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.

Fun Friday

I had a great time today listening to
Wicked. I loved the musical and I love the CD. Listening to it takes back me to the show.
This is the original (US) cast recording but the Aussie cast aren't going to make one.

What is your favourite musical?

Missing out on the fun

DH and DD's C, D and E went to the Planetarium on Saturday afternoon. I stayed home with F for nap time.
We booked ahead for the show after the disappointment of last try. The family ticket is usually for 2 Adults and 2 children but it was cheaper for our 1 Adult, 3 children family as well.

They all had a great time and saw Secret of the Cardboard Rocket. DH has been raving about and planning the next outing already. He keeping telling me useless interesting facts such as "while Mercury is a hot planet it's dark side is freezing"-knew that, "Venus spins opposite to the other planets" - had to look it up to post, already forgot it.

They also went to the Botanic Gardens and followed the Hide 'n' seek Children's trail. The girls thought it was also great fun.

So Saturday was a good day of family educational and active fun. Hopefully I will get to go next.

Edited actual space facts as I keep getting the names mixed up. Oops!

Fun Friday

I felt a bit blogged out after Diabetes Blog Week. I have decided to try a few theme days to help me get things going again.

So here we are on "Fun Friday".

I visited a blog recently and saw this great case that their daughter had been given.

http://myabetic.com/lovebug.php

I am seriously tempted to buy one. It is such a cute testing kit.

What I've learned - Diabetes Blog Week

Topic: What have you learned from other blogs - either this week or since finding the D-OC?  What has your experience of blogging the DBlog Week topics with other participants been like?  What has finding the D-OC done for you?  If you'd like, you can even look ahead and tell us what you think the future holds!

This week has has reminded me how many great blogs there are out there. I have visited a few this week I haven't been to for a while and been blown away by how well others express themselves. I have visited many others for the first time and and am happy to have found them.

Finding the DOC has been a mental life saver for me. When I have needed to know others are going through the same things the DOC has been there and I appreciate more than I can express. The same, same feeling that I get as I read is a comfort, as well as wishing that others didn't have to go through it.

I know my DD will grow into a strong confident women because I can see those that have gone before and succeeded. Both because and despite of Diabetes.

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.

10 things I hate about you, Diabetes

So today let’s vent by listing ten things about diabetes that we hate.

1. You are so complicated.

2. You are so demanding.

3. You have robbed my daughter of “normal” now and in the future.

4. You mean that my DD’s BGL is not “normal” so have to make her tiny fingers bleed multiple times a day to check it. That isn’t OK.

5. Someone actually blamed by daughter being fat for her diabetes. She was diagnosed at 9 months and was under weight at the time. Argh.

6. You mean we have to carry around extra things. Meters, medication.

7. You mean I have to go to the hospital each week to get the glibenclamide (glyburide) drops that treat my DD’s rare form of diabetes.

8. You can be scary.

9. You mess with peoples’ heads.

10. No, my DD is not growing to grow out of it. Also argh.

Diabetes Bloopers - Diabetes blog week

Today’s topic for Diabetes Blog Week is Diabetes bloopers. Things can and will go wrong and sometimes they are funny.

When packing for our 7 day summer holiday I carefully calculated how many strips we would need and then added a few more for good measure. I added extra cartridges for the Multiclix finger pricker and some blood ketone strips just in case. I packed DD’s medication separately as the solution needs to be kept cold. We packed the car and headed on our way. We stopped for lunch on the other side of town just so we could actually get going and start our holiday. When we stopped for lunch I discovered that I had left the carefully prepared testing supplies at home. I was able to use the spare test kit that I had remembered for lunch but is only had a few strips and I really don’t like using the spare Easy touch pricker.
There was no way DH was going to turn around and go home for the testing kit so it was off to the nearest chemist. I went inside and found that it wasn’t a NDSS (National Diabetes Services Scheme- Australia subsidy scheme for Diabetes) pharmacy which meant I would have to pay full price for the strips and new Multiclix.

That was an expensive oops.

I could also tell you about the time DH and I both thought that the other had given our DD her insulin at breakfast, so by lunch time her BGL was HI but hey things happen to the best of us.

Admiring our differences - Diabetes Blog Week

I am a mum of D child. But I feel different in the PWD blogging world. Yes, I mum of a CWD (child with diabetes) but it is rare form. When my baby was diagnosed I felt very alone.

So I started out by reading blogs of other D-mums (& moms). But I didn't find any one in the same situation. Reading blogs usually leads to reading more blogs so...That led me to blogs of PWD. I have learnt so much. What it feels like to have a hypo or when you are HI. I can’t know that because I’m not one of you in the D world for myself. I found out ideas for hypo treatments, recipe ideas & supplies to make D life easier and brighter. I admire those that are coping with D by themselves, those that are there for their children, those who there for their D spouse or partner. So I have been admiring the differences. Nearly everyone in the DOC is in a different situation to me.

