Tuesday, December 14, 2010

Interview with an adult type 1 diabetic

How were you diagnosed with type 1 diabetes? What symptoms did you have?
I was diagnosed with Type 1 diabetes when I was 13 years old. I had been very thirsty and drinking a lot of water, and was feeling pretty run down most of the time. I had symptoms for about 6 weeks. One night, I wet the bed, and my mom and I realized that I might have diabetes. I checked my blood sugar on a glucose meter at my mom’s work, and it was high. I went in to see a doctor and was diagnosed.

Does anyone in your family have type 1 diabetes?
I have one cousin who also has type 1 diabetes.

What has been the most challenging part of having diabetes?
The most challenging part of diabetes has been health care providers (though they have good intentions) telling me to constantly watch my weight. Even though I was never overweight, it was drilled into my head that insulin works better when people are not as heavy and to be aware of portion size. I was tired of hearing that I was in a higher percentile for weight than height (even though there was no problem with my weight), so I didn’t always eat when I was hungry. This led to problematic eating behaviors for me.

Have you been hospitalized related to diabetes since diagnosis?
I have not ever been hospitalized for diabetes.

What resources do you have that help you manage type 1 diabetes?
I am seen quarterly for diabetes. At each visit, I see a nurse and an endocrinologist, who make changes in my treatment based on what my A1c and blood sugar readings have been. I control my diabetes with an insulin pump and a glucose meter.

How could others help out or make diabetes easier for you?
I hope that if people have questions about my pump or diabetes that they ask. Everyone who brings it up seems to feel embarrassed, but I would much rather them learn about diabetes than not know!

Do you have any word of wisdom about living with diabetes?
Don’t limit your activities, or if your child has diabetes let him or her do everything friends would. It takes some education of the people around you to help your child in case anything goes wrong, but someone with diabetes can do anything that others can.

Tuesday, November 30, 2010

Blood draw challenges - part 2

If you didn’t already read here about several of my son C’s difficult experiences with TEDDY blood draws, I can tell you that so far in TEDDY, the majority of his blood draws have been somewhat traumatic for him. Rather than drop out of the study, which I definitely considered, I felt that it was important for him and me to work past the difficulties and do whatever we could to turn TEDDY into a positive experience for him. As we approached the 21 month visit, C’s stranger anxiety was still pretty high, but after a while he usually warmed up to new people when he saw that I was friendly with them. The 18 month visit started badly because the first thing that happened was a strange person came up to him and touched him, to put the EMLA cream on his arms. I decided to take this factor out of the equation by putting the EMLA cream on at home. I’m no expert at putting it on though, so he still got mad at me, but that kind of thing happens every day anyway when I put sunscreen on him.

I was also a lot more used to dealing with his fears of new situations, so I did the same thing I do before any unfamiliar experience—I prep him in advance. The morning of our 21 month visit I told him, “Today we are going to go to TEDDY! We are going to a big building and there will be a few people that you don’t know who will want to talk to you and touch you, but it will be okay and I will be right there with you the whole time.” I told him this several times that morning, and each time I emphasized that I would be there with him and that fun things would also happen like he would get to watch bubbles and pick out his own toy to take home. I think he was actually excited to get there! He got a little nervous when we walked into the building, but he calmed down pretty quickly when I again told him how fun it would be and that I would stay there with him.

TEDDY staff member B was really great about putting him at ease in the visit. He started off with his head buried in my chest again, but after awhile he warmed up and was playing peek-a-boo with B. He was also very happy to show off what a big boy he was by stepping onto the scale by himself. By the time it was time for the blood draw, he was comfortable, having fun, laughing, popping bubbles, and giving high fives to the blood draw helpers. We were so busy popping bubbles that neither he nor I noticed when the needle went into his arm. After a minute he looked over at the needle and whined for a second, but he was quickly distracted again by the bubbles. I was so unbelievably happy at how well the visit had gone! I’m sure that putting the EMLA on at home and really preparing him for what was going to happen made a huge difference. I’m feeling happy and relieved that we can stay in TEDDY without it being a hugely negative experience, and I’m even more relieved to have just learned he is still negative for the diabetes antibodies.

Thursday, November 11, 2010

The challenges of getting blood - part 1

I have witnessed and helped out with hundreds of blood draws of children, but it’s a little bit different when you’re sitting in the chair, holding your own 3-month-old baby on your lap. I knew that the EMLA cream truly worked, so I didn’t feel too nervous, but that changed when TEDDY staff member B told me, “Wow, little C has really tiny veins and they are so hard to find!” Yeah, that just increased my heart rate about 50 beats per minute! C must have sensed my anxiety, or maybe he was just tired of the tight tourniquet tied around his arm, because he started to fuss and cry a little. Fortunately they don’t need much blood at the 3 month visit, so it was over fast and I was able to calm him back down. I was confident the next time would be easier.

Well, his 6 month visit came around and by this time my little baby had tons of cute chub covering his body. Of course, this didn’t make it any easier to find his impossible veins under all that fat! Two different staff members had to try to get blood from his arm but my little boy was so brave and just watched as the helpers blew bubbles to distract him. I was feeling a lot better about this whole blood draw thing. The 9 month visit also went really well, although his veins were still hard to find.

