IVIG Infusion – Page 108

This week has taken its toll

It's been a very long week and I'm spent. The good news is that Lizze's pain has been cut in half, which is an enormous weight off her shoulders. It's far from perfect because the amount of pain she's still in would likely incapacitate most people, but it's significant progress. This is a big relief for us as a family and we're incredibly grateful. I'm just burnt out right now. Traffic was unbelievable this week. It took twice as long to get back and forth. Sometimes it took even more than that. There were days where it took hours longer than it normally would. It took us two and a half hours to get home yesterday because of a very serious car wreck that had traffic backed up forever. I…

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February 15, 2019

Why we almost didn’t make it to the @ClevelandClinic today

I'm absolutely exhausted but I wanted to deliver a super quick and dirty update. Lizze had her 3rd headache infusion at the Cleveland Clinic today. We almost didn't make it because traffic was absolutely insane. When I say insane I mean insane. It was literally bumper to bumper traffic for 68 fucking miles. It took 2.5 hours to make a 1-hour drive. We were quite late but we called ahead to let them know what was going on and they told us not to worry. Once we arrived, they took her back and got her hooked up. There were zero issues beyond us being late and she walked out of the hospital today with her migraine at a 6.5 out of 10. In the last 7 or 8 years, her…

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February 14, 2019

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

We’re leaving for Lizze’s 4th and final headache infusion this morning

We're preparing to make the trip back to the Cleveland Clinic's Neurological Center for Pain once again today. This time it will be for Lizze's final headache infusion. There's a really good chance that she will walk out today with her pain having been cut in half for the first time in 7 or 8 years. We're very excited because she feels really good. As the pain lessens, she's coming back out of her shell and it's amazing. We're so grateful that this is working and frankly, that we even have this last infusion today. There were some issues that almost cost her this last one but they are all worked out and we feel very lucky. There are no plans for Valentine's day but we're okay with that. ☺…

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February 14, 2019

My thoughts / Podcast

What You Need To Know About #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

My thoughts / Podcast

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…

6 Comments

February 13, 2019

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

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