I am gearing up for the big walk. As part of our fundraiser, we are having a 5K walk at Scera Park in Orem. It will be on September 22, registration beginning at 8:30 AM. It will be a big party for the kids and teens. We will have activities for all ages after the walk, and lots of food for before and after the walk!
I am on the walk committee for the Juvenile Diabetes Research foundation, and am excited about all that has been planned. I probably should find my list of things I am supposed to accomplish by the next meeting.
Right now I am focusing on getting people to sign up on our walk team. Daniel chose the name of his team: Daniels Dynamic Army Against Diabetes. The army is pretty small so far. I need to get people to commit so I can order t-shirts.
If I get any readers from my area, let me know and I will send you a link to sign up on our team...Just think, you will get a free t-shirt, lots of free food before and after the walk, and plenty of entertainment!
Post Script to last post about Camp:
Daniel came home from camp and told me his cabinmates all swore ALOT!!!, so if he started swearing while he talked, that is why. LOL
Monday, August 13, 2007
Thursday, August 9, 2007
Diabetes Camp
Daniel is off at diabetes camp this week.
They have a whole theme of activities to keep the kids busy and having fun. He took his skateboard, and is having fun with it. He is in a cabin with 14 boys and counsilors.
I went to the camp photo site and saw pictures of him doing archery.
I get to send him email every day, but haven't heard from him. I guess he is having too much fun to write, so I should stop worrying about him.
Besides all of the fun, they have diabetes education classses every day. I am anxious to hear what all he has learned. I have heard the camp exeperience is valuable one, and the kids return year after year. They like being around other kids that are just like they are. I am glad he was able to addtend, and hope he will for many years to come.
They have a whole theme of activities to keep the kids busy and having fun. He took his skateboard, and is having fun with it. He is in a cabin with 14 boys and counsilors.
I went to the camp photo site and saw pictures of him doing archery.
I get to send him email every day, but haven't heard from him. I guess he is having too much fun to write, so I should stop worrying about him.
Besides all of the fun, they have diabetes education classses every day. I am anxious to hear what all he has learned. I have heard the camp exeperience is valuable one, and the kids return year after year. They like being around other kids that are just like they are. I am glad he was able to addtend, and hope he will for many years to come.
Thursday, August 2, 2007
The Honeymoon
We were told when Daniel was diagnosed in March, that when we got his blood sugar under control he would experience a "honeymoon" phase. During this time, his body would require little insulin, and it would almost be as if the disease went away. Of course it doesn't to away, but in gets better for a time.
About 2 months after we got home from the hospital he he was having really low readings. Dangerously low, like 42 when it should be at least 90. The first step was to take him off of the insulin he gave with meals. He was still low, so we lowered the long acting insulin. It still didn't correct the problem, so he was taken off all meds.
You would think this would be a great, relaxed happy time. It wasn't for me. I constantly worried that his levels would spike up again. Of course he was still checking his blood before meals and bedtime, but I knew it would be back, and I didn't want to be surprised.
It only took 2 months for it to come back. He is back on insulin, but it is hard to adjust his levels. He has started soccer season, and the daytime exercise sometimes doesn't kick in to make insulin until after bedtime. He sometimes wakes up really low, or hypoglycemic. This really scares me, because I know that he could not wake up, and slip into a comma.
I am sure we will get used to things as time goes on. He goes to diabetes camp next week, and will get more training and be around kids who have had the desease for a long time. If anyone reads this who has advise for us, I appreciate the comments.
Julianna
About 2 months after we got home from the hospital he he was having really low readings. Dangerously low, like 42 when it should be at least 90. The first step was to take him off of the insulin he gave with meals. He was still low, so we lowered the long acting insulin. It still didn't correct the problem, so he was taken off all meds.
You would think this would be a great, relaxed happy time. It wasn't for me. I constantly worried that his levels would spike up again. Of course he was still checking his blood before meals and bedtime, but I knew it would be back, and I didn't want to be surprised.
It only took 2 months for it to come back. He is back on insulin, but it is hard to adjust his levels. He has started soccer season, and the daytime exercise sometimes doesn't kick in to make insulin until after bedtime. He sometimes wakes up really low, or hypoglycemic. This really scares me, because I know that he could not wake up, and slip into a comma.
