HOW in the WORLD does this make sense?

Discussion in 'The Watercooler' started by susiestar, Sep 8, 2011.

  1. susiestar

    susiestar Roll With It

    Jess has had a very long almost 2 years with the shaking, vertigo, hideous muscle spasms out of nowhere (you can visibly SEE the muscles in her arms, legs, torso, neck go from normal to rock hard in under 30 seconds when it hits - and there is NO pattern to diet, sleep, medications, anything) and now a new symptoms.

    She just falls over. Standing, washing hands at the sink, not the falls while walking that have been here for a few years that supposedly are not a symptom of absence epilepsy or any other kind but stopped when she was on lamictal - which to me says that it must somehow be related to seizures. Of course, I am just a mom, not a doctor so no one listens to me.

    It is dang scary to see your kid talking to you, normal, standing, and suddenly she is just down. Or to hear the crash as she falls. She is CONSCIOUS when this happens, does not always even feel dizzy or feel vertigo or think she is unsteady.

    WTF'ing H is wrong with the docs that NO ONE will care? The neuro we were seeing says he doesn't care to see her again, no other neuro at his children's hospital will see her. psychiatrist says this is NOT conversion or psychiatric - that she is amazingly well adjusted given all of this and the most he sees is a bit of perfectly normal depression over having the health problems. even the past stuff with Wiz is not a factor according to the psychiatrist.

    The neuro won't see her anyway. the family doctor has been trying for a MONTH to get another neuro to see her - no luck. I got a letter the other day saying she had an EEG scheduled - on AUGUST 2. I called, yup, it was August and now they want to talk to a doctor before they reschedule even though the referral and orders are good for 90 days.

    I am so angry and scared and furious and all sorts of other emotions right now. I just can't figure out WHY no one gives a dang but the family and friends. We even offered to pay CASH - ANY AMOUNT they wanted - both sets of grandparents kicking in whatever is needed and the docs just do NOT CARE!!!!!!

    I have called every pediatrician neuro in our state. I am now working through the adult neuros as she is 16 and maybe one of them would see her. I am used to fighting for my kids. I fought HARD for what Wiz needed and got it apparently, I know I got a LOT of success in getting the accommodations he needed or I provided them by homeschooling when that was needed.

    I know how to keep a paper trail, list of contacts, ask for help, etc.... NONE OF IT IS WORKING. I have spent a couple of weeks doing this now and am just so scared.

    This is NOT the life I want my child to have!!! What do we have to do to get help? She cannot produce symptoms on command, meaning that by the time an ambulance got here she would seem normal. The ER says there is no point going there because if they cannot see her in a crisis they won't do anything - and we cannot wait in the waiting room for a few days or a week until she has a symptom that is visible. So far the falls are not daily, but still too often. The ERs at the two children's hosps won't do anything either - we tried that route.

    Ironically, now that we have medicaid for the kids we have access to MORE specialists than we did with private insurance. All that means though is that more people are saying no to us.

    Thanks for letting me get this out. My baby should be worrying about boys and clothes and soccer and getting a driver's license - NOT about suddenly falling over. I even called Mayo and Cleveland clinic and they don't offer any real hope - they saw the charts I had sent and said that they are not the 'right place' for her treatment - that they would just do what the other docs did.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    This is not psychiatrist or even neuropsychologist stuff, in my opinion.

    I'm seeing... epilepsy? aneurism? brain tumor? mini-strokes? MEDICAL stuff.
    Push back to family doctor... who else out there can you see who can deal with this as a MEDICAL issue?
  3. susiestar

    susiestar Roll With It

    The neuro I was talking about was a neurologist. We have seen three different ones since seh was diagnosis'd with absence epilepsy in 4th grade. First doctor was incredible - rated top neuro (not top pediatrician neuro, top neuro) in the state several times, nationally well respected, and he stopped seeing us because he dropped our ins co and would not take cash patients (for health stuff I don't give a koi about conflict with my mom - and neither does she - she and my dad and husband's folks would pay enormous sums to anyone who would help and I would go begging in the street if needed to get the cash.). Next we saw a pediatrician neuro who first seemed very motivated to help and then suddenly was "not interested" - his words. Then I find a neuro who specializes in movement disorders in kids who is actually in our state at the kids' hospital. make that appointment and get pushed off on another psychiatrist who only treats migraines. After almost a year of treating Jess he suddenly had a "brainstorm" that it could be a movement disorder (what I had been asking for testing on all along). he sent us to Dallas for four days where they decided that since she had a normal EEG "off lamictal" - only off by about twelve HOURS - that she had no epilepsy or other problems. And since she could go do an activity for thirty minutes, her problems were all psychiatric.

