Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The Worry About Passing This Onto Children

I feel like I spend a lot of time worrying about which, if either of my two sons will have inherited this disease. It's fruitless to dwell on all the "what ifs" of life, but I can't help myself just the same.

I look at my two precious boys (ages 4 and 8) and I become racked with worry at the thought of either of them suffering with this.

Today I have been driving myself crazy because I found a white patch on my 4 year old's back. I didn't know that little white patches or vitiligo can be evidence of autoimmune disease until I read some posts here (great, something else to obsess over!). I have had a little patch on one leg since childhood and never thought that there was anything significant about it. I spent the day in the sun at the pool today inspecting my 4 year old's skin looking for more white patches.

I look at my 8 year old who resembles me so dramatically-- he is the 8 year old male form of myself. I always assume that whatever I have, he's got.

Am I the only crazy person here who thinks this way?

Sometimes I feel a little too consumed with worry about passing this on to my children and I don't know how to get out of this way of thinking.

Ella

I worry all the time about my three girls.

Triplets at age six. The thing that makes me worry most is one of them has had since birth some sort of minor stomach ailment or other.

This more than who resembles me is the source of my irrational fears. Since I believe that AS is so related to food and food absorbtion. Her stomach woes casue me some anxiety.

Don't be consumed but follow your instinct. Maybe guide your boys to a healthier diet now to avoid or delay woes later IF ( a very big IF) they have AS and its AS in all its aggravation.

My son has it already at 15 and if there is one thing that say over over to myself. " If I could do it all over again I would make sure my kids ate better when they were younger"
Once they hit the teenage years its not easy.
I try to present my kids with healthy things like pineapples and cabbage, try cooking with flax seed oil or coconut oil and they always say the same thing 'Yuck"
Even if they never get it, they will be far better off with a healthy diet for life.
I also believe my son may have celiacs disease which went undiagnosed for many years. If I had checked for that sooner maybe it would not have progressed to AS.
So be on the look out for Celiacs. One autoimmune surely will lead to another and if you already have HLA-B27 gene your chances are greater.
I hope your children will never get it, but if you are aware of it you can treat it early and have great success.

Hi Ella,

This topic comes up from time to time for good reason. I am now a parent and do not wish for my son to go through what I went through with AS. We always want the best for them...

I would agree with the prior two posters that a healthy diet could help pay future dividends. There is also new line medications coming out every so often and I imagine years from now they will have more answers.

Tim

Hi Ella,

You are not alone on wondering if your children may develope AS as they get older but they will have many advantages we never had before getting diagnosed by the time it becomes a problem. I was diagnosed just before my two kids were born who are now 21 and 20. I have an adopted son but have no need to worry about him and AS. While it does sit in the back of our minds we can not dwell on what may happen in the future or it will cause other problems with being to over protective of the children and not let them turn into the people we long to see them become. I have to admit it still pops into my mind from time to time but in twenty plus years neither of them have had many problems with their backs or joints other than normal childhood injuries.

I have taken time over the years to talk with each of my children and things they need to avoid so they can try not having an injury to their backs, like bending their knees when lifting, not jumping off the roof to beat someone else who is on the ladder to the ground and good posture, etc. They have also been taught to eat healthy foods and avoid additives.

Brent

I worry too, and I think my 10 yo is showing symptoms. Very frightening to see her pain, but I always talk to my kids about what I am going thro (on their level) and teach them the importance of keeping their guts healthy & strong. I hope to teach them so much more because of my journey and what may be in their futures. Teaching them to take care of their inside & outside. And their minds because you can accomplish so much more when your mind is healthy too.

...support & information are so vital because you never know when you'll find a nugget that may change your life for the better. If you act in fear, your kids will respond in a negative way to you, the disease & their future if they get AS. I try to focus on the good things each day & take one day at a time and to be a good example to them.

Hello Ella,
I have the SAME fear as you do and would NOT want my son who is now 10 to suffer as I have! He also has a white patch on his chest that he has had since he was an infant which does not show up unless he gets tan, it may have gone away since I never paid any mind to it. He has been complaining about his knees aching at night on and off for years now. I attributed the pain to "growing pains". I will have to talk to the Dr. about this next time he goes, it's only happens about every other month or so (usually at bed time so I don't know if he is just trying to stay up or what)...
I have an Identical Twin sister who would have the same complaints at night. She does not have AS, I have a brother who does not have AS thus far. (my sister and I are 28 and my brother is 20) So basically the condition IS genetic but my identical twin does not have it and we have the same DNA so their are outside triggers involved. But even the Dr's aren't sure exactly what they are. I agree with ALL above that their are scientific break throughs happening EVERY day!! Scientists are giving our condition a lot more attention then they did in the past! Also Keeping our children aware of safe sex practices is definitely a no- brainer but for us HLA-B27 positive or carriers getting chlamydia or any kind of infection in the gut could cause BIG problems. Trudi is right, I believe my son sympathizes with my pain and it is great to keep them informed and on a healthy diet! But I really would be making myself a mess if I was worrying about him getting sick in the future, I have to worry about myself right now so I can be the best Mom I can be and make sure he grows up right and doesn't start doing drugs or anything like that.


----J

It's nice to hear other parents weigh in on this.

While I have these nagging worries, I have to say that I am very good at keeping them to myself and I agree that nothing good can come of airing ones anxieties to ones children. But somethings I can't hide-- during a bad flare the way I walk calls attention to what I am experiencing-- I just can't hide it.

I guess this is more of a different subject, but I have had a hard time letting my children see the pain and discomfort I feel at times and I have tried not to draw any attention to it because I don't want to dramatize or frighten them. It's not always easy-- during my last flare (which abated with last week's Remicade than goodness), I was limping very obviously. I have talked to my children about my condition in very general terms and I have tried not to scare them. I was so saddened the other day when my 4 year old saw me hobbling along and asked me: "Mom, are you in pain?". It's like I don't want them to see-- don't want them to worry about me.

My 8 year old is very sensitive and I think my flare ups frighten him-- he seems togo over the top with hugs and "I love you mommy" and while it seems sweet I worry that it comes from a place of fear. Sometimes a flare up can even anger him-- he gets made that sometimes we can't go bike riding together.

Fortunately for all of us I am a bit militant where it concerns healthy eating so at the very least they will have that in their favor. I grew up eating fluffer-nutter sandwiches-- which probably didn't give me a great start. As an adult, I am a real foodie and have passed it down to my kids who enjoy cooking with me. My 8 year old is especially outspoken about food (is an obnoxious food snob) and refuses to eat fast food or processed foods (won't touch his school lunches-- you should see what hoops I jump through and what I send him with every day-- it's ridiculous). My 4 year old has less sophisticated tastes than his brother ever had and I have been finding creative ways to get him away from white food. We are definitely health conscious, environment conscious eaters. At least!

Still I worry. I am a worrier by nature I guess- not a great quality-- at least I try to keep it hidden.

Has anyone gotten their kids tested or HLA B27 just to know?

Ella

Hi

My kids are 17 and 19 and both been tested recently as my son is now in his 3rd bout of uvetis this year it only started in Jan ...hence the testing they are both positive :-/ my son had xrays on his back and they showed inflamation but rhuemy says as he has no back pain he dosn't have it (doubtful) My daughter has seen rhuemy as she has back pain, she is now awaiting MRI and physio. I suppose they are gonna get it as my mum had Chrohns and died at just 45. I guess at the end of the day if we are going to get it we will its all in the genes I guess..lets hope im wrong, try not to worry untill you know different :-)