I am 21 years old but was diagnosed at 16 almost 17. My symptoms began at 11. Getting this diagnosis so young was hard for me, but in some ways even harder for my mom. She like you researched everything. Every ounce of her soul wanted to fix this. To find a way to take away my pain. I am so thankful of all her knowledge, but at times it could be overwhelming to me as a teenager. All of a sudden this disease seemed all consuming in my life. I wanted to be the kid I was before stepping in that doctor's office. I was relieved to have answers but with my mom pushing so hard it seemed my entire life was about AS.

My mom is here with me writing this post. We would like to share some things we have learned along this path. These are just my opinions so please no one get offended.

Some of my mother's drive to fix me drove a wedge between us. Please don't get me wrong. I appreciated all she did, but I suddenly looked up and realized AS and my health was all we ever talked about. Your son is 13 and has AS. But do not let AS have him. Make this as small of a part of his life as you can. Be there to hold him or hold him up. Make raising him your focus, but don't make curing him your life's mission. Be the soft spot where he can fall and the person he can be grumpy with.

With that said an extremely restrictive diet is probably too all consuming for a kid to follow. It will make him the odd man out socially. It will add the stress of guilt when he eats wrong and then blame himself for his pain. I started to feel like my pain was my fault because of something I did or didn't do. That is a lot of stress for a teenager. And like others have said it may not be healthy for a 13 year old to eliminate carbs altogether. When I was 19 we tried a fast and I ended up passing out in class. Remember he is young. AS will take away so much. So do not add things to that list.

With that said my mom made a strong effort to include inflammation fighting foods in my diet and decrease foods that are known to cause inflammation. She did this naturally through meal choices. Eating healthy definitely helps me feel better. This is not a starch free diet but a healthy choice diet. It will create habits your son will be able to stick with.

Don't make having AS your son's master status. That means AS should not be the thing that defines him. When he or his closest friends describe him, AS should not be in the top three descriptors. This is so much easier said than done.

I found the best thing my mom did was help me to find balance in my activities. She taught me to prioritize my day so the things I had to do got done in case my energy ran low that day. She taught me to manage my stress better. And she does small things to make life easier.

And most of all mom wants you to know that you did a great job getting him diagnosed early. Now find a quiet place, ball your eyes out and say this is not my fault and I cannot fix it, but I can do everything I can to make his life great. There is nothing you can do to take this from him. All you can do is be there to help him find his way with this disease while retaining the things in his life that make him happy.