Jess is having more of what I call seizures. She is off of medication because the doctor disappeared. We showed up for an appointment and the office was gone. Lettering was on the window but everything inside was gone. We have to find a doctor in Tulsa or OKC for primary care because the docs here are either pediatricians with the one practice that kept telling us that every problem was psychological, even strep throat and a flu, or they don't take patients her age. Seems from 17 to 21 no doctor will treat you. I went through the same thing when I was that age.
Most of the problems are just staring off into space, meaning absence seizures. The neuros in this state who treat kids say it is conversion. The week long eegs have not been done properly and we had entire days (24+hrs) where all that showed on the monitor was garbage, or non stop black squiggles that mean the leads have come loose. No matter what we told to the nurses, they did nothing. Then someone in the tech dept would finally notice and they would send someone to re-attach them an we got scolded for not telling the nurses. After the first time, I made the nurses sign a sheet each time I told them the leads were loose. Six notices in a day and no one told anyone about the problem, and of course this was as she had problems. The nurses even noted some of the problems, but the docs ignored it.
Things are more complicated now. Days when she has a lot of staring spells, or missing time/time jumps, as J calls it, are accompanied by late night activity she has no memory of and during which she cannot string two logical words together. She speaks, but it is either nonsensical or it isn't in any language I know. I have again stopped sleeping at night because seh gets up to fix food. She does not know she is not awake at the time, and she is never aware of it the next day. Microwaving food is one thing, but she has turned the oven on four times. Twice I found food in the oven and seh was talking but made no sense.
Last night she turned a burner on but didn't light it. I smelled gas but was very tired and it took about ten min for me to realize it. I had to open the doors and keep them open for half an hour to air the place out.
The knobs don't come off of the burners here. She can navigate the childproof knob covers easier than anyone I have ever seen. She could at two. I am going to see if there are new ones out that might work. She is NOT doing this on purpose or consciously, which makes it that much scarier and harder to deal with.
ANY ideas to help us keep her safe would be HUGELY appreciated. She cannot drive and is not allowed to leave the house with-o letting us know. She can leave the house, but the last couple of times she left the house alone with-o letting someone know, she suddenly was somewhere and didn't know where that was, didn't recognize where she was or know how long she was gone. She was terrified, had no phone with her because she meant to go sit outside and read. She was over a mile away. She walked a couple of blocks and saw the bookstore a bit over a mile away from our home. She spent some money thank you had in his jacket and got a drink and then walked home. She didn't ask to use a phone to call me because she didnt' want me to worry. I was home in bed with a migraine and she didn't want to wake me up or worry me. husband was in class. She didn't know how to explain it to my folks so she just walked home. I was TERRIFIED when I found out. Our town is fairly safe, but it IS a college town and there are people here who could and would hurt her if they thought they could.
I HATE limiting her world, not letting her experience everything life has to offer. She is in great pain most days still, from muscle spasms that turn her muscles into rocks and can last minutes or days and no doctor ever seems to give a hoot. The seizures are more often and more complicated and showing more symptoms. She still cannot lay flat and sleep, or even nearly flat because she stops breathing. I have lost count of the times I have found her with blue lips and nails and had to shake her and speak sharply to wake her up and get her to breathe. She doesn't know it, but I have panic attacks if I don't check on her several times a night to be sure she is breathing. Again, we have yet to find a doctor who does more than say that she should sleep propped up in a recliner so she cannot lay flat. We could not even get a sleep study ordered for her - not even offering to pay cash up front for one.
How do I keep her safe and alive until I can find a doctor who will care enough to figure all of this out? I simply do not know how to cope with the latest sleep-cooking thing. I don't sleep more than 3-4 hrs at a time most days and about once a week I end up sleeping a good part of the day because I cannot stay awake any more. I know this is not good for me, but having my daughter just not breath because her body stopped breathing because she was laying too flat or having the house blow up because she turned a burner on but didn't let it light is far, far worse.
I have calls in to several docs in Tulsa who may be a good fit, but it is five weeks at a minimum to get her to see one of them. Every time I think things are maybe as bad as they could be, something else goes seriously wrong with her. We have gotten extensive therapy for 'conversion' and for the depression, etc... that are part and parcel of any chronic disease, much less ones that are painful and that docs don't give a hoot about. It isn't that we ignored that possible cause for the problem. Even psychiatrists and tdocs who have treated a lot of patients with conversion say that she does not fit and this is not conversion. It is seizures or some other neurological or biological problems and the psychological problems are stemming from the doctors not working to treat the problems seh is having that are caused by something wrong in her body. Five different highly regarded professionals have all told us this. Including one that now works at a place that Dr. Phil recommends - I saw her on an episode about girls who needed help for addiction and entitlement problems. We saw her before she went to work for the place that he recommends, but she was truly excellent.
