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.

Pump or no pump

After our rollercoaster day, I made an appointment with the diabetic educator. It had been a few months since we last checked in. Her response to Nathanael's rollercoaster was we need to think about a pump. This of course made his day. She explained that a pump would better keep him regulated especially since he is heading into puberity. She explained that a pump would give him insulin continusously helping him to keep his blood suger more stable. I resumed my research on pumps. Trying to figure out costs and which was is the best for Nathanael. Insulin pumps are like anything else. There are so many models with a lot of features. The price range varies from $800 to $8,000. The cheapest I have found on the internet is the Omnipod. This is a tubeless system. The insulin goes in a pod which the person wears and carries a remote. The nice thing of this one is that its tubeless. The pods are $85 for a pack of 10. Our insurance does help cover the cost of a pump and supplies. Pumps are considered durable medical equipment. What that means is that we pay 100% of the cost until we reach our deductible. Then we pay 25% of the cost. Our cost per month is going to just about double each month if we choose to get a pump. I am struggeling with the idea of getting him a pump. Not just for the increased costs but I want to make sure Nathanael really truely knows how to manage his diabetes. This is still really new to us and I want him to manage on his own first. He tends to not think about what he is eating or isn't counting correctly (if he counts at all). He is too much of a free spirit. He figures he can correct later. This makes me crazy! Today he had been home by himself most of the day. By the time I got home and made supper, his blood sugar was in the 400's. He just doesn't realize what he is doing. Sometimes he needs constant supervision. This is our first Christmas with diabetes and so far it isn't going so well. He just doesn't have self control. It's hard to expect him to have self control when we adults don't have self control when it comes to food. The only difference is, is that our pancreas does its job. Nathanael's doesn't.

What a day!

Today has been the worst rollercoaster ever. Nathanael got up this morning not feeling well. His blood sugar was the lower today than it's been in awhile. He was 194. He was feeling sick to his stomach. He had 2 pieces of toast for breakfast. By 10 he was 284. It's normal for him to have his spike about 10 but he still wasn't feeling well. He ate a half peanut butter sandwich & took some insulin. After fourth period, which was gym today, he had dropped to 232 & still not feeling well. So I told him I would pick him up at lunch & take him home. For lunch he was 154. He had some soup & insulin. I sent him to bed. After an almost 2 hour nap, his blood sugar was 66. He had a glass of milk and a snack. His blood sugar 2 hours later was in the 300's! Supper tonight was a cheese omlet & more insulin. Then his blood sugar dropped to 150 in an hour. Then an hour later he is 69. I just gave him another glass of milk. Not sure what's going on but I do know this doesn't feel good for him. He had a hard time doing homework tonight. He just can't concentrate. I may be getting up during the night tonight to check his level.