At C’s 12 month visit things were quite a bit different. He was developing so quickly and he was experimenting with independence. He hated anyone trying to hold him still, as I knew well from difficult diaper changes at home. When we got to the part of the TEDDY visit where he had to take off his clothes to get weighed, he was pretty upset and things kind of went downhill from there. If he had nice big, straight veins, we might have survived, but because it was so hard to find a vein, he just got more and more upset with having his arm held out and the visit ended with him melting down, without getting any blood. I tried everything I could to calm him during the process but nothing was working. I left the visit upset and confused. It was so important to me and my husband to have C in the study and monitored for the pre-diabetes antibodies, but at what cost? I didn’t think it was fair to C to put him through such a horrible experience. I talked to a few different TEDDY staff members about our experience and decided that his 15 month visit would be a no-ouch visit. That would give C a chance to come to the TEDDY clinic and see that it didn’t have to be a painful experience.

The 15 month no-ouch visit turned out to be a really great decision. C was happy to just get to play during the visit without anyone having to hold him still or poke around. He even did the nasal swab since things were going so well. I was feeling good about TEDDY visits again.

Unfortunately, I think I was a bit overconfident about the 18 month visit. The 15 month was so great that I thought C would be the same way at 18 months. But C was now at the age where he was very wary of all adults other than Mom and Dad, including his regular babysitter. So it didn’t go over very well when we came into the TEDDY clinic and the first thing that happened was some strange woman comes over to him and starts putting cold lotion on the inside of his elbows. He spent the entire visit with his head buried in my chest, getting increasingly upset when anyone tried to look at him. K, the TEDDY staff member, was trying so hard to make him comfortable enough to smile or laugh but nothing was working. It was also getting close to lunchtime, a double whammy for him. But it had been 9 months since he had his blood tested so I thought it was important to at least try the blood draw. I felt sure that the Cars video would be a good distraction for him, and K had also noticed that his veins seemed much easier to find. Sadly, it did not go well. K was able to get blood, and I was able to distract him with his favorite game on my phone, but having all those people around him trying to hold him still was just too much for him and he was crying and screaming. As soon as everyone left the room he was fine, so I knew he wasn’t hurt, but I had some serious thinking to do. I wanted him to be in TEDDY because I liked getting the antibody test results, and I feel it’s important to participate in research, but I had to consider the impact on my son. I know it’s good for him to sometimes have to do things he doesn’t necessarily want to do like going to the doctor’s office to get shots, or brushing his teeth, but at least with those experiences it’s over in a few seconds and he calms down quickly. The 18 month visit seemed like it was a bad experience for close to an hour. Was I really going to keep doing that to him every 3 months?

To be continued in part 2….

Wednesday, October 27, 2010

Welcome to the TEDDY mom blog!

Why did I start a blog? I’m not a blogger, I’ve never done this before and I’ll admit I’m a little scared. I’m a bit of a perfectionist, I can’t live without spell check and now people will be reading what I write and finding my mistakes. Even though I have all these feelings about writing a blog I’m also excited. If you’ve read the About Me section you know I like the TEDDY Study. I love my job working for TEDDY and while I wish my son had the low risk genes that wasn’t in the cards for us so I’m happy we are able to monitor him for type 1 diabetes and help out the study in the process. I want the best for TEDDY and I feel a great thing I could do would be to share my experiences and encourage others to share theirs too.

I have another advantage many TEDDY parents don’t have besides working for the study. I have a friend with a son the same age as mine who is also participating in TEDDY. She is even agreed to post a few of her TEDDY experiences, look for posts by C’sTEDDYMommy. She and I are able to discuss our sons’ very different experiences with blood draws, those diet records, poop of course and our fears. Being surrounded by type 1 diabetes in my work life it’s difficult not to think “what if that was my son” even though he only has a 3 in 100 risk, a 97% chance he’ll never develop diabetes.

My husband and I don’t have a single relative with type 1 diabetes (lots of type 2 in the family). The fact that my son has the higher risk genes is still surprising to us. Before I started working for diabetes research studies I honestly didn’t know much about type 1 other than a childhood friend had gotten really sick and been diagnosed with the disease after she moved out of state. Now I’ve explained to family members with type 2 diabetes how it differs from type 1 and how each disease affects the body.

I have a lot fun and interesting posts coming up for this blog including easy and difficult blood draws, an interview with an adult with type 1 and a short interview with another adult that has celiac disease. I plan on uploading new posts every 2 to 3 weeks so check back often!

Monday, October 11, 2010

I'm Ready for TEDDY

TEDDY came by to do a screen
They called to say I have the gene
Enrolled to help find the cause
Antibodies and blood draws

Mom likes to collect my poop
Got too aggressive with the scoop
Oops it flew on the floor
Oh gross! She still needs more!

Can’t remember when I’m ill
Thanks mom, I know you will
Write my meals in the log
You don’t know, I fed the dog

Thanks for the numbing cream
So I won't have to scream
Bubbles, bubbles everywhere
Popping in my mommy’s hair

The butterfly took my blood
I didn’t cry, I’m such a stud
Prizes, stickers when I’m done
TEDDY visits are such fun!