Most of the problems are just staring off into space, meaning absence seizures. The neuros in this state who treat kids say it is conversion. The week long eegs have not been done properly and we had entire days (24+hrs) where all that showed on the monitor was garbage, or non stop black squiggles that mean the leads have come loose. No matter what we told to the nurses, they did nothing. Then someone in the tech dept would finally notice and they would send someone to re-attach them an we got scolded for not telling the nurses. After the first time, I made the nurses sign a sheet each time I told them the leads were loose. Six notices in a day and no one told anyone about the problem, and of course this was as she had problems. The nurses even noted some of the problems, but the docs ignored it.
Things are more complicated now. Days when she has a lot of staring spells, or missing time/time jumps, as J calls it, are accompanied by late night activity she has no memory of and during which she cannot string two logical words together. She speaks, but it is either nonsensical or it isn't in any language I know. I have again stopped sleeping at night because seh gets up to fix food. She does not know she is not awake at the time, and she is never aware of it the next day. Microwaving food is one thing, but she has turned the oven on four times. Twice I found food in the oven and seh was talking but made no sense.
Last night she turned a burner on but didn't light it. I smelled gas but was very tired and it took about ten min for me to realize it. I had to open the doors and keep them open for half an hour to air the place out.
The knobs don't come off of the burners here. She can navigate the childproof knob covers easier than anyone I have ever seen. She could at two. I am going to see if there are new ones out that might work. She is NOT doing this on purpose or consciously, which makes it that much scarier and harder to deal with.
ANY ideas to help us keep her safe would be HUGELY appreciated. She cannot drive and is not allowed to leave the house with-o letting us know. She can leave the house, but the last couple of times she left the house alone with-o letting someone know, she suddenly was somewhere and didn't know where that was, didn't recognize where she was or know how long she was gone. She was terrified, had no phone with her because she meant to go sit outside and read. She was over a mile away. She walked a couple of blocks and saw the bookstore a bit over a mile away from our home. She spent some money thank you had in his jacket and got a drink and then walked home. She didn't ask to use a phone to call me because she didnt' want me to worry. I was home in bed with a migraine and she didn't want to wake me up or worry me. husband was in class. She didn't know how to explain it to my folks so she just walked home. I was TERRIFIED when I found out. Our town is fairly safe, but it IS a college town and there are people here who could and would hurt her if they thought they could.
I HATE limiting her world, not letting her experience everything life has to offer. She is in great pain most days still, from muscle spasms that turn her muscles into rocks and can last minutes or days and no doctor ever seems to give a hoot. The seizures are more often and more complicated and showing more symptoms. She still cannot lay flat and sleep, or even nearly flat because she stops breathing. I have lost count of the times I have found her with blue lips and nails and had to shake her and speak sharply to wake her up and get her to breathe. She doesn't know it, but I have panic attacks if I don't check on her several times a night to be sure she is breathing. Again, we have yet to find a doctor who does more than say that she should sleep propped up in a recliner so she cannot lay flat. We could not even get a sleep study ordered for her - not even offering to pay cash up front for one.
How do I keep her safe and alive until I can find a doctor who will care enough to figure all of this out? I simply do not know how to cope with the latest sleep-cooking thing. I don't sleep more than 3-4 hrs at a time most days and about once a week I end up sleeping a good part of the day because I cannot stay awake any more. I know this is not good for me, but having my daughter just not breath because her body stopped breathing because she was laying too flat or having the house blow up because she turned a burner on but didn't let it light is far, far worse.
I have calls in to several docs in Tulsa who may be a good fit, but it is five weeks at a minimum to get her to see one of them. Every time I think things are maybe as bad as they could be, something else goes seriously wrong with her. We have gotten extensive therapy for 'conversion' and for the depression, etc... that are part and parcel of any chronic disease, much less ones that are painful and that docs don't give a hoot about. It isn't that we ignored that possible cause for the problem. Even psychiatrists and tdocs who have treated a lot of patients with conversion say that she does not fit and this is not conversion. It is seizures or some other neurological or biological problems and the psychological problems are stemming from the doctors not working to treat the problems seh is having that are caused by something wrong in her body. Five different highly regarded professionals have all told us this. Including one that now works at a place that Dr. Phil recommends - I saw her on an episode about girls who needed help for addiction and entitlement problems. We saw her before she went to work for the place that he recommends, but she was truly excellent.
You could perhaps get on line with the organization's website listed above, and find someone who would administer the test - it might not even require visiting a local doctor; when we had Kiddo tested prior to enrolling in Dr. Cade's autism study (back in '98 or '99 or so) all we needed were the orders from him (in Florida!), mailed to us, and we took them to the local draw lab for the blood draw - and they mailed them off to the appropriate testing lab. We paid out of pocket for the test, and this being an uncommon one I can't say how much you're likely to pay - it may not be cheap. 
