Deedee86
@Deedee86
9 Years1,000+ Posts
Comments: 3 · Posts: 3225 · Topics: 93
Type 1 diabetes
Thanks for the input. I'm just really overwhelmed right now. He went back to school today. He says he feels fine but his numbers are still so high. I call his team every 24 hours so they can adjust his bolus ratios until we get it right. It's so scary though. He was 525 yesterday!
They tell me that there is no cure but I am stubborn and I can't accept that. I found a clinical trial that I'm trying to get him in. There is no guarantee that he won't be the placebo but I already have a call in.
They tell me that there is no cure but I am stubborn and I can't accept that. I found a clinical trial that I'm trying to get him in. There is no guarantee that he won't be the placebo but I already have a call in.
Posted by Astrology101His diagnosis is type 1. He is insulin dependent and must test 5-7 times per day in the beginning until they figure out the right dosage.Posted by TheTinManOMG.. No that response was for @DeeDee86Posted by Astrology101who, me?
Why don't you do a simple blood test for blood sugar?
One is fasting.. on empty stomach...
the other is called PP.. 2 hours after you have food.
You can do both or just the first one.... if you don't want to do too many tests.
I test my blood sugar 3 times per day. one in the morning before breakfast, after breakfast and after dinner.
my blood glucose level be already in the 200 range. by the end of the day it goes up to around 400 and something.
That's high isn't it? You should eat small meals through out the day. After 2 - 2 1/2 hours each.
And have veggies which are known to reduce your sugar, naturally. Avoid sugar and starchy food entirely.click to expand
Posted by tizianiBetter than me. I'm sure he's scared but he is pretending not to be.
How's he handling it now?
He does look and feel a million times better though.
Posted by TheTinMan
I started off with type 1 and I was just like your son. I lost a ton of weight, loss of appetite, dry mouth, dizzy spells, urinating a lot and yes sometimes in my pants. doctors gave me 5 shots of insulins. and my blood glucose still didn't go down to normal.
now I'm at type 2 and take oral. but now I may have to get back on needles again because my blood glucose has gone back out of control as of late. I was sick as a dog yesterday and vomiting all day because of it. and i done gained all my weight back now and that ain't good for diabetics to gain weight.
Type 1 can turn into type 2? I didn't realize that. It's all so new to me.
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
Posted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
https://clinicaltrials.gov/ct2/show/NCT02691247
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for me
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for me
Posted by Deedee86well now that is very interesting - yes, if they multiply the healthy cells they are creating an army to fight the battle - I hope it works for himPosted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
click to expand
I was thinking more along the lines of the medications they "try" on people and who knows what side effects there are
wow he needs you right now - try to enforce a lot organic fresh veggies to help his immune system and that army of cells as much as possible
Posted by tctaPosted by Deedee86well now that is very interesting - yes, if they multiply the healthy cells they are creating an army to fight the battle - I hope it works for himPosted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
I was thinking more along the lines of the medications they "try" on people and who knows what side effects there are
wow he needs you right now - try to enforce a lot organic fresh veggies to help his immune system and that army of cells as much as possible
click to expand
This is when all my fire comes through. I will turn over ever rock until I find something that helps.
I also read studies that show niacinide, a form of b3, can help type 1 diabetics go into remission. I will be starting that today. The worst that can happen is he gets extra vitamins.
Posted by Deedee86did you get him in ? I hope so - this is paramount and I will say prayers for you
https://clinicaltrials.gov/ct2/show/NCT02691247
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for me
my boyfriend has diabetes type 1 . he got it when he was 6 years old as his mother have it as well. he is a doctor and always have insulin with him everywhere he go. before eat he always put an insulin injection on his stomach. in the morning he take insulin on his ass as its insulin for a couple hours before he start his day and at night insulin again on his ass before he go to sleep so he didnt lost his blood sugar while sleeping. he go to the gym one hour everyday. he has somethinh on his arms that he used 24 hours to control his blood sugar. i'm sorry abt ur son. i know how is it to live with diabetes type 1 @Deedee86 . once we went to cinema for 1.5 hour and he didnt take any drinks or simetving sweet to the cinema when we are out from the cinema he looks scary... as his blood sugar got zero. he is worried to walk so i give him coke and chocklad and wait untill his blood sugar come up again.
Posted by AnteroThank you for tips. He's so high right now that I never imagined the lows. I will always make sure that he carries something
my boyfriend has diabetes type 1 . he got it when he was 6 years old as his mother have it as well. he is a doctor and always have insulin with him everywhere he go. before eat he always put an insulin injection on his stomach. in the morning he take insulin on his ass as its insulin for a couple hours before he start his day and at night insulin again on his ass before he go to sleep so he didnt lost his blood sugar while sleeping. he go to the gym one hour everyday. he has somethinh on his arms that he used 24 hours to control his blood sugar. i'm sorry abt ur son. i know how is it to live with diabetes type 1 @Deedee86 . once we went to cinema for 1.5 hour and he didnt take any drinks or simetving sweet to the cinema when we are out from the cinema he looks scary... as his blood sugar got zero. he is worried to walk so i give him coke and chocklad and wait untill his blood sugar come up again.
