Read more about the article Unexpected testing at the @ClevelandClinic for Gavin
Adult Epilepsy Center / Cleveland Clinic / Gavin / My thoughts / Neurology

Unexpected testing at the @ClevelandClinic for Gavin

Alright. We made it to the Cleveland Clinic right on time this morning. Traffic was very cooperative, and that always makes things a bit easier. Gavin's appointment went pretty well but based on what we see at home in regards to confusion; his neurologist got him in for an EEG right away. We need to know if something is wrong, but it's also a convenience thing as well. We're already here, and if they can get us in, it saves a return trip. It also gets the results to his doctor right away. Gavin just went back, and we have about 90 minutes to sit here and wait. Hopefully, everything will be normal or at least typical for him. I'm exhausted and starving, but it's going to be a little…

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April 5, 2019
Read more about the article My son with #Autism and #FragileHealth is back at the @ClevelandClinic today
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

My son with #Autism and #FragileHealth is back at the @ClevelandClinic today

The boys got off to school okay. Emmett had another rough start, but he got through it. Lizze and I are left a bit frazzled, but he was feeling better when he walked into the school.😀 We have a day of driving ahead of us. Gavin has to be at the Cleveland Clinic for a visit with his neurologist. It's one of those frustrating appointments, only because it will be a 3-hour drive for a 15-minute consult. His doctor is fantastic, and it's essential that we get him there. It's just a lot of driving in a car that's not doing well. Anyway, with any luck, well be back in time to get the boys from school. If we're not, Lizze's Mom will grab them for us, and we'll pick…

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April 5, 2019
Read more about the article Why we almost didn’t make it to the @ClevelandClinic today
Cleveland Clinic / Headache Infusions / My thoughts / Neurological Center for Pain

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
Read more about the article We’re leaving for Lizze’s 4th and final headache infusion this morning
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
Read more about the article I have some amazing news to share tonight
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
Read more about the article We got some bad news about my wife’s headache infusions
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
Read more about the article My wife begins her 2nd day of headache infusions at the @clevelandclinic
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
Read more about the article The first day of headache infusions had some painful drawbacks
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