I have since found others who like us are dealing with a rare form of Diabetes. There are only just over a dozen D patients being treated orally for Neonatal Diabetes in Australia. It can make you feel quite on your own when you know there isn’t anybody else in your state (Queensland is pretty big) with the same condition. But it is great knowing that there are others in the DOC which get it because their child has the same rare diabetes and even though they are in the US we are connected. http://www.babieswithdiabetes.com/ We are both passionate about finding others who could benefit from this relatively new discovery. Our children were diagnosed young (very young) usually before 6 months of age, no autoimmune antibodies and low birth weight. They have a single DNA mutation which causes there body to not produce insulin.

I am still learning so much reading blogs and hopefully I can share a bit of our journey as well.

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)

Letter writing day - Diabetes Blog Week

Dear Doctors/Paediatricians,
I am angry. I am mad. I want to scream at you for not seeing that my daughter was sick. But as today’s topic for Diabetes blog week is to write a letter I will do that instead. The rage I feel thinking about what could have happened to my little girl if blood tests hadn’t finally been done can consume me sometimes. But God is gracious and He kept her in His hand. He protected her when even I couldn’t.
I have wanted to write to you for a while now to tell you of my disappointment with the quality of care my daughter received while your patient (understatement). She was a sick little girl when we came to you but you were dismissive of my concerns. She is my fourth daughter and I knew something wasn’t right. I knew it in my heart. But it to convince doctors like you with a feeling. She was so much smaller than my other girls. It just wasn’t right.
Yes she did start to put on a little bit of weight after she started on the Neocate formula as well as breast feeding. But the gains were smalls and each week as I checked her weight at the health clinic it went up a bit, down a bit and back up a little. Each kg took months and months. She would sweat when she fed like she had run a marathon. Her heart would races. I wondered if there was something wrong with her heart. No.
I told you her number of feeds and that she was weeing a lot. No red flags for diabetes there!! No, she looked to happy to be really ill. I would just have to accept she was going to be much smaller than my other children. You treated me like I was paranoid and only referred me when I insisted on some action.
She had to go through a gastroscopy because maybe she wasn’t digesting her food properly. When I think of putting my 7 months old daughter through that I weep. But I had to try and get some answers. Dr Gastro who said it wasn't diabetes, since when did you specialise in endocrinology? Argh.
I know that some of you wanted to help, you had concerns but you didn't know what to look for. I know you cared.
It makes me so angry to think of my little girl suffering for months and months as we waited for appointments, waited to see if the formula would make a difference, waited for tests. How much longer would she have survived without DKA and worse? When my GP finally rang with the test results and said go to the hospital right now I wasn’t shocked I was relieved we had an answer. One I had searched and fought for 6 long months. I am angry but mostly disappointed that a simple finger prick could have saved so much time and given her health sooner.

I will be posting for Diabetes Blog Week

I have joined up with others over at Bitter-Sweet. I hope it will be an interesting week in Blogdom. I'm looking forward to reading other DOC (Diabetes Online Community) blogs during the upcoming week. We can learn so much from each other.

The need for insulin.

Lately the have been lots of reasons that PWD (people with diabetes) need extra help. Flood, earthquakes and tornadoes have played havoc with peoples lives. Possessions have been taken away from them and their day to day life has been put on hold.
The thing is that PWD have special needs when it comes to food and their medication. They can't not eat and they can't miss their insulin.

When communications are down, power out and supplies low it make life for PWD. People with other disease have their own challenges as well but since DD#4 Miss F was diagnosed any natural disaster makes me think of those PWD that are in the midst of it all.

The most recent of these are the tornadoes in the US.  I just read this article Alabama PWDs Need Your Help over at Six until Me which outlines the needs of PWD and how other can help. Send supplies if you are able to the Huntsville JDRF office.

An organisation the helps out PWD that don't have access to diabetes supplies in normal circumstances as well as during disasters is Insulin for Life Australia and the Insulin for Life USA.

Family Fun - Camping

Our family took the opportunity this past weekend to go camping at Lake Somerset. The Holiday park had a children's movie on Saturday and Sunday nights. This helped to occupy the evenings while we were there.

The children had a great time. There was mini golf (a free game per day) and a play ground. Great family fun. We made a quick drive to Kilcoy on Sunday for a few extra supplies and DD#4 had a nap in the car. No napping in the tents for our Miss F.

One extra challenge on camping with Miss F is her medication needs to be refrigerated. We decided to take her back-up tablets instead. This meant grinding up the tablets and slipping them into something tasty. She loves fruit puree so she didn't mind at all. But BGL testing and medication adds an extra things to do at each meal time and feeding four DD's while camping can be challenging enough. DD#3 was not so good at using her lamp as a table and wore a bit more of her food than usual.

Miss F's BGLs weren't as good as the usually are at home but I guess cutting up and then grinding them it as exact as using the solution at home.

Over all it was a good experience and we look forward to spring to head off camping again.