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Posted 21 December 2011 - 10:18 AM
Well things are much better this week. Sorry I didn't update here about our move, it was on FB so I forgot about it after that We know where we are going, a house and school is sorted, now we just need to do the packing It was an emotional last day at school, but the children are excited now.
This week is going to be busy with some packing, lots of prep for beach mission (which is straight after Christmas), celebrating birthdays and trying not to go mad with 5 children in the house all the time.
Posted 22 December 2011 - 09:06 PM
~Type 1 Diabetes Support Group~
32yo Adelaide mum to 4 kids....aged 14, 9, 5 and 2. 14yo Alysha was diagnosed on 2-1-05 at age 9.5. Very scary start to it all, I'm sure I nearly lost her as the hospital said it was 'just gastro' and were going to discharge her without tests (while in severe DKA). Previously on injections and pens, but now on the Cozmo Pump. She's finally starting to accept it all, but it's tough being a teenage diabetic.
Mum to Hudson (5 1/2 years) and Archer (22 months). Both boys have T1 diabetes. Hudson diagnosed at age 4, on Novorapid & Protaphane, & Archer at 10 months on Animas insulin pump.
Me 44yr DH Geoff48yr ,DD cassie 6yrs (26/02/04) dx exactly 21/2yrs, went in with DKA. We live in queanbeyan NSW near ACT , Canberra is our hospital and clinic. Cassie has a Medtronic pump and has been pumpng for almost 4yrs, before that 6-8 injections a day. Cassie is my little miracle as she come after 12 miscarriges ( so she a bit of a princess). cassie is a JDRF Youth Ambassador, and is in 2nd grade at school this year. .
My name is Julie (36), DH (35), DS (4.5) and DD (21 months). My DS, Kai, was diagnosed with Type 1 on 29th Jan 2011. We live in Kalgoorlie WA and our DS was treated at Princess Margaret Hospital for Children in Perth. We continue to be in touch with the educators and Dr's everyday to help sort out Kai's dosages. He is on Novorapid and Protophane twice daily. This diagnosis came totally out of the blue, no family history but apparently I caught it early and Kai was quite healthy when admitted. Kai started Kindy this year and we are in the process of incorporating school into the equation.
Location - Canberra. Happily married mother to 3 beautiful daughters aged 8,9 & 10. Our middle daughter Lyndsey was diagnosed with T1D at age 7 on 23 April 2007 (not a date we will forget!). She is now on a Cosmo pump which is blessing when managing her other medical issues.
tassiemumto2 (Kate) and tassiedadto2 (David)
Mum (and Dad) to Benjamin (4 1/2Years Old) and Joshua (7yrs). Benjamin was diagnosed 28/04/2008, 10 days after his 1st birthday. Ben has been on pump therapy since Oct 2010, the Accuchek Combo, but was previously on daily injections of Novorapid and Levemir. We live in Tassie, have 2 cats and a very supportive extended family and fantastic, supportive child care centre.
Mum to Kyle 10 years old. Kyle was diagnosed at 2.5years old. Kyle has been on a Medtronic Pump since August 6th. In Gippsland Victoria.
Mum to 5 children aged 11, 9, 7, 4 and 2. Adara is 7 and was diagnosed on 16/11/06 aged 2 years 8 months. Using an Animas pump and very stable. We live in Sydney and Adara is in her third year of school.
mum to Ryan (DS1, 7 years, diagnosed age 3 1/2, pumping with Medtronic), DS2 - 5, DS3 - 3. We are in Vic.
I have a son named Adam who is 3 years and 6 months old. Adam was diagnosed at 2 years and 1 month old, admitted to Westmead Childrens Hospital with a BGL of 23.He's on a medtronic insulin pump using novorapid. Also we're from the Western Suburbs of Sydney.
I am Louise (42 - married), live in Brisbane, my littlest chicken Trinity was diagnosed at 20 months. She turned 3 on 21 December, and has a 6 year old sister and a 19 year old brother. We are on Lantus and Novo rapid.