I am sure we will get used to things as time goes on. He goes to diabetes camp next week, and will get more training and be around kids who have had the desease for a long time. If anyone reads this who has advise for us, I appreciate the comments.
Julianna
Sunday, July 22, 2007
The Diagnosis: Type 1 Diabetes
My family started a lifelong, life altering journey on March 6, 2007. My youngest child, Daniel, was diagnosed with type 1 diabetes at age 12. It was a shock in ways, but not surprising in other ways. I really knew nothing about diabetes, nothing except a few common symptoms: thirst and frequent urination.
Prologue
It is the middle of winter. Cold in Utah, but not as cold as many past winter seasons. We are in our last year with a child in elementary school. I am looking forward to this last year being over because childhood illnesses such as colds, stomach viruses, strep throat etc. are more common where kids put hands in their mouths and then touch everything. I am looking forward to less illness in our house. I have Multiple Sclerosis, which makes me more susceptible to illness. These are the thoughts I had before March 6th. Since then I think a lot less about my health and more about the health of my children and nieces and nephews.
You see, Type 1 Diabetes, also known as Insulin Dependant Diabetes, is a genetic disease. It is an auto immune disease like M.S. Since it is genetic, my daughters had to be tested for it, along with Cieleac disease, which is common in kids with type 1 diabetes. Thankfully, nothing has turned up in the rest of the family yet, but it could at any time. Life will never be the same for any of us for the rest of our lives.
The last week in February Daniel had a cold with a cough. This had been lingering for a few weeks, so I told him I was going to take him to the doctor and get antibiotics for a sinus infection. I was busy with work, and kept forgetting to make the appointment. When I first suggested taking him to the doctor he told me that he was thirsty all of the time, and had to go to the bathroom often. After a week of him telling me this, he started wetting the bed almost every night. We went through this when he was younger, and since he was past 8 years old and wetting the bed, the doctor tested him for diabetes. I remembered this when he started wetting the bed again after having stopped 3 years earlier. I told myself, I was probably paranoid, but since I was going to take him to the doctor anyway, I would have them test him again. I talked to my husband about it, and he remembered that the extreme thirst and frequent urination were symptoms. He said he remembered that from an episode of Mash.
I finally made the appointment on a Friday. When I called to make the appointment I didn't mention the diabetes, only the sinus infection. My doctor was out that day, but Daniel could be seen by one of the partners in the practice. It was a doctor that I had never seen before. The appointment was for 4:30 in the afternoon so I wouldn't have to miss any work.
After going over the sinus symptoms, I told the doctor about the diabetes symptoms I thought Daniel might be having. The Doctor told me that if I wanted, I could have the test because it was a simple urine test. I said I would like to have it done.
Daniel peed in a cup and then came back into the room, I was still thinking it wasn't really anything. The doctor came back into the room and told me that there WAS sugar in the urine, so I might want to concider a finger poke test. Of course I agreed, starting to get a little concerned.
The doctor left the room, and the nurse came back to administer the test. In moments, our lives made a drastic change. She said that the test was out of the norm, and would warrant some blood work done at the lab. I started to get VERY concerned, and a little freaked out. I didn't know anything about diabetes! I asked, what she meant by out of the norm. She said his sugar level was 350. I told her I didn't know what that meant. "What is is supposed to be?"
"Well," She said, "The normal range for his age is between 90 and 150."
OK, so 350 WAS a little high! She told me to go into the lab the next day and get blood work, and follow up with my regular doctor when the results came in. The doctor we had seen earlier was nowhere to been seen. He never came back into the room. I was left alone with my kids, freaking out, but trying to hold it together so I wouldn't freak Daniel out.
I went back to the reception area and asked the receptionist if I could make an appointment to see our regular doctor when the results were back from the lab. I didn't know how long the test would take. The receptionist said the lab had been a little backed up lately, and it might be a week.
"NO WAY!! WE CAN'T WAIT A WEEK," I screamed to myself as she told me the Doctor would call as soon as he got the results.
