Slippage

Posted on October 6, 2011
Filed Under Exasperation, Numbers, Us Being Us | 3 Comments

The kids A1c’s a week ago still have me kind of reeling. I know it’s just a number and I know that we aren’t slack at all when it comes to management. I also know there are “sneaks” and “forgets”, but I still didn’t think that would all add up to A1c’s being over 9.

Kelsey I have backed off from, but she still checks in with me. Marty we discuss every shot and make adjustments to dosages based on his day (activity level) or if anything weird is going on…you know, like the flu. I have been working a lot of hours, so I unfortunately I am not home in the mornings before the kids go to school. I am also not usually home until after 6. So, maybe he is not paying that close attention to his morning measurements. Maybe he is eating more at afternoon snack than he says he is…I don’t know. What I do know is that my absence is probably what is allowing the slips. Crap, it’s me. Well, it’s not all me….but it feels like it’s me. Dammit.

We’ve all had a sit down and are trying to re-group. We discussed paying very close attention to measurements, we’ve discussed being more diligent and honest (so if you eat a dang lolly after school, just tell me so we can add it into afternoon snack…OR if you come home after school and eat two meat pies you HAVE TO REMEMBER TO TAKE A SHOT!) No more “oopsy I forgot!”. We’ve also discussed that after the first of the year, we are moving closer in to the city so I can be home in the morning and get them off to a great start. (Yeah…so been here three years, going on our 3rd move….Yippie!)

I know my kids are strong and they do pay attention. They aren’t the type to blow off management, however I guess we have all slipped in our respective areas of responsibilities. I am pretty sure I am taking that number closer to heart than the kids are…but I’ll be damned if we are going to have another one of those appointments. You know, the one where you don’t hear a damn thing because your mind is constantly saying “What the Hell?”

As I said last week, onward and upward…or I guess downward should be the right word. Onward and Downward.

Ask the Diabetic Duo- Responsibility

Posted on October 3, 2011
Filed Under Ask Us | Leave a Comment

Sarah Asks: My daughter is 9 and wants to do so much on her own. I want to encourage her independence but I really don’t know how much to let go. What do you think?

Renata: That’s a hard one because I don’t know if it depends so much on age as it does how much your daughter is capable of managing. At 9 obviously she can’t do it all, but I think there is a lot she can do. You don’t say if she is on the pump or injections, so I am just going to go with what I know. First, I think the biggest thing she can start doing is counting/weighing/measuring food. She can write it out so you can double check it, but at least she feels in control of a huge portion of her routine. With regards to the actual dosage and injections…that depends on your comfort level. Marty was diagnosed at 9 and because he had been around his sister he just thought he could do it all. We let him do his doses right away, but I always double checked the pen before he injected. I think she could definitely do her own injections at this point, but maybe you dial them up or draw them for her. Maybe you could also let her be responsible for keeping the supplies tidy and keeping track of what is getting low. (Man, I should do that…that would be a HUGE help. ) I feel kind of bad giving advice on this one because while my kids are hugely independent, I think I might have made the mistake of backing off too much or relaxing a bit too much. It was definitely reflected in their A1c’s. We have had to have a heart to heart on accepting responsibility and reminding them that we need to work together as a team. And I think that’s the best way to approach things. Teamwork. Just remember that when you allow your daughter the ability to be responsible for managing her diabetes, you allow her to feel strong and confident. (that’s assuming you are realistic in what she can handle) If she starts doing small things now and she is asking to be responsible, you are fortunate and so far ahead of a lot of families.

Good Luck!

Martin: I think that one of the ways that your daughter can be independent is maybe if she wants to go to a friends house, she could have a cell phone so she could txt you with her blood sugars and the amount of carbohydrates she is eating. I would also recommend that for school, she could pack her own lunches. She could count all the carbs up and write them down on a sheet of paper and then include the shot she would need to take. You could help her make sure it’s correct, but that’s a whole meal she would be responsible for.

