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.

National Diabetes Week 10-16 July

This week is  National Diabetes Week here in Australia.

A quote from the Diabetes Australia web page "Each year Diabetes Australia celebrates National Diabetes Week to raise awareness about diabetes in Australia. The campaign aims to educate Australia of the risk factors for type 2 diabetes and how type 2 can be prevented."

It makes me mad on behalf of people with Type 1 Diabetes that the focus is so fully on Type 2. Prevention is great but Type 1's need a cure and not more people telling them that they should have looked after themselves to avoid the disease and that they can't eat that.
Another focus of National Diabetes Week is Eye health and getting your eyes checked which is important for anyone with Diabetes. I can't argue with that. Diabetic Retinopathy is a real danger when living with D over time.

As a mum of a CWD who isn't Type 1 or 2 I get annoyed with the lack of information about Monogenic forms of Diabetes. I know it is rare but an accurate diagnosis has changed our life.
Most sources of information about Diabetes only include Type 1 & 2 and somtimes Gestational. Some forms of Monogenic Diabetes can be treated with oral drugs - glibenclamide (like our Miss F), some don't really any treatment and some still need insulin but knowing can help get better treatment and outcomes.

Rant over.

Any ideas on how to make a difference?

Playing with diabetes

Today was full. Today was great. Today my big girls, DD#1, 2 & 3 went to Kids Club in the morning and we brought 2 extra girls home for lunch.
When the other girls had gone home I made a quick decision to join the Diabeanies play date that I had hoped we could go to but hadn't counted on. I had to wake Miss F from her nap. Pile the girls into the car and drive to an unkown part of the city. I did have to stop a number of times to check the street directory. Miss C even commented on the number of times I pulled over to check.  "Are you stopping again mum?" "Yes, I am.". Anyway we got there and I had a great time. Meeting up with other D parents is great. They get it about BGL checks, and Doctors and just "get it". The know where you can get skins for your meter in Australia. Level Living, by the way.
I think the children had a good time too.
A lovely Diabetes Educator that I met on a Camp was there too, it was good to catch up with her and tell her about Miss F and how she is going on glibenclamide (glyburide).
I also had a chance to tell a few others about Felicity's type of diabetes and her treatment. I like to tell as many people as possible hoping that it will make to the right ears eventually and help change another life.

Lows and sickness.

We have various sicknesses in the family over the past couple of weeks. Ranging from the sniffles through to vomiting and diarrhoea but nothing too serious or lasting long enought o warrant a doctor visit.

But the most surprising and worrying thing has been the lows DD#4 Miss F has had. In the last 7 months since transferring to glibenclamide (glyburide) from insulin I have become used to F's BGLs being pretty even. I am still testing at least 4 times a day but the numbers don't move too much. If she is sick they usually go up slightly.

This time is has been different. She has gone low. Not really low but 2.1, 2.6 and 2.4 have been seen over the weekend. So Saturday around midnight found me spooning apple puree into Miss F. She was 3.5 at breakfast which was reasonable I thought. I then halved her dose and got some better numbers for the day.

I have also only given her her suspension after I have seen how much she has eaten as she has been only eating smaller amounts. Yesterday one BGL reading was 10.1, so I have since increased the dosage to 2 thirds her normal dose as long as she has eaten.

In amongst this all I was trying to extend the time we use her bottle of medication last Thrusday and Friday. The pharmacy recommends using each bottle for only a week. I would dearly love not to have to trot off to the hospital each week. So I will have to experiment a lttle bit again when she is well. Now I don't know if the lower numbers I was getting mean that the suspension is fine to use for up to 2 weeks or more or if F's BGLs were lower because she was getting sick.  Back to the drawing board.

Endo appointment

I spent a couple of hours last night trying to download the reading from DD#4's Optium Xceed meter. The Copilot works great to give an overall view of what the BGLs are doing. But the meter didn't what to talk to the PC and I had to reinstall thedriver software. I finally got some lovely printouts (graphs, pie charts, etc) to show the doctor.

Well I was expecting good things from today's appointment. I wasn't disappointed, thankfully. Hb A1C 5.3 yay:) I feel like I have passed a test but really all it is is the appropriate treatment for my daughters rare condition is working effectively. We have tweaked the glibenclamide (glyburide) dosages a little since last appointment to 2.75mg breakfast, 3.75mg lunch and 2.75mg dinner. The increased dose at lunch seems to cover lunch and afternoon tea better than the 3 equal doses we had previously being using.