I left the office upset, and not knowing what to do. I was told it was too late to go to the lab that night, since the lab closed at 5:00 and it was 5:30. (it turns out the lab was open until 8PM) I decided I would get up early and take him in first thing. I wasn't sure if he had to be fasting or not, so I decided better safe than sorry, and took him as soon as he got out of bed.
When I checked in at the lab, I asked how long it would take to get the results. They said it depended if the doctor had put a rush order on it or not. He had not. I explained that I really needed it fast, since it was for diabetes. They put a rush on it for me.
I decided I would wait until 2:00 before I called the doctor to ask for the results. I didn't want to wait for him to call me. I took Daniel to school, an I went to work. I worked as a Jr. High Computer Lab aide at my daughter's school. It was a new lab that I helped set up in January, and the teachers weren't used to scheduling it yet, so it was not uncommon for me to go most of the day without students. This was the case on that day. I had all day to at a computer with nothing to do but research diabetes.
By 2:00 I was even more freaked out than the night before. Now I knew a few things, and they all scared me to death. I called the doctor's office on my school phone and was on hold waiting for the nurse when my cell phone rang. It was the nurse I was on hold for.
"Dr. Sundwall would like you to take Daniel to the hospital...NOW." She said he had been trying to get ahold of me all day long. "If he would have seen Daniel last night he would have sent him straight to the hospital."
She told me that the hospital said we needed to check in through the emergency room, but we should go right away.
This was 2:30. School didn't get out until 2:45, and I had a classroom full of students. I couldn't leave early. My fifteen year old was in the class that was in the lab when I got off the phone. She could tell I was upset, and came up to my desk to talk to me. I told her we needed to leave as soon as the bell rang, so she should help me turn off all of the computers, and tell her class mates to shut theirs down. I couldn't stop the tears. She kept asking if I was okay, and who I had talked to on the phone.
I waited until the bell rang so I wouldn't start out right crying in front of the students. We left as soon as the bell rang, both crying. Daniel called to tell me he was home from school. He always got home about 30 minutes before I did. I asked him how he felt. He told me he was sleepy. I couldn't remember what I had read about that, but I thought I remembered reading that it was a bad thing for him to fall asleep, and I wanted to keep him awake until I got home. I remembered reading something about going into a diabetic induced coma. I didn't remember why.
I told him I would be taking him to the hospital, and he should pack a few things and be ready when I got home. (It would take me 15 minutes.) The doctor had said I should expect to be at the hospital for about a week. I told Daniel not to fall asleep, and maybe he should drink some juice or something to bring his sugar level up.
I was confused...Of course his blood sugar wasn't low, it was high, and I was telling him to take in more sugar. I made it home in record time and he was waiting for me. We said goodbye to his sister, and left for the hour long drive to Primary Children's Hospital. We checked in at the ER around 4:00.
We were seen by the triage nurse and she told us there were no beds available, and since Daniel wasn't critical, he would need to wait, as there were other children in font of us. My husband came to the hospital and we waited...and waited. They finally called us back to a room to see an ER doc at 9:00 PM. I told them Daniel was hungry, since we came straight from school. The doctor gave us the number to the kitchen and told us to call and order a meal, the kitchen was closing in minutes.
Ok, no problem. What do diabetics eat? The doctor looked at the results of the blood work that was done when we came in and agreed that he was definitely diabetic. He told us how to order the food, and said our room was ready. Daniel couldn't eat anything until he had his first shot of insulin.
Now Daniel's freaked out. SHOT? He really hated shots, they hurt! We got up to our room and the nurse came in and gave him his shot. He said it wasn't too bad. While he ate, we started our first lessons on life with diabetes.
She didn't stop teaching until after 11:00. Now it was time for another shot, the long acting insulin. First he had to have another finger poke test. He cried. It hurt. I cried, It hurt to see him scared and hurting.
The doctor explained that it was very important to have a finger poke test every night right before bed because if his blood sugar dropped too low, he could go into a comma and die. I swear, she used those exact words.
