks. We've taken the approach that it's just something he has to do.
I learned a great lesson this week that our daughter definitely does not share in the same approach that works for Andrew. She had a doctors appointment the other day for her vaccinations. A couple of days prior to her appointment, we made the mistake of mentioning, "Andrew gets shots everyday." She then was sure to make it clear that her shot would hurt more than the shots that he receives. At this point, I just fluffed it off and told her that everything would be ok.
As we walked into the examination room at the pediatrician's office, the floodgates were opened and tears were flying - everywhere! I felt so bad for her. Thankfully, the nurse had great aim and the shots didn't hurt her that bad. The days following the injections welcomed intensive 1-on-1 care including ice packs, a day off of school and hand picked movies.
I learned a great lesson that just because Andrew puts on the brave face, doesn't mean that the rest of us in the family are capable of that. That's what makes us all unique and special. Andrew's strength and bravery still amazes me as he tackles the diabetes and celiac monster day in and day out.
I'll definitely be sure to have more compassion next time when the floodgates open.
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