Neonatal diabetes (Kat)
I am Kat and mum to Sarah who was born on the 28/11/08 she was born at 31 weeks weighing 735 grams and has been insulin dependent since birth. She was Diagnosed with Neonatal Diabetes at 12 hours old and was later Discovered that she had Pancreatic Agenesis (She has no Pancreas) We started on a Animas Pump in Feb 09 when she was about 1800 grams. She is now 2 and weighs 9.6 kgs. :-)
Brisbane. Mum to 2. DS - 9yrs, diagnosed 29-04-09. Currently using Novorapid and Protaphane via pens
Mum to 2 great kids, DS 5 was diagnosed on the 15*7*09 a day before my birthday sad.gif DD 11*5*07 she is my princess. Brodee was healthy happy and like a switch was flicked began drinking glass after glass of water, I knew in my heart exactly what it was but gave it a week before taking him to the GP who diagnosed and sent us straight to Melbourne, Currently he is on 1 needle in the morning 5 units of Levemir and 1 needle at night 1 unit of Novorapid. We are in East Gippsland, his first HBA1C was 8.7 and his BG was 39.
DD diagnosed at 11mths Dec 2009 when still breastfeeding. B/fed until she was nearly 2. DKA with 3 Dr have no idea what was wrong in emergency and eventual emergency transfer from Sunshine Coast to Childrens hosp in Brisbane. 2 nights in ICU and 6 in general ward. We have always used pens, with novarapid and levemer - 5 needles a day. One of each with breakfast and one of each with dinner and novarapid at lunch. I have created a very complex scale for the novarapid that varies on meal size and BGL. DD is now 2. I also have DS who is 5 in march.
mum to Dominic (2.5yo) was diagnosed with T1D on 5th January 2009. He turned 17 months old 2 days later. In March 2009 we started pump therapy with the Medtronic Paradigm pump. I now have DS2 (Alessio), who is 5 weeks old.
Mum to Kai, 4, pumping with medtronic - currently on a loan pump but are waiting on a new medtronic pump ( a blue one!! ) in the next couple of weeks.
I also have one other son Jett - who is two and my daughter Rubi who is almost 6 months old. Living in melb south east
Mumma Shazam (Bek)
mum to three great kids T (9), A (5) and D (22months). In October last year my daughter A was diagnosed with type one diabetes. I am a full time uni student studing Nursing, we live in Brisbane. A is on Novarapid and Protapane.
DD (6)DD born with Talipes of foot but treated with Ponseti method and foot looks fab.
She was diagnosed with T1 Diabetes on 23rd December 2010.
Spent Christmas day & week in hospital.
DD takes Novorapid and Protaphane before brekkie and before dinner.
Had very high results of Coeliacs disease from blood test at Christmas.
Coeliacs Disease was confirmed on 14/02/11 after endoscopy/biopsy. Gluten Free for life now.
Elizabeth was diagnosed on the 27th August 2008 with Type 1 Diabetes, a week before her 3rd birthday. It became our challenge not to be at RCH for her birthday, we made it. Currently Elizabeth is having 2 injections a day, one before breakfast and the other before dinner. She is on Levemir and Novorapid. Elizabeth has just started school this year and we were sorry to say goodbye to her child care center as they had been great from the time of her dx to when she finished there last year. Elizabeth lives with her father, mother, baby sister (10 months) and Fiesty the Cat in Melbourne.
Mum to Blake (5 yrs), dx in February 2011, living in Gippsland Vic.
Let me know any changes that need to be made.
Posted 02 January 2012 - 10:51 PM
Merry Christmas and a Happy New Year to Everyone,
Good luck Mandy, I hope that all goes well for you and your family with everything that is going on in your world
We have had a roller coaster of a last month, Elizabeth was on CGM for several days that nobody thought was working and it turned out is did record some information. It didn't show us any patterns except that she always goes down overnight. Then we finished school on Wed 16th and then in the early hours of the Fri morning she was vomiting, in hypo and several hours later ketones developed. We were lucky that we managed to keep her at home although it was a close call on several occasions. We were in constant contact with her DE for the duration of a week in regards to doses. Elizabeth still isn't quiet 100% but I am hoping that by the time school starts she will be. She still isn't on her full insulin doses yet and still at times says she feels sick.
