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Hi I'm Belinda
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Welcome to our first research blog on the subject of diabetic children in America. The purpose of this blog is to help us at The Patients’ Voice understand the needs of parents of children with diabetes who are resident in the United States of America.
We are also looking for parents of children with diabetes and diabetic adults to take part in a set of surveys over the course of December 2007. If you would like to participate, either join our research community by clicking on the purple button on the right hand side of the screen which says “Join The Patients’ Voice, or just send me an email to belinda.shale@healthcarelandscape.com
Typically you will receive $20 dollars for participating in a twenty minute interview.
Going back to the blog we are very interested in understanding the story of your experiences with your child’s diabetes. In particular we would like to focus on a number of questions. That being said any part of your story is of interest to us so please feel free to share.
• Tell us the story of your child’s diabetes diagnosis?
• How did you feel when your child was diagnosed with diabetes? Did you feel guilty and frightened that your child was diagnosed with an incurable condition?
• How did you gain confidence in the management of the condition (especially in the testing of blood sugar levels and the giving of insulin?)
• What were the difficulties you may have experienced when dealing with diabetes insurance companies, Health Maintenance Organizations (HMO) and pharmacies?
• What advice would you give to other parents of children with diabetes?
Thanks very much in advance for your help. Why not check back on the blog to see what others have said and perhaps contribute further thoughts.
As with all our market research projects, of which this ResBlog is one example, the responses of people who participate are anonymous. This is in line with market research codes of conduct. To participate all you need to do is scroll down to the comments area, type a nickname of your choice and then put your comments into the box.
I look forward to reading your comments and, of course, thank you very much for your input. Finally can I ask you to bear in mind when you blog that your comments will not just be read by other bloggers and The Patients’ Voice team.
Remember if you have not already done so why not join The Patients’ Voice
Best wishes
Belinda
Belinda | 03/12/2007 11:51:00
Welcome and thanks for dropping into the blog
I look forward to reading your comments
G.Stutz | 03/12/2007 14:04:00
> • What advice would you give to other parents
> of children with diabetes?
I would advise them to stop eating junkfood and start a healthy diet with enough chromium, zinc and manganese, so the kids won't get adult-onset (sic!) diabetes in the first place!
Brian G | 03/12/2007 21:23:00
I was diagnosed with diabetes well after childhood but for various reasons I believe I in fact had it since my teens or even earlier. I believe it was caused by my mother suffering from severe anxiety and depression when she was pregnant with me.
hannah | 05/12/2007 20:22:00
i developed type 1 diabetes at the age of 10. the doctors and experts all think i developed it because i had glandarfever at the age of 4 and this messed with my immune system.
i was diagnosed as i was rushed into hospital in a coma and my blood sugars were 68.4 (UK).
my parents dealt with it very well and never made me feel it was a death sentence and i will forever be grateful to them for this.
recently (im 21 now) my mum told me that every day when she came home from work she cried with the stress of my diabetes. she also had to inject me for a year and i point blank refused to do blood tests and had to test my urine. unfortunatly, she felt very guilty as i was put in a coma n she felt she should have noticed earlier that i was drinkin alot but i have always drank alot.
i know im the one with diabetes but i hope this is of help :)
Scott | 07/12/2007 13:23:00
I would advise them to get very used to explaining the difference between type 1 and type 2 diabetes, because in spite of the similar name, they ARE NOT the same disease. According to a study done by Medtronic Minimed which was conducted by Harris Interactive, 80% of the American public cannot distinguish between type 1 and type 2 diabetes. (For the record, type 1 has nothing to do with eating junk food or lack of exercise, it is an autoimmune disease which cannot be prevented, and shares its etiology with 80+ other autoimmune diseases, including MS, Lupus, Hashimoto's, and many other diseases which are never blamed on the patient or their parents).
Above all else, however, it is important not to make value judgements about blood glucose numbers. It is only a number, a number which provides information on what needs to be done next (e.g. do you need more insulin, or do you need to eat something right away?), thats all -- nothing else. It can be very tempting to blame every ailment or behavior issue on your child's condition, but the clinical data suggests that is pretty unlikely. If your child misbehaves, there's a good chance its because they are a child, not because their blood glucose levels are out-of-wack. Finally, note that treatment is not scientific. Even if you follow all the rules, the numbers may not respond as predicted. This is because insulin replacement is very imperfect, you're being asked to replace a hormone that is normally secreted automatically in a physiological manner, and at present, no pump or expensive technology can yet accomplish this, so try not to get too stressed out about it, and let your child live a reasonably normal life.
Sonja | 04/01/2008 18:45:00
Dear All
We are south pacific, Maori from NZ. My daughter was diagnosed as high risk type2 in 2002, she was 9 then, while we were having a routine check up, from there we then met with a pediatrian, edocrinologist, and a nutritionist (not a diabetes educator or dietitian), we lived in australia. The encouragement the professionals gave me was that we can manage this with a good healthy eating plan and exercise, low dose of metformin. I said fine lets do that. I still follow that same formula today without the metformin now, why no metformin? because it didn't make any dramatic difference than the meal plan and exercise. is my daughter able to manage this on her own yet "No" her monthly meal plan is on the fridge along, we plan this together, with her 3 days of gym with personal trainer accessments every month monitoring her weight and growth patterns. Dr's visits and check-up every 6 months. I feel for her because she just wants to be an ordinary kid enjoying the things that other kids can eat. Living here in America has made me more aware of the my daughters life style and eating habits, as I see the rise in juvenile obesity and diabetes. I am happy to support you, this condition is a huge challenge for everyone.
regards Sonja
Be Positive! | 06/01/2008 21:24:00
Tell us the story of your child’s diabetes diagnosis?
