Aug 7, 2016
Jun 21, 2016
Pregabetes and The ENDIA Research Project
I have recently signed myself and my not yet born baby up for a research project which is very interesting and thought it would be good to let people know more about it. Whilst I have diabetes and am a diabetes educator and a nurse I still did not know very much about this even though I obviously have a very valid interest in the subject matter. I have even seen things popping up on my Facebook page about it and I have obviously liked the page, but I honestly had not taken much time to understand what the project was about because all of the pics were always of young kids I thought I was not a valid participant. How wrong I was!
The ENDIA, or Environmental detriments of Islet autoimmunity study is a research project which is researching the causes of Type 1 Diabetes so that they can work out ways to prevent it. This is Australia’s largest study into the causes of Type 1 Diabetes. The aim of ENDIA is to follow 1400 children across Australia from pregnancy to early childhood to determine how various environmental factors affect the development of type 1 diabetes.
ENDIA are calling on all families who are expecting a baby, or that have a baby less than 6 months old, that also have an immediate family member with type 1 diabetes to participate. An immediate family member includes the mum, dad or a sibling of the participating baby. As a type 1 mum to be I am an ideal candidate and I am so excited to be a part of this research.
This research is very involved and requires a lot of extra tasks throughout pregnancy and after baby is born but I take sanctuary in the fact that if we need to, we can pull out at any point without repercussion. Obviously this is not my aim in signing up for the research project but with so many changes about to take place in our lives it is good to know that if shit is hitting the fan and we cannot handle the pressure, we can pull out and just focus on keeping the baby alive, as I hear this is the main goal when returning home with a new baby.
A pregnant women can enter the study at any time. Like me, I only found out about the study in my second trimester and I sent an email inquiry saying that I was interested. I was warmly welcomed in and set an information and starter pack. They are also newly looking for Regional participants, of which I am one, so, any person with type 1 diabetes or with type 1 diabetes in their immediate family, anywhere in Australia can sign up and be a part of this huge research project aimed at finally determining what it is that causes type 1 diabetes and how we might be able to prevent its prevalence. What an important opportunity.
So, doesn’t sound too involved at this stage you say. Let’s discuss it a bit further. So throughout pregnancy, depending when you enter the study ENDIA requires samples of blood, urine and stools to measure Vitamin D levels, omega 3 fatty acid levels, markers of inflammation, products of your metabolism and markers of infections. These are required at 3 months, 6 months and before birth. They also require saliva samples from myself and my husband in order to measure our genes and swabs collected from my elbow, nose and mouth to look at infections and healthy bacteria that are normally present in my body. Similarly, they will be recording weight gain during pregnancy and whether the participant encounters any complications through accessing private or public records which are held at the hospital I am attending. They will be recording my Hba1c throughout pregnancy and I will need to complete lifestyle questionnaires at 3 months, 6 months and before birth and at subsequent time points with the child following birth. There will be a diet questionnaire in my last trimester and again at 3-6 months following our child’s birth. After our new baby has come into the
world, during his first week of life, they will require a sample of breast milk within the first few days; these may also be collected every 6 months for the duration that I breastfeed.
So, that’s all just by the by and besides the point really if you have diabetes. I don’t really care about doing extra blood tests and I am a nurse as well, so I am not really fussed with doing the extra tests either. They have sent out a large pack with a secure medical freezer device that I will send back to them via Toll when I have completed all the samples. The one tricky thing is that the samples generally all have to be collected in the same day and sent back to the facility on the same day so it certainly does take some planning and preparation. Especially since Toll need to be contact 24 hours prior to when you want to have things picked up. I can definitely make it happen though!
On the other hand, there is what is required of your new born child. Which is pretty much the only reason why enrolling into this research project was a little bit difficult because it becomes hard when you don’t even know this person at all, this little thing that my husband and I have created, yet, we are going to submit him to numerous extra tests early in his life and throughout his childhood.