It seems so weird to be thankful that F has a rare genetic disease one little Arginine peptide changed to a Histidine at the 201 codon but it has made the management of her Neonatal diabetes easier.

I also found out that DD#3 thought that her sister didn't have diabetes anymore. The new treatment certainly isn't a cure but is a miracle. Still praying for a cure for Type1 and the monogentic forms of the disease.

Saturday Snapshots - Diabetes Blog week

 

Our supplies while DD was on insulin

Insulin - Levermir, NovoRapid and Protophane

3 Insulin pens

box of Needles

Large sharps bin

Small sharps bin

Glucogon and Syringes

2 Optium Xceed meters

Glucose Strips for meter

Blood Ketone Strips for meter

Multiclix Lancer

Lancer drums

Diabete-Ezy Test-Wipes

Basket and bag to store it all in the pantry

Our supplies on glibenclamide (glyburide)

Glibenclamide drops (shelf life 7 days- stored in fridge)

Oral drops syringes

Optium Xceed Meter

Glucose Strips for meter

Multiclix Lancer

Lancer drums

Spare Glibenclamide tablets

3in1 tablet cutter/grinder/storer

Apple puree to mix in tablets.

The tablets are a back up. We had power blackouts for 4 days when Brisbane flooded January 2011.

We need to be prepared for that type of situation. 

Our back up supplies

Insulin - NovoRapid

1 Insulin pen

10 Needles

Small sharps bin

Glucogon and Syringes

Extra Optium Xceed meter

Blood Ketone Strips for meter

Basket to store it all in the pantry

 
We have these supplies just in case DD's BGL goes so out of range insulin or glucogon is necessary.  As time goes on and we are more confident on how she responds to different sicknesses we might not keep all these things but at the moment I like to be prepared.

Meeting Awesome people - Diabetes Blog Week

Today topic is to focus on the good things diabetes has brought us.  What awesome thing have you (or your child) done BECAUSE of diabetes? 

An awesome thing I have done because my child has diabetes is meet some great people (both in real life and online) whose lives have been touched by diabetes. People with diabetes, parents of children with diabetes, spouses of people with diabetes, doctors (yeah, I’m glad I have met a couple of them). I have met a whole bunch of great people that I would not have met otherwise.

My DD and I went to Camp Diabetes with some great educators, nurses, parents and children with diabetes 3 months after diagnosis. I learnt a lot and for the first time met others dealing with this thing- diabetes. I found it amazing how there is a bond with people you have just met because of the shared experience. We may not have had exactly the same things happen but we all know about the shock of diagnosis, the ups and downs of BGLs & the ups and downs of diabetes. We know the fear of hospitalisations, the fear of bad lows (is there a good kind?) and the dread of diabetes complications long term. Through our hospital I met Julie (her son is one month younger than my DD) check her blog over at Bittersweet - Our baby & Type 1 diabetes is has been great to chat to someone with a child of similar age. Not many children are still being breast feed when they are diagnosed. :)

Reading others blogs and participating on boards helps with tips, ideas and generally knowing you aren’t alone. I sit nodding in agreement, crying in the pain shared and strangely comforted by others need to vent.

I am usually shy about meeting new people but the desire to better help my daughter has meant that I have made contact with people on the other side of the world to help my daughter. Thanks to the Kovler Diabetes Center in Chicago, US and the Diabetesgenes.org in Exeter UK for their information and the support to make contact with other patients. I have called strangers whose children have the same rare Neonatal Diabetes, just to hear that they understand and have been there. I have met awesome people (Hey, Christy) who have inspired me to educate others about Neonatal Diabetes.

If I can get the word out that not everyone diagnosed as an infant has type 1 diabetes but they may have Neonatal diabetes and be able transfer off insulin and get better BGL control and long term health because of us. That would be awesome too.

A letter of Thanks - Diabetes Blog Week

This is a much more positive post than the last one. But it is another letter I have been meaning to write for a while. I might even send this one. :)

Dear Professors Ashcroft and Hattersley,

Thank you so much for your work and how it has impacted our lives.
Just over 12 months ago my nine month old daughter was diagnosed with diabetes. Without your research she would still be requiring insulin to keep her alive. Six months ago she transferred to oral treatment with a sulonylurea (glibenclamide or glyburide). Our lives, her life is better because of your individual work and your collaboration.

Professor Frances Ashcroft thank you for your work focusing on ATP-sensitive potassium (K-ATP)channels and how they work in insulin secretion. My daughter DNA mutation means hers don't work as they should.

