Dealing with diabetes is hard. Looking after a newly diagnosed baby is harder. How much was she drinking at a Breastfeed? I guessed. I had no idea of how she was feeling. I most probably missed lows and highs because I didn't test at exactly the "right" times but we made it through. After Miss F was discharged daily phone calls to the on-call Paed endo and more education session at the hospital were the new "normal". Miss F reduced her number of feeds in weeks after diagnosis so much. From 5 breastfeeds and 3 bottles every day to 3 breastfeeds and a bottle if she was low in a just a month or two.
We gradually reduced the calls to the endocrinologist and started making decisions about insulin dosages ourselves. I worked out how much food she could have for snacks without making her blood sugar spike with her long acting insulin and how much short acting insulin she would need to cover her meals. I tried to keep the times of her breastfeeds fairly constant to make that as predictable as possible in amongst balancing the carbs of her meals and insulin doses. It was quite hard to come up with low or no carb foods suitable for a baby that has just started solids. As I introduced foods I had to worry about how much of it she ate and if she spat some out.
We had to lance her skin at least 5 times a day to test her blood. Usually it was more because if she was low you would need to check again later to check that the apple puree or juice we had used to treat the low had helped bring up her blood sugar. If she wanted to eat something we would need to check her BGL to see if she needed more insulin to cover the food or try to work out if she had enough insulin in her system to cope with extra carbs. Sometimes I would look at her beautiful little legs before I put an insulin pen into her but know I had to do it to keep her alive.
I had certainly never heard of Neonatal Diabetes but I remember asking one of the diabetes educators at the first education session after hospital admission if there are other types of diabetes. Ones not caused by an auto-immune response but with something going wrong in the pathway to producing insulin. Little did I know how close to the truth I was.
When she was diagnosed with diabetes I felt we were given lots of information about managing diabetes in children but not infants. I think there was one page on toddlers in the book we were given. Most of my search for information centred around infants with diabetes. I searched and searched the internet. I came a across a bit of information about Neonatal Diabetes. After looking at some of that info I thought it sounded a lot like Miss F. Low birth weight, Failure to thrive, urination, presentation of symptoms before six months, etc. One things I wasn't sure about was if she tested positive for auto-antibodies at diagnosis.
I wanted to her to get tested immediately but I had to make an extra appointment to see a Dr at the Clinic to be able to discuss doing DNA testing as I didn’t want to be waiting the 3 months to the next appointment to get the ball rolling. I asked about her antibody results. Once the Paed Endo #2 looked at her initial test results and saw that she had no antibodies they were happy to do the tests
At diagnosis one of the younger doctors asked Paed Endo #1 if they would do DNA testing. He said not yet. I didn’t even know why DNA testing would need to be done. So the tests were done and the wait began. I did more searching for information about the various forms of Neonatal Diabetes. It became clear to me that some forms responded to oral medication and other didn't. So I spent a lot of time praying that it would be a type that responds well to oral drugs. The more I read the more I was convinced Miss F would get a positive result I just wasn't sure which type of Neonatal Diabetes it would be.
Breast feeding a baby with diabetes made it a bit harder as she stopped taking each feed. I had to make sure she was getting enough other food so it wouldn’t affect her blood sugar levels.
While we were waiting to the DNA results Miss F had her first birthday and we definitely wanted to celebrate her making it through her first eventful year. At her first birthday party we had to test her BGL and give her more insulin before she could have even a piece of her cake.
Also while we waited Miss F and I went to Camp Diabetes. It was so helpful meet other parents and receive more education. The JDRF peer support person I was assigned encouraged me to go on camp and meet others. It was the best advice I have received.
After I was given the positive DNA results for KCNJ11 (Kir6.2) R201H our next appointment was made for late December. I asked Paed Endo #1 if I would have to wait until then to find out more and he reassured me that they would be in contact before then. I then came home and could focus on the particular mutation Miss F has in my search for information. I found a number of articles about the successful transfer of patients with KCNJ11 mutations (Some with the exact R201H mutation) and also protocols for transitioning patients. When a doctor called they said that transitioning would be discussed at the next appointment (nearly 3 months away). I said that didn’t seem right as I had information on how to transition and knew that patients with the exact mutation had transferred. The next phone call lead to some e-mails back and forth with articles and protocols and selecting a date to transition.
I have had to search for information about Neonatal diabetes myself. The hospital hasn’t given me any information about Neonatal diabetes except to point me to the UK group who discovered the gene mutations. I guess they know that I am an informed adovcate for Miss F but it would have been nice for them to be actively supportive of my search for information.
I have a Bachelors degree in Science and a Graduate Diploma in LIbrary and Inforamtion Studies so my searching for information wasn't just google. I searched medical journals online and anyway I could get access to articles including going to the campus libraries so search myself. The more I found out the more targeted I could be in my search for information.
I contacted the UK group and found out about their Neonatal Diabetes Open day held in August 2009. I have received some information from them. I also asked them for contact details of others with Neonatal Diabetes particularly in Australia. They have been able to give me details of a couple of families in Australia. Privacy rules have been a bit of a pain with this as they had to contact the doctors would had to contact their patients to see if they were happy to to be put into contact with me. I understand privacy and patient confidentitally is important but it sure can slow communication down.
I also contacted the Kovler Diabetes Center in the USA and have joined their study and forum. I have spoken to one of their doctors and he was very helpful explaining things and answering questions. Finally I could ask question directly with someone who had some experience with Neonatal Diabetes.
I have been able to talk to two families here in Australia whose children have Neonatal Diabetes. One of the children has Transient Neonatal Diabetes and doesn't currently require any treatment. The other child is now on oral medication.
Last November Miss F was admitted to hospital to transition to oral medication. We used a CGM to monitor her BGL during the transfer. They gradually decreased her insulin and increased the glibenclamide over a number of days. Her pancreas started making its own insulin. We no longer have to monitor every bite of food Miss F eats but she will require still medication to keep her alive for the rest of her life. We still monitor her BGL 4 times a day.
If she was born and diagnosed even 6 years earlier we would have had to wait for this discovery. The first person to transition from insulin to an oral sulphonylurea only did so in 2004. Miss F’s BGL control has been a lot better since changing over to oral medication. Her HbA1C (measure of glucose on Haemaglobin- which indicates control of past 3 months) has gone from 16% at diagnosis, 7.8% (after 7months on insulin therapy) to 5.3% (after 9 months on glibenclamide). Her BGL is more stable and doesn’t fluctuate so high or low.