Sibling Testing

[Red (aus)]

Hi, I have been talking to a lady who lives locally to me and had her son dxd a few months ago with type 1. Someone has suggested to her that it is important that she have her other children screened for type 1 antibodies and she has asked me for my opinion.

I personally haven't had my children routinely tested, although my son was tested after displaying many symptoms whilst ill, but I'd like to hear some other people's thoughts or experiences to give her a more rounded and balanced view than just my own.

My thoughts are that the testing isn't a guarantee that positive means yes they will develop d, or negative that they won't so for me that is a waste of time. I also wonder if I might treat another of my children differently, as if there was a time bomb inside them just waiting to go off and would prefer not to do that. My third reason is for the kids themselves, if they have the testing, they need to be told what it is and why it's being done, then of course they also need to be told the results and I worry that a positive result might impact on their emotional wellbeing. For those reasons it's a big no to sibling testing for me, but I also believe it is a personal decision, and others may have their own compelling reasons in the positive or negative.

[Sweetkidmom]

I haven't had my other daughter tested and don't plan to. But I would probably be more on the alert for early signs of diabetes (tiredness, loss of weight, eating, drinking and pee'ing a lot, which were the symptoms that got me to take Jess to the doctor.)

Until there is a useful and user-friendly treatment for a positive result (immunosuppression is not worth it, imho) what are we going to do with the information? It's not like a pap smear, where one can take immediate action, thus making it a constructive test.

Just my 2c worth :)

Kay

[cydnimom]

I guess there are a lot of different ways to look at it...

Do you want to know ahead of time if its going to happen and worry about it for the rest of your life, what are the possible triggers and are you going to impede your child's life by not letting them do this or that, or will it possibly keep your eyes open so you can catch it early enough and not allow your child to get very ill and possibly die.

Because I'm T1 (for 26 yrs) also I have always been paranoid, have poked my kids fingers on occasion and have always worried that my son, Ryan (just diagnosed Sept 30/05) would end up T1 because he had my blood type. My other son has my husband's blood type, so I've never worried as much.

I was enrolled in the TRIGR study, but because both babies came early (Ryan 8 wks and Cody 6 wks) they would not test the cord blood because they had to be at least 36 wks gestation. The point is I wanted to know. I don't know if it would have changed how I treated them, but it certainly would have changed me banking the cord blood (which I didn't), I did breastfeed to over a year, and that may change another new mother's idea of how long to breastfeed or not at all.

I believe there is a study that is still on now (TrialNet), but Cody doesn't qualify because I believe you have to be over 6 yrs (could be wrong), but I probably would take him.

Just my thoughts,

[wendyc]

Hi,
One of our 4 year old twin girls was recently diagnosed with T1, so we were encouraged to do the natural history study through TrialNet for her currently non T1 twin. As we kind of expected, the antibodies came back positive. Now, TrialNet automaticaly wants you to come back for a re-test to make sure the test wasn't a false positive but to also check insulin performance in the body. What many people miss is that once you go onto this phase, they want the child to do a glucose fasting test every 6 months, and that the trial lasts 5 years. For us, this is as far as we will go in the study, because the first thing you have to remember is that there is a little person at the other end of that needle. The second is that, ok we know she is at greater risks than others, so we will need to be more watchful (but not to the point of paranoia-trust me I've been there-testing the non-T1 in the middle of the night:eek: ). You have to decide if it's right for your family. The trials are doing wonderful things, and helping make strides, but don't feel guilty about not doing it.

[noelphobic]

I don't have other children and live in the UK where testing wouldn't be offered so it's not a question I have to agonise over. I was interested in what Cyndi said about worrying less about the child who was of a different blood type to her. Is there any reason why you believed that a child with the same blood group as yourself was more at risk of also developing diabetes? Also what do you mean about breast feeding? Hope you don't mind the questions!

Brenda
mum of David, 17, diagnosed May 04
Liverpoo, England.

[cydnimom]

Brenda,

The blood type thinking isn't "scientific" by any means. It was just my thinking that he got more of my genetic disposition (autoimmune diseases run in my family). He also looked more like me than my husband, etc.

With respect to the breastfeeding thing, there are studies out there that indicate that introducing cow's milk (or milk based formula) too early may contribute to the development of diabetes later on. I would have to do some digging to find more info, but that is a lot of what the TRIGR study is trying to prove or disprove as well. There are also studies that indicate that if you introduce solids too soon or too late that it may also contribute somehow. I don't know how "reliable" these studies are, but it kind of makes sense (to me anyway). Remember all of this is just coming from a diabetic mom who wanted to reduce the chances of her children becoming diabetic as well and by no means an expert or doctor! and not wanting to start a debate on breastfeeding or not.

[noelphobic]

Hi Cyndi

Thanks for your answers. I have also heard that breast feeding is supposed to give some protection. I have also heard the theory that there is something in cows milk that causes diabetes because certain areas of the world with certain types of cow have a much higher incidence of diabetes than areas that have different types of cow. It was presented much more scientifically than that but can't remember the specifics as it was a while ago that I read it!

I don't even know what my son's blood group is and only know my own because I am a blood donor!

[Sweetkidmom]

I breastfed both my girls, and both had breastmilk ONLY for the first six months. One became diabetic and the other didn't.

My money is on the theory that there is a genetic pre-disposition, and the cell destruction results from some (as yet unknown) environmental trigger. But I also think that many things can act as triggers, so if it's not the cow's milk in the first few months, it will be some infection later on. But I'm not a researcher either.