Kelsey: Maybe you could let her go out and do things with her friends and she could text you every hour and a half. Maybe she doesn’t need to test that often, but just to check in so you feel ok. Or if she wants to do things with friends you could chaperon. I bet she could manage keeping a log of her blood sugars and what she has eaten. I think it’s a really good sign she wants to be independent because it shows that she has confidence in her ability to manage her diabetes.

If you would like to ask us a question, send it to renata@thediabeticduo.com

Crappy A1c’s

Posted on September 30, 2011
Filed Under Us Being Us | 1 Comment

We went to the Endo yesterday. All I have to say is the kids A1c’s are getting worse and worse. Don’t remember which is which but one is 9.1 and one was 9.3. COMPLETE SHIT!

Ok, regroup…start again.

You Are Not Alone-Meet Clare!

Posted on September 29, 2011
Filed Under Advocate, Educate, You Are Not Alone | 2 Comments

Meet Clare, Momma Pancreas to Paige. They live on the South Island of New Zealand.

Tell us about your child.
Paige is 9yrs old and a cheeky mischeivious young lady who has a very definite mind of her own and will let you know!! Creative in the kitchen ( at least we have progressed from the raw creations which used to surprise me in the fridge) really does love her big sister and I am sure she has a future on stage!

When was he/she diagnosed, at what age?
At 2 yrs old, as she was in the throws of toilet training I noticed she was going a lot and thought it may have been a bladder infection so took her to Dr  as just before school holidays and we were heading to Blenheim, needless to say we did not get on our holiday, and spent 8 days in Southland hospital.

How do you manage diabetes?
Sometime by the seat of our pants!  Paige has never been a big eater and still isn’t, I would worry a lot about the food thing, I found it difficult  to estimate effect of food and exercise  or activity on BGL as seemed to vary from event  to event and you learn bits like how adrenalin and excitement may raise BGL.  Still a bit hit and miss and will do extra testing  if  things are not adding up.  Paige uses syringes and draws up own insulin under supervision , It amazes me how she  understands the meaning of what her readings are and what insulin needs to be administered and food to be eaten, a 9yr old should not have to think about complex stuff like this so much every day! Her big sister Brodie  (13yrs) is a great help and has a good understanding of situation.

What do you know now that you wish you knew at diagnosis? 
DON’T SWEAT THE SMALL STUFF!  I would beat myself up daily when meals not at regular time and she didn’t eat what I expected and thinking she was going to go too low. I now realise I do the best I can,  She is growing and doing all the things kids do, you find your own way and gradually have less bad days and just ride the bumps!

What has been the biggest challenge?
The nocturnal hypo’s  We have had 3 over the last 7 years and needed to use  the Glucagon.  Very scary as a single parent when your child is having a seizure in middle of night, tough emotionally and you get pushed outside your comfort zone  with needing to make decision to stick another needle into your child.  I have seen how she bounces back but makes me very nervous when she stays  away from home at a friends.  There was no rhyme or reason to these hypos, so that annoyed me as had no way of seeing it coming or doing things differently whereas first thought I should have stopped this from happening and did not  look after her properly, but now realise that is not the case.

Sometimes diabetes can put a strain on relationships, how do you and your partner maintain your relationship?
Unfortunately I am no longer with my husband, we separated  about 18 months after diagnosis, it was not
the cause of our parting as things were going downhill long before that, but it was an added stress which was thrown in the mix.  Priority through separation was to do whatever was best for the kids and put our own issues aside, we now have a shared custody arrangement where we have kids week about, this shares the daily responsibility and I hate to admit it but I get a break for 7 days from organising meals and following routine while working full time.  I have full confidence that her father and stepmother manage her diabetes very well although am aware it is a different routine within their family and this is reflected  in BGL levels recorded each week.

