How Do I Keep Us, and Jess, Safe?

Discussion in 'The Watercooler' started by susiestar, May 11, 2013.

  1. susiestar

    susiestar Roll With It

    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.
  2. Hound dog

    Hound dog Nana's are Beautiful


    I can tell you what worked with easy child for sleep walking. I know that what Jess is doing may not be sleep walking.........but I've seen sleep walkers who you'd swear we wide awake soooo.......

    After easy child went to sleep I put up baby gates. One at her bedroom door and one at the top of the stairs. I did it after she was asleep so she'd not know they were there.

    When she got up to roam she would bump into the gate (although her eyes were open) and it usually was enough to prevent her from leaving her room. Because she was actually never occurred to her to remove a gate she didn't know was there. Know what I mean?? By placing them after she went to sleep, there was not even the subconscious knowledge the gates were placed in her way. I removed them before she woke in the morning. A PITA but it kept her from hurting herself at night. Usually it was enough to send her back to worse she'd roam around her room a while.

    I hope you can find a doctor to help. I have a feeling it is either something rare or something new, otherwise they'd have thought of a diagnosis by now.

  3. mom_to_3

    mom_to_3 Active Member

    Susie, I don't have any advice for the problem you are mentioning tonight, but was wondering...... I find it most unusual that almost all of the physicians you encounter in Oklahoma behave in such an unprofessional manner! I say that not because I don't believe you, but because I have only run into one or two quacks in my lifetime. They must have all migrated to Oklahoma. lol , but not really funny. Have you considered filing a complaint on each and every doctor or nurse that mistreats or under treats your family? There has to be a way to get that stopped there. You are an excellent writer and reporter. I'd put those skills to use and do everyone a favor and start making reports. I'd even contact your news people and congressman. Here are a couple of links to get you started: and I hope this gets you started to al least wiping out some of the bad so that the good can come in. Let us know how this goes.
  4. buddy

    buddy New Member

    I hadn't heard for so long I was hoping she wasn't going thru this as much. Quin has gone thru some crazy sleep walking and talking times over last year and it seems for him very anxiety related. happily he mostly wants a response of any kind from me (I often can say anything and his brain hears what it wants) then he puts himself to bed. sometimes is so mad though. I can't imagine it going as far as your daughter is experiencing.

    i sure hope you can find a doctor. have you ever seen a geneticist who maybe could put the big picture together? how obscene for a clinic to close and not inform our refer patients. I've never had that happen. my word!
  5. FlowerGarden

    FlowerGarden Active Member

    There are some alarms that you can buy that are battery operated. If she sleeps with her door closed, you can get one that activates when the door opens. If she sleeps with the door open, get one that goes off when the light beam is broken. The noise might wake her up and it will alert you that she is on the move in her sleep. Cooking wise, can you turn your gas off on the stove/oven with the shut off valve before you go to bed?
  6. HaoZi

    HaoZi CD Hall of Fame

    On the going outside thing, could you get those locks that also require a key on the inside to unlock?

    As for the stove/oven... how handy is husband? Because he might have to fashion something specific to actually cover the entire stovetop knobs and all at night. Something nice and heavy that requires effort to move and will make noise if she does move it (and that you can maybe hook one of those cheap door alarms to?) to alert you if she's in there. If locking the kitchen door itself isn't an option, depending on how your house is designed (ours is open doorway, for instance, there is no door at all).
  7. Signorina

    Signorina Guest

    Oh my...
    I think the gate idea is really good.
    How about a baby monitor?

    Does the stove have a power shutoff or gas shut off valve? You could turn it off before bed.

    I'd add a door alarm too. Even just a chime or sleigh bells.
  8. Rabbit

    Rabbit Member

    sending hugs and prayers. also Is there a teaching hospital or a university hospital near u? Sometimes they are more aware of things.Sometimes you could talk to someone in the doctors office about being on a cancellation
    list or an emergency squeeze in at the end of the day.Rabbit
  9. nerfherder

    nerfherder Active Member

    Far as the muscle thing goes, a friend of mine inMMainehas an adult daughter with a rare condition called, I think, Stiff Person Syndrome. Might be worth looking up. It isn't any fun but some of the symptoms are treatable.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I think we have actually talked about that stiff person disease in regards to J I still think it might be the answer but getting a doctor to actually do the correct testing on Susiestar's daughter seems to be the problem. Also the fact she seems to have some form of absence seizures complicates the picture.

    One thing I have noticed recently with doctor's is that they seem to have an issue especially with patients who's parents also have issues. Especially if the parents are overweight, have obvious pain and physical disabilities and heaven help you...any mental health problems. You might as well forget trying to get help for your kids. I am glad no one knew about me when my kids were young.

