Frequently asked questions:
In support of
Mack Hofacker
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Mack Hofacker
Hopefully this gives everyone a well rounded perspective about our boy's situation!
How is Mack’s treatment going ?
- The treatment with Dr. z at Akron children’s consists of the keto diet and medications. Right now Mack is having 7-15 spasms a day under this treatment.
- The treatment at Neurosolutions in Austin Texas will not be scheduled until we have raised/ saved enough funds to pay for it in full.
How long will Mack need oxygen?
- We don’t know. Mack experienced a breathing regression due to untreated seizures. Mack will likely need oxygen until he has his cleft surgery which would fix his floppy air way. He can’t have his cleft surgery until he passes a sleep study. He probably won’t pass a sleep study until we see significant reduction in seizure frequency. We probably won’t see a significant reduction in seizure frequency until he is on a higher dose of epidiolex and after the treatments he needs at NeuroSolutions.
When will Mack be able to eat by mouth ?
- Kind of the same answer as above. Mack needs to pass a swallow study to be able to eat orally. He probably won’t pass a swallow study until we see a significant reduction in seizure frequency and we probably won’t see that until epidiolex is significantly increases and he’s undergone treatment and NeuroSolutions.
He will grow out of this right ?
- No. Mack is very ill. If he ever gets to experience a seizure free life it will be because of the grace of God and persistent effective treatments like epidiolex and what they offer at Neurosolutions. Mack became a palliative care patient at 4 months old. It will be a miracle if he is able to talk, walk or live independently. The anatomy of Mack’s brain is the cause of his seizures and poses significant risk for serious chronic seizures as he grows. His seizures will probably be his cause of death and that can happen at any point in time with no notice.
What is palliative care?
- Pediatric palliative care is specialized medical care for children with serious illnesses, focusing on providing relief from symptoms and stress to improve the quality of life for both the child and their family. It involves a team of healthcare professionals who support the child and family throughout the illness, regardless of whether the child is receiving curative treatment.
What causes his seizures?
- The brain abnormalities caused by his genetic conditions. He has white matter loss, enlarged ventricles, nodules in his ventricles and thinning of the corpus callosum. The corpus callosum is responsible for the communication between the left and right brain. Mack has chaotic brain waives 24/7 and seizures in the midst of that which is why he experiences regressions in vital skills and is often unable to progress in milestones .
What do Mack’s seizures look like?
- The ones that we see look like the startle reflex followed by fast blinking and often crying. At one point Mack was having 70 a day, 10-15 clustered together only seconds apart. Now lately he’s been having some days in the single digits. Most of the time we see 13-15.
What is west syndrome
- West syndrome, also known as infantile spasms syndrome, is a type of epilepsy that typically occurs in infants under two years old. It is characterized by clusters of spasms, abnormal brain wave patterns called hypsarrhythmia, and potential developmental regression. Mack was diagnosed with west syndrome at 4 months old after trying all front line treatments failed to eliminate his seizures.
What is Lennox gastaut syndrome
- Lennox-Gastaut syndrome (LGS) is a severe form of epilepsy that typically begins in early childhood, characterized by multiple types of seizures, developmental delays, and cognitive impairments. It is often difficult to treat and can lead to significant lifelong disabilities. Mack was recently diagnosed with LGS due to his age and some changes with how his seizures present. This will likely be his final diagnosis that sticks with him for life.
What is next for Mack ?
- Increasing Epidiolex (RX cbd oil ) slowly and getting treatment at NeuroSolutions ATX.
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