Gingerbread house - School holiday fun

We have finally finished our gingerbread house. It is not quite as pretty looking as I had hoped but I'm trying to be OK with that. I bought a kit from Coles and added some extra lollies. I love Freckle chocolates and so do my DDs. And the make get roof tiles.

Side view of fake chimney

The front yard has a Christmas tree, a Snowman and a Gingerbread "person". You'll just have to believe me.

The school holidays have been trying my parenting skills. The four girls are full of beans and tiring me out but we have sqeezed in some fun. The girls aren't used to be all at home for more than two days in a row and have taken a bit of time to learn to play well with others. Hopefully things will continue to improve. I'm sure people having been praying for me as then have gotten better since taking to friends from my church community group. I'll have reinforcements of the adult kind from next week as DH is taking two weeks leave.

The photoes are taken with my nice new camera in my nice new kitchen. Hopefully I'll get some kitchen photos up soon.

Back view

A more accurate diagnosis - Not Type 1 - Neonatal Diabetes

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.

The highs and lows of Swimming, and Sick ,Sick Sick.

The weather is warming up here and DH took all the girls swimming yesterday. When I tested Miss F for dinner just an hour after they got back from the pool she was 3.2 (57.6). (Anything under 4 is a hypo or low.) She seemed fine but I gave her extra carbs with her dinner and her normal dose of medication. When I checked her before I went to bed her BGL was 5.2 (93.6). She had eaten afternoon tea before going to the pool. I know that many T1s have problems with swimming and lows. Has anybody had any experience with this and Neonatal Diabetes? Thankfully everyone had a great time swimming, so we will just have to learn how to manage swimming, medication, food and BGLs. Always learning.

Miss F is now 26mo and has been on Glibenclamide (Glyburide) for just over 10 months. Things have been going well for the most part. She has had some non-symptomatic lows when sick earlier this year but we have gave her some apple puree and her BGL has come up. When she was sick again recently I reduced her dose to half normal dose and didn’t have the same problem. I then gradually increased the dose as her BGL numbers increased. It was a vomiting bug duing the school holiday break and it is quite funny to watch a 2yo vomit, take 2 steps and vomit some more. But then I had to clean it all up. Not so funny.

The rest of the house also were to varying degrees and varying symptoms. We had to cancel three playdates and the children that were well at the time went a bit stir crazy being quarantined with the sick people.

Missing in action.

I have even more busy than usual for the past month or two. We have had two birthday's and have organised a kitchen reno on top of the normal things to keep a family of six running.

We have taken some progress photos of the kitchen, so I will share those soon. I need to get them on the computer first. Actually getting the kitchen put in seems to be easier than picking all the appliances and features. There are endless choices (some are out of the reach of our budget) for cupboards, colours, benchtops, drawers, taps, sinks. You get the idea.

One of the things that has happened in the last month is on the diabetes front. Something that added just a bit extra stress each week was heading to the hospital to get DD#4 F's oral medication. We get a suspension for the ease of given an accurate dose and being able to change the dose easily as she grows. The hospital will only give the suspension a shelf life of 1 week as they don't have test data for for any longer. My local pharmacy starting compounding a month or two ago so I thought I would see if they could make it for us. Long story short. They can and have. We are on to week 4 of our first bottle and all seems to be going fine with her BGLs. They only problem is the cost. I put in claim to our private health insurance this week but I don't know if it will be covered. It costs more than 10 times the hospital phamacy price to get it from the local phamacy BUT it very convenient. The jury is still out if we will be able to continue to get it locally long term.

DH has just gotten back from his bible study and he wants me to tell you all how special he is. DH is special.

Remembering the Ekka - Fun Friday

I'm still playing catch up for August so this post is about the annual Royal Brisbane Show (Ekka). Our family went on People's Day Wednesday 10th August, which is the day of the local public holiday. We only decided the night before that we might go so I had a search of the official website to see what would be the main attractions that we would want to see. We quickly decided that seeing the fireworks would be a highlight so we would go later in the day so the children wouldn't get too tired.

We decided to not tell the girls about the plan in case the weather wasn't suitable. We had planned for a kitchen designer to visit us about lunch time as well so we planned to fit things in the day OK. We wanted to leave for the Ekka at about 2:30pm. The kitchen designer did a very through job and by the end of his visit DH was hurrying him up so we could get going. He left at 2:15 and we were out the door by 2:30pm. I don't think we have ever gotten ready to go out so quickly before.

