Scary

Parents and care takers of children with Type 1 know how scary this disease can be.  The common theme of the majority of the posts that I read on Facebook have to do with how unpredictable and frustrating this is. We have been fortunate to have not had too many roller coaster days.  But when they do hit, they are very scary.

A couple of weeks ago, we made some changes to Nathanael's settings.  He started to see an endocrinologist.  We never got established with one because there wasn't one in our town.  I asked his doctor and his diabetic educator what an endocrinologist would do that we weren't doing already.  So I was comfortable with the level of care we were receiving.  We were fortunate to get one to come to town.  His specialty is Type 1. Nathanael and I went to a talk that he was doing about Type 1.  I wanted Nathanael's opinion about the doctor.  He really enjoyed the talk so I made an appointment.  The doctor's philosophy is to not change too many things at once.  He likes to make one change at a time and see what happens. The first thing that he noticed was that Nathanael's basal settings were too low.  He wasn't getting enough insulin throughout the day.  That causes him to take more insulin at meal times.  The other problem that I have with Nathanael is that every time he checks his blood sugar, he will do a correction, even if he still has active insulin.  By doing that, he is building up the insulin, then at night when it all wears off, he crashes.  So the first step was to increase his basal rates and we also change his carb ratio.  At first, he ran higher than he had been.  Now it seems that he is adjusting.

The other night, his numbers were running pretty good.  He went to bed his number was 120.  He had no active insulin on board.  Then 45 minutes later, he comes upstairs to the kitchen because he couldn't sleep.  Normally he goes right to sleep.  He checked his number and he was 53.  Where in the world did that come from?  He took 3 glucose tablets and rechecked a few minutes later.  Now he was 46!  He was on a fast drop and had he gone to sleep, who knows what cold have happened.  I normally check him at 11:30 and 1:30.  It took a liquid glucose shot, a roll of smarties, and shutting his pump off for a bit before he started to rise.  I asked him when he was coherent again if that scares him.  He said yes.  We have been very fortunate that Nathanael hasn't had any complications from diabetes.  He has never been in the hospital and has never had DKA.  He has been very lucky.

One thing we don't do is dwell on the whys.  He actually never asks.  I do question why in the world did he all of a sudden drop.  I ask him if he did anything different that would have caused it.  He did change his reservoir earlier in the evening.  He does go down with fresh insulin so that could be it.  I have chosen to not dwell on the whys for too long.  We have been dealt Type 1 for some reason and now we need to just live with it and move on.  Yes my husband would say that I'm obsessed with it.   And obsessed with trying to keep Nathanael safe.  And he is right.  I am obsessed.  I worry when he goes to bed.  I worry when he goes to school.  I worry when I don't hear from him when he is home alone.  I worry when he is at a friend's house.  Will he set his alarm and wake up to check in the middle of the night?  I'm just a mom worried about the safety of my child.  I don't know too many parents who do not take their children's safety seriously.  I also don't know too many moms who wouldn't bend over backwards to keep their kids safe.

3 Month check up

Today was A1C testing day.  This is the second test since being on the pump.  The first one was after taking a vacation from his pump while at Bible camp.  That didn't go so well but his A1C was 7.9 in July.  So today his A1C was 7.6! He is staying pretty consistent.  I think we are going to make some more adjustments to his settings to bring him down just a little bit more.  Ever since we got started on the new pump, his numbers have been higher.  It is nice to have a tester that communicates with the pump.  He is also liking the fact that all the information is on the bolus screen.

New Pump

Look what arrived today!  Nathanael is very excited about his new pump.  I got everything all set up and he is up and running.  It will be nice to also have a tester that communicates with his pump so all of his readings will be captured.  

Officially approved!!

Nathanael received a pump back in March from a very generous person here in town.  We didn't go through the official approval process with insurance.  His numbers have been really good since he began pumping.  His last A1C wasn't a clear reading with his pump because he took his pump off for a week while at camp.  That wasn't exactly a good blood sugar week.  A few weeks ago, Nathanael and I went to the Take Control of Your Diabetes conference in Missoula.  I talked to the Medtronic rep and the T-slim rep while there.  We decided that now is the time to get him a new pump since we have met his deductible for the year.