    My instincts do NOT read this as psychiatric, we have seen several tdocs and psychiatrists who ALL agree - with ME. But EVERY medical doctor wants to tell me it is a psychiatric problem. We even saw a neuropsychologist who based his diagnosis of psychiatric probls as a cause on a ten min discussion and a one page report that some bimbo therapist wrote after exchanging names with Jessica and saying a couple of sentences to me while we were in a room with another doctor and his rn and 3 or 4 medication students. The therapist who wrote the report based it on NOTHING, quite literally. But I cannot get it removed and most docs take it as gospel even with records from psychiatrists and other tdocs who all disagree.

    We went to the psychiatrists because until we did no one was going to believe it wasn't that, even though my gut screams somthing is wrong. in my opinion that mom instinct is a zillion times more reliable than any medical degree.

    So that is why the psychiatrist/therapist stuff was done. Right now even the neuro who saw her is not willing to treat her migraines - and it was the ONLY thing he treated!
  4. InsaneCdn

    InsaneCdn Well-Known Member

    Unfortunately, this is where the homeschooling works against you.
    If she was in school, it would be happening in school... and the SCHOOL would be going nuts about it.
    At that point... you have an independent 3rd party saying there has to be a problem.
    Right now... Its You and Jess against the world.

    So. How can you get her into situations where someone else (not family) actually sees it happening?
  5. Steely

    Steely Active Member

    I am just going to rattle off ideas - I know you have looked into some of these - but it never hurts to brainstorm.

    *Potassium levels have been checked? Metabolic panel done including checking for vitamin deficiencies?

    Has she been screened for
    *muscular dystrophy (there are 9 different types) inflammatory myopathy, neuromuscular junction disorders, such as myasthenia gravis, or for Rhabdomyolysis?
    *Has she had an MRI done for stroke, aneuryism. or other brain blockages?
  6. Liahona

    Liahona Guest

    I'm so sorry. I'm thinking they are all stumped and instead of working with you (and acknowledging they aren't sure what is going on) they push you away. Have you looked at docs out of your state? Who is the best neuro in the nation? Have the other doctor or childrens hospital been able to say who could help you?

    Most doctor have huge egos and someone they can't "fix" right away would be very threatening to them. I'm not sure if it would be helpful, but a way to get their attention might be to contact the licensing place. (The people in charge of distributing licenses to doctors. I don't know what it is called.) But even if you got them to see you they might not be able to help.

    You could video tape her everywhere she goes until you get one on camera. That would prove that it is really happening.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    by the way - I'm on your side - we went through a whole stage where everything got blamed on "all in his head"... now? we've got dxes. But... its tough. (NOT the same kinds of issues, but... the whole medical/psychological standoff? yup)

    Between you and the family doctor, you need to find every possible test that can logically be run without a specialist's order. Gather all info ahead of time. Rule in and/or rule out... like Steely said, potasium? (that's bloodwork, if I remember right). Get the family doctor to take the investigation as far as possible. THEN when he asks for a referral, the letter will say ... and we ruled out x, y and z, and we see these anomalies on tests c, d, and f... Know what I mean??

    And THEN - do not refer to a specialist. See if you can get into a children's hospital. This is an "unusual" case, and may take a team approach.

    Fiddle-sticks. If $$ isn't an issue, call Mayo. Tell them you're not getting answers, and need a start-over evaluation - a fresh look at the WHOLE spectrum, including re-evaluation of any prior dxes.
  8. mstang67chic

    mstang67chic Going Green

    I pm'd you.
  9. keista

    keista New Member

    :consoling: So sorry you're dealing with this koi. I totally see it just like Liahona does.

    Sorry, no ideas, but am sending positive thoughts your way.
  10. Lothlorien

    Lothlorien Active Member Staff Member

    Have you called your ins co? I would call them and tell them that you need a specialist-don't care where, but need one before she ends up in a coma. Don't care what state, but you want to see the best. I know it's a drive, but you really need to call Mayo and see if you can get the ball rolling with them.

    This is the info.

    I would get on the phone with that (insert choice of cursewords) doctor that doesn't want to see her anymore and tell him that you want him to get you a referral to the doctor she needs at Mayo and to do it before your daughter ends up in a coma and you end up suing his butt for calling this psychosymatic.
  11. susiestar

    susiestar Roll With It

    Mayo has already said they won't do anything more than has been done. That was a month ago. Maybe the sudden falling would make them move, but having her body freeze in one position for ten min to an hour at a time where she is alert and if she fights can blink her eyes to answer yes or no questions but it clearly is a struggle, at least to me - she has maybe fifteen to twenty seconds where seh gets super hot first and then she freezes like a kid playing freeze tag - and this has happened while bent over to fill the cat's bowl, on the toilet, watching tv, running the vacuum, taking a shower, etc.... that didn't make any of them think that she needed help or to be seen so I just don't know if this will convince anyone but us yet again.

