I am desperate for my son.How are the advances, please?
08/21/2022 5:56 p.m.
This morning, like many others, I have woke up again because my 5 -year -old son has slept all night to 230 according to the sensor.The deferred puncture has not done anything tonight (others if .....).I wanted to write to you this morning but I haven't had strength.
My 5 -year -old son is going to have type 1 diabetes of 8 months ago and I have not yet overcome it yet.
I take pills for depression and do not finish doing well.I sink into the misery of thinking that your life can be diminished in terms of quality early, its social acceptance can be influenced by the fucking disease (the parents of their friends do not accept him to sleep in their homes, the birthday partiesThey are a pain and I don't have fun anymore, I feel it sometimes also worried and tells me that he does not want to be diabetic .... here I have to hide to cry because I can't ...)
Can any charitable soul update progress?
Every 5-10 days I put in Google "Cura Diabetes 1" or "Bioartificial Pancreas" and in search tools I put 1 month.
I see news and articles that talk about stem cell therapy, genetic therapy, encapsulated cell transplant ... it seems viable and feasible as they tell, and they say that the cure can arrive in 5 or 10 years ....
Only with this I am also crying and it is hard for me to go out and make normal life.At work sometimes I also have to hide to cry.
I do not understand very well at all these advances of mother and genetic cells that can give my life and my son.
Can anyone give me some hope about these new advances, please?
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
@Lowcarb, you remind me when I started with my 5 -year -old daughter, but it is important that your child does not see you cry or overwhelmed, they have to continue living as children, as calmly as possible. If you see that he wakes up high, he will need slower.I went up one in one unit, when I saw that I needed it, after two days of waking up high, or average on average.Sometimes we arranged it with half a unit.The truth is that for the slow we use syringe for many years. The advances will arrive, but you have a lot of time to wait for them, the healing of one day to another will not arrive, but the enough to maintain good glycosiladas and live without complications. Take care of yourself, and focus on the control, which does not have to be perfect to get glycosylated below 7 that will be kept safe from complications. After almost 30 years my daughter continues with analytics without alterations.And in less years a cure or a much safer and more efficient treatment will arrive. A hug and a lot of encouragement, that your child has a lifetime ahead to be happy.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free) Fiasp: 4- 4- 3 Toujeo: 20
Thank you very much @regina. The problem with my son's diabetes is that it is very labil.It has an insulin sensitivity of 120 mg and on the other hand the HC even slowly upload the blood button. Then, with slight changes in the environment, the requirements also change (we come on the mountain vacation where there is not much moisture and when we return here we need more insulin).
The child is usually well controlled but when his requirements change and glycemia is triggered, which passes us every 2 weeks approx, I collapse. Its gyrose is 6.8%, yes.
I am also aware that he does not have to see me depressed and I effort me to make him feel good, more than he used to do before, something that also saddens me.
I don't say that I want to die because I have to take care of the child.I do not know what I would do without him, this is very hard, it requires you to be 100% alert throughout the day, for preventing hypos, for choosing and weighing food, for calculating the insulin dose, monitoring it in the exercise, giving it encouragement, informingTo third parties of how to treat my son's DM at school or relatives, I can't make a nap because I have to take it to the street, looking for information ...
Thank you very much for answering, thanks for your comfort.I hope a cure or some merciful advance arrives. A hug.
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
Hi @lowcarb my advice is that you look for some kind of therapy or support to overcome what you are assuming to have a diabetic child. I do not have diabetic children but I am diabetic since the age of 9 (I have 41) and to a greater or lesser extent I took a fairly normal childhood.At that time there were neither sensors nor feathers nor bombs, I had to go with my vial and my syringe, imagine ... and slept at the house of friends, I went to the excursions of school, to birthday ... Later adolescence arrived and I didn't stop doing things for my diabetes.Then they arrived long years of lack of control and ignoring my illness but I overcome it and resumed the control of diabetes. By this I want to tell you that control does not always have to be perfect, that you are going to have better stages and worse stages and that being aware of the definitive cure is somewhat utopian. It is important that he begins to be as autonomous as possible as soon as possible and that you accept the disease and get living with it. I send you a lot of encouragement and a lot of strength.