    How close are you to that PNP center in Dallas Susie? Is there any way at all you could get her there? I am telling you that I have written to Dr Phil and gotten a response from him and if I could have gotten Buck to agree to actually go on the show they would have had us on there. Buck refused to even let me take his photo. They actually talked to me on the phone but without Buck being involved it just wouldnt be much of a show. I also couldnt see what good it would do for me and Tony to go through with it because it would just make things rougher between us. However,its possible that he could help you. Write him a letter and tell him how you have tried and tried to find out what is wrong with Jessie and you simply cant. He has a place on his website to send in an email and if they are interested they will email you back. It may take a little while but then they will send you an email with a few questions and then its fast.
  11. nerfherder

    nerfherder Active Member

    Well, I can ask my friend if her kiddo's doctor can point me at a list of docs in the US who will test or make a referral for testing. Is there an interest in me doing this?
  12. susiestar

    susiestar Roll With It

    Nerfherder, YES PLEASE. Be aware that we have been to EVERY pediatrician neuro practice in OK and also to a children's hospital in Dallas. Same results from each place. Actually most of the pediatrician neuro practices told us they were 'not interested' and those are the exact words they used. One of the docs is supposed to be one of the top pediatrician neuros in the country and he has papers that say that most of the times seizures are caught by parent observations and not by eegs, his figure in his paper was 80% are not caught. But when J's were not caught he refused to allow us to schedule any other appointments even with reports from yet another psychiatrist and therapist that he picked out. His pediatrician neuropsychologist (who helped him pick the psychiatrist and therapist) told us that it was conversion even if it did not behave like conversion or respond to treatments for conversion. It broke my heart and ****** me off to no end because we tried to do all that we were asked to do. MANY of the docs read the report written by the student therapist and take it as gospel. The hospital system will not remove it from her records or allow the letter I wrote disputing the report to be added to them. As soon as they read that report they drop us and it has happened time and time again.

    husband worked on the stove and managed to get the knobs to pull off. They had a ton of grease buildup from past tenants that he cleaned off, so now we can take them off at night. It will make life so much easier. I realized this morning that he totally forgot when I woke him up about the gas the other night. He doesn't wake up easily at night so he didn't have any memory because he didn't have to actually do anything. He spent an hour on those knobs, and that really impressed me. I was worried not only about us, but about the other three families that are in our building - a gas explosion would get us all.

    husband loathes Dr. Phil, but if it will help J I will send an email. I will also contact his place in Dallas to see if they would help. My mom recently told me to find help for her, period. They will pay to fly us ANYWHERE and for any treatment. I was so surprised I was in tears. Dallas is about six hours away, and that isn't bad. we already went to a hospital there for a week. Hard drive as it was just the 2 of us, but we did it and I am in better shape now than I was then.

    Thank you, every single one of you. I will contact any doctor I can find. That stiff person thing might be similar. She does have times her body freezes. She is conscious but cannot move. Docs here, every single one, tell me that she is making it us. gee, I cannot move her limbs at those times either. I tried so hard one time at her insistence that she ended up with bruises from my hands (she kept begging me to push and pull harder to get them to move. Not even with all my strength could I move her legs or arms a centimeter. It is terrifying. But finding someone who cares? Even harder.
  13. nerfherder

    nerfherder Active Member

    OK, I chatted with my friend Carol, and here's what she had to say:

    "NORD may be a resource: The test in question is for anti-Generalized Anxiety Disorder (GAD) antibodies. Positive for antibodies points to a group of about 8 syndromes, then you narrow it down by those symptoms. Perhaps pointing out that the test could rule out some things would help."

    So you have a _specific_ test to ask for, not some weird sample by some flake working out of a strip mall. :) 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.

    My friend is interested in how this comes out for you, let us know - is it ok if I pass along how things go?

    She pointed out that a lot of people with SPS end up in wheelchairs before a diagnosis because of the same problems you're having. She says they were lucky that they had a specialist relatively nearby.
  14. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh another thing I wanted to mentioned her sleeping in a recliner. Check out places like thrift stores that get donations especially that are associated with the Red Cross, Churches or Hospitals or ask on Freecycle for a used hospital bed. I got a really nice hospital bed at my local thrift store that is awful for clothing and really much more but they get a lot of decent medical equipment because people and/or I think rest homes donate the medical equipment that is used after people are moved from their homes and end up in nursing homes. It cant go with them.

    Most of the newer hospital beds are electric and both the heads and foot sections go up and down by push of a button. She should be able to get herself into a comfortable position. The only thing I dont like about mine is the mattress that comes with mine but I dont know that they all come with this mattress. I am going to get a memory foam one in a few weeks from walmart because they are the cheapest place to get them. I can get a twin in a really great thickness there for less than 150.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Great ideas here! I'm sorry I have no input other than sympathy and hugs.
  16. nerfherder

    nerfherder Active Member

  17. susiestar

    susiestar Roll With It

    Thank you ALL! Nerf, feel free to pass info on. I am a BIG believer that with-o parents sharing info there would be very very little known about any and every problem a child has. I know that with-o info shared here there would have been little help for Wiz ever.

    Thanks for all the websites, I will be on all of them.

    I spoke with J about the knobs last night and she understood. She feels more secure knowing that we will take that step and she does not see it as a punishment. I was worried that she night think it was a punishment, but she didn't at all think that. She said it was more like a railing next to the stairs - something that keeps you safe and tells you the person who put it there cares about your safety. I am truly lucky that she sees it this way, in my opinion.
  18. InsaneCdn

    InsaneCdn Well-Known Member

    It helps so much that Jess is on-side.