A blood sample will be required from baby’s cord blood (placental blood vessels) in order to measure his risk of type 1 diabetes. This will also be used to measure antibodies to the insulin producing cells. In the first few days following birth, on top of working out how to catch all of midget’s urine and stool samples within the confined location of the nappy, I will have to collect a urine and stool sample for testing, as well as an elbow swab. This will have to be done regularly at 6, 12, 18, 24, 30 and 36 months of age, a total of 6 times in three years, that can’t be so bad. I will need to collect a swab from his mouth as well, in order to measure other genes that increase or decrease his risk of type 1 diabetes. At these time points his growth will also be measured using his length or height and weight. On top of all this, a blood collection will also be required 6 monthly, only a small amount of blood is required, measuring less than 3 teaspoons.
These blood samples will be used to determine whether our boy has developed antibodies against the insulin producing cells in the pancreas. Other factors including antibodies that are markers of Coeliac disease, vitamin D levels, omega 3 fatty acid levels, markers of inflammation and infection, and products of our child’s metabolism will also be measured.
In combination with this our child’s food intake will be measured and other lifestyle factors during his first three years of life. This will be taken from a home record by me originally and then through questionnaires once he is eating food on a regular basis. On this home record I am required to note how many breastfeeds he is having a day, when he stops breastfeeding and when he commences on solid foods and as he gets older, what foods he is eating. Following our baby’s first birthday we will no longer need to keep a food diary but will be asked to do a 24 hour food recall on three occasions from 12 to 24 months. After his second birthday a food survey will be completed at 24, 30 and 36 months of age.
There will be no real benefit to myself, the baby or our family by participating in this research. However, if, during the research he develops antibodies to the insulin producing cells, which increases his risk of type 1 diabetes, we will be invited to consider any intervention trials that are being conducted in Australia at the time. With blood sample collection we will also be informed if he has antibodies that develop in coeliac disease, diabetes associated antibodies and vitamin D levels.
At first, I was unsure if I wanted the exposure to all of this information, I didn’t know if I wanted to know things like if my baby is low in vitamin D or if he has the slightest chance of developing type 1 diabetes or coeliac disease because he has the antibodies that put him at risk.
Did I want to know this?
Would this change anything about the way we raised our baby boy? Of course there was always the option that I could tell ENDIA I did not want to know the test results unless they definitely needed to be acted upon but, if my kid is getting all of these tests I am going to be curious to know the result if it is in any way detrimental.
So, whilst I don’t want to know, I also do want to know. The human mind is clearly a complex place! My husband has been supportive from the start and has been quite interested in participating in the study as well which is always helpful. So off we go down this road. I think if it can help a future generation to understand more about diabetes and where it comes from we will be very happy participants. And hopefully through all of this prodding and poking we manage to raise a child who doesn’t mind the odd test here and there. Wishful thinking maybe but you have to look for the positives in situations to get the best out of them!
Isabel
The ENDIA, or Environmental detriments of Islet autoimmunity study is a research project which is researching the causes of Type 1 Diabetes so that they can work out ways to prevent it. This is Australia’s largest study into the causes of Type 1 Diabetes. The aim of ENDIA is to follow 1400 children across Australia from pregnancy to early childhood to determine how various environmental factors affect the development of type 1 diabetes.
ENDIA are calling on all families who are expecting a baby, or that have a baby less than 6 months old, that also have an immediate family member with type 1 diabetes to participate. An immediate family member includes the mum, dad or a sibling of the participating baby. As a type 1 mum to be I am an ideal candidate and I am so excited to be a part of this research.
This research is very involved and requires a lot of extra tasks throughout pregnancy and after baby is born but I take sanctuary in the fact that if we need to, we can pull out at any point without repercussion. Obviously this is not my aim in signing up for the research project but with so many changes about to take place in our lives it is good to know that if shit is hitting the fan and we cannot handle the pressure, we can pull out and just focus on keeping the baby alive, as I hear this is the main goal when returning home with a new baby.
A pregnant women can enter the study at any time. Like me, I only found out about the study in my second trimester and I sent an email inquiry saying that I was interested. I was warmly welcomed in and set an information and starter pack. They are also newly looking for Regional participants, of which I am one, so, any person with type 1 diabetes or with type 1 diabetes in their immediate family, anywhere in Australia can sign up and be a part of this huge research project aimed at finally determining what it is that causes type 1 diabetes and how we might be able to prevent its prevalence. What an important opportunity.
