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.
Showing posts with label glibenclamide. Show all posts
Showing posts with label glibenclamide. Show all posts
Monday, November 14, 2011
Monday, October 10, 2011
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.
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.
Thursday, July 14, 2011
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?
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?
Wednesday, June 22, 2011
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.
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.
Tuesday, June 7, 2011
Insulin for Life and more fridge space
Yesterday I finally posted off our extra insulin. I have kept 4 vials of Novorapid but the rest of the Novorapid, the Levemir and Protophane are now on the way to helping someone else.
I posted a while back about the need for insulin and other diabetes supplies both in developing countries and after disasters in first world countries. I'm glad that our surplus can help someone in need.
As I showed in the photos during Diabetes Blog Week we don't need all the supplies that we used to since DD#4 F transitioned to glibenclamide (glyburide). Sending the supplies to Insulin for Life Australia has been on my to do list since January. I finally get to cross it off the list. And I get some space back in my fridge and pantry (the diabetes supply shelf is less crowded now.) I also sent off some pens, needles, lancets and lancing devices that we don't use.
I posted a while back about the need for insulin and other diabetes supplies both in developing countries and after disasters in first world countries. I'm glad that our surplus can help someone in need.
Tuesday, May 31, 2011
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.
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, May 14, 2011
Saturday Snapshots - Diabetes Blog week
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.
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