Poor Daniel. He was afraid to go to sleep. Over the next three days, they repeated those words several times. On the third day, I asked them to tone it down a little, we got the picture, and Daniel hadn't been sleeping. They agreed, and said they could give him a sedative if he needed it. He didn't want to take it, so I told him he would have to go to sleep, or I would have them give him the medicine to help him sleep. He tossed and turned, and neither of us slept much again. Sometime in the middle of the night, he said he felt low. We called the nurse in, and when she tested, he was 52.
Along with the lessons, we saw a parade of people. We had to see the nutritionist, a psycologist, a social worker, a pharmacist, people from the Juvenile Diabetes Foundation, and of course, the Endocrinologist. This is why we had to stay for 6 days. Along with all of the visitors, we had classes all day in our room with the nurses. There was a lot to learn.
In addition to monitoring his blood, they were monitoring his urine for Ketones. It was the 4th day before he had a clean sample of urine. I was alarmed at how High he was when they tested him at the doctor's office when we first got the bad news, but learned that it was not uncommon for readings to be in the 600's or even 800's. Kids with those readings were very sick. Daniel was fine. He didn't feel sick at all. They didn't even make him get into a gown. He ordered "room service" any time he wanted it. The nurses kept adding food to his requests.
Daniel is a pretty smart kid. He learned the first night that he had to give insulin every time he ate something. The more carbs he ate, the more insulin was in the shot. The Room Service menu had carbs listed for every choice. He soon learned that if he ordered something low in carbs, or a small amount of food, he didn't have to give very much insulin. After the nurses explained that he had to have the shot whether he had 10 grams of carbs or 100 grams, he finally loosened up and started eating again.
On the 6th day, we were told we could go home. We had finished all of the classes, and been visited by all of the experts, and had been given a enough books on diabetes to start our own library. All we had to do was wait for the doctor to come and give the final discharge orders. We waited until 6pm.
It was scary being on our own that first night. We got up at 12 am to test his blood and make sure he wasn't low. We did that for a week. After that, the doctor told us not to wake him up any more, he would be fine. It was almost like coming home with a new baby. We were afraid he would stop breathing in the night.
Before long, we got more comfortable with our new life. It has been 4 months now, and we have even gotten brave enough to feed him food that we don't have packaging for. This was a necessity while we were on vacation for a week. We did okay. He has been as high as 406, and as low as 42, but we know how to make corrections. I am just waiting for the other shoe to drop. I have heard so many horror stories about kids having to go back to the hospital by ambulance.
It is late, and I need to get some sleep. Tomorrow I will write about our short "honey moon."
Prologue
It is the middle of winter. Cold in Utah, but not as cold as many past winter seasons. We are in our last year with a child in elementary school. I am looking forward to this last year being over because childhood illnesses such as colds, stomach viruses, strep throat etc. are more common where kids put hands in their mouths and then touch everything. I am looking forward to less illness in our house. I have Multiple Sclerosis, which makes me more susceptible to illness. These are the thoughts I had before March 6th. Since then I think a lot less about my health and more about the health of my children and nieces and nephews.
You see, Type 1 Diabetes, also known as Insulin Dependant Diabetes, is a genetic disease. It is an auto immune disease like M.S. Since it is genetic, my daughters had to be tested for it, along with Cieleac disease, which is common in kids with type 1 diabetes. Thankfully, nothing has turned up in the rest of the family yet, but it could at any time. Life will never be the same for any of us for the rest of our lives.
The last week in February Daniel had a cold with a cough. This had been lingering for a few weeks, so I told him I was going to take him to the doctor and get antibiotics for a sinus infection. I was busy with work, and kept forgetting to make the appointment. When I first suggested taking him to the doctor he told me that he was thirsty all of the time, and had to go to the bathroom often. After a week of him telling me this, he started wetting the bed almost every night. We went through this when he was younger, and since he was past 8 years old and wetting the bed, the doctor tested him for diabetes. I remembered this when he started wetting the bed again after having stopped 3 years earlier. I told myself, I was probably paranoid, but since I was going to take him to the doctor anyway, I would have them test him again. I talked to my husband about it, and he remembered that the extreme thirst and frequent urination were symptoms. He said he remembered that from an episode of Mash.