Thank you @nigiri, listen to the reality that I don't have to wait for a cure saddes me much more but I open my eyes to reality like a fist in my stomach.
I am also very afraid and pain to think about the adolescence of my son, with his respective rebellion ... God, think about that he cars me.
I'm already in therapy, well, I stopped finding myself better but about 2 months ago I fell again.
I am envious of your case.I wish it would have been instead of my son.
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
@Lowcarb that was also said by my mother at the beginning, that I wish it would have been her instead of me but I was me and here I am, with 41 years, perfectly healthy, right now 6 months pregnant, without having stopped doing anything for my illnessand living day to day as any "normal" person. I know that it is very easy to say it and maybe it sounds a bit to "Mr Wonderful" but it is better that you focus on a day to day, in the small victories and when adolescence arrives, it will be seen.By then the disease will depend on him, not on you, so many times he will have to make heart guts.And hey, the same in the meantime, the cure arrives but we cannot grab that because I personally have been waiting for 32 years !! Go back to therapy, it is important that you are well and strong so that he is too and above all that you can clarify those fears so that he normalizes the situation, there is no other. All the best.
@nigiri God listens to you, and although I have not been especially believer but I no longer know where to find comfort.
I see this news and give me hope, although I also think that I could sin optimistic or that they want to deceive the pharmaceutical industry that intends to capture investors.
[URL = " Link https: //www.google.com/amp/s/www.eldebate.com/sociedad/20220731/cura-diabetes-mas-merca-regeneran-insulina-celulas-madre-pancreas_amp.html [/URL]
I do not pass the link to discuss its content, but to ask yourself if, with your experience, you feel that the news is a lie. I want to know your degree of hope after so many years to know if I am blindly optimistic and I do not realize.
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
@Lowcarb I have listening that the cure of diabetes is closer and closer to exactly 32 years, draw your own conclusions. I am something that neither I even think about it but well, each one is each.
@Lowcarb I have debuted as an adult and I have no children, but with what I have learned if my son were a diabetic I would focus on learning and teaching him to be self -sufficient so that I had no problems when I was not with him. Over the years we will get better control methods, but I doubt that I see healing.Hopefully your son yes. Diabetes is slavery, but we do the same things as a non -diabetic with control of that.
@Lowcarb, 6.8 is very good glycate for a child. I lived very distressed too, if I get to know how well it is still after 30 years, I would have saved all that suffering If you see that you need anxiolytic, you take them, and you are acting on the controls and automating, without overwhelms It is a continuous monitoring, but, when you manage to automate it, take away the anguish and live calm. It took me years, but if I could go back I would have lived much quieter. When you start well, with that glycosilada, it is still good, and lability is referring as experience grows and gains. The sensors of now are very helpful, but you also see peaks that did not see the glucometer and can generate more anxiety. They are going to reassure you and glycosiladas.
I trust that in a few years we have autonomous bombs that get glycos of 6 or less and have to take care of control. A hug, that everything is going well and is a shame that you cannot enjoy your child's childhood. Children who start now have to see treatments that allow them to normalize life and who knows if beta cell implants before what we think. Much encouragement, but with peace of mind.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free) Fiasp: 4- 4- 3 Toujeo: 20
@Lowcarb, I just read your link and I find that therapy very credible.Maybe it comes to us long before what we think. Much encouragement Ah, the nap, of course you can do it, only controls the fast, and the hypos is good that you recognize them and take a juice or whatever does well.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free) Fiasp: 4- 4- 3 Toujeo: 20
@Ruthbia, @nigiri, @regina, thanks to all for the aid. There is no rest with this disease. After 8 months of diagnosis, I suppose it is still normal to have depression and cry (anxiety I don't have, luckily).I guess I love my son very much and I can't take it out of my head.You can also want to control it every moment myself and I have touched back myself.