Medtronic went through the whole process to get Nathanael approved for a pump.  We got the letter on Saturday that he has been approved!  So very excited that he is officially approved to be using a pump.  The pump has made a huge difference in his diabetes.  His blood sugars stay lower and he also comes down faster than when he was on shots.

Complaining

I don't complain about my son having T1D.  Yes I was upset and scared the day he was diagnosed.  I didn't really know what a whole lot about diabetes and didn't know what it meant for us.  We took the diagnosis and just started our new life of carb counting and insulin. I talk a lot about his diabetes but I don't complain.

Today has been one of those days that most people complain about.  Nathanael has been having really good numbers since he came back from camp.  In fact, we have been battling  a lot of lows especially at night. This was completely new to us.  So we have been trying to get him to eat some protein before bed to help keep him elevated.  Well, he really likes peanut butter.  He also doesn't like to measure.  So he has been having night time highs because of it.  It's been working out because he gets up at normal numbers or even lower than we are used to.  Nathanael's night time number last time was too high for comfort.  He was in the 300's.  So he got insulin at 2 AM.  Then at 6 he was still in the lower 200's.  So he got more insulin.  I figured he would need to do a site change.  I just let him sleep and got the supplies out for him to do it when he got up.  Of course, being 13, he doesn't like to take care of himself first.  So it took him a little while to change his site and his reservoir since he was almost out of insulin.  He did go lower initially after his site change and then he ate lunch.  I called him during my lunch time to see what his blood sugar was and he was 540.  I couldn't believe it.  He has been doing so well.  He ate 5 corn dogs for lunch.  I was sure he underestimated the carbs.  He doesn't look anything up.  He just guesses.  But after doing the math, he was only under by about 20 carbs.  That isn't that big of a difference to go so high.  He gave himself more insulin and I told him to check in 30 minutes, drink lots of water, check for keytones, and drink more water until he felt like he couldn't drink anymore.  He did have slight keytones so I told him drink more.  After 30 minutes, his blood sugar had gone up another 20 points.  He took his site out without me telling him to change his site and low and behold, his canula was bent. He changed his site again, gave himself the insulin that he didn't get at lunch.  So after another 30 minutes, he dropped 100 points.  The rest of the afternoon he has been dropping.  Supper tonight consisted of scrambled eggs. No carbs so he didn't have to take any more insulin.  He took 4 more units at 5 PM.  So hopefully by bedtime he will be back in normal range.

It's days like this that I can see why people get so frustrated with diabetes.  I just don't complain about what I can't change.  I try to get Nathanael to understand what is going on.  He gets so upset when he's running high.  I try and get him to stop and think about how long it has been since he last tested.  How long he last ate.  What did he eat.  He just needs someone to explain to him that when he puts 5 pounds of peanut butter on 2 pieces of bread that he is going to go high and stay high through out the day.  I try to explain I don't care what you eat or how much, but it needs to be measured and carbs counted correctly.

Tonight he was doing dishes and starting to get really frustrated.  I made him quit and take a break.  He was headed for a breakdown.  He laid on the couch in complete frustration.  His blood sugar was still coming down.  He gets frustrated about the littlest things when he is high.  So as he laid on the couch, I sat with him and reminded him of what he learned at camp with regard to yoga.  He really wasn't impressed with yoga but it taught him some deep breathing. So I helped him with his breathing to calm down.  After about 4 rounds, he said, I feel much better now.  I then explained to him that when he starts to feel that way he needs to learn to take a break and calm himself down.  It does no one any good with him frustrated.  When he gets frustrated, his blood sugar just goes higher, he get angrier, then gets more frustrated and he just keeps going up.  It's a terrible cycle that only he can break.

