Day 30 and 31 - Trial and Tribulation

On Monday we bumped the meds up from 5ml to 10mg. Frog cycled back and forth between regulation and disregulation. He seems more tactile sensitive while on this medication and wearing clothing is getting more difficult for him. We read one book - Red Leaf, Yellow Leaf, while Frog played in the bathtub. He was quite distressed through most of the reading. The distress continued throughout the bath and even after he got out. He seemed to be experiencing sever pain in the groin area - something he has dealt with off and on for years. He was finally able to urinate, which relieved the pain and left him calmer and happier.

We've talked to so many professionals about this and they all conclude it is a sensory issue and leave it at that. It is so frustrating! It may very well be a sensory issue, but it is also very painful. It might also be something else, but nobody has any ideas about how to determine what might be going on. I suspect this has more to do with Frog's lack of ability to speak for himself, answer the doctor's questions, and because he is autistic and has sensory processing disorder - so they choose to stop there. The only suggestion I get is to bring him in when he is having an attack. He can't be touched when he is having an attack - so I haven't figured out how to get him to the doctor's in time for them to see him.

We had planned a leaf walk and leaf rubbing activity for today, but Frog's sensory state put that plan on hold. He played in the yard on his own for a little while, and watched Diva play on the wii (even tried out the balance board on his own), but mostly he just rested. I did a few leaf rubbings and he checked them out. He also explored the leaves themselves - tearing them and letting them fall to the ground.

On Tuesday, I spent most of the day getting the van serviced. Frog spent some time with Grandma and Grandpa. He seemed to be tolerating the 10mg of medication much better today. He was not holding his head and fussing as much as yesterday. He was tired, not surprising since he was awake between 2 and 4 am last night. When he came home with me, he began to have pain in his feet. Like the groin pain, this is not a new experience. It happens often when Frog is stressed or under some sensory pressure. He goes from not wanting anything to touch his feet to stomping them on the floor really hard or, like today, jumping really hard and high while screaming. It looks like he is having a very extreme pins and needles sensation in his feet which he is holding very taut. They sometimes get hot. And his ears turn bright, bright red. I have video, but again it is not loading onto blogger. If any and of Frog's therapists would like to see it, let me know and we'll make arraignments.

Edit: I was able to load one of the videos on Youtube -


On the positive side, he was very communicative today when he wasn't in a sensory melt down. He really wanted to play and sought us out with vocalizations, a couple of echoed words, and lots of referencing and giggles. Tomorrow he has Speech/OT at school - maybe we can get our leaf walk in after that.

Update - Wednesday Frog woke in a good mood. He did much better at Grandma's and seemed to be tolerating the medication better than he has the last two days. But when we got to our Speech/OT appointment at school, Frog went into meltdown and had the same foot reaction he was having yesterday. It was actually good timing since it gave his therapist a chance to see what this looks like and try all the things that logically should help, but don't. By afternoon, Frog and I were both wiped out. Frog had not slept the night before and neither had Frog's Mom or Dad. Fortunately, Frog took a very short nap and stayed up a little later, going to bed around 10pm. We were all able to sleep through the rest of the night.