Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group testing kids for HLA-B27

When my Wife first told me that she was pregnant, 2 things went through my head. HOLLY $#}T Im gonna be a DAD was the first. and the second was What sort of lifestyle have I sentenced this poor kid to? Since day one I have worried about wether or not I have passed along this marker and possibly this disease to him, and for the past 3 years now I have wondered how soon I should get him tested, but no matter how much I argue with his Primary, she says they wont test him till he's 16! that seems to me like they're cuttin it a little too close. I know its diffrent for everyon but I got Tendonitis when I was in the 5th Grade, back pain since sophmore year, and problems with my knees and shoulders since junior high. Not to mention the other symptoms that I had when I was a teenager, and I wasnt diagnosed till after my freshman year of college. I know the stats, and all the percentages, and that he might not even get it all (God willing), but if he does I want to let him get a jump on it ASAP. Obviously 3 is a little early I know lol, but I am curious as to what others have found about diagnosing their children. I want to give him the chance to beat it early and be more informed than I was, but the docs dont seem to share my sense of urgency (Go figure)
Thanks
Mat

Hi, Mat:

The doctors might be more right for not testing. I would ask the obvious question "what would you do if one of your children tested positive?"

The answer might mostly depend upon who you are: A doctor might not know what causes AS, so would not know what to do about a B27 positive child to prevent AS or treat symptoms. In fact they could even make things worse.

Our general consensus has been to wait until there are symptoms, since the overall probabilities are not very high. Certainly, close observation is very justified; antigen testing should wait.

Best to You, and family,
John


"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

Hi Mat,

It seems to me that it isn't worth the energy and angst worrying about whether or not your child will develop AS. If early AS symptoms develop, then it's time to take action. Otherwise, you'll work yourself into a big lather every time your child complains about a sore knee, back, neck, foot, etc. And, inadvertently, you might pass on your concerns or limit their activities unnecessarily.

Best of luck,
Cat

Hi Mat!

I also was in the same predicament as yourself and wondered should I or shouldnt I. So I decided out of curiosity I would see if my three children like I have the gene. Now I didnt go to a doctor asking for it I just waited until my children needed a blood test for another reason and just asked if while they were there could they test for the gene.

My eight yr old daughter is yet to need bloods taken so I havent worried about having her done, my four yr old daugther had hers checked over a yr ago and that was negative and my three yr old son had bloods taken for liver problems and his test came back positive. Since his test I havent spent one minute worrying about him being positive....why should I when there is still such a small chance that it will actually develop into anything. I dont believe having AS as being some kind of sentence even though I have it and it limits me. I see it as one of many obstacles life deals us and that if we all try to see the good it will help us manage. I try to remain positive with all situations which can be hard but rewarding.

Now that I know my son is positive for the gene all I will do is see how he goes. If he gets recurring persistant symptoms that suggest he has AS then I'll have a head start on a possible dx but I will not stop him from any normal activities that other children participate in or cushion him in bubble wrap. He will know his limitations and together we will just live life and not concern ourselves with the what ifs.

I think what we need to remember if we are HLA-B27 positive and want children or have children is that just because you may pass on the gene does not in any way mean your children will progress onto AS or other illnesses.

Do what you believe is best for your child first and ask yourself no matter what the outcome does it or can it really change anything at this moment.

Goodluck,
The worries of parent hood never end do they..
Sal





The most important questions you will ever answer are those that your children ask you.

I have an extreme fear of my son developing AS. I have never said anything to him about it because he is only 6. He said his back hurt once and I was terrified, but I didn't let him know I was. After a few questions I found out it was because he fell out of the top bunk of his bed. My sister has AS and her daughter is 12. I worry about her too. It's hard to put the thought of either of them developing AS in the back of my mind, but I live with the hope that they won't ever have to deal with it. I have come to the conclusion that I will stop worrying (as much as I can) unless signs of AS show because it is true that you can treat them different and over react because of your own fears.

Amanda

Hey Mat,

My experience with talking to the doctors about having my kids tested is the doctor siggested waiting to see if they developed any signs of having AS first. She felt with the experience of having the disease the signs are easily noticed by us. Her reasoning was insurance related saying the insurance companies could later deny them benefits if it were found they were in fact B27 positive at their young ages of 16 and 17.

I am fairly sure my son has inherited the gene from the similarity beteween him and myself at his age. I have cautioned him about horseplaying and rough contact sports where he may get an injury but have not told him he can not participate in any of them. My daughter complains with her lumbar spine and hips at times, but it does not go on for an extended period of time. At 17 and 18 years old both are old enough to see and know what I go through as far as pain and being able to do less and less.

For now after speaking with the doctor and knowing the insurance companies are trying to develop a data base of health records to make it easier to put up someone's medical histories for doctors (or so they say) that I have to agree with what the doctor said and not have them tested until they have some type of symptoms. Even though them getting the disease would be very bad to me, it would be worse if an insurance company denied them benefits causing them from getting the help they need.

Brent

Sandy

Hi Mat,
We just found out a month ago my oldest son Noah has AS. (He just turned 16 December 1st.) He wasn't tested until he started showing ongoing symptoms. Now we are, or I should say he is debating whether or not to start on medication. We have discussed the side affects and he wants to think about it more before deciding to start it. (The rheumy wants him to start with sulfasalizine) He is continuing all his weight training and conditioning in high school. He also plans to still join the baseball team and join track and field this spring. I will leave the decision of the meds to him as I feel he is old enough and intelligent enough to decide that for himself. He has an advantage in that he has grown up with an uncle who was diagnosed at 14 years of age (now 48) and the things his uncle was told back then that were bad for him, that we now know are good things. (like to keep moving) And that his mother also has the disease.
It is heart wrenching to find out one of your children has the disease, but I know that we will help him deal with this as he needs to.
It sounds like you are a loving parent. And I hope that by the time your child is of an age where AS could rear its ugly head, that they have found a cure or atleast a better treatment for it. And if by some chance your child does develop AS, I know they will have a loving, informed parent to help them deal with anything that comes along.

Best wishes to you and your family.

Pam

My boys, Noah & Isaiah

Thank you all for your posts and best wishes to your families. I kinda figured I was making too much of this way too early. Although the Bubble wrap idea sounded good at the time... I dont think I can find his off switch long enough for him to sit still so I could wrap him. I'll just have to keep an eye on him as we go, and keep him healthy as possible so that he'll be ready to go when the Pats Draft him in the First Round (no pressure Jake). I do like the idea of waiting for the Dr's to do other blood tests and having it doen then as well. Thank's again for the suggestions, and just rember to keep your eyes peeled for Jake on the cover of Sports Illustrated! lol
Mat

My kids were just diagnosed with AS. Are you saying that they will never be eligible for insurance? How can a person pay for all the expenses?

Hi Karen,

From my experience most insurance companies have a pre-existing condition policy in effect for new subscriber's. When I switched insurance companies during a job change I had to prove I had not been to the doctor for a period of two years for my back problems before they would cover my treatment. Luckily for me during that time I usually went to the doctor for other things like sinus infections, colds or flu like symptoms and the doctor would relate the back and joint pains to those when he prescibed pain killers.

Prior to that I was on eight prescription drugs everyday for seven years until I stopped taking all of them. When I needed help for my back I had records showing two years and one month and the insurance company paid. Some people I have talked to have said their insurance pre-existing condition policy is for one year prior to being insured. The best way to find out is to read the paperwork from the insurance company.

Brent

Sandy