WEEK 7- 8 Post Steroid

August 12, 2013

WEEK 7- 8 Post Steroid

Still carrying on with summer school for Hunter and his buddy JP. Paige hasn't really had much school time due to all the camps and playdates she has had. Last week she joined in with us for ocean day and she was the teacher. :)

Ocean vocab

Practicing those early sight words

Hunter actually had an exceptional day for his ABA therapist last week as well when we scheduled a playdate for social skills targets. I'll attach the note:

New Programs Introduced 1. Greet my friend at the door ____________ 2. Ask "How are you?" _____________ 3. Say "What do you want to play?" _____________ 4. Agree, and play for at least 10 minutes ____________ 5. Clean up activity 6. Choose an activity I want to play _____________ 7. Play for at least 10 minutes ___________ 8. Clean up activity ____________ 9. Say "thanks for coming! You should come over again sometime!" ___________ 10. Walk friend to the door and say goodbye _____________ Worked on steps 1 & 2 - Hunter did very well! He even added "that's a cool shirt John Paul!" Hunter needed prompting to respond to his name when spoken by his younger brother. Hunter's sister mentioned to his therapist that he had broken a doll of hers. Hunter overheard and said "I'm sorry Paige, I won't do that again". Wow, so sweet Hunter!! Hunter colored Lightning McQueen a purple/pink color today! He started 4 conversations with his therapist and sister! Questions to peers (not necessarily mands): 4 Prompted, 9 Independent ((whole peer session 1.75 hours)

Last weekend we went to the pool for a bit late afternoon, and just smiled when I saw these three kids in their shades, The pool attendance was low, so we let the kids try most of the activities. Hunter jumped off the diving board multiple times, went across the lilly pads (only became upset when the lifeguard told him to get out after falling off), and swam across both pools. Super fun day.

8/5: I started the sacc. prebiotic again, since it is supposed to fight clostridia. We never fully completed the cycle previously because we started the steroids. We saw a little behavior (therapists she he seemed to want to have behaviors but held back) at home, but nothing too drastic.

8/6: Paige and Hunter started playing McQueen at the breakfast table. They had great themes, good reciprocal conversation, and she was a great little therapist trying to expand his sentences. He even said, "Mommy, do you want to join in?" We played a board game later and they were talking about who was going to win. He said, "I know! We are ALL going to win!" Very different from the little boy who cried extensively when he didn't win a game.

8/7: Third day of prebiotic. Pretty sure we were getting some die-off behavior- he hit the TV. I was SO disappointed! He did it in the morning while I was already at work. He hadn't done it all summer! This time we told him if it happened again, the TV would be gone. I think he realized what he had done, because it hasn't happened since. Also was up 2 hours in the middle of the night.

8/8: Up at 4 AM, able to get back to sleep pretty quickly. He hit me at OT when I said he couldn't watch a video on my phone. He kicked me while I was talking to the OT. Noticed lots of vocal stims lately.
Dr. G follow-up for Vitiligo. He said that it has progressed on his face and we should try Protopic to regenerate pigment. He said it stops inflammation around areas of the skin and it doesn't thin the skin like steroids do. It has been out since 2001 and the ten year study showed only theoretical risks. With steroids, you risk glaucoma, cataracts, and thin skin. Studied trials have shown great success with protopic, when mixed with sunlight. I asked if there were other markers we should test for in regards to an autoimmune disorder- he said CBC and Thyroid- both have been tested and are normal. In doing a little research on Vitiligo, only 3% of cases have a genetic link. Crazy! He said he sees 5 patients per day with vitiligo. Didn't realize it was common-

8/10: Woke up in such a good mood. Conversation in our bed was amazing- so many cute little phrases. He didn't ask for the tablet or ipad. He screamed throughout special Olympics swim practice, but did do two laps at the end. We went to see PLANES later that day, and he had a hard

time paying attention to the movie. We had been talking about the movie for two weeks, telling him that there was NO McQueen in the movie- he was convinced PLANES was really CARS 3. He did enjoy the movie, but it was pretty loud. I gave him Paige's hooded jacket to put over his ears, and that seemed to help.
After the movie, he fell asleep in the car and he was super cranky when we brought him inside. Screaming, throwing, yelling...not fun. Went to bed and woke up in a fabulous mood today.

8/11: Great day at church! Actually whispered! Such polite manners all day- he has learned to ask in the right manner, so we are rewarding semi-frequently to keep this behavior up.

Here are just a few fun pictures: