Thursday, July 27, 2006

Looking for Trouble?

Today I received a flyer announcing a screening for families of those with Type 1 diabetes. It takes place at Joseph's diabetes camp site on the day we arrive.

This Sunday.


After a couple of phone calls, I've confirmed that test results will not be shared with insurance companies. And, participants who test positive will be given the option to take part in diabetes prevention studies involving the use of immunosuppressants.

Ryan and I are thinking about doing the screening-- after all, anything that might help lend a better understanding of this disease is definitely worthwhile.

But what about Evan?


Here's where it gets hard.

You see, if they find out she's not making antibodies to her beta cells -- though a huge relief -- this doesn't mean she won't make antibodies in the future.

That possibility still exists.

And if she tests positive -- though she'll be at greater risk of developing the disease -- there is no guarantee that she'll actually become diabetic.

So, what happens if she tests positive?

I will lose it. Period.

Even if she never develops the disease, I'll always be petrified that she will.

Always waiting for that shoe to drop.

Now, would a positive result make us any more sensitive to the symptoms of diabetes than we are right now?

I can't imagine.

Would I want my toddler to participate in a prevention study that required her to take the same immunosuppressants given to transplant patients?

No. Absolutely not.

So is there a compelling reason for us to have Evan screened?

Any thoughts?

(Oh, and is it just me and my "fear filter," or does the TrialNet Wizard look as though he's wielding a sickle?)

19 comments:

Scott K. Johnson said...

Hmmmmm.

If it were me in your position, I don't think I would have her tested.

Like you say, it's not going to make you any more aware or sensitive to the symptoms.

In that way, I don't see any good that could come of it. The possible benefit of knowing that she'll NEVER develop type 1, versus the mental trauma that you will experience if even the possibility exists? I don't know - I guess it's just not a very good benefit/risk balance in my perspective.

And while I'm a big proponent of studies, and will contribute all *I* can towards research, it's different when dealing with your kids.

And I'll mention again that I just melt when I see pictures of your daughter.

Anonymous said...

Hi - I'm a lurker with a 10 year old daughter dxd with Type 1 almost 3 yrs ago and a 6 yr old non-d son. I am always watching him to see if he drinks more water than usual, goes to the bathroom more, eats more or less than usual.

I believe that this is part of the balance that we all do everyday - quietly vigilant. Prepared for the moment but not being controlled by the waiting.

You always seem to make wise choices - I love your blog!

Caro said...

Sandra -

Without wishing to depress you, or anyone, won't you always be worried about Evan getting diabetes? Because all parents always worry about their kids, because you already have diabetes in the family you're aware of it...

I still often think about my brother getting diabetes. He's an adult, older than me, but I still wonder about how he would cope if it happened to him. I can't help it.

That said, I suppose the real question is what value would you get from knowing anything? You've already pointed out the results give you no concrete information either way, and that you wouldn't want Evan participating in trials with such heavy duty drugs. So where is the gain?

I can't answer the question for you, these are just my thoughts.

Caro

julia said...

Well shit. I talked to the Trial Net guy when I dropped O off at camp last week. I'm going to have blood drawn when I go in to Joslin next time. I was planning on having Boo done, too. I didn't know that part of the treatment plan was immunosuppressant drugs. Fuckfuckfuckfuckityfuckfuck.

Part of me hates the idea of burying my head in the sand and hoping it won't happen. I am already a neurotic freak about watching Boo for any signs of diabetes. I honestly don't know if it would be better to know or to not know. It's a damned if you do, damned if you don't kind of thing. I hate those.

Nicole P said...

Sandra -

The fear. It's horrible. And it extends beyond parents with their children. When my niece and nephews arrived, I spent a good deal of time teary-emotional that someday they might get my "bad genes" and be diagnosed. I also keep a close watch when I'm with them, and through conversations with my brother and sisters in law about their health and pretty much freak out at the slightest hint of symptoms. I worry, worry, worry, all the time, time, time. Someone said to me once - even if they are diagnosed you DO realize it's not YOUR fault RIGHT? Well, sure, I realize it, but it won't make me feel any less guilty or sad if it does happen. I can't even imagine how it must be when you're a parent.

I don't think anyone can answer this question for you better than you can answer it yourself. I do know that some of the moms who have diabetes on the OC have had to face the choice during their pregnancies and I would imagine that some of the parents have faced the SAME question you're facing now - but even their perspective doesn't answer the questions you have to ask in your heart.

Do you really want to know? Given your vigilence - is it necessary? How do you explain the results to Evan - and when?

Does the benefit outweigh the consequences in this case? I mean, would you want to decide about giving her auto-immune supressants given the side-effects/risks? And if you did - what are the exact benefits?

