Common Variable Immunodeficiency Archives - Page 107 of 260

What the heck is #SPD and why does it cause #meltdowns?

This week's episode is all about Sensory Processing Disorder and meltdowns. These are extremely important topics that cause a great deal of confusion. Sensory Processing Disorder (SPD) and Meltdowns are two of the most commonly misunderstood things that an Autistic person can experience. Even more confusing is how to know the difference between a meltdown and a tantrum. Those words are used interchangeably and that’s a major problem, leading to a great deal of misinformation. This week's episode of The Autism Dad podcast will help to explain how these things can impact people and how to tell the difference between a meltdown and a tantrum. You’ll also hear from Emmett, my youngest, as he talks about how SPD impacts his life on a daily basis. I decided to publish this…

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February 13, 2019

I have some amazing news to share tonight

Lizze and I are getting ready to hit the sack because we have a really early day tomorrow. I wanted to take a few minutes and touch base with you fine folks because we have some positive news on the migraine front. ☺ First of all, Lizze had another bad reaction to the medication called DHE 45. They immediately discontinued it and have permanently removed it. Lizze is glad she tried again because she wanted to be sure. Anyway, her infusion took her migraine from a 10 to a 7 and that's awesome. Unfortunately, the DHE 45 took it back to an 8 but that's still better than where she was when she arrived. She left the Cleveland Clinic today with a sense of hope because the infusions are working.…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / Migraines / My thoughts / Neurological Center for Pain

We got some bad news about my wife’s headache infusions

Lizze's infusion has been going well for her today. She's slept through a large part of it and I've just been sitting in the lobby waiting. They've decided to once again try the medication that caused problems yesterday. This time it's going to be more diluted and will probably take about two hours to infuse. If it causes pain, they will immediately pull the plug but Lizze is all for it because it stands a good chance of helping her. Unfortunately, when we arrived at the Cleveland Clinic this afternoon, we learned that her insurance has decided to pull funding for the forth day and that effectively forces the cancelation of the last infusion. We're not happy about that because that last day could make a big difference and there's…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / Migraines / My thoughts / Neurological Center for Pain

My wife begins her 2nd day of headache infusions at the @clevelandclinic

It's been a busy morning already. Lizze didn't sleep very well. She's in a lot of pain and extremely nervous about her second Infusion today. It's very hard to be hopeful when you've been in so much pain for so long and nothing has ever been able to help. I'm trying to get her to go into this as positive and hopeful as possible because state of mind makes a difference. It's a big ask and I understand where she is right now but I just want this to work for her. I view the fact that yesterday's infusion brought her migraine from a 10 to an 8 as a very positive thing. Unfortunately, the last medication that they pushed undid all that progress and made things worse. I understand…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / Migraines / My thoughts / Neurological Center for Pain

The first day of headache infusions had some painful drawbacks

It's been a really, really long day and I'm going to make this a quick update. I want to let you know how the first day of headache infusions went for Lizze. It's been a mixed bag for her. For starters, the Cleveland Clinic is amazing and the staff made Lizze feel very comfortable with the process itself. She was very nervous going into today and was relieved by the kind treatment she received. ☺ I mentioned in the previous post that Lizze was feeling a little better as the infusion was progressing. Her migraine went from a 10 to an 8 and that's a pretty big deal for her. Unfortunately, the final medication they pushed caused a very negative reaction and her migraine went to an 11 as a…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / Migraines / My thoughts / Neurological Center for Pain

2 hours into her 1st headache infusion at the @clevelandclinic

Lizze has been hooked up to the IV for about two hours now. There's no room for me to sit with her so I'm hanging out in the lobby until she's done. I'm allowed to walk back and check on her but I have to be very, very quiet because everyone in there is dealing with migraines. I'm allowed to bring her food but there are restrictions. Nothing can have a smell or make noise. Many people with migraines can be triggered by certain smells and so they are very careful what's brought into the room. Everyone in this room, including my wife, is resting in recliners and separated by a thin curtain. The lights are low and it's so quiet, you could probably hear a pin drop, literally. The…

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February 11, 2019

Cleveland Clinic / Headache Infusions / Lizze / My thoughts / Neurological Center for Pain

I was an awful parent (by my standards) this morning and I feel horrible

It was a very chaotic morning and I regret a great deal of it. We were trying to get everyone out the door and nothing was going right. The boys were being kids and I simply had no patience. Elliott is at that age where we aren't sure how much is Autism, anxiety and depression or how much is normal teens stuff. All I know is that I needed cooperation and he was not being super cooperative. He would dig his heels in and I just wasn't having it this morning. Rather than continue to offer him patience and guidence, I yelled. I wasn't really yelling at him but rather at the situation and that was just as bad. I'm not talking simply raising my voice but actually yelling at…

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February 11, 2019

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

Please keep my wife in your thoughts and prayers as she heads to the @ClevelandClinic for most of the week

This is going to be an absolutely crazy week. In fact, it's going to be one of the most challenging weeks we've had in recent memory and we're going to need all the help we can get. Thankfully we have that help in the form of our parents, on both sides. I meant to get to this on Friday but I didn't. Lizze was approved for here headache infusions and they begin in the morning. We will be making the sometimes three hour round trip, four days in a row this week. This makes things very complicated because the boys need to get to and from school each day. We also have Gavin who wouldn't do well on these trips. Thankfully, Gavin will be staying with Lizze's parents until Thursday…

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February 10, 2019