Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you think I should do?

Ok you have met both me and my son Jake.
Trying not to monopolise this site but I am concerned.
Jake has had a lot of trouble walking yesterday and today.
He is in conciderable pain but tries not to say anything as he sees me in pain.
Should I take him back to the doc? I am quite worried.

Hi AG,

I started to leave you some advice myself when I realized that I really shouldn't even bother for two very important reasons: 1) I don't have children myself, so I haven't been through anything like this and thus have no practical experience upon which I could base an answer. 2) There are several parents here at KA who either have kids who also have AS or who have gone through the same thing you are going through right now--the uncertainty of not knowing whether or not a son/daughter had AS while seeing enough signs to make you think s/he might. I'm sure that some of those folks will see this post and will provide you with much better information than I ever could have.

If no other parents have answered your post within the next few days, I would actually recommend that you post it again here in the #1 forum, but with a different subject line. If you do need to re-post it, just be sure that the next subject line says something like, "Need advice on son possibly having AS," or heck, anything that mentions you are looking to talk to folks about kids and AS. I think if you do have to re-post, adding a subject line of that type will result in plenty of responses from parents.

If you don't want to wait, you could always try sending a PM to a couple of KA members who have kids who have either AS or another form of arthritis. Sassy and Ladybuggie are both absolutely terrific and incredibly nice people who will gladly help you if they can. Neither of them are seen around these parts as often as they used to be, but both usually manage to at least pass through in lurker mode and would thus see your PM.

Finally, while I know you are looking for specific advice right now, if you want to try to find some general info on kids and AS, you can use the advanced search feature to comb through the KA archives and try to locate past threads on the topic.

Good luck, I know this is a subject that can really stress you out.

Brad

Thanks Brad.
I am happy to wait.
Just feel like the doctors treat you like a hypercondriact (sp?) sometimes and like they are sick of seeing you.
My doctor hasd been great but it's just something I cant help but feel.
Thanks for the advise on the change of subject line.

Hi Ya,
As I was saying to Jake my problems started when I was about 7 so I have a good idea how he feels.And my Daughter has B27 neg blood so I keep a carefull eye on her although she is 29 now I still worry.
I would suggest you take Jake back to the Doctor and ask for him to see a Rheumy and to have tests.A scan or xrays wont show much up at hes age but they can test hes blood for inflamation its important that you find out if he has AS or RA now while he is young so he can get all the help at the most important time.Dont worry about what the Doctor thinks about you going back its Jake thats important not him.He seems a very bright child and is very inteligent and a pleasure to talk to. The advantage he has is that you have AS and can spot the signs and get him treated.

Hope this helps you to decide.

Kevin

Thanks Kevin, yes it does help.

Hello

My babies are all quite little still. My 6 year old is always complaining that her legs hurt. I am assuming this is just growing pains, she's a very gangly little thing and seems to be having a growth spurt at the moment. Never the less, I still hear alarm bells in my head telling me to keep an eye on her. If, like you, I felt that she was in constant pain and it was quite severe - I would want to get her tested.

Nothing talks like money - whether you have any or not - you could say to the doctor you are so worried about your son that you would pay for the tests to be done if necessary. That might send the message home to him. Just a thought. I find I like to arm myself with a plan to combat the doctors deflection techniques while I have a clear head at home!

You must be very worried and it's not easy to know what to do for the best. Not to mention being frightened if you are proved right. It's horrible but whatever happens you can face it together.

Will be thinking about you.

Thanks Tinkerbell, so supportive as always.
You are like sunshine on a rainy day.

Get me umbrella out then

Has been pouring for days and flooding here.
Tears have been plentyfull also.
mind me now you. LOL

Thanks so I make you cry