What have been your challenges sending your child to school? Triumphs?
We have a very supportive school and I was impressed how the whole teaching and admin staff took part in information/education session  which was done by our Nurse educator, since starting school  we have had no issues
and they understand and fully engage in extra testing and treatment of lows/highs when other activities  occur,
ie cross country, athletics, walks to public library for field trips. We encourage them to phone myself or her father any time if need, we all work together to encourage Paige to manage condition and gradually take on more responsibility. She has always done her testing in class room  and only recently will go to back of room if needing to have insulin during day as conscious of using syringe, ( I don’t feel it would be an issue if when she goes onto a pen).  A number of the kids in her year have been with her since diagnosis so she does not feel ‘different’ as they take no notice of her doing her tests.

What is your child’s favorite free or 15g snack?
Nuts/cheese are a favourite, apple is always popular.

What sports/activities does your child do and how does it work with diabetes?
Hockey in winter, outside in all weather usually, so just have to watch if particularly cold as has been difficult to bring levels up sometimes and depending on position she plays will not be moving all the time.  Swimming always  an option and iceskating at local rink has been a recent choice.

What vacations have you taken and how do you deal with diabetes while on them?
I have done road trips to top of South Island and no problem, she recently went to Gold coast with her
father and family and seemed to go well with no drama’s. Biggest problem is remembering to have all her supplies and kit with us when we leave!! We did leave her kit at a café in Canterbury once and didn’t even realise till one of the staff phoned me from the contact details inside! We were about 40 mins away as had stopped to visit friends and they bought it to me as had finished work for the day, they got a couple of bottles of wine for that as they saved me a lot of stress later that day as would have been in quite a remote area when stopped for the night and about 300
km away!

Do you have a babysitter? If so, how do you manage it?
I have great neighbours and have used other baby sitters, during day and make sure they have my contact details
and I will phone regularly to make sure all ok. My eldest daughter is great  here as will remember testing to be done as Paige is usually too busy  having a fun time to remember tests or  to eat! I try not to be going anywhere if possible during the week the kids are with me and if need to and away overnight would most likely arrange for them to go to their fathers house.

Has diabetes affected your other children?
Had a scare with eldest daughter 10 months ago where she was very thirsty for several days and BGL testing showed high level over course of day, was admitted to hospital for monitoring as medical team thought could have been very early  indicator of developing  Diabetes, levels settled down and although occasionally  rise unexpectedly, not consistently so we just periodically test and monitor her.

How do you find time for yourself? 
This usually occurs during the weekends that kids are at their dads,  a bit difficult during the week as work commitments mean long days more often than not.

What have you done to help your child become independent in their own care?
Got her doing her own tests early on and recently have her drawing up own insulin and she writes up her record book, involved her in food choices so  it did not seem like she was missing out as rest of family would have similar, she has grasped the concept of what items have more carbs than others quite well.  Independence has continued to be encouraged at school by her teachers also.

How do you deal with tough diabetes related questions from your child?
These always break my heart a bit and is some of the toughest times, respond with letting her know she is special because she is Paige. Most commonly get “why did I have to get diabetes” usually when tired and grumpy and
things not gone well for her that day, always short lived and she moves on quickly, I think that is the advantage
of having been diagnosed so young, it is all she knows and is receptive to learning how to manage her diabetes so it fits in with her.

How do you deal with tough diabetes related questions from others?  Or how do you deal with the Diabetes Police (those who think they know all about Type 1 Diabetes).
Everyone seemed to be an expert and knew someone who had diabetes ( I soon discovered this was usually type2).
It is usually the ones who don’t say much that actually understand a lot about condition.  I chose to join my
local youth support group and being part of DYNZ helps to learn from those who have been there already so I have the facts to put the Diabetes Police right!

Share with us a funny diabetes related story.
When Paige was diagnosed with Diabetes it was an awful worry for her Nana, one time when she was younger (6 or 7) and getting looked after by her Nana she needed to do a test before lunch, because she has Nana wrapped around her little finger, she would just hold out her hand and continue watching her TV programme, while bringing the test strip up to the blood sample Nana would be quite shaky, Paige was watching this and looked at Nana and said “ I think I’d better do it Nana”!