I can't even believe this shit! I'm sobbing uncontrollably after the phone call I just had.
Jayen started seizing this morning at 6:54. He drops his head and shoulders so quickly I call them jackknife attacks. This continued for 15 minutes before I called Matt and asked what he thought I should do. We haven't met with Dr. Jarrar yet so we don't have a true plan in place for anything. We really didn't know what to do so when it hit the 20 minute mark I opened our new package of rescue medicine and tried to give him one. Jayen is not used to this medicine and didn't like that he had to leave it on the side of his mouth. He is good at swallowing medicine but not good at holding in the side of his cheek. He put up a good fight. The seizures continued for another 5 minutes so I called the on call physician at Children's Hospital Phoenix. The on call physician was pulling up his file and said he kind of remembered Jayen from the hospital stay. He was very quick to read that these were not seizures. I was truly upset, furious, enraged, infuriated, irate, seething, etc. I explained that I called Dr. Jarrar when she returned and she said they are in fact seizures. He continued to tell me all he had to go off of was the notes in the computer and they said they were not seizures. I was getting stern with him that something was happening to my son and I was calling the hospital for help and answers. This jack tried telling me to calm down and that getting upset would not help my son. I understand he was trying to deescalate the situation, but truly all he was doing was the opposite. He wasn't sure what to do and asked if he could talk to Dr. Jarrar and call me back. I was more than happy with that option until he said he had to starts rounds soon and would try to get back to me afterwards, like in about two hours. This is when I truly lost it on him. I don't understand how I am supposed to sit here and let my son continue to seize for another two hours while you go do rounds. That is when this (not nice for anyone's ears) told me that there are other patients "on death's door" that are more important than my son right now. If I really felt like he needed help right now then I should bring him to the emergency room. In tears, I quickly responded that the last time I did that it got me no where. He finally said he would call Dr. Jarrar and get back to me as quickly as he could.
Within two minutes, Dr. Jarrar was on the phone with me. She profusely apologized. She had me give him another dose of rescue medicine. She explained that somehow the neurologists must have reviewed his file and determined that he was having seizures but we were already discharged. She did say that they had already increased his medicine so they wouldn't have done anything different anyway. But don't you think that would have been good information to share with the parents. Yes, your son is having seizures, here is your new seizure protocol. That would be the perfect thing to tell a parent who just left the hospital disagreeing with your diagnosis and asking what my options were. I begged her to put something in his file that states these are seizures. At this point in time his seizures are not responding to the increase in his Keppra. Dr. Jarrar suggested we try another medicine known to help with spasm and drop seizures. She would like us to add Onfi. We have been on this before and Jayen responded well in the beginning but like most of his medications the honeymoon period eventually faded and it stopped working. This medicine does require a prior authorization so we are not sure if we can get it before the weekend. If we can't get it then she would like us to start another medicine in the meantime. I was given titration doses for both medicines.
Why can't she be the other person I deal with. I truly do like her and appreciate her opinion. I feel she is incredibly knowledgeable and understands Jayen's whole story. But to have to deal with the rest of the hospital has been such a fucking nightmare. I will be calling and filing a complaint today. Cluster of seizures today lasted one hour and 12 minutes.

W.T.F.?

Jayen's neurologist was supposed to be back from vacation today so I started calling around noon. An hour later I received a call back from the nurse asking me to describe his new episodes. I was confused as they were the same things we had caught on video EEG in the hospital but I obliged. She was going to call me back after she talked with the doctor. Some time later she called back and said the doctor suggested we increase his seizure medicine again. I started questioning her and this decision as I have clearly been told these are not seizures. I reminded her that the neurologists at the hospital told me they did not show any epileptic activity. The nurse said she would take that info back to the neurologist and see what she wanted to do. A little while later I received a return call and was told our neurologist reviewed his inpatient EEG and saw "real seizures", he was in fact having seizures and she would like to increase his medicine again. Wtf? Why? When? How? Does this mean the other doctors are incompetent/incapable of reading an EEG? Does this mean they lied? When did she read it? When did they discover this? Why did no one call me? Do we have a new protocol? When do I give rescue medicine now? So many questions but I seriously sat on the phone with nothing to say. I was so fucking speechless. Why does this happen? How does this happen? Does he seriously have seizures again? Who do I believe? What do I do? How can I help him? So much of me wants to run screaming straight to Minnesota. I'm just so lost, hurt, and confused.

Possible answer

I may have found something today. After getting nearly kicked out of the hospital, being told he is not having seizures but the doctor's increasing his seizure medicine and giving us a new rescue medicine, I have been researching nonstop. Today I came across something I think could possibly be an answer. I by no means am a doctor or have any medical training but I refuse to sit back and watch this happen to my son. I refuse to haphazardly add medicine to his regime without knowing what we are trying to cure/resolve.
I stumbled across a condition called dystonia. Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not know. Dystonia is common with kids with FoxG1.
I don't know everything and this may not even be close to what is going on with him, but I will keep looking until we find out.