I finally made the appointment on a Friday. When I called to make the appointment I didn't mention the diabetes, only the sinus infection. My doctor was out that day, but Daniel could be seen by one of the partners in the practice. It was a doctor that I had never seen before. The appointment was for 4:30 in the afternoon so I wouldn't have to miss any work.
After going over the sinus symptoms, I told the doctor about the diabetes symptoms I thought Daniel might be having. The Doctor told me that if I wanted, I could have the test because it was a simple urine test. I said I would like to have it done.
Daniel peed in a cup and then came back into the room, I was still thinking it wasn't really anything. The doctor came back into the room and told me that there WAS sugar in the urine, so I might want to concider a finger poke test. Of course I agreed, starting to get a little concerned.
The doctor left the room, and the nurse came back to administer the test. In moments, our lives made a drastic change. She said that the test was out of the norm, and would warrant some blood work done at the lab. I started to get VERY concerned, and a little freaked out. I didn't know anything about diabetes! I asked, what she meant by out of the norm. She said his sugar level was 350. I told her I didn't know what that meant. "What is is supposed to be?"
"Well," She said, "The normal range for his age is between 90 and 150."
OK, so 350 WAS a little high! She told me to go into the lab the next day and get blood work, and follow up with my regular doctor when the results came in. The doctor we had seen earlier was nowhere to been seen. He never came back into the room. I was left alone with my kids, freaking out, but trying to hold it together so I wouldn't freak Daniel out.
I went back to the reception area and asked the receptionist if I could make an appointment to see our regular doctor when the results were back from the lab. I didn't know how long the test would take. The receptionist said the lab had been a little backed up lately, and it might be a week.
"NO WAY!! WE CAN'T WAIT A WEEK," I screamed to myself as she told me the Doctor would call as soon as he got the results.
I left the office upset, and not knowing what to do. I was told it was too late to go to the lab that night, since the lab closed at 5:00 and it was 5:30. (it turns out the lab was open until 8PM) I decided I would get up early and take him in first thing. I wasn't sure if he had to be fasting or not, so I decided better safe than sorry, and took him as soon as he got out of bed.
When I checked in at the lab, I asked how long it would take to get the results. They said it depended if the doctor had put a rush order on it or not. He had not. I explained that I really needed it fast, since it was for diabetes. They put a rush on it for me.
I decided I would wait until 2:00 before I called the doctor to ask for the results. I didn't want to wait for him to call me. I took Daniel to school, an I went to work. I worked as a Jr. High Computer Lab aide at my daughter's school. It was a new lab that I helped set up in January, and the teachers weren't used to scheduling it yet, so it was not uncommon for me to go most of the day without students. This was the case on that day. I had all day to at a computer with nothing to do but research diabetes.
By 2:00 I was even more freaked out than the night before. Now I knew a few things, and they all scared me to death. I called the doctor's office on my school phone and was on hold waiting for the nurse when my cell phone rang. It was the nurse I was on hold for.
"Dr. Sundwall would like you to take Daniel to the hospital...NOW." She said he had been trying to get ahold of me all day long. "If he would have seen Daniel last night he would have sent him straight to the hospital."
She told me that the hospital said we needed to check in through the emergency room, but we should go right away.
This was 2:30. School didn't get out until 2:45, and I had a classroom full of students. I couldn't leave early. My fifteen year old was in the class that was in the lab when I got off the phone. She could tell I was upset, and came up to my desk to talk to me. I told her we needed to leave as soon as the bell rang, so she should help me turn off all of the computers, and tell her class mates to shut theirs down. I couldn't stop the tears. She kept asking if I was okay, and who I had talked to on the phone.
I waited until the bell rang so I wouldn't start out right crying in front of the students. We left as soon as the bell rang, both crying. Daniel called to tell me he was home from school. He always got home about 30 minutes before I did. I asked him how he felt. He told me he was sleepy. I couldn't remember what I had read about that, but I thought I remembered reading that it was a bad thing for him to fall asleep, and I wanted to keep him awake until I got home. I remembered reading something about going into a diabetic induced coma. I didn't remember why.
I told him I would be taking him to the hospital, and he should pack a few things and be ready when I got home. (It would take me 15 minutes.) The doctor had said I should expect to be at the hospital for about a week. I told Daniel not to fall asleep, and maybe he should drink some juice or something to bring his sugar level up.
