Tuesday, July 3, 2012

What is it like ...

 Our next mother that we are featuring here on the blog is Lydia. She is the mother of an adult T1 diabetic and hits on how hard it is to not have all the control in the diabetes management.

I know there are plenty of moms out there that have gone through this transition and can probably understand where Lydia is coming from.

Q: Your First Name
A: Lydia

Q: How long has your child been a Type 1 Diabetic and how old are they?
A: My son ,Alexander was diagnosed in 2003, he was 9 years old, he is now 18 years old. In August he will have had diabetes for 9 years, half his lifetime.

Q: For the management of your child’s Type 1 Diabetes are they on an insulin pump (If on pump which one) or multiple daily injections and what made you choose this method?
A: Alex started out on MDI- Novolog and Lantus shots. He moved on to a pump about 19 months after diagnosed. I wanted him on a pump after he was diagnosed. I had researched and it looked like the pump was the best therapy on the market. He did not want a pump but after he went to Diabetes camp and saw other kids with it he wanted a pump. I had to fight with the children’s hospital to get him on a pump. They are not big on pumps but they finally agreed. He is still on a pump and is currently on the Animas Ping.

Q: How confident are you with managing your child’s diabetes?
A: Alex started doing his own shots about a month after diagnosis. He is a very independent kid. I helped him with management until he hit teens. He now is getting ready to leave for college. I make the doctor appointments, order supplies and insulin but he takes care of the rest. I am not comfortable with this as he forgets thing like testing, bolusing, filling insulin cartridges. I have had to run a cartridge to him at work because he ran out of insulin.

Q: What does a typical day look like in your household in regards to diabetes management?
A: I would love to be able to control his diet, make him test more and control his bolusing but the truth is he is an adult now (although, he will always be my "baby") So I try to gently remind him to do all those things.He usually tests in the morning when he gets up, he is not a morning person and doesn't want to eat when he wakes up, unless he is low. He is working so often and he will call me to bring him lunch or dinner to work or he will come home famished at 9 pm. I remind him to test before he goes to bed. I usually get up in the middle of the night with him if he is low; I tend to sleep with one eye open. I will make him something to eat if he goes low in the middle of the night- scrambled eggs or grill cheese are favorites. I always check on him if I get up before he does, so does his dad.

Q: What does a typical day’s diet look like?
A: Wow, he is teenager/adult- It really varies but he eats pretty healthy.

Q: Besides a cure what 1 thing would you like to see researchers working towards and why?
A: Although the idea of the artificial pancreas sounds great, it is just better technology so I know the one thing Alex would really love would be a pump that was controlled by his Iphone. I would like to see much better cgms.

Q: What tips or advice would you give to other parents of newly diagnosed Type 1 Diabetic children/teens?
A: Get a great team of dr/cde you trust and are comfortable with and you can really talk with. Get Great health insurance. Talk with other t1 parents but understand your child is different,. NUMBERS ARE GUIDELINES- your ability to parent is not tied to your child’s A1C! High and lows are just that not BAD and GOODS. Know that you are doing the best job you can, ask for help, trust your gut. It is ok to have a pity party! It is a hard job to be a parent; it is a really hard job to be a t1 parent. Give your child permission to be angry about having this sucky disease. Don't be a "helicopter" you don't need to hover all the time. Give your child some responsibility but not all the control. Get involved with JDRF or ADA or DRI, petition your lawmakers to do right for your child.

Q: What would you like to see more of out of the Diabetes Online Community?
A: I would like to see people be less judgmental of each other on DOC.

Q: What is your favorite thing about the Diabetes Online Community and why?
A: I like knowing I am not the only one having the feeling, fears, hope, etc. about t1. Most of the moms are pretty darn funny. We share a common bond.

Q: What is your least favorite thing about the Diabetes Online Community and why?
A: I don't need to know your child’s numbers every hour of the day. I am not sure why some people post their child’s numbers all the time. I understand if they need help but some just post to post.

Keep checking back to follow this segment :)

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