So, doesn’t sound too involved at this stage you say. Let’s discuss it a bit further. So throughout pregnancy, depending when you enter the study ENDIA requires samples of blood, urine and stools to measure Vitamin D levels, omega 3 fatty acid levels, markers of inflammation, products of your metabolism and markers of infections. These are required at 3 months, 6 months and before birth. They also require saliva samples from myself and my husband in order to measure our genes and swabs collected from my elbow, nose and mouth to look at infections and healthy bacteria that are normally present in my body. Similarly, they will be recording weight gain during pregnancy and whether the participant encounters any complications through accessing private or public records which are held at the hospital I am attending. They will be recording my Hba1c throughout pregnancy and I will need to complete lifestyle questionnaires at 3 months, 6 months and before birth and at subsequent time points with the child following birth. There will be a diet questionnaire in my last trimester and again at 3-6 months following our child’s birth. After our new baby has come into the
world, during his first week of life, they will require a sample of breast milk within the first few days; these may also be collected every 6 months for the duration that I breastfeed.
So, that’s all just by the by and besides the point really if you have diabetes. I don’t really care about doing extra blood tests and I am a nurse as well, so I am not really fussed with doing the extra tests either. They have sent out a large pack with a secure medical freezer device that I will send back to them via Toll when I have completed all the samples. The one tricky thing is that the samples generally all have to be collected in the same day and sent back to the facility on the same day so it certainly does take some planning and preparation. Especially since Toll need to be contact 24 hours prior to when you want to have things picked up. I can definitely make it happen though!
On the other hand, there is what is required of your new born child. Which is pretty much the only reason why enrolling into this research project was a little bit difficult because it becomes hard when you don’t even know this person at all, this little thing that my husband and I have created, yet, we are going to submit him to numerous extra tests early in his life and throughout his childhood.
A blood sample will be required from baby’s cord blood (placental blood vessels) in order to measure his risk of type 1 diabetes. This will also be used to measure antibodies to the insulin producing cells. In the first few days following birth, on top of working out how to catch all of midget’s urine and stool samples within the confined location of the nappy, I will have to collect a urine and stool sample for testing, as well as an elbow swab. This will have to be done regularly at 6, 12, 18, 24, 30 and 36 months of age, a total of 6 times in three years, that can’t be so bad. I will need to collect a swab from his mouth as well, in order to measure other genes that increase or decrease his risk of type 1 diabetes. At these time points his growth will also be measured using his length or height and weight. On top of all this, a blood collection will also be required 6 monthly, only a small amount of blood is required, measuring less than 3 teaspoons.
These blood samples will be used to determine whether our boy has developed antibodies against the insulin producing cells in the pancreas. Other factors including antibodies that are markers of Coeliac disease, vitamin D levels, omega 3 fatty acid levels, markers of inflammation and infection, and products of our child’s metabolism will also be measured.
In combination with this our child’s food intake will be measured and other lifestyle factors during his first three years of life. This will be taken from a home record by me originally and then through questionnaires once he is eating food on a regular basis. On this home record I am required to note how many breastfeeds he is having a day, when he stops breastfeeding and when he commences on solid foods and as he gets older, what foods he is eating. Following our baby’s first birthday we will no longer need to keep a food diary but will be asked to do a 24 hour food recall on three occasions from 12 to 24 months. After his second birthday a food survey will be completed at 24, 30 and 36 months of age.
There will be no real benefit to myself, the baby or our family by participating in this research. However, if, during the research he develops antibodies to the insulin producing cells, which increases his risk of type 1 diabetes, we will be invited to consider any intervention trials that are being conducted in Australia at the time. With blood sample collection we will also be informed if he has antibodies that develop in coeliac disease, diabetes associated antibodies and vitamin D levels.
At first, I was unsure if I wanted the exposure to all of this information, I didn’t know if I wanted to know things like if my baby is low in vitamin D or if he has the slightest chance of developing type 1 diabetes or coeliac disease because he has the antibodies that put him at risk.
Did I want to know this?
Would this change anything about the way we raised our baby boy? Of course there was always the option that I could tell ENDIA I did not want to know the test results unless they definitely needed to be acted upon but, if my kid is getting all of these tests I am going to be curious to know the result if it is in any way detrimental.