How is Everyone going? I hadn't been on here for a while so hadn't realised that we are up to a new thread.
Hope Everyone is well
Posted 06 January 2012 - 12:45 PM
Hi I hope everyone had a lovely Christmas and new year. I haven't been here for a while but since Andrew is having an extra long nap I thought Id hang around EB for a while.
We've had an exhausting few days. 3 days of constant hypos. Put him on a 70% temp basal and the DE and endo changed insulin sensitivity and basal rates and things are looking good. Andrew has also just discovered that he can rip his cannulas out which is proving a little trying at the moment.
Im wondering if anyone has any tips/suggestions for me. Andrew is starting daycare in 2 weeks (only 1 day a week), but I am just imagining all the illnesses and viruses he is going to pick up while he's there. Does anyone have any tips on how I can minimize this happening? Or am I dreaming?
We are having our first holiday since Andrew's been diagnosed, I feel like a kid Im so excited about it
Hope everyone is healthy and happy
Posted 09 January 2012 - 01:24 PM
Have a great holiday Batfink
Tips for avoiding bugs, none unfortunately. Elizabeth picks up everything that generally goes around and did when she was in child care. For us everything is manageable except gastro as it tends to come with ketones and hypos. I have found that as Elizabeth has become older she doesn't come down with as much and has actually managed to avoid some of the bugs that have caught up with other children in the class. It is a case of hit and miss I think. I have asked this year that the class teacher let us know if gastro is in the room so that we are forewarned to a point, not that we can prevent it but I can make sure I have extra supplies before Elizabeth comes down as she is normally one of the last as a rule. I have also become more cautious with colds and such and if it seems to last more than 48 hours then I will make an appointment with our gp, generally takes 1-2 days before I can get in unless it is an emergency, and get him to check her over, hopefully before she really comes down with the bug. Sometimes he will medicate and other times let things run it's course but I feel better having her checked and he is understanding about the T1D. I am not sure about vitamins, Elizabeth likes taking a vit c every day but sometimes I wonder how useful it actually is.
Posted 09 January 2012 - 11:02 PM
hi just wanted to introduce myself my names nat we have 4 children dd 8, ds 7, dd 3, dd 20mths we live in south west victoria.
our 3 year old was diagnosed 13th feb 2011 at age 2 years she was hostpitalized with dka and was very unwell currently on injections 2 a day levemir night/morning novo rapid night and actrapid morning hoping to start pumping this year sometime.
look foward to chatting to you all
Posted 13 January 2012 - 09:46 PM
Hello and welcome caplaylolmay0212, I hope that you find the support here that I have, these are a great group of parents, although many are on holiday at the moment so sorry for the late response to your post. Nowdays we are more often than not on FB so feel free to join us there as well. Some of us do pop in here regularly as well as not everyone chooses to be on FB and it adds a different perspective to the conversation. Our FB group is EB Facbook Type 1 Diabetes Parents Support Group, I will contact one of the admins to let you in if you choose to join us.
I have a 6 yo DD who was a week shy of her 3rd birthday at dx, I also have a 20 month old DD. We are on the same insulin as you with novo and levemir, we have never used actrapid. I am also in Vic although it is South East Melb now but have family in South West Vic, it is very lovely down that way.
Looking forward to chatting with you.
Posted 18 January 2012 - 09:45 PM
I hate heat waves and T1D, the numbers go all over the place, stranger than normal. Sorry just wanted to say that.
Hope everyone is well
Posted 27 January 2012 - 08:15 PM
Yep Feistycat heat waves are the worst! It's cooled down a little here (still in the 30s though). Thanks for the tips about preschool.
Hi caplaylolmay0212 welcome The facebook groups that feistycat were talking about are well worth the visit, theres some great support and advice over there (and in here too!) Me, Im great for offering sympathy but wont have much advice as we are still fairly new to it all.