We entered near the children's sideshow alley so some rides for the girls were first on the agenda. We then headed to the dog pavilion and then the Agricultural Hall (with big displays made of fruit & veges). I remember seeing similar displays as a child. We then headed for some afternoon tea and then Animal Boulevard. There were plenty of animals on display, horses, fish, birds, ewes giving birth, beef cattle, dairy cows being milked and an animal nursery. The 4 girls really enjoyed seeing all the animals. While we were there we saw a family from school and mum who was in my Mother's group when Miss C was a baby, I haven't since her for over 6 years. A few more rides were then on the cards. Dodgems were a favourite for DH (big kid) and Miss C.

I then persuaded the rest of the family to look at the cooking and crafts displays. The decorated cakes were impressive and the other baking made us all feel hungry. I enjoyed looking at the sewing and handicrafts. The girls were interested for a while but we skipped the painting and photography sections.

Strawberry ice creams and show bags were next on the agenda but the lines for both meant a change of plans. It was time for dinner. At least one Dagwood dog (corn dog) was consumed but we didn't give in to the pleas for fairy floss. After dinner we searched for seats in the stands around the arena to watch the night program. We ended up walking to the opposite side of the arena to get seats in the third back row.
Once the family was settled I headed back to the other side of the arena to get Strawberry ice creams. I really wanted one. It would make my Ekka experience complete.
This is the official description from here.  The Ekka Strawberry Sundae is mouth-watering top to bottom-from the crunchy wafer cone to the smooth vanilla ice-cream, sweet chopped strawberries, delicious awardwinning handmade gourmet ice-cream, swirls of fresh cream and topped off with a tasty fresh Queensland strawberry.
 I search for another stand with a shorter line but I ended up in the long line waiting for 6 ice creams. I then had to very gingerly walk back to our seats, with strawberries threatening to fall and general ice cream wobbles. I am saw I was a sight. I made it back and ice creams were consumed as we watched a precision driving team, motocross stunts and Monster trucks. I could not believe how exciting my DD's were to see these motorised acts.
I missed on the National anthem and some cattle mustering. The night was finished off with a great fire works display. Miss F had the best smile on her face. She really loved it.

I am really glad that we made the effort to go with all the children. I haven't been since before children and DH took DD#1 C & #2 D 4 years ago so they didn't remember it this time. I was almost due with DD#3 and could barely walk, so I didn't go that time. I remember going with my grandparents as a child so I hope the older girls might remember this when they are older. Great memories for us anyway.

A bit behind

I haven't posted for a while. Sorry for the silence. Any opportunities I have had I haven't been able to get my thoughts together.

I'll go back to where I left off. Jelly Beans - Diabetes Camp. It was great. All the girls had a great time. They made friends and hung out. Miss C even started swapping clothes with her new friends! She is not even 8yo yet. I am glad that they had a such good time. They spent a bit of time fascinated by who had diabetes and who didn't and then it wasn't even an issue. Miss E who turned 4 yo last week has said to me a few times since camp "Some of the kids had pumps."  I was worried that DH wouldn't enjoy camp but he met lots of other parents and learned a few things too. I met some lovely people and got to touch base with other I had met before, including a mum I "met" on the Munted Pancreas forum. It is great to talk to people who "get" diabetes.

For being surrounded by children with Diabetes (CWD) I saw very little testing and no injections. I know that some were using Multiple Injections a Day (MID) but I didn't see any sign of it. I saw a few pump controllers out for boluses, particularly when the Freddo frogs were handed out during Diabetes bingo. The girls loved all their prizes.

The sessions for parents were good. It wasn't all so new like last year but I felt guilty that we don't have to struggle daily to keep Miss F's BGL in range. As long as we test and dose with her glibenclamide her BGL should be good. I want everyone to have our miracle.

During one of the session I did have an opportunity to present information about Neonatal Diabetes and other forms of Monogenic diabetes. I really liked to be able to talk to a group of interested individuals about this new diagnosis of KNCJ11 - R201H. Most of these families know other CWD and other PWD so getting the word out may lead to some others having their T1 diagosis changed or at least investigated further. Getting to do this session reinforced my decision to try and become a Diabetes educator. I sent e-mail out today to the UK Diabetes Genes group looking for some advice on the process.

Jelly beans - Friday Fun

Well. I do love jelly beans but the best bit about today's jelly beans is that it is Camp Diabetes - Making a difference for kids with diabetes.

I have almost finished packing for our weekend away. I still need to check my list but I think I am almost done. Packing for 6 is quite an exercise. But I am really looking forward to the weekend of meeting other families dealing with diabetes. And sharing our story of Miss F's rare form of diabetes and her new treatment. Our story of Neonatal Diabetes might not make a direct difference to anyone on camp but hopefully it will help spread the word to even more people of this rare form of diabetes.

Everyone is looking forward to the weekend away.  Have a good weekend.