I just hope that he can learn to deal with all of this when he is completely on his own.  That way he won't have to live a frustrated life with T1D.  He has never complained about how terrible diabetes is.  Yes it isn't a pleasant thing to have but he has adjusted well to his new life.  Ever since diabetes camp, he has been doing a really good job in taking care of himself.  He doesn't hide his pump on the inside of his shorts.  He was even given a medical alert bracelet from his grandfather that belonged to his grandmother.  He never wanted to wear a bracelet until his grandpa gave it to him.  He wore it for 3 days before I told him that we would need to have type 1 engraved on the back.  (Diabetic was already engraved and I wanted Type 1 put on there.)  When I came back from the jewelry he asked if I was able to get it engraved.

I feel that God doesn't give us more than we can handle.  I also believe that Nathanael was chosen because he can handle this.  I'm also very thankful that we live in a part of the country where Nathanael doesn't have to deal with ignorance.  He doesn't get the comments like "you got diabetes from eating too much sugar."  I don't have friends who post not so funny diabetes jokes on my Facebook wall.  We live and associate with a pretty understanding community.  Should he be eating donuts?  The question really is, should any of us really be eating donuts?

New name for Type 1 Diabetes

We just started our second year with diabetes and it already feels like a lifetime.  Our everyday language and conversations has dramatically changed.  We never had to take time out before each meal to count and measure what we were eating.  Our language now contains questions, "What's your number?", "Is he high?", "Is he low?", "How many carbs are you eating?", "Have you checked your blood sugar?" and the list goes on.

I have let him do the things he wants to do.  This summer he got signed up for 3 camps.  I had a few people tell me how brave I am to let him go.  But I figure, your only a kid once and he has to learn how to live with his diabetes.  It isn't easy for me to let him go.  The biggest reason is that people just don't understand what diabetes is.  They don't understand how serious it is.  They also don't understand that we are only a little more than a year into this and he is not responsible for himself.  He needs someone to remind him to check his blood sugar, to count his carbs and to plug all that into his pump.When he was gone to the first camp this summer, he did pretty well.  He had one day where his pump site came off and he couldn't get it to stay on.  (He might have had better luck if he would have showered more often. :)) He tended to run on the lower side. Then came Bible camp.  Here there is one counselor for 6 or 8 boys.  I talked to the counselor and told him that Nathanael needed to check his blood sugar regularly.  His sister was there so I figure if there were any problems, she would be able to help.  Well, at the end of the week, I find out how camp really went....AWFUL!  He took his pump off on Monday and switched back to shots.  This would have been fine, if he was checking his blood sugar often.  Nope, one day he only checked once!  His sister also told his counselor that he needs to be reminded to check his blood sugar.  He ran really high the whole week, except for the one 39 that happened at 10:30 at night.  That was the day he only checked once.

Ever since he has gotten back from Bible camp, I have been trying to figure out what to do about camp next year.  How do I explain to the counselor that this is serious?  Well, today, I figured that I will no longer say he has diabetes.  I will say "He has a condition where his pancreas is broken and does not produce the insulin that the body needs to break down carbs.  He has to check his blood sugar to make sure that he isn't going too high or too low.  If he doesn't, he can die."  People just don't understand what diabetes is.  I am fortunate enough to live where we don't get questioned too often about what we are feeding him or how we are treating his illness.  We have a good school nurse who keeps a good eye on all the kids in school with T1D.  But how do I make the rest of the world understand.  I understand that the only person in this world who can take care of Nathanael is Nathanael but I count on adults to watch over him.   I count on the adults to hold him accountable.

So from now on, my son doesn't have Type 1 Diabetes, he has a condition where he can and will die if he doesn't pay attention to his blood sugar.

Perfect number

When I checked Nathanael's blood sugar yesterday morning, he was over 300. His site had fallen out during the night. He kept that site in for 6 days so it was time to change anyway. It took all day for him to get down into the 100's.

Before he went to bed, his blood sugar was 255. I wasn't too concerned because he has a bowl of sherbert an hour before and he still had active insulin.