So, whilst I don’t want to know, I also do want to know. The human mind is clearly a complex place! My husband has been supportive from the start and has been quite interested in participating in the study as well which is always helpful. So off we go down this road. I think if it can help a future generation to understand more about diabetes and where it comes from we will be very happy participants. And hopefully through all of this prodding and poking we manage to raise a child who doesn’t mind the odd test here and there. Wishful thinking maybe but you have to look for the positives in situations to get the best out of them!
Isabel
Jun 2, 2016
From Elly
I've been living with the cold from hell these last few days, so naturally my BGLs have been all over the place... And there isn't much motivation to stay on top of my diabetes when I'm plagued with headaches, burning eyes, and painful coughing. It's weeks like these I honestly feel like I deserve a medal!
If you're suffering from a head cold in this weather, try to stick to sugar-free cough syrups and throat lozenges! It's also good to keep in touch with your GP, as I know (at least personally) that glucose levels tend to be a little higher when fighting an infection or cold.
Stay warm, everyone!
- Elly
- Elly
May 30, 2016
Talking Carbs - by Renza S
We love Renza's blog as it's filled with information and how she personally copes with T1. She's funny, sometimes angry, and always informative. Here we share her blog post 'Talking Carbs':
‘Do you eat a lot of carbs?’
This was the question that had me stopping and thinking about my diet and how it has changed in recent times.
It is also a little bit of a taboo topic and I feel a little odd writing about it here. I really don’t care about being judged by others when it comes to my diabetes decisions, however for some reason, food attracts so much attention and judgement, I am somewhat reticent to write this post.
Firstly, and most importantly, please do not take this as medical advice. Or nutritional advice. In fact, there is no advice here at all– just some thoughts about what I do that seems to work for me. I am not a healthcare professional of any sort whatsoever. Please keep that in mind while reading.
I should also say that I had no intention to change my diet. It was just one of those things that happened slowly over time.
May 17, 2016
Pregabetes Part 2 – Embracing Insulin Resistance
Here's part 2 of Isabel's pregnancy blog.
And here's a pic of the gorgeous Isabel!
Diabetes life before pregnancy was more stable and required less changes but I am embracing this life and enjoying it a lot. A lot of that comes from the knowledge and confidence that I can make changes to my basal insulin requirements, carb ratio’s, insulin sensitivity factors on my own. Anyone can do this. You are dealing with your diabetes 100% of the time, you are the professional when it comes to your specific brand of diabetes and you know what works and what doesn’t. You know if your blood glucose levels are always going high at a certain time of day and you know if they are always going low. Make some changes but only by minimal amounts at a time and you will notice a difference slowly. You can make these changes every few days until you are getting the pattern that you want to see. Even in someone without pregnancy, basal rates, insulin sensitivity and carb ratio’s change at some different points during your life. Diabetes is not a static creature. It can be influenced by any number of things that happen in a normal day or week. To have consistently good blood glucose numbers you have to be open to change and willing to manage your diabetes on a daily basis. If you are concerned about anything or overwhelmed of course, speak with your endocrinologist or doctor about it and don’t miss your 6 monthly appointments but be engaged with your diabetes at these other times of the year as well, because this is your future and your life is better with a healthy you in it. Take initiative, take control and make some changes.
And here's a pic of the gorgeous Isabel!
Diabetes life before pregnancy was more stable and required less changes but I am embracing this life and enjoying it a lot. A lot of that comes from the knowledge and confidence that I can make changes to my basal insulin requirements, carb ratio’s, insulin sensitivity factors on my own. Anyone can do this. You are dealing with your diabetes 100% of the time, you are the professional when it comes to your specific brand of diabetes and you know what works and what doesn’t. You know if your blood glucose levels are always going high at a certain time of day and you know if they are always going low. Make some changes but only by minimal amounts at a time and you will notice a difference slowly. You can make these changes every few days until you are getting the pattern that you want to see. Even in someone without pregnancy, basal rates, insulin sensitivity and carb ratio’s change at some different points during your life. Diabetes is not a static creature. It can be influenced by any number of things that happen in a normal day or week. To have consistently good blood glucose numbers you have to be open to change and willing to manage your diabetes on a daily basis. If you are concerned about anything or overwhelmed of course, speak with your endocrinologist or doctor about it and don’t miss your 6 monthly appointments but be engaged with your diabetes at these other times of the year as well, because this is your future and your life is better with a healthy you in it. Take initiative, take control and make some changes.