One week before my daughter's 7th birthday we took her to the A&E at 3am as she had pains in her side and looked dreadful. She had looked tired for 2 weeks, was drinking alot, but we lived in the tropics. Her teacher had reported nothing abnormal about behaviour at school. On arrival at A&E she was admitted to the ICU with diabetic ketoacidosis. She was very sick and stayed in the ICU for 3 days. There is no diabetes in our families and my daughter has always been healthy and has always eaten very healthily.
• How did you feel when your child was diagnosed with diabetes? Did you feel guilty and frightened that your child was diagnosed with an incurable condition?
Totally shocked and dazed! Very tearful and confused, like our lives were over and very, very sad for my daughter. Why her? Freaked out that she would need insulin to stay alive! Freaked out that diabetes can lead to all sorts of horrific life limiting complications if blood sugars aren't controlled. Very ignorant about diabetes - my husband thought insulin still came from pigs (and we are educated people! :-) )
• How did you gain confidence in the management of the condition (especially in the testing of blood sugar levels and the giving of insulin?)
From a FANTASTIC diabetes team comprising: dietician, endocrinologist and diabetic care nurses. Initially I was in e-mail and sms contact with the nurses daily. They were my rock and taught me that there was light at the end of the dark tunnel... and I saw that they were right.
• What were the difficulties you may have experienced when dealing with insurance companies, Health Maintenance Organizations (HMO) and pharmacies?
None - not US resident. Had expat healthcare policy which covered everything. Now, resident in Europe where all care is covered by monthly social security payments.
• What advice would you give to other parents of children with diabetes?
DO NOT balme yourself - listen to the scientists - it's not your fault.
Read everything you can about type 1 diabetes and the Glycemic Index.
Weigh food to get a more accurate carb content to match to short acting insulin.
Follow a low GI diet, but allow a resonable amount of cakes, sweets etc. as treats, but not as part of a regular meal. Consume with a glass of milk to reduce the GI. A good HbA1c IS attainable this way and I believe that it's important that my daughter's childhood memories AREN'T that she couldn't have birthday cake, cookies etc. Buy good quality treats. Good quality cookies and ice-cream seem to have less carb when I check the labels.
Don't allow grazing. Eat 4 or 5 times a day and match short acting insulin to the carbs consumed in each meal ( 1 injection per meal). This way the child doesn't have to eat a strict number of carbs at a pre-determined time each day and miss out on eating at birthday parties etc. Get the whole family eating the same things, together at the dining table. Try and keep the number of carbs eaten daily consistent as i've found that long acting insulin requires this to give adequate coverage (i.e to prevent blood sugars climbing between meals/at night)/
Educate your child. Your child needs to be able to look out for themself and not always rely on teachers etc. to do so (how ever well meaning such people are).
Talk about diabetes to your child and anyone else interested. Ensure that people don't think your child is sick, has a disease - especially other children. Keep re-iterating that your child is a regular kid who can do regular things.
Explain to your child that insulin isn't medicine, but something that everyone needs and that people either have naturally or need from a syringe. Let them know there are many other kids with type 1 diabetes.
Believe that a child with diabetes can lead a regular, healthy life, because it's true. To my family diabetes is now an inconvenience, not the depressing, life changing diagnosis we originally felt it would be.
Don't get freaked out when blood sugar levels are sometimes high - pay more attention to the HBA1c and get this checked every 3 months. However, hard you try blood sugars will sometimes run high as explained so eloquently above - it's not an exact science indeed.
Heidi Matthews | 18/01/2008 05:37:00
Hi my son was diagnosed with type one diabetes 6 months ago he was 2 years and 2 months old my husband and i are finding it dificult to deal with reading your story helped us and i am now reading books on lo GI cooking and have changed our diet thankyou
Lisa Stratton | 05/02/2008 02:31:00
Tell us the story of your child’s diabetes diagnosis?My daughter was diagnosed when she was 3 years old. We notice that she was drinking and peeing a lot. She was just getting over a stomach virus so I didn't think anything of it at first, but while we were out running errands (we were out for about 1 1/2 hours) she had to go to the bathroom 4 times. I thought this was excessive and I called the pediatrician and got her in that afternoon. They diagnosed her with Type 1 diabetes then and sent us immediately to the ER at the local children's hospital. • How did you feel when your child was diagnosed with diabetes? Did you feel guilty and frightened that your child was diagnosed with an incurable condition?My husband and I were absolutely stunned. We didn't really know what to think. I didn't really feel guilty about her diagnosis, but I did feel guilty that it wasn't caught sooner when I learned more about her condition. • How did you gain confidence in the management of the condition (especially in the testing of blood sugar levels and the giving of insulin?)If it wasn't for the nurses and nutritionists at the children's hospital that we were at we would not have felt very secure. The first few days at home were still very scary. I think like anything the more you do it the more confident you become. I tried to ask questions as much a possible and I called our endocrine office often with questions whenever they came to mind.• What were the difficulties you may have experienced when dealing with insurance companies, Health Maintenance Organizations (HMO) and pharmacies?We actually haven't had too many problems with our insurance company. They have been very supportive. We have also been lucky enough to find a pharmacy that is really wonderful and they have gotten to know me and my children personally. This says a lot when you live in a larget metro areal. The only thing that I had a problem with was getting the correct insulin syringes. My daughter is very small and sometimes she needs only a half a unit. My pharmacy did not know that the syringes came in 1/2 unit markings and since my doctor did not specify that on my original perscription they had a hard time ordering them. It took them about a week to get them in for me. I haven't had a problem since then. They actually bend over backwards for me whenever I have a special request. • What advice would you give to other parents of children with diabetes?Talk to other parents of children with diabetes any way you can. It really does help you learn how to deal with it.
Childhood Diabetes in America.
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