Posted by tctaI hope so. I just got off the phone with them. First step is the screening which We will schedule as soon as I read over and sign consent. That will be emailed to me today. I have details though. It's a 2 year study consisting of 12 visits.Posted by Deedee86did you get him in ? I hope so - this is paramount and I will say prayers for you
https://clinicaltrials.gov/ct2/show/NCT02691247
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for meclick to expand
Very limited negative reactions because it's his own cells. They told me it is not painful, just an iv. A couple visits are 4 hour fasts followed by a high protein milk product.
Posted by Deedee86sounds reasonablePosted by tctaI hope so. I just got off the phone with them. First step is the screening which We will schedule as soon as I read over and sign consent. That will be emailed to me today. I have details though. It's a 2 year study consisting of 12 visits.Posted by Deedee86did you get him in ? I hope so - this is paramount and I will say prayers for you
https://clinicaltrials.gov/ct2/show/NCT02691247
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for me
Very limited negative reactions because it's his own cells. They told me it is not painful, just an iv. A couple visits are 4 hour fasts followed by a high protein milk product.
click to expand
Posted by tctaPosted by Deedee86sounds reasonablePosted by tctaI hope so. I just got off the phone with them. First step is the screening which We will schedule as soon as I read over and sign consent. That will be emailed to me today. I have details though. It's a 2 year study consisting of 12 visits.Posted by Deedee86did you get him in ? I hope so - this is paramount and I will say prayers for you
https://clinicaltrials.gov/ct2/show/NCT02691247
http://cureresearch4type1diabetes.blogspot.com/2016/07/polyclonal-t-regs-start-phase-ii-trial.html?m=1
They are recruited participants at Yale and in Boston. They are both around a 5 hour drive for me
Very limited negative reactions because it's his own cells. They told me it is not painful, just an iv. A couple visits are 4 hour fasts followed by a high protein milk product.
click to expand
I'm optimistic
Posted by Deedee86Type 1 has no cure, type 2 can be corrected and regulated with diet , excersise and medication.
Thanks for the input. I'm just really overwhelmed right now. He went back to school today. He says he feels fine but his numbers are still so high. I call his team every 24 hours so they can adjust his bolus ratios until we get it right. It's so scary though. He was 525 yesterday!
They tell me that there is no cure but I am stubborn and I can't accept that. I found a clinical trial that I'm trying to get him in. There is no guarantee that he won't be the placebo but I already have a call in.
I'm type 2 and have it under control.
Posted by TheTinManPosted by justagirlso what if your blood glucose number was extremely high like mines was and stayed high for a long period of time before finally seeing a doctor, and now your blood glucose can be controlled? Is that still type 1?Posted by Deedee86Type 1 has no cure, type 2 can be corrected and regulated with diet , excersise and medication.
Thanks for the input. I'm just really overwhelmed right now. He went back to school today. He says he feels fine but his numbers are still so high. I call his team every 24 hours so they can adjust his bolus ratios until we get it right. It's so scary though. He was 525 yesterday!
They tell me that there is no cure but I am stubborn and I can't accept that. I found a clinical trial that I'm trying to get him in. There is no guarantee that he won't be the placebo but I already have a call in.
click to expand
I've been doing a lot of reading over the past few days and from what I understand is that type 1 is an autoimmune disease. You're body attacks itself and the cells are destroyed making you pancreas unable to produce insulin.
Type 2 can be controlled with diet an exercise. There are also pills that can be used to help type 2 where with type 1, injections are the only option.
I did make great progress today with this clinical study. They want to move fast because it must be started within 100 days of diagnosis. I faxed them back paperwork, they will get his records on Monday and are in the process of arranging transportation and accommodations. They do pay a small amount for each visit and I am having them pay my son directly. He has to go through all of this so he can use the extra $ $ $ for fun stuff for himself.
Posted by RindarooThey made adjustments to his carb ratio and today has been much better. 219 before breakfast, 238 before lunch and 168 before dinner. He insisted on going back to school today so I let him. The nurse kept an eye on him and he went to her before lunch to test and take insulin.
My dad was Type 1 - had it for almost 50 years. He went through the full range of the disease. 500-600 is really high!! Exercise or insulin will bring it down. My dad initially took shots & eventually had the pump. It was more controllable with the pump.