Kay

[hartpukas]

I, too, breastfed exclusively for the first year and my daughter was dx'd when she was 11 months. I feel there must be an enviromental link since we have no history of diabetes in either family including 12 nieces and nephews.

I am pregnant again - due in late March - and am participating in a study from the Univ. of Pittsburg (TRIGR study). It has to do with the cow milk issue that you all have dicussed. Should be interesting and I kno I look forward to the day, as all of us do, that they are able to figure this all out!:confused:

[cydnimom]

There was no history of diabetes in my family when I was diagnosed either and we looked back as far as we could. I think you have to look at the greater spectrum of related autoimmune diseases that may run in families, not just diabetes, when looking at where the genetic predisposition may have come from. Other autoimmune diseases could be celiac, hyper/hypo thyroidism, rheumatoid arthritis (and more).

There definitely are environmental factors, but finding them is the big question.

[Melanie]

I breast fed my children all until they were 2 years old. that is when my daughter Rayana was dx'd. I am pregnant now. I will breast feed this child also but I'm just wondering if that really does protect because of my situation. My son who is now 7 has been wetting the bed and has lost 2 pounds. He was always thirsty all the time so I can't really say that that's a sign. He is going in today for testing, if it comes out that he is diabetic that will really make me wonder about the breast feeding theory.



Melanie(mom of Rayana 3 dx'd@2)

[hartpukas]

I agree with you Melanie. Breastfeeding is a great thing and I plan to do it with my next child, as well, however the diabetes "shield" it is suppossed to represent may be questionable. Maybe it provides the added protection for certain babies however if there is a genetic link mixed in then it may not.?

Diabetes is four months new to me so I am soaking up all I can and find it all so fascinating as well as frustrating. If you are interested in the TRIGR study since you are pregnant here is a link to the website for further information: http://trigr.epi.usf.edu. Evidently, to be exact the study is to help determine whether delayed exposure to intact food proteins will reduce the chances of developing type 1 diabetes later in life. I believe that cows milk is only one type of an intact food protein.

Good luck with your son. Please provide an update with what you find out from the doctor. ~ Heidi

[BrendaK]

I'm sure that breastfeeding does protect against lots of things, maybe even diabetes. But breastfeeding obviously does not give 100% immunity to the disease. My son was breastfed until he was 7 1/2 months old -- he quit nursing because he started showing signs of diabetes -- he was so thirsty and I couldn't provide enough milk for him. He was diagnosed 6 weeks later. So, I am glad I breastfed, but I'm also glad I wasn't counting on that for immunity to this disease.

On another note -- our family is in the Trial Net Study. My husband and youngest son (age 2) who do not have diabetes tested negative for antibodies, and I (who also does not have diabetes) tested very positive. It's all quite interesting. My mom and my son are both Type 1, and I have the antibodies, but do not have it. I'm thankful to be able to be a part of such a great study that can hopefully find more of the answers to what exactly causes diabetes.

[hartpukas]

Brenda ~ I believe it was you that directed to me to the TRIGR study, thank you very much for your guidance! I am looking forward to being part of the study and participating in such a worthwhile cause. :) Heidi

[Amy C.]

The benefits of breastfeeding are so vast. Please do not consider giving this up for your next child. My son was breast fed for one year and developed diabetes. I question the validity of the statement that breast feeding protects against this disease. It does provide lots of other benefits.

[Ellen]

My son was breastfed until 18 months. He was diagnosed at 15 months, however, he was given cows milk based formula in NICU at birth and several bottles over the next month because the first pediatrician instructed me to nurse him and then give him a bottle. Sigh. Then I discovered La Leche League. I nursed my next child for 3 years and she did not have any direct cows milk for at least 6 months or more...but I did not refrain from consuming dairy products.

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.

[hartpukas]

Wow, Ellen. You bring up some of the exact points that I have discussed with my husband. Primarily, I question the idea of having such invasive blood draws every three months and my new baby (just found out yesterday he is a boy :) ) feeling as if he already has an illness due to all the office visits he will endure - on top of the already scheduled infant doctor visits and vaccine schedules that all new babies go through.

But then there is a huge part of me that just lets go of all other thoughts and realizes that we can contribute to research by being involved in the study. There is a lot to consider before making a commitment to join such a study and I appreciate your points as we all must consider the implications of our decisions.

As far as sibling testing goes, I know someone that has a daughter with diabetes and a son without and she says she tests her son blood sugars once a month and she says it takes all of her strength not to test him more often because she is so concerned that he will develop it. ~ Heidi

[Melanie]

Heidi thank you so much for your direction to TRIGER I look forward to participating in that study. It turns out that my son is not diabetic so I am very releaved with the resaults.:) Thanks again!

[bbdebs]

I have two other older children but I don't plan getting them tested for pre- diabetes or antibodies.

I have used the blood glucose monitor on them once out of curiosity (and fear!) and used urine ketone testing strips on my older childs nappy but I'm just going to watch for signs now and deal with it if anything happens. I don't want to live 'fearing the worst'.

My 13 month old son, diagnosed 2 months ago is still breastfeeding. He's never had a bottle of formula or cows milk so it didn't provide any diabetes protection for us. My older two who were breastfed for 6 months and 10 days respectively don't have diabetes. I think if you chose to/ have to formula feed you shouldn't feel guilty. Pre diagnosis my son was never ill - no tummy bugs, fevers etc. so I don't even have a wild guess at what triggered the diabetes.