IVIG Infusion Archives - Page 175 of 181

I’m worried Gavin’s becoming paronoid

Something Gavin brought up during his visit with Dr. Moodley in Pediatric Neurology, had nothing to do with why he was there. Dr. Moodley was trying to involve Gavin in as much of his health care as was possible. Clearly it's not possible but I like that he tried anyway. When asked if there was anything bothering him, meaning anything Dr. Moodley deals with, not just anything, Gavin replied with an answer that has me worried. One of the things that we have to be very careful with in regards to Gavin being Schizophrenic, is watching for signs of paronoia. The only step beyond Schizophrenia is Paronoid Schizophrenia. That's not a good step at all for those keeping track. Gavin's never really shown signs of paronoia, at least consistently enough…

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May 24, 2018

Cleveland Clinic / Lizze / My thoughts

My wife suffers from severe chronic pain but we have new hope

I don't write much about Lizze, but not because there isn't anything to say or I don't want to talk about her. She has her own blog where she likes to share her own story and I totally respect that. Sometimes however, it's important to say something anyway because she plays an invaluable role in our daily lives and does so while facing significant challenges of her own. For those that aren't aware or maybe need a reminder, Lizze lives with severe chronic pain. She's lived this way for countless years now and it absolutely takes a toll on her. She's struggled with migraines for most of her life and was officially diagnosed with Fibromyalgia, after extensive testing back in 2005. She recently described her pain by saying that every…

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May 24, 2018

Autism Parenting Struggles / Emmett John / My thoughts

I desperately need a break from his school related anxieties

This is a interesting story that involves Emmett, his teachers and a six month old homework packet. The other day, one of Emmett's teachers approached me right before school let out because she wanted to give me a heads up in regards to a conversation she'd had with Emmett that day. She knows how Emmett struggles with communicating in certain situations and wanted me to know first hand, what happened so Lizze and I could reassure him if need be. Back in January of this year, Emmett missed a bunch of school do to illness. There was a ton of makeup work and somehow, one of his packets never got turned in. All she did was ask him if he knew where it was and he told her it was…

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May 23, 2018

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

Here’s what happened at the @ClevelandClinic yesterday

We had to make our way to the Cleveland Clinic yesterday for a Pediatric Neurology appointment. Gavin had a follow-up in regards to epilepsy and autonomic dysfunction. I already shared the results of his Orthostatic testing but you can find those here. Overall, his appointment went really well. We talked about our concerns in regards to his endoscopy and colonoscopy. Dr. Moodley doesn't have any overt concerns in regards Gavin being sedated. As long as his vitals are closely monitored and he has an IV established, there isn't too much to worry about. If Gavin wasn't as physically stable as he's been, than it might be a different story but it's been years since he's had a major crisis. As for his EEG, it was mostly normal as well. There…

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May 23, 2018

Cleveland Clinic / Gavin / My thoughts / Orthostatic Testing / Pediatric Neurology

Gavin’s orthostatic testing results from our @ClevelandClinic trip

I have a much larger update planned but for the moment, I wanted to let you know how Gavin's orthostatic testing went at the Cleveland Clinic yesterday. Whenever Gavin see his neurologist at the Cleveland Clinic, they have to do orthostatic testing because he has autonomic dysfunction.. Orthostatic testing is simply taking his vitals but doing so while he's physically in different positions. The point is to see how his body physically responds to changing positions. In a normal, healthy person, there shouldn't be much difference between vitals taken while lying down and standing up. Orthostatic Testing Results: Lying Down 114/68 HR 99 Standing Up 118/77 HR 121 These results are considered to be mostly normal and that's a very good thing.. ☺

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May 23, 2018

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

We’re returning to Pediatric Neurology at the @ClevelandClinic today

Gavin has an epilepsy follow-up in Pediatric Neurology at the Cleveland Clinic this afternoon. We'll be leaving shortly and I'm hoping that everything goes well. Today's appointment serves as both a follow-up and a consultation. Gavin is supposed to have an endoscopy and colonoscopy on June 5th. We're worried about how his autonomic dysfunction may increase the risks associated with going under. We also are concerned about the vagal response from shoving the camera down his throat. Hopefully, his specialist at the Cleveland Clinic will be able to address these concerns and diswade some of our fears. I only want good news today because I'm struggling a bit on a personal level this afternoon and I don't think I can take any more bad news in regards to Gavin.

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May 22, 2018

Autism Parenting Struggles / Gavin / My thoughts

Why his lack of awareness creates problems

Gavin is struggling a bit more than usual today. He's never really been acutely aware of what's going on around him but he's absolutely oblivious right now. I don't know that there's anything going on today that's really out of the ordinary. There's nothing external to Gavin that seems to be causing him any distress or anything like that. It's important to understand that Gavin's not even aware that he's doing anything problematic because he's not doing any of this on purpose. He's just being himself and going right along with his day. The problem that his lack of awareness means we have to be ever vigilant. I was boiling water on the stove this afternoon and had to make sure that Gavin didn't touch or bump into the pot…

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May 21, 2018

My thoughts

It’s been a great morning, even though it’s a Monday

We made it to and from the Hartville Farmers Market this morning without any problems. I pulled out roughly $50 and I feel like we cleaned up. For $50, we got the following: A flat of strawberries A flat of blackberries 3 lbs cherries 5 lbs of sweet potatos 5 lbs of peaches 8 lbs of Gala apples 3 mangos Block of head cheese I think this was a pretty good haul. There's something for everyone and if we do this every Monday, hopefully we will be able to keep the kids eating healthier. ☺

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May 21, 2018