    She can't go to school. No way. they won't even register her because the medical issues. I tried to get her enrolled because she really was determined to try it and get an IEP to make it work when she couldn't go to school. they saw the doctor info and said that it was too much of a liability issue and since we had homeschooled her we could just continue that and she could go to college with a GED. I don't know HOW they can refuse to register someone, but I can't fight that battle and the health stuff too. She is so motivated to learn, so curious, that her education is ahead of schedule on most things but writing essays. Even with typing quite well she just cannot handle long assignments. Include taht she is on NO antiseizure medications because an EEG while on lamictal showed no seizures, and she is blanking out witha bsence seizures a LOT. I notice them, but I pay attention to her. I can tell when she is ignoring me because she doesn't want to do something and because she honestly has no idea she was told to do it or that we discussed it. It just makes me disgusted with the docs here.

    I just know I can either use the energy I have to fight for her health or to get her to attend school, I can't handle both right now and her education is fine. We NEED that outside party to see the problems, but even when the nurses at the Dallas hospital noticed things and charted them the docs said they didn't happen.

    thanks ladies. I really needed to vent on this. the pm is much appreciated and I will check into that, thanks 'Stang!
  12. Andy

    Andy Active Member

    "Today, treatment areas cover a wide range of pediatric orthopedics, including scoliosis, limb discrepancies, clubfoot, hip dysplasia, and juvenile idiopathic arthritis, as well as cerebral palsy, spina bifida (myelomeningocele), and other neurological conditions that affect ambulation and movement."

    This is from the Wikepedia info on Shriner's Hospitals for children. I think you should write a letter to the organization asking if they would please accept Jessie for the "other neurological conditions that affect ambulation and movement."

    Google Shriner's Children Hospitals - the list I saw would indicate that not all of them specialize in the same services. Write directly to one with the orthopedics OR if you have a chapter in your home town or nearby, write directly to the organization.
  13. keista

    keista New Member

    Have you videotaped the "freezing" episodes? If not, get the camera ready for the next one (we can still hope and pray there never is a next one) Catching her falling down would be next to impossible unless you had surveillance set up, but that 'freezing' thing. hmmmmmmmmm

    Yes, yes, yes, try Shriner's When you contact Shriner's include the video.

    Just like all the other "bang your head against a concrete wall" problems on this board, you might have to contact media to get help. It doesn't have to be a expose kind of thing either. Just the other day, the local news aired a piece about a woman who was getting divorced at the age of 74, and due to technicalities, had to move out of her home. She contacted the news to see if they'd post her plea for someone to "temporarily" take her dog because the dog couldn't move with her at the moment. Apparently she was OK with all the legal stuff, just needed a home for her dog.

    Anyway, you could ask the local news ppl to run your story and post your plea looking for a compassionate Dr or Hospital. You know, I often see local news in Dr and Hospital waiting rooms.
  14. HaoZi

    HaoZi Guest

    Shriner's, St Jude's, or Shands might be good hospitals to try contacting for this, and yes get video. You and her have been through enough, neither of you deserve to be going through this, too.
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    It has been my unfortunate experience that when doctors can't figure something out, rather than humbly saying, "I don't know" they say "Has to be a psychiatric problem." I am so sorry your baby is going through this and I wish I could help more. I just hope somebody gets to the bottom of this soon. I think you've gotten some great suggestions.

  16. FlowerGarden

    FlowerGarden Active Member

    I would try an orthopedic specialist. I have a herniated disc and arthritis in my neck. I go to an orthopedic who specializes in the spine/neck/back. I do have muscle problems with it. My muscles tighten & spasm. My arms & hands tingle or go numb so that my arm and hand go like rubber. Sometimes my arm seems to move by itself. The doctor always asks if I have urniary problems, etc. because the nerves run down to different areas of the body and work other areas of the body.
  17. mstang67chic

    mstang67chic Going Green

    PM'd you again!
  18. Hound dog

    Hound dog Nana's are Beautiful

    Susie, falling over suddenly is a type of seizure. It's one of the odd behaviors that first brought me to the board, along with a long list of other behaviors Travis had going on at that time. He also walked into walls for no apparent reason or would fall flat on his face for no reason.....various other odd complex behaviors eventually discovered to be seizure related. His sleep deprived EEG was a long extended seizure with no "normal" brain activity. Once strong seizure medications were introduced, those unusual behaviors vanished as the medication reached proper blood levels.

    I'd never heard of such a thing until it happened to him. Scared his neuro who'd been practicing for 30 yrs, never seen anything like it before. He was much relieved when the medications worked. I'm having a brain black hole tonight and can't think of what type of seizure he called them......sorry.

    This is medical. Just because docs you've seen so far have not found the answers doesn't mean it's not medical, means they haven't found the answers yet.

  19. JJJ

    JJJ Active Member

    Try Shriners but without sending them all the old doctor's notes. If current pediatrician is on board, then just ask him to send a letter summerizing concerns and test results.
  20. Mamaof5

    Mamaof5 Guest

    Start video taping her. Daily.