Professor Andrew Hattersley thank you for leading the genetic team in Exter to identify activating mutations in the Kir6.2 gene causing a form of diabetes.

Even though she was older than the 6 months old usual cut off for Neonatal diabetes diagnosis she had been sick for at least six months. She had no beta-cell autoantibodies detected and had been a low birth weight baby (2.6kg). So she fit a few of the criteria for genetic testing. I am so thankful that we did the DNA test even though getting a blood sample drawn from a small baby is traumatic. The outcome for our family has been great.
I don't think it is very often that parents would be praying for a positive result for a DNA mutation but we are thankful.

She has a R201H mutation of the Kir6.2 or KCNJ11 gene. Her blood glucose levels on the oral treatment are good. And her HbA1C after 3 months on her new treatment was 5.5 down from 7.8 in September.

So, thank you, thank you, thank you.
Basically I can't thank you both and your teams enough.

Best wishes for your future research,
Melissa (a grateful mum)

First diaversary - One year on from diagnosis

It is one year today since our family changed in an unexpected way. Last year DD#4 F was diagnosed with diabetes. After months of worrying, wondering and wandering (between doctors) we were given an answer to why our little one had "failed to thrive" as the doctors put it.

It turned out to not be a straight forward diagnosis of Type 1 but a very rare form of Monogenic diabetes. Neonatal Diabetes was her new diagnosis after genetic testing. Particularly as mutation of the Kir6.2 or KCNJ11 gene - R201H. We found out in September and I promptly started blogging away. Partly because I couldn't find much online about babies with diabetes when Miss F was initially diagnosed.

It's not a club I would haven't picked for Miss F (& our family) to join but I have met some some great people through this journey. I'm sure we will meet many more. The DOC (Diabetes Online Community) has been great ask questions and find out how others cope with different things. Those in real life have been equally important to us getting through this first year.

Thanks for you encouragement, support and prayers as we have made our way. I am thankful that God lightens the load as we share with others.

Missed a dose and feeling silly.

Last night I tested DD#4 BGL before I went to bed.  It was 11.1 (200) which is a bit high for her. I hadn't given her the medication at dinner. I asked DD if he had given her dose of glybenclamide as he tested her then. But no. So that was why she was a bit higher than usual. Out of the 4 last readings over 10 (180) 2 have been missed doses, 1 explained and the other must have been food on finger because the other hand was 3.3 (59).

I am so thankful for the good control we have had so far on this new treatment. We don't really know what the future holds as it is a bit of an experiment. Only a dozen or so people are using this medication for this condition in Australia and 500 or so around the world.

Why I blog?

Christy from  My 2 Sweet Babies has invited me to share why I blog.  She was asked to do the same by someone else on the DOC (Diabetes Online Community).

I tried to start my blog in January 2009. I made it as far as one post. I started again on the September 2 2010 the day I found out DD#4 F had Neonatal Diabetes.

So my reasons for my blog have changed from my first attempt in 2009.
My 5 reasons are:
1. Share our life - a few of my friends have blogs and I love to hear what they are doing and what they are thinking about. So I hope some of them might like to hear what my family and I are doing as well.

2. Educate about diabetes  - one of my best friends from uni has diabetes so I thought I knew a bit. I have a science degree in biology. I think I did know everything I wanted to know about it. Having a baby diagnosed put me on a steep learning curve for everything I needed to know to keep my baby alive.
I tried to find information on the web when she was first diagnosed about babies with diabetes. I didn't find the families stories like I wanted to hear. This is part of our story with diabetes.

3. Educate about Neonatal Diabetes - it is so rare and the change in treatment that some can undergo makes such a difference. I just want to find everyone who can benefit. Just this week I have contacted I person diagnosed at 6 months to ask if they have heard of it and advised them to look into it for themselves. I would love to become a Diabetes Educatorfor Monogentic forms of diabetes one day. Doctors need to know more about it as well.

4. Connect with others - I felt very lonely when F was diagnosed. I didn't know anyone in a similar situation. She was just under 9 months when diagnosed. When we got home from hospital I called JDRF and Diabetes Australia Queensland to try and find some support but it was hard to get someone who had even heard of a child under one year being diagnosed. Introducing solids while counting carbs isn't really what I would call fun. Finding the DOC has really helped. Hopefully my blog will help others even if it just that they can see that I have gone through soem of the same struggles.

5. Record things - I have never been one to write a diary but I liked the idea. So now I get to play around on the computer and have a record to look back on.

If you would like to share why you blog please do. I don't like to tag.

