Ehlers Danlos Archives - Page 54 of 101

Watching my son come unglued is awful

It's been a weird day, filled with Gavin related challenges. Lizze and I spoke at length this morning, and we both feel like Gavin is coming unglued. That's not meant in a derogatory way. We're both freaked out a little bit because there was serious doubt that the Clozapine was actually doing anything anymore and it's now quite clear that it was holding back the tidal wave of hallucinations. It's important to understand that as bad as things are getting for him in this area of his life, we do not see anything that warrants safety concerns for anyone around him. Announcing that he's a God is worrisome, but he's still a good guy, battling evil and not going dark if that makes sense. We would need to be more…

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April 10, 2019

It’s heartbreaking and a bit scary

The boys had a great day at school today, and in the way home, we stopped to visit my grandmother. We had a short visit before returning home blah blah blah. Not to downplay the significance of the above paragraph but what I want to focus on tonight is what came out of therapy tonight. This is specifically in regards to Gavin. Gavin was pumped and ready to tell us all about the missions he's been on over the last couple of days. This shouldn't be anything new or shocking to you, especially if you're a long time reader. Gavin is Autistic and Schizophrenic among other things. As a result, he experiences things that only he can experience. In other words, he sees and hears things only he can see…

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April 9, 2019

Clozapine / Gavin / Medication Management / My thoughts

The hallucinations may be getting worse

Gavin's becoming more and more involved in his imaginary worlds. I don't know if he's having more hallucinations or if he's more vocal about them. We don't know what's what right now. He's officially off the Clozapine, and the half-life is pretty short, so it's moving its way out of his system. While this potential increase in schizophrenic symptoms is concerning, it's more annoying than anything else. I say annoying because he's talking about it a lot and that gets old. His hallucinations aren't getting darker or more violent, and that's a good thing. He wants to fill Dr. Pattie in on all his adventures at therapy tonight, and I think that's a great idea. Once the dust settles, we'll have a better idea about adding a different antipsychotic, but…

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April 9, 2019

Allergy/Immunology / Elliott / Emmett John / My thoughts / University Hospital

We came we saw we struggled, but we survived

The appointments went pretty well. Everyone is doing okay, and Elliott was even able to avoid bloodwork. Emmett, on the other hand, was not so lucky. He needed bloodwork and ended up having to sit in line for over an hour to get it done. He was not happy about this, and I took the other kids out to the car, while Lizze waited for him to be called back. Once he was called back, he did great. It was just the anxiety created by the wait, that was causing him the most distress. We just arrived home, and he's doing much better. The rest of the day will likely be a mixed bag because he's most certainly overstimulated from this mornings events. I will not be surprised in the…

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April 8, 2019

Allergy/Immunology / Elliott / Emmett John / My thoughts / University Hospital

It’s a very stressful morning

It's not been a super fun morning. I had assumed that Elliott would be struggling this morning, but it ended up being Emmett who was struggling. When Emmett gets stressed out, he struggles even more with sensory related issues. This morning it was socks. He couldn't find a pair of socks that he felt comfortable wearing. It led to a pretty disruptive meltdown and a significant delay in our departure time. To his credit, he did work through it and is feeling a bit better right now. We were lucky not to have any significant traffic issues. We left about 7:45 AM and our appointment is at 9 AM. It takes one hour and fifteen minutes to get there on a good day. We made it at 8:55 AM. 😀…

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April 8, 2019

Elliott / My thoughts

Praying today isn’t a total nightmare

In the morning, we have to be at the immunologist. This means another trip to Cleveland, and we have to be there by 9 AM so that it will be a very early morning. Unfortunately, both Elliott and Emmett will need blood work while we're there. That's not going to go well. It's not going to go well at all. Emmett will be nervous, but he'll work through it. Elliott on the other hand, will not be so adaptive. Elliott is terrified of needles and has been stressing out for the last week or so because he remembered that he would need to have blood work done. I can see this going very badly for him and subsequently the rest of us as well. The last time Elliott had blood…

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April 7, 2019

Autism Parenting Insight / Emmett John / My thoughts

When your kid with #Autism is distressed

I had a hard time falling asleep last night. It had been an exhausting and emotional day. When you're an Autism or Special Needs parent, and your kids are experiencing distress, it has a significant impact on everyone in the house. Lizze and I were both stressed out and drained last night. Neither one of us fell asleep quickly. I remember seeing 2 AM on my nightstand's Google Hub. I was up at 7 AM and feeling pretty good. I hit the track and got my 3 miles in before 9 AM. That's a great start to the day. 😀 Emmett didn't sleep well and was up long before we were. I got home from walking, and he's already struggling a little bit. I'm hoping that he will feel better…

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April 7, 2019

Emmett John / Martial Arts Promotion / My thoughts

Emmett learned a valuable lesson today

Most of our day was spent watching Emmett's martial arts tournament, inside a cramped, hot gym. While it didn't take as long as last year, it still felt like we were there forever. Emmett was in group 9 and group 11. This meant he had a long wait before it was his turn. The level of competition was higher this year, and that caught Emmett off guard. He did awesomely but didn't rank in a way that made him happy. He placed 2nd and 3rd in his respective categories. We couldn't be any prouder of him, but placing 3rd hit him quite hard. Part of the problem with that was the announcer misspoke and initially called Emmett as 2nd place before correcting himself and calling Emmett for 3rd instead. That…

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April 7, 2019