Skip to main content

Fun CBT Challenge


Ewen has always loved swimming and was so excited when my parents bought a house with a pool in the back yard last year. But when he got sick in December he became afraid that he would drown in the pool. Over Christmas my parents had it heated to 80 degrees and my sister who was visiting from NY and her family, swam every day. But Ewen hid away in the computer room and didn't go anywhere near it.

Today was the last day of the intensive CBT therapy. He is going to continue with CBT one or twice a week indefinitely. But today was his "graduation" so the final challenge was to swim in Grandma and Grandpa's pool. They got it heated up to 76 degrees which is still a bit cold. Katie and Matt met us at my parent's house and Katie jumped right in the pool first. Then Ewen had to jump in next. He was not excited about it, and when he did jump in he swam just fine across the pool but he was freezing and wanted to get out.  So they eventually got out and then he played a game of ping pong on the deck with Matthew and was happier doing that. My mom got a bit teary because Ewen was doing what he had always loved to do before he got sick. It was such a relief to see him participating and even enjoying what he used to enjoy. Having him back to his old self, even a little bit, is amazing.

I love how his therapists met us at my parents house. Last week they met us at Publix Grocery Store because Ewen was being really weird about going to the store. So they went there with him and even made him do an eating/swallowing challenge IN the store which he wasn't too happy about but did it anyway.

Katie is so good with him. He trusts her and she doesn't force him to do anything. She persuades and encourages and coaxes him. I realized today at the pool session when we were talking about him getting in the pool again later in the afternoon when it was heated up even more, that she was an amazing therapist. She was able to get him to agree to swim again and they thought of some rewards for doing it (half an hour of Agar.io and some MnM's. I thought about how ironic it was that he was getting a reward for swimming in a lovely pool in the sunshine. Swimming in the pool should be a reward in itself!

The best part about it was when he went swimming again at 4pm. It was 74 degrees outside and the heater had boosted the pool's temperature enough (80 degrees) that I could get in too (I'm a huge wimp with cold pools) and his 6-year-old sister came for a swim too. We all had a lot of fun and played catch with a beach ball. I was brimming with gratitude to all be having fun again like we used to before all this happened. It was so awful and sad at Christmas. What a relief to move a little more into our old normal, although nothing still feels the same. At some point, that will be OK.

Comments

Popular posts from this blog

The Chair of the Pediatric ER Wrote Back!!!!!

Ms. ....... Thank you very much for bringing your son’s case and experience to our attention. First of all, I hope that Owen is still doing much better. I absolutely understand how devastating this could be in terms of a missed opportunity to appropriately diagnose. I have to say that in reading your email and updating my knowledge about the condition, I could see how it may be quite difficult to make a diagnosis accurately in an Emergency Department setting and I could see why things occurred in the manner in which they did. That said, I am very sorry that we let you and your family and your son down in this way. Our Pediatric Emergency Department are staffed by a group of very expert pediatric emergency medicine specialists trained in some of our nation’s leading teaching institutions who I was able to recruit here to ...........  to take care of our community. I know that the fact that we were not able to expeditiously diagnose your son’s condition caused a great deal o...

Spring Break 2017 Update

4ml Prozac, 500mg Zithromax 3x a week, 1.5 mg melatonin, less than a quarter of Clonidine Ewen is doing well. Right now he is vacuuming and mopping the whole house (all 850 square fee lol) To earn an hour of screen time playing Overwatch. We have had a few hiccups. He got in major trouble in school for hacking into the computer and writing silly things on a class web page. He said he didn't realize he would get a referral and get in so much trouble since he wasn't hurting anyone and would never bully. He also dropped his grades because he was too busy having fun with his friends. So Mike and I had a meeting with his teachers. He now has a 504 plan since he has had lots of absences.  We are paying close attention so that we can make sure he completes his assignments. Last month he was having trouble with tics (mostly huffing) and anxiety and so his pediatrician put his Zithromax up to 500 mg every day for a full week. That completely helped and was amazing to get him back...

PANDAS Flare - My Oldest, Phenibut and Hydroxyzine

 We joined an online doctors group out of Colorado that specialized in PANS/PANDAS. My youngest is doing great with their protocol and she is the reason we joined. My 18-year-old with autism joined and after we got rid of her gut parasites she got very anxious. Then they gave her prednisone and she lost her mind. Now almost 3 weeks post-prednisone we are still sludging through a frightening mess of anxiety, depression and OCD the wasn't there before. I have it too now since it has been so awful with my oldest. I have to take anxiety meds to cope and I can't sleep at night after the hydroxyzine wears off. I'm in worse shape than she is, but mine is situational where hers is medical. To keep her comfortable I give her  8am 50 mg hydroxyzine and 500 mg phenibut 1pm 25 mg hydroxyzine and 250 mg phenibut 6pm 25 mg hydroxyzine and 250 mg phenibut I intersperse valerian calm drops and cortisol manager supplements between the doses. And then I pray it holds until bed time since tha...