Desperate

Isi's profile photo   04/23/2021 8:08 a.m.

  
Isi
04/23/2021 8:08 a.m.

Hello good
My name is Isi and I am the father of Mary who has just debuted (hate this word) with 4 years.6 months ago and I sincerely believe that we are going worse ... we don't control anything ... It is going up and down all day.My wife and I are desperate and we do not understand how this works like this ... to see myself understand, I understand the theory but we are exhausted to calculate hydrates, punctures ... yesterday between corrections or meals 9 in total ... it seems inhuman,It takes it fatal and we are sinking into a well that we don't see exit ...
Thanks in advance for your comments.
Isidoro

No signature configured, add it on your user's profile.
  
marine
04/23/2021 9 a.m.

Good @isi,

In order to help you we need more data, what treatment it carries etc ..... so we can help you something.

Greetings and welcome to the forum.

No signature configured, add it on your user's profile.
  
Isi
04/23/2021 9:48 a.m.

It is with Junior and Levemir Humalog.We usually put 2 Humalog units at breakfast, food and dinner and a half unity in the snack.Until nothing ago it arrived very fair at the middle of the school, even one day a hiccup of 55 and it was taken half a ration then but from this Monday we have to go put half a unit because it is around 220 for the mid -morning.

The slow one we put in 2 times 2 units at 8 a.m.and 2 units at 21 p.m.

The worst thing now is that we click it ... I think the novelty has passed when we start.We have tried with Iport but does not want to hear about it.He says he already carries the sensor and does not plan to wear more pots tells us ...

No signature configured, add it on your user's profile.
  
Isi
04/23/2021 9:53 a.m.

Today I am in denial ... I refuse to believe that this is so uncontrollable and so inaccurate.It seems incredible to work and live on punctures and measuring food.I never thought this would be so hard a bite more or less tell us.It has a sensitivity index of 170 and is a girl ... wants to eat sweets ... and we don't know how to manage it ... neither do food so many before but our soul leaves to tell you that you can't.

No signature configured, add it on your user's profile.
  
marine
04/23/2021 10:33 a.m.

This requires patience ... essay and error and knowing very well how the body responds and how food interacts.

I don't know what knowledge you have of nutrition and so on and that they have explained or not ...

But you have to control very well how much is a ration of hydrates of each food and the glycemic indices of food,

Then you have to know how to put the insulin correctly to avoid intramuscular punctures that I imagine you will have the 4mm pediatric

You will also have to take into account that depending on the area where insulin is put the absorption is faster or more slow

This is a background, take it easy ... in this forum many doubts are cleared and you can live with diabetes and make normal life.

No signature configured, add it on your user's profile.
  
Isi
04/23/2021 11:03 a.m.

Thanks Marine, if we are studying, my wife above all and we see how your body works too.We are doing a master's degree in nutrition ...

Use the needles of 4 yes, although there are times that small bruises and some blood are coming out.We have already seen that the gut goes faster than other areas.

I hope and I know that it makes normal life as I read you here but I see that we have to go so hard that it makes me very hard.

At the moment we pray for a cure or a simpler management at least ... it is so constant that it does not leave us time for anything else.

We read you carefully.

No signature configured, add it on your user's profile.
  
marine
04/23/2021 11:11 a.m.

I also tell you that the little ones, but not to be based on what age ... They are prescribed many times the insulin pump is something that if in the long run you do not manage to control with insulins in pen will end up using.

A co -worker where her daughter debuted with 12 years, the same thing happened to her and now with the bomb is very good.

The problem of being smaller is that by having more disruption of pulls etc ...

Go control and little by little, I've been with this for 20 years and I have made normal life.

No signature configured, add it on your user's profile.
  
matrix
04/23/2021 3:56 p.m.

isi said:
good
My name is Isi and I am the father of Mary who has just debuted (hate this word) with 4 years.6 months ago and I sincerely believe that we are going worse ... we don't control anything ... It is going up and down all day.My wife and I are desperate and we do not understand how this works like this ... to see myself understand, I understand the theory but we are exhausted to calculate hydrates, punctures ... yesterday between corrections or meals 9 in total ... it seems inhuman,It takes it fatal and we are sinking into a well that we don't see exit ...
Thanks in advance for your comments.
Isidoro

Hello.I imagine despair.I have a 3 -year -old girl and it is very hard when anything gets out of control.The first thing to do is understand that it will require time for them to do so, but that it can be controlled, you can.There are types of insulin, there are continuous glucose sensors, there are varied treatments.

