new and frustrated

By Beulah Latest Reply 2010-03-14 07:15:12 -0500
Started 2010-03-11 10:06:07 -0600

My son was diagnosed 3 years ago, first they said that he was type one and now they are calling it Brittle. I get upset because I feel as though he will never have a norm. The Doctors do all these test because they don't understand a lot about this brittle diabetes. I get nervous and fearful for his future. One minute he will be 123 then a few hours later 600 or more with no keytones. I feel as though he will never have a normal life. We have had him the hospital ICU several times. He takes three different insulin and takes anywhere between 6 to 10 shots a day. His diet is so carefully monitored but there seems to be no relief. I wish I knew more about this type does anyone?

13 replies

Anne56 2010-03-12 14:17:06 -0600 Report

Dear Beulah,

I wonder if it is possible to get connected to other parents (for you) who have children with this diagnosis and for your son to meet the children who struggle similarly? There is always great potential in connecting with others for so many good reasons.

You sound like a great mom, and I wish you well. Although your young son has an awesome challenge, he has a wonderful, loving advocate/mom to walk beside him. May God bless you both!

I hope you keep us posted!


Truckers Wife
Truckers Wife 2010-03-14 07:15:12 -0500 Report

Hi Beaulah, I'm new to this too. I've been reading a lot of posts and find it very interesting that no one ever mentions and insulin pump. I've had Type I since I was six years old (I'm 53 now). Thankfully I made it through my teen years. It wasn't easy. I went on the pump about 10 years ago. It was the best thing that ever happened. My blood sugar control has been so much better since then. You might want to check into this. I know a lot of kids are now using the pump.

spiritwalker 2010-03-11 15:43:48 -0600 Report

Hi Beulah, Welcome to DC. You will find friends, information, sharing and caring people here. What age is your son? There are other parents on the site that might
be able to help. Keep coming back. We are here for you.

Harlen 2010-03-11 14:56:09 -0600 Report

hello and welcome
Yep thats a hard one
i am so sorry your going thrue this
Its so hard to watch owr kids go thrue hard times it kills us to have them have a hard road.
I wish kids didnt have to.
It just kills me
Best wishes

dietcherry 2010-03-11 11:49:43 -0600 Report

Hey Beulah! Welcome to DC! How old is your son? Is it possible that he is sneaking sweets when no one is looking? I have heard of pre-teens and older doing this and their parents are not aware of it. If this is not the case, I know there is help for him. This is good advice that MAYS and veggie1962 gave you here! Good luck to you and him! Renee :)

Beulah 2010-03-12 00:04:08 -0600 Report

He is 11 and yes it could be but I have such a close eye and the school as well but it is possible but this happens all the time throughout the day with his blood sugars it even happened when he was in the hospital on a strict diet.Thank-you for your time.

dietcherry 2010-03-12 08:51:45 -0600 Report

Wow, Beulah, I don't know what to say! I don't know very much about brittle; if this is what it is about, I really feel for him! Hopefully, they will get him straightened out-please keep us posted!

veggie1962 2010-03-11 10:34:58 -0600 Report

I'm so sorry you are having such a difficult time. I don't know the particulars of your situation but one thing I have read recently about "brittle" diabetes is that it may be an overused diagnosis. Some people are given the term "brittle" from being not properly managed (e.g. doctors aren't managing properly, blood sugar is not in good control, patient gets "brittle" lable). I don't know where you live or if you have already done so, but maybe it would be good to go to a specialized diabetes center. One place that comes to mind is Joslin in Boston (for example). Here is a link so you can get an idea of what I'm talking about:

Perhaps with a real team oriented approach and dealing with experts in diabetes (like Joslin for example), you might get some better results. Of course, it is possible that you could do something like this simply to be told the same thing, but my gut is that you could probably get some improvements. But I may be speaking out of turn since I odn't know what has already been tried.

Beulah 2010-03-12 00:00:40 -0600 Report

Thank you! I take him to The Barbra Davis Center in Denver Colorado. They are supposed to be the top notch. They kept him in the hospital for awhile with everything closely monitored by their hand and he had the same reaction from him. They are doing new testing on him. I signed up for it because I hope they can learn from him. I just get so frustrated.

MAYS 2010-03-11 10:25:48 -0600 Report

Welcome to Diabetic Connect !

Brittle Diabetes is a term used to describe what is known as uncontrollable Type 1 Diabetes.

As explained below :

Brittle diabetes, also called labile diabetes, is a term used to describe uncontrolled type 1 diabetes. People with brittle diabetes frequently experience large swings in blood sugar (glucose) levels. These cause either hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), which is more common and sometimes extreme.
The person with brittle diabetes is frequently hospitalized, misses work and often has to contend with psychological problems. All of these factors place additional emotional and financial stress on family members.

How Often Does Brittle Diabetes Occur?

Brittle diabetes is relatively rare. Less than 1 of people who have insulin-dependent diabetes patients experience brittle diabetes. However, those who do are often troubled by frequent medical problems and hospital admissions. Overall, three in 1,000 (0.3 of) people with type 1 diabetes will develop brittle diabetes.

Who Gets Brittle Diabetes and Why

People with psychological problems, such as stress and depression, are at highest risk of experiencing brittle diabetes. In some cases, these psychological problems lead them to neglect self-care for their diabetes. For example, they may stop maintaining a healthy diet or may not manage their blood sugar). As blood sugar control wanes, metabolic imbalances further complicate and often worsen the underlying psychological problems, causing a repetitive cycle of brittle diabetes.

I hope that this helps.

" Mays "

Beulah 2010-03-11 23:56:14 -0600 Report

Yes it does but my son is only 11 and he has no psychologial problems and we go on a very strick diet and he only weighs 85lbs. He is stressed but do to the unknown of his condition because his numbers are hardly ever stable.