Seizures are serious, Help Ruby stop having them!
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Hey guys,
As some of you know my little Ruby of 4 years old has had 4 seizures starting on January 24th all the way through February 15th .
JAN 24th**
SEIZURE #1
We left our house to go and grab some burgers. After coming to a stop at a light Mariah heard a choking sound in the back seat. Ruby was having a seizure, her eyes were rolling and body was uncontrollably flailing. We jumped out of the car and I yelled at the car behind us to call 911. We set her down on a lawn next to where our car was stopped at the light. We laid her on her side and cradled her head.
Ruby’s seizure may have lasted longer (due to teeth clenching) but her physical seizing, stopped after about two minutes on the lawn. She opened her eyes and some sound came out. She then went unresponsive but was breathing with a pulse. The Ambulance took at least 10-15 minutes to arrive. Multiple people around us called 911 since it seemed delayed for being so close In town. Once in the ambulance Ruby became responsive for about 2 minutes and reluctantly answered questions I asked her. After a few questions about the color of our car and Mama and Papas name, she closed her eyes and went unresponsive for the 10-15 minute ambulance ride to the hospital. Once we got to a hospital room, Ruby slowly became more aware of her surroundings and is now back to her old self.
CT scans came back negative, swabs came back negative. Now just waiting on the Urine sample.
END
FEB 3rd.
SEIZURE #2
Ruby has another seizure. She had been staying on our schedule ever since the 1st seizure. We were watching Star Wars, almost halfway through it, she started choking again and seizing. My wife and I called 911 and held her until they arrived. Another night in the ER and results still came back negative. At this time we were still waiting on our visit to see the pediatrician about getting a refferal for her 2nd seizure, since this was no longer a fluke.
END
FEB 8th.
SEIZURE #3
Ruby and I were both sitting on the couch in the morning, I was drinking my coffee and snuggling with her. She starts seizing again, this time I know we do not have to call 911 unless it goes past 5 minutes. her seizure lasted almost 1.5 minutes before she relaxed and fell asleep from exhaustion.
END.
We got Ruby's EEG done with the pediatric Neurologist. They have no Idea what is causing the seizures. Right now they are saying "it's genetic", which is hard to hear. All they seem to want to do is give her more medication until she stops having seizures, and then wait a year to take her off.
END
FEB 15th
SEIZURE #4
Ruby just had another seizure this morning. This one lasted 2-1/2 minutes. I was sitting across from Ruby at the Dining room table watching her and her eyes started fluttering and twitching backwards. Mariah was behind Ruby doing the dishes, so I yelled for her to catch Ruby, and she managed to turn around and grab her. She laid her down and within 5 minutes she was completely asleep. We were able to record the episode this time, as the doctor requested. So hopefully this footage will help him understand what’s going on. Hearing "it's genetic" is a very difficult to hear. We aren’t sure if this is something she will grow out of or even what causes her seizures. It’s also a huge strain of Mariah and I and as always, prayers are appreciated.
***Anything Helps***
We do have insurance , however it can get costly quickly as we are considering more full time care for Ruby at home or have Mariah (wife) work less hours.
There may be a change in medication, diet, sleep exercise in the future and all of those will come at a cost.
We are also looking at traveling out of state to possibly John Hopkins Hospital for a panel of doctors to review her case and see if there is anything they can do.
We have many things we would like answered and this road may be years. I will be getting out of the military in less than a year so the medical burden could increase more in the future. Thank you for your support, and Ruby sure appreciates it!
As some of you know my little Ruby of 4 years old has had 4 seizures starting on January 24th all the way through February 15th .
JAN 24th**
SEIZURE #1
We left our house to go and grab some burgers. After coming to a stop at a light Mariah heard a choking sound in the back seat. Ruby was having a seizure, her eyes were rolling and body was uncontrollably flailing. We jumped out of the car and I yelled at the car behind us to call 911. We set her down on a lawn next to where our car was stopped at the light. We laid her on her side and cradled her head.
Ruby’s seizure may have lasted longer (due to teeth clenching) but her physical seizing, stopped after about two minutes on the lawn. She opened her eyes and some sound came out. She then went unresponsive but was breathing with a pulse. The Ambulance took at least 10-15 minutes to arrive. Multiple people around us called 911 since it seemed delayed for being so close In town. Once in the ambulance Ruby became responsive for about 2 minutes and reluctantly answered questions I asked her. After a few questions about the color of our car and Mama and Papas name, she closed her eyes and went unresponsive for the 10-15 minute ambulance ride to the hospital. Once we got to a hospital room, Ruby slowly became more aware of her surroundings and is now back to her old self.
CT scans came back negative, swabs came back negative. Now just waiting on the Urine sample.
ENDFEB 3rd.
SEIZURE #2
Ruby has another seizure. She had been staying on our schedule ever since the 1st seizure. We were watching Star Wars, almost halfway through it, she started choking again and seizing. My wife and I called 911 and held her until they arrived. Another night in the ER and results still came back negative. At this time we were still waiting on our visit to see the pediatrician about getting a refferal for her 2nd seizure, since this was no longer a fluke.
ENDFEB 8th.
SEIZURE #3
Ruby and I were both sitting on the couch in the morning, I was drinking my coffee and snuggling with her. She starts seizing again, this time I know we do not have to call 911 unless it goes past 5 minutes. her seizure lasted almost 1.5 minutes before she relaxed and fell asleep from exhaustion.
END.
We got Ruby's EEG done with the pediatric Neurologist. They have no Idea what is causing the seizures. Right now they are saying "it's genetic", which is hard to hear. All they seem to want to do is give her more medication until she stops having seizures, and then wait a year to take her off.
END
FEB 15th
SEIZURE #4
Ruby just had another seizure this morning. This one lasted 2-1/2 minutes. I was sitting across from Ruby at the Dining room table watching her and her eyes started fluttering and twitching backwards. Mariah was behind Ruby doing the dishes, so I yelled for her to catch Ruby, and she managed to turn around and grab her. She laid her down and within 5 minutes she was completely asleep. We were able to record the episode this time, as the doctor requested. So hopefully this footage will help him understand what’s going on. Hearing "it's genetic" is a very difficult to hear. We aren’t sure if this is something she will grow out of or even what causes her seizures. It’s also a huge strain of Mariah and I and as always, prayers are appreciated.
***Anything Helps***
We do have insurance , however it can get costly quickly as we are considering more full time care for Ruby at home or have Mariah (wife) work less hours.
There may be a change in medication, diet, sleep exercise in the future and all of those will come at a cost.
We are also looking at traveling out of state to possibly John Hopkins Hospital for a panel of doctors to review her case and see if there is anything they can do.
We have many things we would like answered and this road may be years. I will be getting out of the military in less than a year so the medical burden could increase more in the future. Thank you for your support, and Ruby sure appreciates it!
Organizer
Elias Grey
Organizer
Odessa, TX