I know you'll make the right choice FOR YOU. If it were me, I simply couldn't bear to know. It would crush me if the answer came back yes - and I wouldn't feel at all relieved if the answer came back no...

I'll be thinking of you.

All the best, N

Sandra Miller said...

Scott-

Thanks for weighing in on this.

I really wish the test could tell me that she would never become diabetic, but my impression is that it can't.

I do know that others have had their non-d kids screened, and I guess I was wondering if there might be some factor I'm missing.

Anon-

Thanks for de-lurking and sharing your thoughts. You're so right-- we are always vigilant.

I think that if we had a positive result, it might tip the balance you describe-- instead of being prepared, we would always be waiting for that Moment.

And Caro-

Don't worry about depressing me-- I do enough of that myself :-)

Again, test or no test, the fear that Evan might become diabetic will never go away.

But as long as she hasn't been screened, we won't have the additional (and heart-wrenching) X % increased risk that she'll get it.

Julia-

Absolutely agree with you. A huge fear for me with this is that I might just be "burying my head in the sand" here.

And I've never been fond of that approach.

But damn it, as much as I want to KNOW, I just can't bring myself to do this. Not when the best answer to the question of whether or not Evan has antibodies would be "not now, maybe later."

Nicole-

Your description of the "fear" and it's effects is exactly right.

The more I think about this damn test, the more opposed I am to having it done.

And yet, I have to admit that a part of me feels guilty for feeling this way-- as if I'm being irresponsible.

Regardless, I think I can live better with that guilt than I could with the devastating consequences of a positive result.

met said...

HI there -
I am in the same boat.
My son, Tommy, is 5 with d. My older son, John is 7 1/2 and Tom's endo talked to me about the trail net too. I am 38, and I would be tested too. But - I really do not want to take any drugs IF there is a CHANCE that I may develop d.
I am going to cancel my appointment and wait to see what the research is in a year or 2. Until them, I randon test, check urine once in a while, and keep my order on hold for a straight jacket.

Kelsey said...

After I got diabetes, my family went down to UCLA to participate in a study, which would let us know if my younger brother and sister had a predisposition for diabetes. We pulled out of the study after one day. My parents realized that knowing that Rob and Sarah could "potentially get diabetes... one day" was ridiculous. Why worry for something that may or may not happen?

Of all the diabetics I know, none of their siblings, or even immediate family have it too. I know it happens, but it's not common.

Let us know what you decide to do. It's an interesting issue.

Rachel said...

Very difficult decision there. It's something that we've discussed about having children - if we have the opportunity to find out early in their lives that they may develop type 1 like their father, do we want to know?

I'm sure the worry never goes away. My friend has three sisters with type 1 (she's the only of her father's children who does not). Her younger son recently had one of those nasty illnesses they say can spark off type 1 - so she's definitely keeping a close eye on him these next few months.

Anonymous said...

I posted this at the CWD Forums:

As for sibling testing, it's a very personal decision but one that should come with lots of information and thought before consenting to participate. I believe as parents of children with diabetes, we are accutely aware of the symptoms and would recognize presentation early. Receiving news that a sibling tests negative is joyous but you must know that result is only good for approximately one year and the test needs to be repeated annually. Ponder these questions:

1. What exactly will you do with the news/information that the now healthy sibling is multiple antibody positive? Will you see that child with a black cloud hanging over his or her head?

2. How many invasive tests are you willing to put your child through? Invasive tests will be requested such as the IVGTT (intravenous glucose tolerance test) where they bolus glucose directly into the vein and force a sharp rise in blood sugar in a person without diabetes, and then they draw off blood every certain number of minutes to determine FPIR (first phase insulin response). Is it fair for a minor to be subjected to such invasive procedures while otherwise completely healthy and not able to make an educated choice of his/her own?

3. Are you willing to offer your child to be in a research study of experimental protocol whose long term effects are unknown (i.e. Kevan Herold's monocolonal antibody studies or Staley Brod's ingested interferon alpha studies)?

4. Will your now healthy child perceive him/herself as sick since the child is being subjected to invasive tests and probably already fears getting diabetes like his/her sibling?

5. What psychological counseling and preparation will you seek for the individuals and the family participating in studies such as these? Generally the studies offer little or none, so you will be on your own to handle the impact of learning your now healthy child is at increased risk of getting diabetes but no known timeframe as to when or if the child will present with diabetes.

I beseech you to think about these questions long and hard before offering your child's blood for these studies.

Ellen

Sandra Miller said...

Met-

Boy, do I hear ya on the straight jacket.