I have heard that there are parents of diabetics of all kinds, some overprotectors (such as my case), others are more passage and even listened to a case of a family with 6 or 8 -year -old diabetic child who made himself calculate the rations of HCIn food because they were overwhelmed or did not understand the disease very well ... This is very strong and serious, although I can almost understand them because they will surely feel saturated, which will not happen to me, I prefer to live what I have left of life cryingTo be so cruel to my son.
I thank you again, I feel very vulnerable, I hope to improve soon. A kiss to all.
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
@Lowcarb: You have to focus on the "here and now". Healing will arrive but in the meantime use the means you have so that your child continues with a good glycosilada.Cheer up!
@Lowcarb, Take serotonin or something for the depression.It is not worth being like that, you will see the clearest things when you are better, and your son will also see you well.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free) Fiasp: 4- 4- 3 Toujeo: 20
@Lowcarb for that reason, because there is no rest we must try to see things with other eyes and make the most of the means we have as the sensors that warn us of hyperglycemia or hypoglycemia.
Do not get depressed, think that your child as a small will normalize much better than if he had passed him as an adult.He has a long and beautiful life ahead, it will be what he wants, diabetes will not prevent him from developing, marrying, having family .... whatever he wants over.And in a few months you will look at this present, which will then be passed, with other eyes and you will realize that everything happens, which is a matter of adaptation and take advantage of the means we have today.
Many things happen to us throughout life, and diabetes is not one of the worst, it is slavery but it is very painless.If you were in pain, it would be horrible.
@Lowcarb as soon as you learn to be autonomous, the better, it is not cruelty, it is for your good.I debuted with 9 as I have already told you and it is true that I fell a lot of responsibility being very small but there is no other ... Cheer up, you will see that little by little you will be better.
@Lowcarb Do you know what came to me very well when I was little to learn to handle the disease?Camps for diabetic children.I was in 3 with 10, 11 and 12 years, there were younger and older children and then, of course, diabetes specialized monitors and two doctors.I remember them with great affection because in addition to learning a lot, we had a great time.My mother also came very well, you can imagine ... Today I don't know which association or center will organize them, when I was going they were Red Cross camps but surely there is a lot now.I encourage you to try it next summer.
@nigiri already told me about these camps a well -known 40 -year -old diabetic, he said that as a child they also pointed him out but in the end he did not want to go back because he preferred to make life with "normal" children that is what will be in real life.He did not say that the camps were bad, on the contrary, but to start "letting go" they seem to be very good.However, mine is 6 years old and for the moment it is very small. My heart was being able to think about the pain of thinking that he has to go to a camp alone to manage his illness.
Hijo con 6 años con DM1. Novorrapid, Lantus, FreeStyle.
@Lowcarb, wait for it to be a bit larger for the camps, that will take advantage of them better. Take care of yourself, that this is a long -distance marathon, but you are sure.A lot of strength. Do not obsess with controls and peaks, being pending glycosilada goes well. Look at the values when you wake up, those indicate if you need slower. And for the hypos always have cocacola at home and sugar in their pockets.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free) Fiasp: 4- 4- 3 Toujeo: 20
@Regina thanks for the tips. Today the psychiatrist has changed my medication, to see how. Diabetes are taking it more or less well, what happens is that it is a constant control of both the sugar that it has and what is going to eat and insulin treatment and daily exercise.
We have changed our lives.Before we were more left and the child was being freer and faster. Now we cannot fall asleep in the laurels or a single day.The child is now a total dependent.This is what affects me so much.And to think that the child, when he is a teenager he will not have a rest, nor can he make the madman as I did kill me as a penita. But diabetes control it well.
Instead of Coca Cola we give juice that we have controlled the amount so that it does not do hyperglycemia.If the hypo is presented for the day and is going to do 100ml sports and 3 salty cookies.If you are going to sleep or make 50ml of juice and 2 cookies, with this it goes to 110-120 neither more nor less.I assume that over time it will vary.