Topic: This is what is keeping me awake all night.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is almost 3:30 AM and I am having another night of anxiety. I went with my 23 year old son to see the endocrinologist about his diabetes (he does not have lyme) today. I wanted to make sure some questions were answered. The doctor is an idiot.
The doctor can't decide if my son has type one or type two. If he has type one he will eventually have to go on insulin. This is like waiting for a bomb to go off. There are some treatments being done to prevent complete destruction of the cells that produce insulin but he needs to see a research doctor in Seattle to find out about it.
This doctor suggested he be tested for something called MODY which are several genetic defects. She said if he has this type, it is a mild form of diabetes that does not progress to insulin dependence and it always comes from the mother.
She did not know the costs of the tests but I agreed to pay for it in hopes maybe that is it.
Upon getting home to the "trusty internet" I discovered the costs of the tests will be about three thousand dollars and it is not what she described. Mody does not come only from the mother and there is only one form of it which is mild which he obviously does not have.
Most forms of it are extremely rare, it runs in families and is passed from generation to generation. In other words there is a strong family history which we do not have. He does not fit it and there is certainly no point in doing expensive out of pocket testing.
So I am awake worrying if I can get to the lab and doctors office in time to cancel the tests.
I have been battling up hill trying to persuade my son to agree to see a good doctor in Seattle, one that is up to date on all the latest research, can properly diagnose what he has and the latest methods to control it?
That way my son can make an informed decision about treatment options and in the worst case scenario, there is closure. We are not just waiting to see what happens! This has been going on since November and is putting so much stress on me.
My son is a highly intelligent person that ironically was considering going to medical school. Why isn't he looking this stuff up himself?! Meanwhile it is his girlfriend that is making all the decisions for him. She does not want to be inconvenienced with diet changes or anything.
She has an aunt completely disabled by diabetes because she did not take it seriously. I had a relative that had both legs amputated. Isn't this something to take seriously now, rather than later when the damage has been done?
How do I sleep? I feel like I am watching him walk blindfolded on the edge of a cliff.
How do I get well when I am so stressed? I had to start Mepron while all of this was going on. My anxiety was so great, I thought I was going to fall apart. I know he is an adult and it is out of my control but that does not stop me from worrying.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
It's your son and your going to worry, you have enough going on with your own health. Take care of you, it's been a tough time for you. Things will work out for your son.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
thanks L in P I called the lab and cancelled the tests this morning. That is a relief because it would have been three thousand dollars for nothing. It would put us in the hole and make real treatment impossible.
It is just so upsetting that none of the doctors can be trusted. They don't know or care. What that doctor did was so totally ignorant and incompetent- it just threw me into a meltdown. We come across that type of doctor all the time with lyme.
I am still dealing with the bills coming in for my ER overnighter when the doctor insisted I was in heart failure. It was a 12K plus bill for indigestion. I said I felt fine and the doctor refused to let me leave saying my EKG was abnormal. It wasn't! My husband has to handle it because I can't.
Then my son's girlfriends resistance and ignorance is overwhelming. THe school he is planning to go to will put him 70 thousand dollars in debt just for the first year. If he developes neuropathy in his hands it will all be for nothing. We don't even know what his prognosis is because he doesn't know what type of diabetes he has.
It is like us trying to cut corners to save money and just getting sicker and sicker. If I had gotten tested and found out three years ago exactly what I was infected with, my treatment would have been completely different.
If I had known about a really good LLMD (which I still don't have) I would probably be well now. It is frustrating and depressing that we can't get what is needed. We try so hard.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
nefferdun, first things first, you need to change doctors for your son. You said he's an adult, that he is but, he's your son, and some 23 year old men have a mind like a 14 year old.
If he was really acting like an adult, he would be doing all the research like you said. For what ever reason, he seems to be depending on you.
I also had a cousin who lose both legs to diabetes, he didn't take care of himself.
If you do ever decide to have this test done, I would wait till you have a 2nd. opinion; and a new doctor.
I would tell the girlfriend to back off, you don't need that additional stress in your life.
I hope your son starts to understand how dangerous this disease is, I wish him all the best.
It's hard enough dealing with Lyme disease, and now you have all this on your plate.
Find a new doctor that can lead you both in the right direction!!!
If you don't take care of yourself, you wont be able to help your son!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i don't know about diabetes...but i know about sick adult children. i have one like yours who just doesn't do and two who don't belive lyme is real...even tho they still have t and i obviously am sufferening from the results of long term lyme
i help them when i can...when it doesn't hurt me too much. but they are adults...mine are much smarter than me...and often i just have to treat them like alcoholics and pray. until they are ready to deal with the problems it just wears me out and no good comes from it.
good luck. but you do have to put yourself first
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Since he is an adult, you do have to put yourself first. Time for him to take responsibility for his own health.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I agree. he is a grown up now, time to take care of himself. I also know what its like to be a worried mom.
I have type 2 diabetes, it hasnt been the end of the world for me. I suppose its different for everyone. I am pregnant now and on oral glucose meds and insulin at night. I check my glucose at least 6 times a day. Its not always a death sentence. Its not the greatest thing in the world either.
It also sounds like this has been going on a good while from what you describe, since november anyway. obviously I have no idea how sick he is, but sounds like maybe he is functioning okish?
How bad is his blood sugar or A1C?
It does sound like this doctor is no good. If your blood glucose is high regardless of type 1 or type 2 I THINK treatment wouldnt be too far off from one another.
Hang in there
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I also have to say that I dont understand people that are this age still need SO much guidance from their parents. Of course you still need your parents for some support forever, but what are you going to do when he is 30 or 40 or 50 years old? He has to figure this stuff out for himself at some point.
It sounds like he lives seperate from you. Its not like you can make sure he takes his meds everyday he has to want to do this ya know?
I would be HORRORFIED if my parents were deciding my medical care at 23.
I moved out at 18 had a baby and got married at 22. My parents didnt have to hold my hand at the doctor.
I really hope he takes control and gives you a break. sounds like you need it!!!
Good luck
Posts: 3905 | From USA | Registered: May 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
He is very mature in most areas. He held a 4.0 throughout high school and college and has been accepted to three of the most difficult schools to get into. He paid for much of college himself with a scholarship and a part time job.
He does a good job monitoring his blood sugar. I am not concerned about that. When he choses his own food he eats very healthy. He loves to exercise. So that is all optimum.
He is probably depressed dealing with this - who wouldn't be. I expect he is fearful. I know I am.
Like lyme disease I read everything I can get my hands on. I look up the latest research and developments.
There are trial drugs being used that stop beta cell destruction and would halt the progression of his disease. If this is LADA, a late onset type 1, he will be on insulin in less than two years without intervention. Currently he is on oral medication that stimulates his beta cells to produce more insulin.
Seeing the Seattle doctor does not mean he will be accepted for the trial. It does not mean he will even want to try the drug if the side effects can be serious. But it means he can make an informed decision.
I used to like his girlfriend but now I see her as highly controlling and dangerous. But it isn't really her fault. He needs to take care of himself and make his own decisions.
Finding out for sure what type he has gives him (and me) closure. Maybe not good news but it is better than waiting and wondering every day what is going to happen to him. That is unbearable.
He agrees that the doctor did not make any sense. I just talked to him and he agrees to make an appointment. When, I don't know as he has agreed before and his girlfriend decided a trip to AZ was more important.
Makes me mad too - so hard to keep my mouth shut.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thank you for the site steve. I sent it to my son.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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