I checked him at 2 to make sure he had come down. Not really. He was 231. So I plugged that into his pump and gave him more insulin.

Now it's 7 AM. I checked him to make sure he was lower. Yes he was lower, 100 to be exact! This is only the second time he's been a perfect 100.

Busy Summer

It has been a couple of months since my last post.  Nathanael started on a pump the end of April and things have gotten a lot easier and better.  His numbers have been lower and he isn't as hungry.  He is still growing like a weed and diabetes seems easier to deal with.  On the other hand, there are a lot more worries.  It feels like we are starting all over again back to day one.  We are continuing to make adjustments to his settings to stay in range.  I get up two times a night to check his blood sugar to make sure he isn't going low or getting too high.  I'm trying to let go and feel comfortable with where he is at during the night.  I have only gotten up a couple of times this week and only one time a night.

School is out and like many parents, I struggle with what to do with my kids.  Both kids go to Bible camp but that is only one week during the summer.  This year I decided that Nathanael was going to go to Diabetes Camp and with the generosity of my mom, he is going to do that too.  He mentioned that he wanted to go to band camp also.  So I got him signed up.  When all was said and done, he is going to camp every other week starting in June and going through July.  I'm glad that he will be busy this summer but it makes me very nervous.  In our year with diabetes, I have come to realize that the only person who will help Nathanael take care of his diabetes when he is away from home is Nathanael.  But who is going to make sure he is okay during the night?  No One.  So I try to educate him as much as possible and just hope he is listening to me.  We all know how well teenagers listen!  The first big test came the week of June 22.  He was at band camp.  He was able to text me and call me as needed.  I was extremely nervous!  My husband thinks I'm psycho  because I worry so much.  But I just don't know if Nathanael was listening to me.  I told him to at least text me his number before he goes to bed.  We discussed what number is a good number to go to bed. Long story short, he survived the week and so did I.  He had a lot of lows during the day and only a couple of highs (low 200's so really not too bad.)

Now I'm preparing for Bible camp.  He will not have the ability to get in touch with me when needed.  He is completely on his own.  His sister will be there so that gives me some comfort.  It is my hope that he stops long enough to take care of himself.  I can educate his counselors and the nurse as much as possible. But it ultimately comes down to he needs to do everything himself.  He needs to remember to test his blood sugar the bare minimum of 4 times a day; breakfast, lunch, dinner, and bedtime.

After Bible camp, he will be home for a week of appointments.  He has to get his yearly blood work done, follow-up dentist appointment on his new braces, his 15 month check up, and finally another appointment with the diabetic educator.  Then we pack again for diabetes camp.   Why couldn't diabetes camp be first?  Oh well, I hope he learns a lot from diabetes camp and has a lot of fun.

1 year anniversary

Today is Nathanael's one year anniversary since diagnosis of diabetes. The diagnosis came completely out of left field. This past year we have learned so much about how our body functions.

The biggest lesson I've learned this past year is how much we take our bodies for granted. We learned how to count carbs, check blood sugars, and give shots. We have also learned that diabetes doesn't play fair. What works one day may not work the next. We have learned that there are some foods that Nathanael just can't eat. No matter how accurate we measure and take either the right amount of insulin or even more, his sugar still goes really high.

We can't just run out of the house without having supplies. We need to be prepared for anything. Nathanael needs to always have his pack that includes a tester, insulin, swabs, needles, water & glucose drinks for lows.

I don't limit Nathanael's food. He is a growing boy. He takes anywhere from 45-60 units of fast acting insulin a day. Then at night he takes 35 units of long acting insulin.

Monday we meet with our diabetes educator. Nathanael was given a pump by some very generous people. We are going to see if it will work for him. He is very excited. I am too. I hope we can stop chasing sugars and find another new normal.
This next year we will continue to learn about diabetes. In fact, we learn something  everyday.