I'm surprised he's not still in the hospital & having them control it first b4 letting him live normal life. Also the extreme highs are where the problems come in, so you are much better on the low side or even in the 100-200 range. The lows are bad too. My dad used to go low in the middle of the night sometimes. You can go into diabetic coma if too low.
Not sure what you're looking for. It's serious business & very important to stay as close to 100 as possible.
Today, I let him go out for a few hours with his friends. I'm nervous, but I don't want to punish him. He feels ok and has been doing a good job at testing and giving himself insulin.
Posted by starwars
sorry to hear that, hope he feels better ?
my dad had diatebese from a young age, it sucks for sure but it can be controlled and live with
- watching what he eats and talking walks would help
- see a doctor and learn about the low-high blood sugar levels symptoms and what he can do about them
- regular tests
He has a pediatric diabetes team at the Joslin center. They are supposed to be the best.
Posted by Deedee86Posted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
click to expand
@tcta has a good point.
And FDA Fast-tracking isn't uncommon.
The biggest drawback imo is there is no evidence from the
long term effects/side effects of these drugs.
No one knows what will happen to these people, over time.
So sorry this is happening, though.
Posted by TheTinManI don't know. All I know is I have type 2 and it can be managedPosted by justagirlso what if your blood glucose number was extremely high like mines was and stayed high for a long period of time before finally seeing a doctor, and now your blood glucose can be controlled? Is that still type 1?Posted by Deedee86Type 1 has no cure, type 2 can be corrected and regulated with diet , excersise and medication.
Thanks for the input. I'm just really overwhelmed right now. He went back to school today. He says he feels fine but his numbers are still so high. I call his team every 24 hours so they can adjust his bolus ratios until we get it right. It's so scary though. He was 525 yesterday!
They tell me that there is no cure but I am stubborn and I can't accept that. I found a clinical trial that I'm trying to get him in. There is no guarantee that he won't be the placebo but I already have a call in.
click to expand
Posted by MontgomeryPosted by Deedee86Posted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
@tcta has a good point.
And FDA Fast-tracking isn't uncommon.
The biggest drawback imo is there is no evidence from the
long term effects/side effects of these drugs.
No one knows what will happen to these people, over time.
So sorry this is happening, though.
click to expand
I was hesitant too
But I have all of the information. This has been already tested on humans. This is phase 2. The will draw his blood and send it to a lab. They will extract the healthy cells, regenerate them and transfuse them back into his body. There is no drugs aside from acetaminophen. He is getting his own cells. Side effects from the first study were 4 out of 111 had headache, dizziness or stomach ache for a few minutes after the transfusion and a few complained of soreness at the iv site.
It's called T-Rex diabetes study. They emailed me a packet plus I found quite a few articles online from medical journals.
Research shows that taking raw apple cider vinegar in a glass of water before meals lowers glucose levels
Posted by MyStarsShine
Research shows that taking raw apple cider vinegar in a glass of water before meals lowers glucose levels
Thank you! I have some at the house and will definitely have him start using it. I read that b3 may help too.
Plus that clinical study.
I hope that we find something to send him in remission.
Posted by Deedee86http://www.apple-cider-vinegar-benefits.com/vinegar-and-diabetes.htmlPosted by MyStarsShine
Research shows that taking raw apple cider vinegar in a glass of water before meals lowers glucose levels
Thank you! I have some at the house and will definitely have him start using it. I read that b3 may help too.
Plus that clinical study.
I hope that we find something to send him in remission.
click to expand
Posted by Montgomerytotally - it's a catch 22 - you don't want to not have new and improved medicines on hand but on the other hand someone somewhere is an experiment. That has been how medicine is what it is today. That is why I lean toward alternative medicine which has been tried and true further back then we can even fathom.Posted by Deedee86Posted by tcta
so sorry and wow that is so young - does it run in the family - it doesn't sound like it or you wouldn't be so surprised and wondering what to do
you could try eastern medicine and diet but he does need to get stabilized first
watch out for the clinical trials - being a guinea pig is not always a good thing
No family history at all but it is an autoimmune disease and my ANA marker was positive.
Dr told me there has been an epidemic over the past few years and they aren't sure why.
The trial is in stage 3 and FDA fast tracked. It is already on the market for other things.
Its for people under 17 and within 100 days of diagnosis. They take some of your blood, separate the healthy cells and multiply them and then transplant your own cells back into your body. It's supposed to put type 1 into extended remission.
They want people soon after diagnosis because all of the cells aren't damaged yet.
@tcta has a good point.
And FDA Fast-tracking isn't uncommon.
The biggest drawback imo is there is no evidence from the
long term effects/side effects of these drugs.
No one knows what will happen to these people, over time.
So sorry this is happening, though.
click to expand
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What happens next?