If they have not managed to control well, have they valued to go with a particular pediatric endocrine that can actually determine the most suitable treatment?

List of the best children's endocrine in Spain

Perhaps the type of insulin, the time, the place where it is placed, the issue of hydrates ... Once they have that well controlled they can be more peace of mind of how it works and how to take it as well as possible.

If I have seen many DB1 that lead a normal life.Of course, with such a small girl, it is difficult, especially because you suffer when you see her badly, you are afraid of the high and low glucose peaks and it hurts that she cannot eat what is like.But it is a matter of time, when they have everything under control, insurance can eat anything.

Perhaps we must investigate automatic insulin pumps.I do not know how they work or how they are used, but I have seen it in children and it is a way of being calmer and having the disease under control.

Blessings and greetings from mx

Desde México. DB2. Metformina c/ 12hrs. No insulina. HCG22/02/21: 9.0. HCG 18/04/21: 7.4

  
Colt
04/23/2021 4:55 p.m.

I share a video that helped me a lot

Link

Diabetes tipo 1 desde enero 2021.
Insulina Toujeo 10 u dia, Crestor 1 u dia.
A1C: 5,7 % Agosto 2021

  
Isi
04/23/2021 5:53 p.m.

matrix said:
isi said:
good
My name is Isi and I am the father of Mary who has just debuted (hate this word) with 4 years.6 months ago and I sincerely believe that we are going worse ... we don't control anything ... It is going up and down all day.My wife and I are desperate and we do not understand how this works like this ... to see myself understand, I understand the theory but we are exhausted to calculate hydrates, punctures ... yesterday between corrections or meals 9 in total ... it seems inhuman,It takes it fatal and we are sinking into a well that we don't see exit ...
Thanks in advance for your comments.
Isidoro

Hello.I imagine despair.I have a 3 -year -old girl and it is very hard when anything gets out of control.The first thing to do is understand that it will require time for them to do so, but that it can be controlled, you can.There are types of insulin, there are continuous glucose sensors, there are varied treatments.

If they have not managed to control well, have they valued to go with a particular pediatric endocrine that can actually determine the most suitable treatment?

List of the best children's endocrine in Spain

Perhaps the type of insulin, the time, the place where it is placed, the issue of hydrates ... Once they have that well controlled they can be more peace of mind of how it works and how to take it as well as possible.

If I have seen many DB1 that lead a normal life.Of course, with such a small girl, it is difficult, especially because you suffer when you see her badly, you are afraid of the high and low glucose peaks and it hurts that she cannot eat what is like.But it is a matter of time, when they have everything under control, insurance can eat anything.

Perhaps we must investigate automatic insulin pumps.I do not know how they work or how they are used, but I have seen it in children and it is a way of being calmer and having the disease under control.

Blessings and greetings from mx

Thank you very much, if I think we need help from a private endocrine ... and also the issue of the bomb is a good idea although your endocrine does not consider it yet since it says it has good control.The last hemoglobin has been now and is 6.5.

Thank you

No signature configured, add it on your user's profile.
  
Isi
04/23/2021 5:58 p.m.

colt said:
I share a video that helps me a lot

Link

Thank you very much, it seemed very interesting.We find the issue of a low hydrates diet.He currently takes between 9 and 10 rations of hydrates a day but dies for eating a super dish of macaroni (not integral or lentil as we did before) or a simple bag of worms, a bag of fried potatoes ... I don't know, noIt was a newspaper before but I don't know how to manage those foods.Yesterday we gave it an ice cream of 1 ration without Mercadona sugar and the peak was more than 300 ...

The issue of immunotherapy seems very interesting to me and gives us a lot of hope for a near future all the advances that are explained in the video ... I hope that there are no more years to get something better.

Thank you

No signature configured, add it on your user's profile.
  
jldiazdel
04/23/2021 6:17 p.m.

@Isi

Well give him a whim one day a week.I loved macaroni with sausage!So I understand perfectly.She is a girl and has to enjoy life.In midday food it is easier to regulate.At night you have to avoid whims but in the food it is easier.And if you take a walk or then play better.