Sense of Entitlement

    Why is it that we live in a world where people feel that they are owed?  Lately I’ve been reading posts on a Facebook group that I belong to about how people get special passes at Disney World or Disney Land for their kids who have T1D.  I find this very strange.  I try my best to make sure my son is treated as normal as possible.  After all, he is still 13 and last time I looked perfectly normal it’s his pancreas that is broke.  His only problem is that he has diabetes.  He does anything and everything that normal 13 year old boys do.  He loves to play video games.  He is good at sports, enjoys being around his friends. 

There are lots of groups that I belong to say be a kid first and diabetes second.  So why do parents feel that their children are entitled to get in front of a line while at an amusement park?  To me that is sending the wrong message.  I am all for making sure my child has his rights as a person with a chronic illness/disability but to be able to go to the front of the line while at an amusement park?  Really? Why not be prepared with water for highs and snack for lows?  Where I come from going to an amusement park is a privilege, a very cool vacation for families.  

Children with T1D are able to have a 504 plan filled out and on file with their schools to make sure they have certain rights while in school.  “A "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or post secondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.” There are certainly some privileges that they need in order to stay healthy.  For example, they need to have open access to the restrooms, be able to have water at all times, and be able to have a snack when needed.  To me these are reasonable accommodations.  Some other accommodations that are reasonable when dealing with school aged children are allowing extra time to do homework.  This is one provision that I have struggled with asking for.  My son doesn’t like doing homework as it is, I’m not about to give him extra time to do work that he doesn’t want to do in the first place.  So we do the best we can.  There are times that his blood sugar is too high and he just can’t think so homework is done for the night.  If, and when that happens, he gets up early in the morning and gets his work completed before school.  On very rare occasions, I email his teachers and let them know that homework just didn't happen the night before.  I am very lucky to be in a school district where he does get some lenience.  But I am not about to give him a free ride.  He still needs to complete the work.  He has really learned with his diabetes that he needs to study.  His brain does not work the same.  I feel that by giving out children too many allowances, they will not learn to live in the real world when they grow up and are adults. 

I’m trying to teach my son to be responsible and sometimes diabetes gets in the way.  There is a time and place to use “I have diabetes” trying to get in front of a line at an amusement park, to me, is not one of those times.  We, parents of children with T1D, should be teaching our children how to manage their diseases, not how to get a free ride.  We should also not be teaching them that the world owes us because we have a chronic illness.  It isn't the world's fault that their pancreas quit on them.  So teach them how to deal with it and move on.  

Frustrated!

Do people really not know how serious T1D is? Nathanael went on a church retreat for the weekend. In anticipation, I talked to 3 different people asking them to watch over him & make sure he tested & took his insulin. He called today when they left to come home. He told me he was in the 400's a lot. I thought ok, he was running around a lot, that makes sense. Then he texted me 2 hours later & his BS is 511! He hadn't tested since breakfast at 8 & it was 3. He just guessed at lunch. When he got home, I cleaned out his pack & checked his tester. He only tested yesterday 5 times. But he was over 400 3 of the 5 times. He is so lucky to not have had any problems. I asked him if anyone checked on him & he said no. Unless he has more responsibility for his diabetes on his own, he will not be going on this trip next year. Where were the adults?

Exhausting

Rising and lowering blood sugars sure is exhausting!  We have been battling low blood sugar for the past couple of days.  Yesterday Nathanael had a bowling tournament and we struggled to keep his blood sugar up.  He found when he was close to 100 he wasn't bowling very well.  He feels the best when he is about 120.  I even gave him two peanut butter cups for 24 carbs to get his sugar up.  Normally this would send him through the roof without a shot.  It didn't have that much of an effect.  It gave him enough of a boost to help him finish the tournament.  He qualified for day 2 in third place.  He bowled awesome!  The best part of bowling was he was consistent all day.

After we got home last night and had dinner, he blood sugar decided to start rising.  He all of a sudden was nearing 300.  I have no idea where this came from.  It certainly wasn't what he ate.  He ended up going to bed last night in the 200's.  I checked him during the night and he was 256.  I almost gave him a shot but I didn't know how his blood sugar would react so I didn't.