UPDATE ON US:
We have finally found a new GP who seems lovely. He's moved to the town just recently and is great at fitting Andrew in at the last minute (and doesnt make me feel like a crazy paranoid mother like the other one did!). We had a follow up appointment today for Andrew's cannula infection, all is looking good. Its healing nicely and numbers are coming back down to normal. It also turns out that Andrew is, in fact, Lactose intolerant.
We have our next clinic appointment on Feb 8th. I think I will ask the DE about testing for gluten intolerance as we are still having several diet issues and he is having a few of the symptoms. (Has anyone else's LO been diagnosed? The GP wanted me to speak to the specialists about it all as he said it's hard to diagnose since Andrew is so young. Im praying that he doesn't as it's hard enough as it is to get him to eat anything!
Hope everyones numbers are going well and the stress of back to school isn't getting to you too much xo
Posted 01 February 2012 - 09:27 AM
Firstly welcome Nat, sorry to hear about your son. My son was diagnosed at 2.5 years old and it was very hard on us. He is 10 years old now and all as I can say is what a strong confident young man he has turned out to be. Please feel free to ask these ladies any questions you like no matter how silly they may seem.
Update on us, Kyle's been on his pump for over 18 months are we/he are loving it! He starts school next Monday, have a meeting with his teacher today as its the first time his in a class with BOYS in a composite that dont know about his diabetes and some of these grade 6 boys are very very naughty! We are a bit worried as to how they will react to Kyle. His teacher last year said we should get the DE in to do a talk but we dont know if that will make the matters worse. What do people think?
Posted 01 February 2012 - 12:47 PM
Mel, Maybe you could get the teacher to play the Professor Bumblebee DVD?? (Have you seen that? It could be a useful tool to help the kids understand about type 1 diabetes).
Hi Nat! Welcome to our little group. Some of us use Facebook and you would be welcome to join us there at EB Type 1 Diabetes Parents .
Posted 02 February 2012 - 02:05 PM
Hi everyone, I have joined the Facebook group but thought I'd say hi here too. I'm very new to this forum business, still trying to translate all the acronyms to work out what you're all saying! :-)
I'm Georgina, happily married to my T1D husband, Conrad. We have two healthy boys aged 6 and 3, and our beautiful baby girl, Tara, who was diagnosed with neonatal monogenic diabetes aged 7 weeks (that was 10 long weeks ago). Neonatal diabetes is not the same as T1 - it is caused by a genetic fault relating to the production of insulin within the cells of the pancreas, rather than the destruction of the beta cells by the person's immune system. We are awaiting the results of genetic testing which will tell us which mutation Tara has, and if it is the same as her daddy's, which would mean a revised diagnosis for him after 35 years (he was 3.5 years when diagnosed), but no difference in treatment - they are both insulin-dependent. There is a tiny chance that she has the variation of neonatal diabetes which is responsive to oral medication, but our doctors think it's unlikely. There is also a chance that it might be transient rather than permanent, but again, the doctors seem to think that she will have diabetes for life.
Tara was admitted to hospital with severe DKA, after I took her to emergency when she wouldn't stop vomiting. We spent two nights in ICU (scary stuff) and another 10 nights on the ward before coming home. She was put on a pump early on, as she requires such minute doses of insulin that it was impossible to draw them up in a syringe. Massive learning curve for us and for the diabetes team, as they've had to figure out the carbs in breastmilk and how to make a pump work in a practical sense on a tiny baby.
I feel like I'm at an advantage in one sense, because I've been with hubby for 17 years and am pretty familiar with all things diabetes. But it's a whole different story in a baby, especially when I was still sleep-deprived with a newborn and adjusting to having three kids. To spend two weeks in hospital not sleeping, then to come home and not sleep because we had no nursing back-up like we did in hospital.....it's been incredibly draining and exhausting and stressful. But I wouldn't swap her for the world!
Anyway, nice to meet you all and I look forward to learning lots of things about what to do with diabetic toddlers and children - I can't even imagine how I'm going to manage when Tara starts solids at the moment!
