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

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.

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.

Diabetes and Pregnancy Part 1

We are thrilled to welcome Isabel Reeves aboard as a guest blogger. Isabel is a Credentialled Diabetes Educator and Registered Nurse and is currently pregnant so will write about her journey here. If you'd like to contact Isabel please go to her website here: http://www.diabetesedu.com.au/

When I was diagnosed with Diabetes at the age of 10 I was told a number of things but only a few really stuck with me. The rest of the information that I use now, I developed on my own, with my mum and through some Endocrinologists whose opinions and treatment I valued. However, most of the information I use on a day to day basis is information that I have worked out on my own, either through trial and error or through books.
I don’t really remember much from the time I was diagnosed with Diabetes. I know that I was a little bit sick prior to seeing the doctor and being diagnosed. I know I had to spend 1 week in hospital learning how to self-inject. I know that my mum did a lot of investigating on her own and finally found the thing that would get us out of hospital, the inject eze. I know that my mum was talking to anyone she could about diabetes to try and get more information, she met an elderly lady who was in the hospital having two toes removed and I know they were black and smelly. Gross but valuable in my forthcoming diabetes management. I don’t know, but I have had it in my head from about the time of my diagnosis that people with type 1 diabetes will have a hard time getting pregnant, that it would be dangerous and that the child and/or the mother may have problems. I do think that something was said about this when I was diagnosed but I do not know if it was quite as dire as what my head has remembered. I do however know that other people have heard similar negative stories about childbirth as a type 1 diabetic person. I can’t 100% invalidate these statements yet, but I know of many people who can and this gives me great hope.
A friend was talking to me the other day about a television show she was watching that featured a lady with diabetes who became pregnant in the 1950’s. My friend was confused because on the show, the lady was advised that it would be in her best interest to abort the pregnancy as she had diabetes. I explained that this may have been the case. Through trying to find information on the matter it does seem that there was an increased incidence of foetal death in women with diabetes. It was back in this day that people with diabetes were testing their blood glucose levels by urinating and mixing this with a solution, or later urinating on a stick to determine treatment options. Diabetes has come a long way and so to has pregnancy in diabetes to a point where with well managed diabetes there is minimal risk to a baby’s health or the mother’s health through pregnancy.
I can now be my own judge as I am pregnant, which is super exciting. At 18 weeks now I can say that it is possible. I planned this pregnancy and did all the recommended pre pregnancy tests, I was exercising, eating well, taking a pregnancy supplement, extra folic acid up to 5mg and Iron because I was a little bit low in iron pre pregnancy and my Hba1c had consistently been about 6.2% for over a year. I was ready. My husband and I found out we were pregnant quite early at about 2 weeks and I have been monitoring myself closely since then with a Continuous Glucose Monitor (CGM) and the use of my Insulin Pump and my husband’s occasional prompts when I decide to ignore the buzzing.
There are a lot of books and websites on pregnancy and type 1 diabetes. All of which say similar things regarding the different stages of pregnancy and the different changes that are needed for the basal rates and insulin requirements through this time. I have found these to be somewhat true however, I have often needed to change things slightly earlier or slightly later than what is recommended, highlighting the fact once again that every type 1 diabetic experiences their condition differently. Similarly, I’m sure that EVERY pregnancy is different as well. This all coincides to create your unique experience of both diabetes and pregnancy and these two things in combination as well.
I have been very lucky so far in my pregnancy in not needing to deal with a lot of things that are common in pregnancy with or without diabetes. But I have had ups and downs dealing with my diabetes and my insulin basal rates. One day these are right, the next they are completely wrong. Diabetes, as you all would know, is such a varied condition and things change day to day even if you
don’t have a small person growing in your belly, so managing this while there is something else feeding off of you is a completely different matter. But this is not the only thing I have to think of. Some of the things I have to think about at all times is what I am eating, how this will affect my blood glucose levels, how my basal rates that I currently have set will respond to a green smoothie instead of a curry with rice, not always great btw. I may not look stressed or like I am thinking a mile a minute and considering all aspects of what I am about to do, but I have been doing this for 21 years now and it feels almost like breathing. Maybe not breathing, maybe more like running – difficult to start and sometimes painful afterwards but generally it feels so good when you get it right. And it definitely feels so good every time I find out I have an Hba1c in the 5’s and 6s. Diabetes is something that comes as second nature to me now but it still takes determination, thought, motivation and perseverance to do it well.
To all of you pregnant mums with diabetes out there who are suffering from different aspects of pregnancy related illness, stick in there and just do the best you can each day. That is all you can do.
In pregnancy with diabetes there are numerous changes that have to be made at different times but these time can vary between individual. At 6 weeks I experienced a significant reduction in my insulin requirements and dropped my basal rates down by about 4 units a day. My overall insulin use during this time was about 10 units less than my normal for a whole day. According to books and my diabetes in pregnancy specialists this was not meant to happen until 8 weeks.
At 14 weeks I began to increase my basal rates and therefor my overall insulin use and now at 18 weeks I am using about 8 units more a day than before my pregnancy. They say that usually 18 weeks is where the increased insulin requirements are seen but I am an anomaly and every person is, so like everything in diabetes, it is a matter of doing what is best for you. From here on I expect a gradual increase in my insulin requirements to the point where these will be at least double my total daily insulin dose at the start of pregnancy.
