Re: New With Lots of questions

November 1, 2003

In a message dated 11/1/2003 10:09:57 AM Central Standard Time,

lreynolds42002@... writes:

> his paleness goes away and so do the headahes

> and the concentration comes back.can anyone help guide me??

>

Write all this done and get yourself and that child to a pediatric

endocrinologist!! Seizures my eye......grrrrr.....

Ressy RN

November 1, 2003

,

You need to make an appointment with a very good Endocrinologist...it most

likely will take a 5 hours Glucose Tolerance test to get a true reading. That

is what they gave me many years ago, and found that I had a Carbohydrate

Intolerance with reactive hypoglycemia. The doctor said that I had a classic

case, in that my sugar would bounce real low and then go up real high after

eating. Now 25 years later, I am on insulin, but I knew earlier enough so that

I was able to take care of it for years with diet and exercise.

Diabetes will cause all the symptoms that you have described...please get him

checked soon, so he won't have to suffer through all of this. At least, it

won't hurt him in anyway to have him checked and it will be well worth it.

There are so many illnesses that involve the Endocrine System...the average

doctors are not aware of them. If he is peeing a lot, his system may be low in

Potassium, and that will cause seizures...I know. His electrolytes may be out

of balance, because of all that he has gone through, and that will cause

problems. If he is peeing a lot, that is like an older person who is taking

diuretics for their blood pressure or heart related problems, if they are taking

diuretics the doctors most likely have them taking Potassium.

Please keep us informed as to how he is doing. I am so sorry to hear that he is

having all those problems.

Regards,

Eleanor

November 1, 2003

Dear ,

Surely your son is a type 1 diabetic. I'm horrified at the neglect of

his doctors, as these seizues can be fatal. Please get an appt. with

an endocrinologist immediately. Be prepared to take him to the ER at

any time there's danger signs. Remove most of the carbohydrates from

his diet until you can achieve better control, as right now, with him

receiving no injected insulin, those carbohydrates are just like

poison to him. Type 1's can slip into a coma, then death, very

quickly. If he hypos again, there may not be time to get him to the

ER. Go to a pharmacy or Wal-Mart (or equivalent) and buy him some

glucose tablets. They work much faster than foods to pull his glucose

readings back up when he's low. Buy some little tubes of cake

frosting trim so that you can squirt a bit inside his lip to pull his

numbers up quickly. (What's important here is to make sure that

whatever you give him to pull his glucose readings up doesn't cause

him to choke, like orange juice could. As I said, glucose tabs work

much better/faster than foods, but he may be too far gone to chew up

the tablets finely, and that's where the cake decorating stuff in the

tube can have an advantage.

I think the best book for you to get immediately would be " Dr.

Bernstein's Diabetes Solution " by K. Bernstein, M.D., which

listmates have mentioned was just updated and rereleased.

I hope that the rest of us can work with out about many aspects of

diabetes self-care. Please help us by, for instance, telling us what

type of glucose meter you bought, and what your understanding is

about how to use it. For one thing, especially because you're dealing

with a child who probably doesn't have much extra body fat, you'll

want a glucose meter that has a lancet that has a clicker on it to

set the depth which the needle goes in. That way you won't go too

deep, and yet you'll go deep enough to get a sufficient amount of

blood so that you can test accurately. (If done properly, with the

right equipment, the glucose shots will hurt little, or not at all,

for most of us.)

One thing that needs immediate attention is injecting your son with

insulin. Injected insulin is a life-giver for him. Dr. Bernstein's

book will help a lot, but also work with the rest of us on technique,

types of insulin to use, timing, keeping records, etc.

Please start a journal where you record every important detail, to

help you establish good control. You'll want to write down date, time

of day, each glucose reading, plus notes about physical activity,

illness, or anything else that might have impacted his glucose

readings. You'll also want to record what foods he ate, and when. The

most important part of the foods we diabetics eat is, of course,

carbohydrates. There are books and online software programs that can

help you learn more about that. Just to get you started, the foods

which will be the most dangerous to eat include potatoes, pasta,

breads, cereal, sweets (unless you're positive they're artificially

sweetened ... even then they can represent at least a minor problem),

and starchy vegetables. Foods that are more or less okay to eat

include broccoli, cauliflower, green beans, salads, meats, cheeses,

guacamole dip for raw veggies. The less food is processed, the less

it will tend to spike his glucose.

