Should we test our daughter?

Our son is 5, he was dx'd on May 28, 2009. Our daughter is almost three (bday in Feb). My husband and I are trying to decide if we should have her tested for the genetic markers of T1. Partly because we are paranoid, we get anxious anytime she has a bathroom accident. She has been potty trained since she was 27 mos old, so quite a while and normally does REALLY well and only wears a pull-up overnight. However 2 days in the last 2 weeks she has had multiple accidents in day. Then the next day, she is fine. The first day this happened, I tested her and she was 100 but it was not too long after eating, so I didn't think that was bad. Yesterday, I did not test her BG. (She never fights BG checks, cuz then she is just like her big brother.)

On a side note, I'm sure my kids would think it would be pretty cool if they both had D. Sigh. John just kept asking after he got his green pump, when Anna was going to get a pink one.

So anyway, I have always been against genetic testing because if she is positive, I will just have the cloud of worrying when it will kick in hanging over our heads. I know the symptoms so I believe we would catch it before she got into DKA. But would we feel a lot better if we just KNEW. If it is negative would we not worry about this at all? If they don't have the markers, I think there is still a small chance that they can develop T1? Maybe I remember that wrong?

What have you all decided on this?

Let me look at this from an outsiders view. I'll tell you right now that I don't have children but I can be empathetic.  It sounds like you are already have a cloud of worry handing over your head. That is completely understandable, I know I worry a lot about the prospect of even having kids, much less would they have diabetes or my other conditions too. I could as my mom what she thought if you want. She got my brother and sister tested for a clinical trial.

What may help you out more then anything in making this decision is to get some genetic counseling, or just some regular counseling on the subject. Counseling can help you arrange and understand you feelings and thoughts, and help you make the right choice for you.

Thanks Stilledlife,

I will probably talk with my counselor about it. I have always been very comfortable with my decision until this last weekend. I think my biggest thing right now is that yes, there is some cloud of worry there - but I make it more like "Yes, my daughter could be hit by a car at some point." kind of worry. If we get her tested and it is positive, it will be more like "Is today the day she will get hit by the car?"

Your point though is a good one and I have a friend who has had genetic testing done for her son (for muscular dystrophy), but I hadn't thought to call her to talk about it.

Becky

Hey, Becky,

Our son was dx'd in May 2009, and we were given information at that time about a "sibling study" that was being conducted in our area.  The Panda Study tests siblings of Type 1 children for genetic markers and indications of onset, and also tracks them over time to gather information about development, risk factors, etc.  We left the decision to our older son who was 10 at the time; he chose to partiicpate in the study, and we were informed that he was not at risk.  Our younger son was 5 at the time, and we decided he was not ready for the process of having four vials of blood drawn that was necessary for the testing.  When he is a little older, we will give him the option of participating or not.

Because a child has a genetic marker does not mean that T1 is inevitable.  Not everyone with the marker developes T1; it has to be triggered by something in the environment.  For me personally, more information is better.  Knowing that our older son is not at risk eases my mind.  If he was at risk, then I would watch him more carefully and do occasional BG tests so we could catch it sooner if he started developing T1.  Also, I think as we begin to understand more about what triggers T1, I think we will reach a point where we can say, "Yes, this child is at risk, AND s/he can avoid developing T1 by eliminating XYZ environmental trigger(s)."  Even now, I have enough concerns about cow's milk as a possible trigger for T1 that we have chosen to severely restrict it from our family's diet. 

It is a difficult decision for a parent to make.  Whether you chose to test your daughter or not, I know that you have her best interests at heart.

Blessings,

Mo

 

Our younger daughter's name is Anna also, great name! 

 

I asked our girls doctor when her sister was dx'd. I guess maybe it's wrong but I don't really worry about Anna, maybe I will as she gets older. Ava has always seem fragile and very slight. Anna is our linebacker, and seems so much healthier. That's horrible science, but it lets me sleep at night.  Maybe it's because we caught Ava so early on that she wasn't that sick, and we now know what to look for. 

 

I guess I just don't worry about it with my Anna, not yet anyway. 

Hi,

My oldest son was dx'd when he was 8years 9 months old (10 years ago) and he was REALLY sick,he was in PICU for a week.

Every time my younger 2 kids would get sick I thought they were getting T1 diabetes as well.

My youngest son is  8 years 7 months old (almost the EXACT same age as his brother at dx)

My 8 yr old who was just dx'd last month also has autism and other disabilities.

But when our kids are dx'd I think we forgot how different they acted.

It was VERY obvious what my sons problem was,he was VERY thirsty and tired and he lost 7 pounds(he is the size of a 5/6 year old anyhow cause of his disability)

My younger kids were in the TEDDY study and neither of the 2 had markers for it.

I know how stressful it is when the sibling gets sick,you worry they will have it as well,BUT I am sure you will just know this time around

My younger son was only in the ER overnight,not in PICU he was not NEARLY as sick.