Making these changes and monitoring my Blood glucose levels is something that takes up 100% of my time. Whilst I am not overtly focused on it, BG levels are always in the back of my mind and are always something I think about before eating, exercising, sleeping or even going for a meeting. Although, this is honestly not much different to what I was like pre pregnancy, there is just another being at risk if I don’t monitor it well.
I am using CGM currently and have been for the last 4 months from just before I fell pregnant and this has been a great journey as well. I have previously only used CGM on occasion and out of interest. But now, having it most of the time highlights the fact to me that things can change so fast. I know there will be a lot of you who have found that even if you eat the exact same thing one day and do the same insulin, this could completely backfire the next day despite the exact same circumstances. Can anyone explain this? I don’t think so. But it brings up the huge list of other things that impacts on diabetes in general; stress, quality of sleep, sickness, busyness, heat, cold and numerous others. All of these things which can impact your diabetes management whether or not you actually realise that you are experiencing them in the first place.
Some funny things I have noticed during pregnancy:
1. Changes to the speed at which insulin hits the body or the speed at which food is digested and absorbed or both
I have noticed more and more that if I give insulin just before I eat, the normal time I would give insulin, I begin to go low before my BG levels will track up due to the food I have eaten. This is
something that I have not noticed before at all. Normally my BG level would stay fairly stable or it would literally increase as soon as I start eating. I have tried different ways around this depending on what I am eating but nothing seems to really work appropriately. I have bloused 10 minutes through the meal, by that time I am already tracking high and the insulin doesn’t kick in soon enough to bring it down very quickly. I have tried doing a square wave bolus which has the same result. Insulin is not delivered fast enough and therefor I go high. The best one so far is the dual wave but I have noticed that I need it over a shorter time period that what is offered. So, if I do 75% of the bolus straight away and then had the other 25% in 15 minutes I reckon it would work perfectly. Extending the time period to the 30 minutes is just too long. Now that I am getting a little bit of insulin resistance my pre meal insulin bolus seems to be working fine again but I’m sure I will get back to you with some other eccentricities in this area.
2. My belly is GROWING!
For those of you that have never been pregnant, yet… it is weird! Granted I may be eating a little bit more than normal but my belly is growing in a fashion that is abnormal to the usual. Not that I have ever put on this much specific belly weight in the past. Every day I reckon it is slightly larger. I can still see my toes but not much more of my feet at this stage. I have yet to feel any movement in there at this stage but I imagine that will be fairly weird to. I think it is most miraculous to think that I am creating a human being at the moment with a working pancreas! How is this possible when mine doesn’t even have this function?
3. The vast amount of places you can really place an infusion set or a CGM
We all know there are set places where you are supposed to put your infusion sites and CGM sites but I am a protagonist and I have been experimenting as I tend to do, with different spots. As my belly is less comfortable with infusion sets at the moment, I have been using my outer thigh more, which I really love as well as my obliques and my upper abdomen. I am keen to try my arms but I might keep that one for the CGM sites as I am a dress wearer and I think it would be very difficult getting in and out of a dress with an infusion site on my arm. Who knows? Has anyone tried it? I have also been trying my CGM in different locations and am finding that these are all fairly similar for accuracy. It works on the thigh, upper and lower abdomen and inner thigh although the readings here are a little bit iffy if you ask me. For me, I cannot get a site to go in right on my oblique’s, I have tried it three times here and every time I get bleeding which I cannot stop or get rid of because of the awkward spot that it is in.
4. Greater acceptance of different foods
Pre pregnancy I was very averse to eating Pasta because it was very difficult to control my blood glucose levels immediately after and for a long period thereafter, lasting for a good 4 hours. I have attempted doing numerous methods of insulin delivery in the past including dual wave bolus, square wave and just giving a large whack of insulin. None of which worked effectively for me while eating pasta. For some obscure reason, now, in pregnancy, my body does not react as intensely to pasta and in some cases I don’t need nearly as much insulin to combat the immediate high glucose levels. Currently, I no longer require extra doses of insulin with pasta nor a dual wave bolus to combat that meal. I don’t know why this is but I am most definitely taking advantage and enjoying life’s pasta a tiny bit more frequently and without such trepidation.
5. CGM and pregnancy
I must say that Continuous glucose monitoring has been a saviour in my pregnancy. Honestly my management of my diabetes is not very different to pre pregnancy. I used to test 10-12 times a day, I still do that. I used to aim for quite tight control and an Hba1c of around 6 and I am still doing that. My control is significantly tighter than previously with my BG goals being between 4 and 8mmol/L at any given time, and I do manage to attain this. I am doing my best to stay away from high BG levels and rarely have one over 10 mmol/L now. Because of this, I am obviously at an increased risk of lows but I do keep a close check and monitor my CGM and make sure that I attempt to treat lows before they come.
I know that I have had this pregnancy thing quite easy and I am very lucky but I have had my difficulties as well. I empathise with those who have had a more difficult pregnancy ripe with every problem that a person can have; nausea, vomiting, exhaustion etc etc etc. I know it can get worse and I know future pregnancies could be completely different, so I am going to enjoy the right now and enjoy all that I am going through to create a healthy son for my husband and me. To all those beautiful pregnant people out there, congratulations on the impending birth of your amazing child. I wish you and your families a safe journey and a happy and healthy experience.

http://www.diabetesedu.com.au/