Remember ... you're dealing with the need to prevent his blood

glucose from going both too high and too low! There's lots and lots

to learn. It bums me out that his doctors aren't even aware of the

serious nature of his illness.

So ... important things to do: learn as much as you can, as soon as

you can, about the carbohydrate content of foods. For now, go through

your fridge and cupboards and pantry and clean out any foods which,

according to their nutrition labels, have more than 20 grams of

carbohydrates per serving. That will help you avoid confusion about

what he can eat. (Once you have everything well established, you can

add back in some carbs, probably, and you can also probably have

separate foods that are okay for your son to eat. But for now, you

want to keep things as simple as possible - and if you get those " bad

foods " the heck out of the house, it will remove the temptation for

him to eat things which could endanger his life.

This will be a huge adjustment for your son to make. He will begin

thinking of himself as being " sickly. " He will have to pay close

attention to things he never gave a thought to. Your attention to the

details of his life will make him feel you are interfering. He will

probably be in denial about how serious this illness is. He may begin

hiding things from you, like stowing candy under his bed or in his

dresser, or sneaking things while away from home. He may stop going

to others' birthday parties to avoid the embarrassment of having to

avoid certain foods. He will think of himself as " different. " He may

become very depressed.

You will have to watch wounds very closely to avoid infections. He

will need a course of antibiotics if he has any medical procedure,

especially dental work. Pay specially close attention to his feet;

they are the first to get into trouble. His eyes, his feet, his

kidney function. The VERY MOST IMPORTANT THING right now is to keep

his glucose levels as close to 100, as much of the time as possible.

He could use a good endocrinologist, a good nutritionist, some

counseling, and lots of time with you, working together on this. If

you encourage him and praise him when he does well, he will soon take

pride in managing his own illness. He will need to carry glucose tabs

or equivalent with him all the time.

You will need to work with his teachers, school nurse and playmates

about his diabetes care, and especially wnat to do if he hypos ...

what signs to look for in the early stages.

Susie

November 1, 2003

First, , I apologize for calling him your son instead of your

grandson. Some things to address ... it's important that in these

early stages you minimize things that will make him hate or fear this

disease. Many of us find the finger-sticker glucose testers too

painful. There are some arm-stickers which hurt little, if at all,

for most of us. I use one called FreeStyle, by TheraSense. Get

prescriptions for it, as well as everything connected with the

disease, so that insurance will pick up part of the tab, even when

the things don't actually require an Rx. As I said before, make sure

you use a tester on which you can set the depth that the needle goes

in, to minimize pain and to make sure that each time you get enough

blood to test adequately.

You will need to meet with his principal, teachers, school nurse and

playmates to help them identify early signs of hypos coming on and to

educate them about the illness in general.

He may need emotional counseling, as well as working with a

nutritionist.

Nutrition labels on packaged foods are your friend. (I lost my post

and am trying to reconstruct ... I apologize if I'm saying things

twice.) Ity will help if, right now, you go through his cupboards,

pantry and refrigerator in his home and remove anything which has,

say, 20 grams of carbohyrates per serving or more. That will help

avoid confusion and reduce temptation, because if there's high-carb

foods in the house, they will get eaten. And in fact your grandson

will probably be most tempted by the foods that are the worst for him.

Foods which are " bad " include pasta, breads, cereal, rice, pretzels,

potato chips and other snack foods, potatoes, and starchy vegetables.

Foods which are " good " include broccoli, cauliflower, green beans,

salads, meats, cheeses, guacamole dip for raw veggies.

In general, the less foods are " prepared " (like cooking, mushing up,

etc.), the healthier they will be. Choose raw rather than steamed;

steamed rather than overcooked, etc.

Breakfast is the toughest meal of the day, because most of the foods

are so high-carb. Some of us just skip breakfast and make up for it

with a sort of " brunch " that may include salads, meats, nuts, etc.

(I must say again that I'm horrified by the doctors which are

treating the seizures, symptoms, while ignoring what is causing them.)

He is suffering from glucose readings that are too high and readings

that are too low. Insulin injections will keep his readings down;

glucose tablets, cake decorating stuff in the tube, etc. will help

keep his readings up when he hypos. An item to consider getting is a

regular glucagon kit so that you can actually inject him when there

is a serious emergency. That's what the ambulance attendants carry.

But you may not have time to wait for an ambulance to appear. These

things can go downhill very rapidly.

Susie

November 1, 2003