He got up today at 233.  I gave him a correction before his shower.  Then after his shower, he had a smoothie for breakfast and took a shot for it.  Two hours later his blood sugar was unchanged.  It hadn't gone up and hadn't gone down.  Finally after two bowling games, his blood sugar dropped to 156 and he wanted food. (The story of my life.  He always wants food.) He took a shot and had a snack.  We didn't check again until after we got home.  (Which was 2 hours after his last shot and his snack.)  He all of a sudden asked for his tester and checked his blood sugar.  He was 55!  He did have a lot of water to drink while bowling.  I think all the water and the exercise from bowling just caught up to him.  I gave him a large glass of milk and started his lunch.  Within an hour, his blood sugar has now risen to 149.  He was complaining he was cold and was yawning.  So he grabbed a blanket and I convinced him to take a little nap.  Within 5 minutes, he was out cold.

I can only imagine how this must feel to him.  I know what low blood sugar feels like but I have no idea what it feels like to go from normal to very low back to normal within an hour.  No wonder he is tired.

T1 Diabetes Frustration

One thing that every person living with diabetes really understands about diabetes is that it makes no sense.  I'm trying to help my son's body work like mine and no matter what we do today, tomorrow will be different.  For the past few months we have been dealing with mostly highs and have been trying hard to get Nathanael back down to normal levels.  We have tried increasing his fast acting insulin at meals and he still has spikes in the morning.  We have tried increasing his long acting insulin in hopes of getting him lower.  After that didn't work, we tried splitting his dosages for about a week and that didn't work.  So we went back to once a day at bedtime and increased him until his morning level was lower.  Finally, his fasting blood sugar was below 200.

The other thing we are now doing is adding up his carbs, dividing by 10 and adding 3.  This is how much insulin he takes at meal times.  This has really been helping him to not have such a huge spike after meals.  The "standard" carb number for people with diabetes is 15 carbs.  Anytime a person is eating or drinking something with 15 or less carbs, no insulin in needed.  Well, 15 carbs is just a little too much for Nathanael. We were doing 11 carbs then Nathanael was adding 2 units of insulin.  Since we starting dividing by 10 that has really worked.

The other thing that has been helping with his blood sugar is to make him go to bed about the same time every night.  Usually on the weekends, he stays up really late.  I have been finding that when he does this, his blood sugar is higher in the morning and then we fight highs all day.  I have also been checking his blood sugar early in the mornings on days where he sleeps in.  Because this too causes his blood sugar to go high.  So if he is over 200, I will give him a shot and then when he gets up in the morning, he is lower.  So far this has been working.

Now all of a sudden this week, his morning level is getting lower and lower.  Each day is a new lowest.  Yesterday morning, I checked his blood sugar after I got up and it was 105.  That is really good but it got me a little concerned.  How low did he go during the night?  I don't normally check him during the night because we have never had an experience of him going too low.  Usually at bedtime, if his blood sugar is over 200, I make him take at least 2 units of insulin to try and keep him lower during the night and it has been helping.  But the last two nights, his blood sugar has been lower so he hasn't been taking the Novolog.  I have no explanation of why he was 105.  Then this morning, I checked his blood sugar after I got up and he was 87.  This is really scary for me.  For people without diabetes, 87 is normal.  For Nathanael, this isn't so good.  He doesn't feel well.  He feels very week and his legs are shaky.  So he got up and drank a small glass of milk.  Within 30  minutes, his blood sugar had risen to 161.  When he finally got up this morning, he was 121.

These numbers are really good but what I don't understand is why now all of a sudden has he leveled out and even started to have more lows?  Today has been a really good blood sugar day.  So has he now finally hit another milestone and broken another barrier?  How long will this last?  The only thing that I know is that tomorrow will not be like today.  I don't know what it will be like it's just going to be different.  Tomorrow should be a good day.  He has a bowling tournament and will be bowling 9 games.