Kelsey-

Thank you for sharing your very reassuring experience.

Rachel-

I cannot imagine the challenges your friend and her family must have faced caring for three children with type 1.

Ellen-

Believe me, I have thought long and hard about everything you describe here.

In writing this post I was looking for the thoughts of others on this issue-- both pro and con -- in order to be sure that I haven't missed anything.

Apparently, I haven't.

I do thank you for sharing your comment as it outlines quite eloquently all of the compelling reasons not to have Evan (and frankly, any other non-d family member) screened.

julia said...

After reading all this, I think I'm going to pass, too. I don't think I can do any of it.

Megan said...

I personally think that knowing whether Evan has pancreatic antibodies or not would only be a good thing.

1. The antibody test itself is just a simple blood draw, not terribly invasive.

2. If you don't know whether she has the antibodies, or if you find out she does, your level of worry will be the same either way, would be my guess- both are fear of the unknown. However, if you find out she doesn't have the antibodies, I suspect that would relax you a bit.

It's obviously your decision, but it's just my two cents. I would want to know.

Penny said...

Sandra,

Just putting in my two cents too. This is just what I would do. I wouldn't get the test.

1st, no matter what results I would get, it would not make me worry any less.

2nd, if the results say that Holden tests positive, then I would just worry more, and I already have enough worry in my life.

3rd, if I got results saying Holden might develope D, what would I do with them? Nothing. I certainly would not put him on immunosupressants just to see if it worked.

4th, having a child with D, I know the early warning signs and have a meter always handy to test if I have any suspicions about Holden.

If Holden, God forbid, does ever get D, I will probably pick up on the symptoms right away. I think knowing he may develope it someday won't really help diagnose it any earlier.

So, to me, what would be the point?

One more thing to ponder. If Holden tests positive, what effect will it have on him? Will he always be waiting for the other shoe to drop knowing he can't really do anything to stop it?

No, I wouldn't do it. I don't think it's putting my head in the sand. I think it's just living life and dealing with what life hands you, when it hands it to you.

d double e said...

Sandra-
I may be weighing in late on this, but this issue has come up again recently in our house because we met a family at a JDRF fundraiser with 2 boys both with Type 1, and their mom was ADAMANT about getting the testing done.

We just talked with our endo again about it last week... if there was something that could be done with the information to stave off the diabetes in Thing One, if he was predisposed to having it at all, we'd totally get him tested.

But there isnt anything they can do to stop it.

So in the meantime, we will just keep watching to be sure he isnt drinking too much water or peeing too much.

And of course, worrying.

Jessica Jones said...

I am totally with you - I don't want to know. I know the symptoms, I will worry when I see one. My son just turned six - my husband was a T1 before he was born, I became a T1 when he was 9 months old. My son is healthy and happy. I believe in God. That's enough for now.

Sandra Miller said...

Dee-

Thanks for sharing your experience with this issue.

You've hit it dead on-- if they could do something to stop it, then there would be no question.

But as you say, they can't.

At least not yet.

And Jessica-

Thank you for sharing your thoughts as well. I can't imagine any of us missing the symptoms of diabetes should our non-d children experience them.

Here's hoping they never appear.

Shannon said...

We've had Jessica and Jacob screened. Negative results thankfully. Brendon's endo suggests doing it every 3 years.

Yes it would be heartbreaking to find that they have it, but whether we screen or not, we'd find out one way or the other. I'd rather find out sooner before they develop ketoacidosis or before symptoms get out of hand.

Sandra Miller said...

Shannon-

As I mention above, I just can't see any of us missing the symptoms of diabetes. Any time Evan seems to be drinking more than usual -- even if it's hot as bejeezus outside -- I test her.

Also, when I asked Joseph's endo about having Evan screened a year ago, her feeling was that the test would give nothing definitive-- because even a positive result doesn't guarantee the child will become diabetic.

However, she did say that a positive result would definitely impact a child's insurability down the road.

This was one reason I considered the TrialNet screening-- while insurance companies can gain access to medical records, (according to TrialNet) their test results are legally protected from these companies. Though the researcher I spoke with did say that you'd still have to be careful about sharing screening results with your child's doc because then they would be part of their medical record...

Bottom line-- I know that Evan is at an increased risk, I don't want her taking a test that tells me (and insurance co's) that her risk is much greater.

Because, as Ellen points out in her comment, I'll always see that black cloud hanging over her-- knowing that there's nothing we can do to prevent her from getting it.

And what if she test positive and never gets it? Or becomes diabetic as an adult?

All that wasted time worrying and waiting for it to happen.

I don't know. For me, it's just not worth it.