General venting and looking for input

[JTsMom]

I haven't done a Jason update in a while, and I thought we were on the right track, but I'm ready to lose my mind today, so I thought I'd see if anyone had any ideas for me.

We've been seeing new therapists, and that has been going well. We're getting OT and speech 1x/week. Started GFCF back in early Jan- I'm not sure what to think of that. We just started brushing and Therapeutic Listening again (neither has worked well in the past) and we're doing Neuronet for the first time. OT has been doing spinning protocol as well. Speech therapist has been working mainly on pragmatics, which is awesome.

Wednesday and Thursday were great days behavior-wise. Amazing, actually. It was like having a neurotypical kid! Meanwhile though, eating has become more and more of an issue. Wed. is the first day it got really bad. It got progressively worse. On Friday, he ate maybe 2 bites of pancakes and started gagging. Even looking at the plate made him gag- he couldn't even handle throwing the food away. He barely ate a thing all weekend until last night, when he ate 2 bowls of oatmeal, 3 rice crispy treats, and a blueberry yogurt (all GFCF). This morning he ate about a half a bowl of oatmeal, but won't touch lunch.

He's been doing all of these oral sensory seeking things- licking mirrors, spitting, blowing raspberries, etc. He's also been very hyper, and his behavior has been abysmal.

I took him in to see the OT today, and she feels a least part of it is attention seeking behavior. She also noted that his pupils were very large, and felt like he was very afraid a lot of the time. I really think he's in fight or flight mode a lot. On the way out, he bolted out the door into the parking lot. I'm just crushed- it felt like we were finally making progress, but I don't know what happened. How could we go from 2 awesome days to this?!?

I've kicked around seeing a behavior specialist, and I want to see a neurologist for sure. Any thoughts?

[Elilly]

Ds also went through a similar phase about 6 weeks into being gfcf. It could be a total coincidence. I can say that it only lasted a few days and then all was well again. Go figure.

[JTsMom]

Oh wow, really? Hmmmmmm. I honestly never even thought to connect this to the diet. Thanks so much for responding.

[Elilly]

Lori, have the behavior and eating difficulties passed?

[JTsMom]

For the most part, yes! I think you nailed it, b/c I haven't been able to find any other reason for it. He's still gagging every now and then, but he's been eating- some meals more than others, the spitting/raspberry blowing is almost totally gone, and he's back to his still somewhat hyper, but much more manageable self. Thank goodness!!! LOL I seriously couldn't have handled that much longer. It was baaaaaad.

Thank you again for replying b/c it really gave me a little hope to hold onto during the worst of it.

I've noticed that if I stay on top of the brushing, things seem to go better as well. I don't know why, but I find it to be such a PITB, and it never seemed to help at all, so I tend to not do it as often as I probably should. I've been really trying to stick to it though, and I'm seeing some i9mprovement.

He's had a couple of freak out episodes, but that's more "normal" Jason.

[Elilly]

Woohoo! I was hoping that it was "just" the GFCF kicking in. I don't know why but I've heard of many kiddos going through this. Glad it was short lived and that everyone lived through it!