Recording medical history

As with any type of history it is most probably better to record it as you go. But I am currently trying to reconstruct the path to F being diagnosed with diabetes. And then finding out about her rare type of diabetes.

I had certainly never heard of Neonatal Diabetes but I remember asking one of the diabetes educators 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. If she was born and diagnosed 6 years earlier we would have never known. The discovery was only made in 2004/2005.
I so glad we sought answers and that the answer was KCNJ11 - R201H. And being treated with sulfonylureas instead of insulin.

Hello again.

Well don't really know where to begin. So much has happened. We have had a lovely holiday at Caloundra (Sunshine Coast).
We came back to a very wet Brisbane, that only got wetter. There has been major flooding to our suburb and allow we weren't directly affected it has been a stressful time watching and waiting to see where the water would stop.
As we were away for more than I week we need to use tablets for F. These were crushed and added to food, usually apple puree which she loves. Thankfully we were given more tablets than we actually needed. This meant we actually had enough medication to cover the time we couldn't get to the hospital because of flooding. Even if we could have got there the fact her medication needs to kept cold would have been had with no electricity for 4 days.
F was also sick in the last week, just a cold, but her BGLs were only slightly higher. Yay.

Clinic visit

On the 20th F had a review appointment at the hospital. I was very happy to be able to tell the doctor how well things have been going since transferring to oral medication. She has been able to eat a lot more and has great BGL's. I don't have to restrict how much fruit she eats or "carb count" every bit. F is loving eat. Even refusing more pasta, which totally unheard of while on insulin.
Today we were able to give her all sorts of Christmas goodies and she loved it.
Our next appointment is at the end of January.

A day full of ....

Busyness.
Today my mum came to visit and we spent the morning doing Christmas shopping. Then it was a quick lunch with the children in the food court and one more store. All the shopping meant that we had to go directly to F's appointment. Nana entertained the other DD's at the local library.

Good news.
The appointment for F was with the Physio and Speech & Language Pathologist at the Child Health Centre. They are happy with how her gross motor skills have come along since first seeing her at 7 months. She wouldn't take weight through her legs at all. She wouldn't bounce when held standing on my lap but now she is walking and crawling up stairs. Only slightly behind "normal".
I still have some things to do at home with her to help her wih her fine motor skills and to actually get her "talking". I think she will be fine. Now that her diabetes is diagnosed and better controlled on the oral drugs she is healthier and happier.

Bad behaviour.
Taking 4 children to a shopping centre for 4 hours lends itself to all sorts of opportun9ities for the DD to misbehave. I was reminded why I don't do it often. I was also remind why my kids are banned from standing on the edge of the trolley. A bad accident was very narrowly averted.
There were times when I was reminded that they can behave will but they were few.
It is times like these I question my parenting skill and just have to pray to strength.

Things going well

It is now 3 weeks since I went into hospital with DD#4. F's treatment is continuing to go well. Her blood glucose levels have been great. I no longer have to starve her to keep her levels in check. It been great to not have to worry if she grabs a piece of fruit herself.
I'm having to get used to not needing to have her BGL at 7 or more at bed time. It is not going to go down during the night like when she was treated with insulin.

When F was diagnosed I couldn't work out what good God could have in His plan for us with years of diabetes ahead. But we have had our own miracle in this new treatment and I am so thankful. I just want everyone who could benefit from this treatment to find out about it.
Even the support we have received from our church has really shown God's love for our family.

Out of Hospital

F has successfully made the transition to oral medication. Glibenclamide is a drug usually used in treatment of Type 2 diabetes. But for the past 6 years they have been using it for patients with some forms of Neonatal Diabetes.
F hasn't had a needle since Thursday evening and I'm so excited. It really wasn't nice to have to give her needles even though it was keeping her alive.
I am so thankful that our prayers for a smooth transition were answered. I was quite anxious for a while in the lead up.

Off to Hospital

Monday is admission for F.
It is the day for assessments by doctors and OT. The actaul transition of medication starts first thing on Tuesday. We are hoping and praying it works and all goes smoothly.
I asked that she have a continous glucose monitor because I have no idea when she is low or high by behaviour or signals from F. I hope that it will make things safer.
All prayer for a successful transition are appreciated.
Hopefully no more insulin soon.

Making contact

I have been finally able to make contact with some other families with children with the exact same mutation. One of them has already replied answering lots of my questions about them starting oral drugs. Such a blessing to have someone who has actually gone through it with their child to ask questions. Not just doctors who don't have a personal stake in things.