Posted 03 February 2012 - 08:15 PM
I hope you don't mind me popping in with some questions. I posted this earlier today in WDYT (more traffic) and have now been to the GP.
My 4 yo DD started showing odd symptoms yesterday. It started with complaints of extreme thirst when we were out. Took her home and she drank heaps and was shaking. She's still drinking a fair bit and increased toilet trips.
Today I went into Uni and took DD. Same thing happened - thirst, pale, not right. Went straight to MIL's house to get her a drink, when I noticed her shaking. MIL gave her a couple of biscuits. I then asked MIL if this sounded like low blood sugar level symptoms (MIL is a diabetic) and she wished she didn't give her the biscuits and checked her BSL - 4.9. MIL gave me her Blood glucose tester thing and I checked her again 2.5 hours after lunch and her BSL were 11.9. Still drinking heaps etc. and out of control behaviour wise like normal. Waiting on formal diagnosis of ADHD.
I went to the GP. She drank 2 cups of water waiting and 2 toilet trips. He's concerned it may be Type 1 diabetes, although could be something else, obviously.
She's getting a blood test on Monday and we go from there. She's getting FBE, U&E's, TFT's, TBS and Hba1c.
Do you think we have anything to worry about? Honestly?
Posted 06 February 2012 - 12:08 AM
Hi Georgina, sorry to hear about your little one, that must have been an incredibly hard time for you. My little boy Andrew is 19 months, diagnosed with T1d at 13 months. I understand the nightmare of carb counting breastmilk (isn't that an experience!) but was lucky that Andrew was a pretty good food eater too.
Upsydaisy I hope the results come back normal for you, I PMed you the other day
So here's the reason I dropped in - needed to vent as we are having a shocking night.
930 - BGL 22.9 Ketones 0.4 (correction)
1030 - BGL 23.9 Ketones 0.6 (site change and correction)
1130 - BGL 26.1 Ketones 0.8 (site change and injection)
1230 - BGL 26.1 Ketones 1.3 (Injection)
Done with new insulin each time
Am about to go check again, hoping it's come down otherwise it may be time to ring the endo. HATE HATE HATE diabetes
Posted 06 February 2012 - 10:20 AM
Hi Georgina, welcome to our group. I am sorry to hear what you have been through.
Upsydaisy, I really hope that your DD is in the clear. I am sorry but my personal response is something isn't right and I would insist that the GP does a blood glucose pin prick. If your daughter seems to get worse please consider, if possible going straight to the emergency department of your local hospital or children's hospital.
Please consider joining us at our FB site EB Facebook Site
Batfink vent away, that is one of the good things of this group, we all understand and can relate to numbers like that. I hope that Andrew settles down for you soon. Great news about finding a new GP, your last one was a bit of an idiot, sorry for the opinion but after what he did to you at the time of dx, you don't deserve that.
Sorry I haven't been around for a while, I have been dealing with some issues here. I have made the decision to return to work full time. My maternity leave finishes next month and part of me is ready to return to work after 2 years at home with both girls but part of me is ready to stay home for a while. This has been a hard decision to come to. DH was away for 2 weeks due to the JDRF bike ride one weekend and then less than 2 days later he was sent off to South Africa for work for the following 10 days. During that time DD came down with gastro and we managed to stay at home although it was a close call between home and hosp. On top of it we have had the whole return to the school year and getting ready. We met with DD's teacher last year several times and she had done the DA Vic seminar for teachers but I am still not comfortable with her and DD, not sure what to do about that. We have this teacher for the next 8 years so I have to find some resolution on this.
Hope everyone else is well.
Posted 07 February 2012 - 09:03 PM
Thanks so much for both your help and advice
I know you both have read about the results in my other thread. I am sorry to jump on in here. I just wasn't sure what to think and am still not sure, as I felt her fasting level was a little bit low.
We see her pead. in 2 weeks, and I arranged for her BT results to be sent to him too. I know he'd call if there was anything to be worried about - even though he didn't order the tests.
