Mack is off of vigabatrin and we are going to a new neuro.
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Mack Hofacker
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Mack Hofacker
Mack's last day on vigabatrin was the 3rd. Since then we have noticed his seizure activity double. There has been little to no communication back from his current neurologist and this actually landed us in the ER last night. The Neuro on call gave us instructions to go up on his Epidiolex, nearly doubling what he's taking now, but unfortunately the specialty pharmacy responsible for supplying that to us has failed to deliver his refill 2x this week. We qualify for an emergency supply from the medication manufacturer but they need his doctors orders for it and she's no where to be found.
Mack's blood carbon levels are also elevated. This could be caused by ketoacidosis or respiratory distress but I have yet to hear from his neurologist about her interpretation of that. We are taking Mack from Akron Children's to Cleveland Clinic because of these issues. We are hoping the new neuro can be a better advocate for access to his medications and just better communication overall. It has become my full time job to coordinate his care and keep multibillion dollar pharmaceutical companies accountable and I'm completely exhausted. I have already reported the specialty pharmacy to our insurance company and the Ohio boar of pharmacy is actively investigating it. We got home from the ER last night around 3am. In the mean time we just have to hope to hear back from his neurologist and pray we can get his refill in our hands this week. I have contacted a couple law firms about these issues with the pharmacy and no one seems to want to touch it. If you know any one who will please let me know. There's literally nothing else I can do and I've spent around 8-9 hours on the phone with the pharmacy since the beginning of august.
Mack's condition is up in the air right now. He's stable but he's having 30 spasms a day. He's vulnerable to a severe seizure if there is'nt intervention. He is getting stronger and more social every day but that is subject to change with how his seizures are right now.
Thanks for reading. Please pray for us.
Mack's blood carbon levels are also elevated. This could be caused by ketoacidosis or respiratory distress but I have yet to hear from his neurologist about her interpretation of that. We are taking Mack from Akron Children's to Cleveland Clinic because of these issues. We are hoping the new neuro can be a better advocate for access to his medications and just better communication overall. It has become my full time job to coordinate his care and keep multibillion dollar pharmaceutical companies accountable and I'm completely exhausted. I have already reported the specialty pharmacy to our insurance company and the Ohio boar of pharmacy is actively investigating it. We got home from the ER last night around 3am. In the mean time we just have to hope to hear back from his neurologist and pray we can get his refill in our hands this week. I have contacted a couple law firms about these issues with the pharmacy and no one seems to want to touch it. If you know any one who will please let me know. There's literally nothing else I can do and I've spent around 8-9 hours on the phone with the pharmacy since the beginning of august.
Mack's condition is up in the air right now. He's stable but he's having 30 spasms a day. He's vulnerable to a severe seizure if there is'nt intervention. He is getting stronger and more social every day but that is subject to change with how his seizures are right now.
Thanks for reading. Please pray for us.
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Nancy Schroeder