I was confused...Of course his blood sugar wasn't low, it was high, and I was telling him to take in more sugar. I made it home in record time and he was waiting for me. We said goodbye to his sister, and left for the hour long drive to Primary Children's Hospital. We checked in at the ER around 4:00.
We were seen by the triage nurse and she told us there were no beds available, and since Daniel wasn't critical, he would need to wait, as there were other children in font of us. My husband came to the hospital and we waited...and waited. They finally called us back to a room to see an ER doc at 9:00 PM. I told them Daniel was hungry, since we came straight from school. The doctor gave us the number to the kitchen and told us to call and order a meal, the kitchen was closing in minutes.
Ok, no problem. What do diabetics eat? The doctor looked at the results of the blood work that was done when we came in and agreed that he was definitely diabetic. He told us how to order the food, and said our room was ready. Daniel couldn't eat anything until he had his first shot of insulin.
Now Daniel's freaked out. SHOT? He really hated shots, they hurt! We got up to our room and the nurse came in and gave him his shot. He said it wasn't too bad. While he ate, we started our first lessons on life with diabetes.
She didn't stop teaching until after 11:00. Now it was time for another shot, the long acting insulin. First he had to have another finger poke test. He cried. It hurt. I cried, It hurt to see him scared and hurting.
The doctor explained that it was very important to have a finger poke test every night right before bed because if his blood sugar dropped too low, he could go into a comma and die. I swear, she used those exact words.
Poor Daniel. He was afraid to go to sleep. Over the next three days, they repeated those words several times. On the third day, I asked them to tone it down a little, we got the picture, and Daniel hadn't been sleeping. They agreed, and said they could give him a sedative if he needed it. He didn't want to take it, so I told him he would have to go to sleep, or I would have them give him the medicine to help him sleep. He tossed and turned, and neither of us slept much again. Sometime in the middle of the night, he said he felt low. We called the nurse in, and when she tested, he was 52.
Along with the lessons, we saw a parade of people. We had to see the nutritionist, a psycologist, a social worker, a pharmacist, people from the Juvenile Diabetes Foundation, and of course, the Endocrinologist. This is why we had to stay for 6 days. Along with all of the visitors, we had classes all day in our room with the nurses. There was a lot to learn.
In addition to monitoring his blood, they were monitoring his urine for Ketones. It was the 4th day before he had a clean sample of urine. I was alarmed at how High he was when they tested him at the doctor's office when we first got the bad news, but learned that it was not uncommon for readings to be in the 600's or even 800's. Kids with those readings were very sick. Daniel was fine. He didn't feel sick at all. They didn't even make him get into a gown. He ordered "room service" any time he wanted it. The nurses kept adding food to his requests.
Daniel is a pretty smart kid. He learned the first night that he had to give insulin every time he ate something. The more carbs he ate, the more insulin was in the shot. The Room Service menu had carbs listed for every choice. He soon learned that if he ordered something low in carbs, or a small amount of food, he didn't have to give very much insulin. After the nurses explained that he had to have the shot whether he had 10 grams of carbs or 100 grams, he finally loosened up and started eating again.
On the 6th day, we were told we could go home. We had finished all of the classes, and been visited by all of the experts, and had been given a enough books on diabetes to start our own library. All we had to do was wait for the doctor to come and give the final discharge orders. We waited until 6pm.
It was scary being on our own that first night. We got up at 12 am to test his blood and make sure he wasn't low. We did that for a week. After that, the doctor told us not to wake him up any more, he would be fine. It was almost like coming home with a new baby. We were afraid he would stop breathing in the night.
Before long, we got more comfortable with our new life. It has been 4 months now, and we have even gotten brave enough to feed him food that we don't have packaging for. This was a necessity while we were on vacation for a week. We did okay. He has been as high as 406, and as low as 42, but we know how to make corrections. I am just waiting for the other shoe to drop. I have heard so many horror stories about kids having to go back to the hospital by ambulance.
It is late, and I need to get some sleep. Tomorrow I will write about our short "honey moon."
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