Posted 17 February 2012 - 01:11 PM
Hi everyone, I felt a bit like I dropped off the planet with the move, it has taken forever to get internet access again.
Struggling a bit here with Adara at school, she loves her teacher and has made friends, but come home sick twice when she wasn't actually sick. Really don't want emotional dramas with her right now! I'll catch up some more later.
Posted 26 February 2012 - 09:52 PM
How much does it cost to pay for all expenses for diabetes on a monthly basis?
My teenager has just been diagonesed today with type 1. We dont get any centrelink payment for the kids.
How much am i looking at per month on expenses?
Posted 27 February 2012 - 06:51 AM
How old is your teenager? 15years and younger in Australia get a Carers allowance of around $110 a fortnight, plus a Healthcare card.
Once you have let us know this we can point you in the right direction.
Also there are a few Facebook Support Pages if you are interested in joining too.
Posted 06 March 2012 - 07:52 PM
, sorry I dropped off for a long time , I will get into it one day , upshot was we were told that they didn't know how they could keep Cass alive out of the hospital environment if she continued with her insulin resistance. But what ever happened unhappened, they feel now that it could have been insulin pockets under the skin.
Were doing well at the moment , A1c could be better , sleep could be MORE , but all in all can't complain.
how is everyone else doing , ??
Posted 16 March 2012 - 12:27 PM
So glad to have found you all! My beautiful little boy was diagnosed with T1 May 2011, @ 14 months, like so many people here no family history and it was a total shock.
I still struggle from time to time with it all. Michael is doing really well and has totally adapted to his new routine.. We are on Levemir and Novorapid morning and night and Actrapid before lunch.. So far that has been working..
Im pregnant with our second baby due in July and dont know how i am going to take care of Michael, his diabetes and a new baby!
How did mums find day care for their T1's?? We have just had a couple of half days this week (2 hours really) he cried the whole time today! I think it will be so good for him but his d adds another tricky dimension to things..I will have to give him his injection at lunch once he starts staying the whole day?
Anyway look forward to getting to know you all
Posted 22 March 2012 - 08:50 AM
I was wondering if you could help me out with a few questions about T1 diabetes.
For at least 6 months DD1(5) has been complaining about stomach aches. She hates wearing pants or even underwear that goes over her belly even if they are not tight at all. About 2 months ago she started wetting the bed at night maybe twice a week and before she was night TTed for quite a while without any accidents for ages. And more recently (last 2 weeks) she is now going to the toilet at least every 20 min. I took her to the shops yesterday and we had 3 toilet stops in about an hour.
I spoke to her teacher this morning just to let her know she might need to go during class time and she suggested getting her checked for diabetes. So I wanted to ask if these symptoms sound like she is at risk?
I actually thought of having my other DD (2) tested because she has been drinking like crazy.
I had gestational diabetes with DD1 & DS but not with DD2 so I guess that puts my kids more at risk.
I was wondering if I could try and do an "at home" test today & tomorrow. I still have testing strips etc left and could do a check in the morning before eating and then maybe after a high carb meal.
I'm guessing a blood test is the only way to diagnose it, right? I feel so bad about making them do blood tests so young
Edited to add: I forgot to mention that we did take DD1 to the GP to have urine checked for bladder infection/urinary tract infection and he checked her stomach but no results.
Edited by biene_maja, 22 March 2012 - 08:57 AM.
Posted 22 March 2012 - 09:10 AM
@jules83 Our DS's first kindy was a disaster.
We moved him and the new kindy with no experience with Diabetes was more than happy to give him his lunch time injections. DS started prep this year and still goes for OSHC at the kindy.
When he started on the pump it was like starting from scratch and again they went above and beyond.
Both DH and I work full time, and without the support of the kindy Im not sure how we would have coped. They have gone above and beyond so many many times. I think the fact that they care more about my DS than they do about the extra work it creates helps loads.
Posted 22 March 2012 - 12:47 PM
Have you got a tester to check her sugar levels now? Is she drinking a lot too?
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