My nephew started a little later with 8 years, and he told me that the bomb changed his daily life and it was great.He allowed him to go out with his friends.At first it is very complicated.It requires a lot of study.It is not easy.But once I control it, it will help you a lot.Now it is very small for that option and I do not think that the endocrine recommends it but I am sure that in a few years it will recommend it.

Now you will have to have a lot of patience, keep learning.It is a marathon.But it will grow, study, will have children, etc.All a little more complicated, but with your help it will go ahead.Your life expectancy with good control does not change anything.Yes, the day to day is very complicated.But you have to move on.You are doing very well!
A very strong greeting

DM1 desde Marzo 2018 (53 años). 7-10 unidades basal: Abasaglar (insulina glargina). NovoRapid. Factor 1.0/1.5.
Vivo en Alemania. CarboH total dia 70-80 gr. Deporte Gym todos dias L-V 1h-2 h
HbA1c 5,5% (Abril 2022)
Dexcom G6

  
Alberto_13
04/23/2021 6:55 p.m.

Two notes, one for the macarrones I love, I have tried integral, of sarracene wheat, of lentils and all gave me high glutemiah, until I check that eating half the values ​​were acceptable. With respect to the sweetsDelighted the licorice, so I will exercise, hiking, bicycle, swimming, I have a handful and mischief, so that I no longer know if I exercise to get fed up with a licorice, what I mean is that you take advantage of the right time forGive it sweet

DM3c desde 2018; hb 6 % (feb.. 2022) (tresiba+fiasp+metformina)

  
Isi
04/23/2021 9:25 p.m.

Thank you very much for your spirits.Yesterday was a horrible day and today it is quite good.How you have said is a background and we must support it in everything.

You don't know how we admire.I do not understand the little visibility that is given to diabetes ... Before our daughter will debut all we knew was ears, but it is so demanding and is so present that it amazes me that it has so little visibility.

I will call me donkey but I see the announcement of childrentime I ask his endocrine about healing, he hits me some cuts that leaves me worse than I was ... in other diseases I see that he fights for the cure, in the little route that we carry with this everything I see, LeoIt is getting used to because you have no choice but to live like this, it's a bit discouraging.

Thank you!

No signature configured, add it on your user's profile.
  
Alberto_13
04/23/2021 10:11 p.m.

Comparisons are always hateful, but diabetes has a good thing, the survival index is 100% if you control it, how many serious diseases the same can say

DM3c desde 2018; hb 6 % (feb.. 2022) (tresiba+fiasp+metformina)

  
DavidCasinos
04/23/2021 11:24 p.m.

isi said:
good
My name is Isi and I am the father of Mary who has just debuted (hate this word) with 4 years.6 months ago and I sincerely believe that we are going worse ... we don't control anything ... It is going up and down all day.My wife and I are desperate and we do not understand how this works like this ... to see myself understand, I understand the theory but we are exhausted to calculate hydrates, punctures ... yesterday between corrections or meals 9 in total ... it seems inhuman,It takes it fatal and we are sinking into a well that we don't see exit ...
Thanks in advance for your comments.
Isidoro

Hello Isi, delighted to greet you, I put myself in your skin, as you say that word "debut" sounds to a new life, but if so, that it is to enjoy to the fullest, today we can and know what way to choose, to control our diabetes,This is mine Keto lifestyle, I wish I would have met him 48 years ago, because they are the years I live with this partner.

All the best.

Look at this video.
Rethinking Keto for Type 1 Diabetes RD Dikeman
Link

No signature configured, add it on your user's profile.
  
elisa74
04/23/2021 11:40 p.m.

Hello ISI, welcome to the forum, my son debuted in February, he is 14 years old, as a mother I understand your despair and more being such a small girl, I can only tell you that here you will be very well accompanied and they will help you a lot with a veryGood advice, I don't know what I would do without this forum !!Much encouragement and patience, this is not easy but surely we will learn to help our children to be able to lead a life as normal as possible,

No signature configured, add it on your user's profile.
  
Regina
04/24/2021 2:06 a.m.