At 21 week pregnant insulin resistance had definitely started! Breakfast time and lunch time was seeing me do about double what my bolus wizard settings suggested just to bring my post meal readings down.
I am now nearing the end of 22 weeks and meal times are difficult to control generally but with corrections and some guesses it is working well. I will eventually get all my Bolus Wizard settings right but everything is just so changeable at the moment that sometimes it is just easier to do it the old fashioned way of picking a number of units associated with what I am going to eat, what I will be doing that day and what happened yesterday, a bit of wizardry goes a long way if you ask me. Reducing my Carb Ratio’s to any lower than 1:8 is a scary prospect but I must do it!
I have been feeling kicks now, since about 20 weeks. I think it feels like little bubbles under my skin. Although the kicks, elbow nudges and whatever else is hitting my internal stomach space are getting
My Basal Insulin Requirements - Pre Pregnancy
a little bit stronger now and a bit more cheeky. I swear he is kicking my bladder!! Not helpful at all
on a long car trip!
As you can see from the graph below compared to the one above, my basal insulin requirements and
profile has changed a lot in this short period of time. You can only imagine by seeing this how many
small adjustments I have made to get here! No specific pattern shown on this graph compared to
the other one but these changes, even though they are frequent, are required by me and my little
midget at the moment. I make them as I see necessary and I do change them all the time to try and
get the best result.
I finally have my night time basal insulin levels perfect for the moment which I am so so happy about
and so proud of myself for! These little achievements get me through my day with Pregabetes! The
rest of the day my BG levels remain largely between 4 and 8 with some constant willing by myself
and manual insulin bolus’. This is the hardest after eating. My BG level seems to go up and remain
up for longer periods after I have meals now. This means a lot more testing and a lot more creative
correcting but if I am keeping myself happy and our midget healthy it is totally worth it.
I am always so interested to see CGM traces of other people with diabetes and I am sure there are
numerous people out there are the same. While I say my BG levels are generally between 4 and 8, I
do have BG levels up to 12 on occasion, I try not to let them stay there too long. I do float around
the 8 or 9 sometimes and I have had some under 4. This is diabetes. My BG targets at the moment
are between 4 and 7 so, judging by the graph below I reckon I am still doing pretty well. It is such a
juggling act but as I have said before, it is one I have dealt with for 21 years and pregnancy hasn’t
really made that any easier or harder, just different. Just remember tomorrow is a new day and if
today is not working out how you planned, re centre, re focus and tackle tomorrow with an open
mind.
May 14, 2016
Election 2016: Government proposes $54m subsidy for type 1 diabetes technology
Key points:
- CGM devices track glucose levels, sound an alarm if too high or low
- The proposed funding would subsidise devices for up to 4,000 children
- Devices mean children, parents do not have to wake up for finger-prick tests
- Regional families have recently been calling for a subsidy
May 7, 2016
FREE exercise program - our gift to you on Mother's Day
Happy Mother's Day!
Our dietitians have teamed up with Diabetes Victoria to help get those with Type 2 Diabetes exercising.
As cost can sometimes be a barrier, this whole program is bulk billed so you won’t pay a cent.
Our dietitians have teamed up with Diabetes Victoria to help get those with Type 2 Diabetes exercising.
As cost can sometimes be a barrier, this whole program is bulk billed so you won’t pay a cent.
Anyone with Type 2 Diabetes is eligible and here is what you receive at no cost:
- An individual assessment with one of our Accredited Exercise Physiologists (AEP’s)
- 2 months (twice weekly) of fully supervised and instructed group exercise classes with our AEP’s
- A 6 month complimentary membership with Diabetes Australia – Vic (this membership is only available in Victoria – the rest of the program is still available in all other states)
There is no other program in Australia offering you this much at no cost. So look no further as for diabetes control, this is important for your health.
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