Thank you all for your advice a few weeks ago. After reading all your posts I met with his therapist and spoke with his teacher. Everyone had always been under the impression that he was improving, he would get better, a little worse, better etc. But when I finally opened my eyes I figured out that HE wasn't improving, WE were. Everyone in his life was trying so hard to avoid his triggers and keep him out of difficult situations that it sometimes looked like improvement but it wasn't. I scheduled an appt with his pediatrician to get a referral to get tested.
Before we could get to that appt however (our pediatrician books out about 2 weeks in advance) a few things happened. He got hurt at hockey, he wasn't horribly hurt, but hurt enough to make him cry. He HATES to cry in front of others, combine that with having all the kids and parents watch it happen, it wasn't good. The coach got him to the bench, and my son shut down. I had to walk across the ice to the box and stay with him the rest of the game b/c the coach didn't know what to do. He refused to go back to hockey after that. This was painful for us to watch b/c he LOVES hockey. Two weeks later I told him he didnt' have to play but he did have to go to hockey b/c my older son was playing and we were all going to watch. He totally shut down when I tried to put him in the car. He was grunting, couldnt' talk, and shaking. He kept unbuckling his seatbelt and getting out of the car (he has never done anything like this). It was definately the worst we'd seen him. My husband ended up staying home with him and I brought DS #1 to hockey. When I got home I found out that after coming inside my husband tried to calm him down and then walked away to let him settle down. He ended up leaving the house (which he never does) and my DH couldn't find him. He finally found him around the corner at our neighbors house, just walking around, no shoes on etc. This scared the hell out of us!
I called his pediatrician and begged for a sooner appt. He agreed to come in early the next morning to see him. Basically he said that he is absolutely sure we aren't dealing with autism, he feels its totally anxiety, symptoms and family history can support an anxiety diagnosis. He went over the four medication choices that we had and we selected one that my husband (who also has severe anxiety) has done well on. We are starting him on a really low dose (5mg) and every 2 weeks if he has no severe side effects we will increase the dose 5mg, his target is 20mg, though if he is doing well on less obviously we will stick with less. We started the medication that morning, and by that night we were noticing a difference! For the first time in a month he was downstairs playing hockey with my older son instead of isolating himself. Four days later he played in his hockey game. I brought him to a bday party and he did great (on a side note two of his friends moms came up to me and said their boys wanted to have an "olympic party" for a birthday, but they were worried my son would get upset b/c he hates to lose. The boys had been trying to think of ways that they could make it easier for my son so he would have fun and not get upset. They wanted my advice. I am hopeful that by the time the party takes place it will go well, but aside from that so thankful he has such great friends who care about him so much!) He has been on the meds for 2 weeks now and has had no side effects. He has not had any meltdowns in school since starting them, and the teacher said he is more flexible and smiling more. He has been participating in things he wouldn't do all year at school. He asked to bring a share to school for the first time all year and even asked the teacher if it was okay since share had ended a few weeks ago. He likes taking the medication b/c he says the meds make him run and read faster (I think in general it makes him feel better and he recognizes that), however he is on page 117 of a chapter book he started a few days ago so maybe he's onto something! We increased the dose to 10 mg last night, so i'm interested to see how it goes.
Anyway, I want to thank all of you for your advice. For the first time in so long I am hopeful! Last month was really rough for him and me. I cried every day, sad about what he was missing, about the struggle he was facing, and upset that I now had two people with anxiety to deal with, its not easy! I haven't cried since he started the meds and am just amazed every day! We are continuing the therapy and hopeful this is our answer. If things don't continue to improve or get worse however, we will still follow up with testing.
Re: Child with anxiety update
My son has been diagnosed with general anxiety disorder, and we are considering our various therapy and medication possibilities. May I ask what med you chose?
Good luck with your son, anxiety can be so challenging! I know we will continue to have some ups and downs but am so thankful we seem to be on the right path!
My husband was once on Prozac, and as a result, is very nervous of medicating our son. In his cade, he thought everything was okay while he was on it, but when he stopped, he was amazed at how much clearer he was suddenly able to think. He says he feels like the drug "made him stupid" and when he stopped taking it, he was shocked at the things he could do/calculate, "overnight."
I was on zoloft for OCD but stopped it b/c of the side effects. I had no sex drive, weight gain and lost all emotions. I wasn't happy, wasn't sad...ever. You could have told me my dog got run over by a car and I would have just shrugged and not cared, it wasn't a good feeling. I decided to stop the meds and learn some coping strategies on my own and can function.
He has also said when he doesn't take him meds his mind races too much and he feels miserable (he also has ADD). This was something he didnt notice until he started taking Ritalin. He felt it was normal until he was medication for it. He has said his worst fear was our son feeling like he did....like something is wrong with you, the constant anxious feeling, depression etc.
I think its a balancing act and is different for everyone. For me, I didn't like the feeling of being on meds (for OCD) and stopped them. For my DH now that he has felt "normal" when he's on meds he doesn't like the feeling of being off them. Overall its a hard decision, we debated for months before deciding to put our son on them and him getting worse fast was the only reason we knew 100% that it was the right thing to do. Had he not gotten worse we would likely have continue to waver.