@Isi, my daughter started with 5 years, now has 32 and no complication.With ups and downs and insulins that had their father and me with my soul in suspense for several years, until the Lantus arrived.
Diabetes did not prevent him from doing anything, he studied and works on what he always liked.And it's happy.
My husband and I had a bad time, very badly, but seeing it now rewards us a lot.
He never complained, but soon after I say debut), two tear fell when we passed through the chuches store.So I put it inside and told her, take what you want, that you are going to eat them.
I replaced the first plate of macaroni with the chuches dish he wanted.I remember that on that dish he put a grooves of chocolates and some gominate bears.
I put the same insulin as always and ate the chuches, the steak and a salad.
Two hours after eating was 120.
He never cry again.
There were chuches at home for when I was low and learned to eat them when I could.
Much encouragement and think that if my daughter resists 27 years without complications (we get 6.5 or less), yours at that time will have a much more perfect treatment that allows her to live a long and full life.
Much encouragement.
And if they change that insulin for a plain slower, which only puts itself once a day, better.
As they grow they need more doses, it increases on average in half unity.
A hug.
There is an octopus -like rubber apparatus, which adapts to the pen and the puncture hurts nothing., Tickleflex, it seems to me.

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

  
march
04/24/2021 10:16 a.m.

Hi @isi, our daughter was diagnosed with diabetes with 15 months, now this aim of turning 11 and we have already lived many phases of this disease.
I also thought it was strange that you don't know more about what diabetes is, but it requires so much effort at the beginning that you do not have the necessary strength to fight with what surrounds you in addition to the disease, day to day, 24 hours, or so I want to believe.Maybe they have not yet asked you the question of, with the time that has diabetes now is already more stable?
As they say it is a background career, and these also require psychological training, I recommend that both your daughter and you visit a diabetes specialist psychologist, I can recommend a psychologist in Barcelona, ​​life changed to us, along with a nutritionistThat he taught us to tell and weigh everything, everything.Both specialists with diabetes, and I think they have a disease point of view that other specialists may not have it.

As parents and external pancreas of your daughter, you should take care of yourself.

It is very hard and over time the situations change, but Jay to be clear that 100%diabetes cannot be controlled.

Recommend Keto or Carbohydrates Diets I see it out of place for a girl, who eats what he wants and needs, you have to adjust insulin and calculate hydrates, weigh food, identify whether they are fast sugars or not, and get away from the profucts withoutsugars, if you don't want to learn the effects of sweeteners, who also have it.Donsacarino I think he had a post on his blog about them.It is better to know what he eats and be able to count hydrates.And chuches, because I have read in an answer, we also have them for when it goes down, but beware, because it happened once it has not been waiting for a long time to be low to eat them, Entobces see that you have to let them eat them andPutting insulin, and as they have said, it is much essay and error to learn.

And theme punctures, our daughter has a panic, with the help of psychòloga we advance a little, but I had days that I had to take it between two to prick the insulin.In the end they put us bomb, it has been with her for years, in Septembre will be 6 years old, the change is abysmal, a puncture, if everything goes well, every 3 days, corrections and insulin adjustments much better, but it is a device hooked to the body,You have to be aware.And if it is small or not to take it?, Then I tell you no, that are only messages and information of those who do not want to make the expense (I speak of public health, which is my case), we had two years with diabetes andOne day on the beach we saw a smaller girl than ours with insulin bomb, we hallucinate, we asked her parents and told us that she has taken her since she left the hospital, in the "debut", and that where they lived it was like thatFor all children, in Paris.

On the cure, there are various studies on the way, look diabetescero, if you don't know them already, but will come for the effort of patients, it is clear.What always raises me is that having famous with diabetes, singers, elite players (in the defense of Madrid there is one ;-)), there is no more information than it really supposes or means.It is not the sugar of the grandparents, as they have asked us more than once, it is sad to have to explain this continuously, and it still surprises me.Then, over time, it improves, above all the confidence in the knowledge and the management of diabetes, and you will begin to rest and see it from another perspective.

On insulinas we have gone through a few, and as they have already told you, much better than the lesson is the lantus, if they can change it better, it is a prick less.And if the endocrine tells you that it is flat, it is not, and he does not have diabetes or has ever used it, but compared to the other slow ones is one of the mostflat.

And I think I stop, sometimes it is so difficult to know when to stop ...

Much encouragement and strength, and take care of you too !!

No signature configured, add it on your user's profile.
  
Isi
04/24/2021 10:52 a.m.

Thank you very much for your words and your stories reach us to the heart.It is lucky to feel so close and receive so much support.Right now we feel closer to you than any other person in our environment.Even friends, they think we are obsessed ...

Good day
ISI

No signature configured, add it on your user's profile.

Join the Discussion!

To participate in this thread, please register or log in.