Lips Turn Blue Laying Down

Discussion in 'The Watercooler' started by susiestar, Feb 8, 2012.

  1. susiestar

    susiestar Roll With It

    Jess has developed yet another problem. We have had to move her to the recliner to sleep because her lips turn blue if she is laying down!!! We have had to attach a board to keep the recliner from going all the way back because even that is too flat for her to be able to breathe. Laying down flat makes it hard to breathe even while awake and/or not having the full torso muscle spasms, regardless of the position she is in (on her back, front side, curled in the fetal position/whatever).

    This happened at the hospital during that 5 day EEG but only once and they didn't really comment on it other than to say, "Hmmm. That is odd." They did tell us to not put the head of the bed down all the way. Very helpful, weren't they?

    I have a call in to her doctor because it has started to become a regular thing. NOT one we want. We HAVE told the doctor about it in the past (both reg doctor and neuro doctor) and neither of them seemed terribly interested/concerned. It now happens 2-5 times a week!

    We have to get a sleep study done. They told me she didn't need it at the last appointment, but if she kept having problems to tell them. I have gotten to the point that I can't sleep well when she is asleep because I keep checking on her - this really scares me.

    When she wakes up with blue lips, she is NOT breathing well. I don't mean she is wheezing, she is not able to fully expand her lungs due to muscle spasms. We have her use albuterol at that time, but there has to be some way to stop this. The albuterol doesn't address the real problem the way it would if this happened because she had asthma. She has albuterol because when she was a toddler she would wheeze when she got a cold, which they said meant she had mild asthma. Now they want her to use it when the muscles in her torso spasm because she is unable to fully expand her lungs then. By "spasm" I mean they turn to being hard like concrete very suddenly no matter what she is doing. The docs wanted to ignore this until I started having her use thank you's peak flow meter and showed her numbers dropped by almost half when the spasm hits. She can be doing anything or nothing when the muscles spasm.

    I am sick of this. I want my kid to feel good. I want her to be able to breathe all the time and not always hurt. Is that so much to ask for?

    I don't know how I would cope if she died or went into a coma because she was asleep and couldn't breathe because her muscles spasmed.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Susie. No!

    Whether they know what to do or not, this is a medical emergency.
    There are all sorts of side-effects to oxygen deprivation - and that is what blue lips mean.
  3. DaisyFace

    DaisyFace Love me...Love me not


    That is aboslutely terrifying! I cannot BELIEVE that the doctors are not scrambling to fix this!

    Is there anyone in your medical group/hospital/practice who is working hard to diagnose this little girl?
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I think I sent you a pm about something I saw on the tv about conversion disorder or something like that? I saw these kids on TV that were having really horrible spasms that they couldnt control. It was on a Dr Drew show. They were thinking it might have something to do with a toxin but werent sure.
  5. buddy

    buddy New Member

    Oh gosh, my friends son has this happen and they added a pulse oximeter and sure enough his oxygen would go down to the low 80's or worse... this kid has a ton of brain damage and he gets worse and they complained he didn't sleep well for years. He is now on cpap and it still does not do enough without added oxygen. They have to bleed a lot of oxygen into the cpap face mask and the pressure on the mask is at a level that is already past what the pulmonologist is saying works well...people end up not complying because of the pressure...

    Can they get you home monitoring equipment with an alarm??? At the very least until they know what is going on.
  6. Mamaof5

    Mamaof5 Guest

    I can't remember if the docs talked about dystonia or if you mentioned any testing for it...

    Dystonia - Wikipedia, the free encyclopedia

    Her symptoms really strike me as multifocal or generalized dystonia symptoms. I've only ever seen what dystonia looks like in video clips and been described to what it looks and feels like but both seem very similar to your daughter's situation. Also, could they get her on an apnea machine just to ease your mind at night (not that it does, my youngest had one for preemie induced sleep apnea and cardiac issues)? At least you have a machine that can help prevent breathing issues in their track with faster response times for treatment in home...

    I'm sorry your family is going through this...I don't know what else to say other than I'm here praying for all of you.
  7. Hound dog

    Hound dog Nana's are Beautiful

    Susie, I know you're tired of the fight. Trust me, I do understand. But this is getting very serious, regardless of the cause. You're going to have to go full blown warrior mom on steriods (I put it that way cuz I know you've already been doing full blown warrior mom) and really dig in your heels and get stubborn.

    If Jess's lips are turning blue her O2 sat is dropping waaaay too low. That should NOT have been poo pooed at the hospital. Still ticks me they did that, but guessing because it was a one time deal. Now that it's becoming a common event..........oh, no! someone needs to at least start thinking outside the box to treat her condition even if they can't figure out the d@mn cause.

    Jess is always in my prayers. Sending many strong supportive (((hugs))) your way.
  8. susiestar

    susiestar Roll With It

    Janet, I am sorry. I meant to respond to your pm and got sidetracked. We have had the conversion diagnosis but here it does NOT mean the type of treatment dr. drew meant. Here it means "it is all in your head and you are crazy. Bye." LITERALLY. We have had the pediatrician say conversion, one neuro did, the neuropsychologist did BUT he refused to do ANY testing, clearly had NOT read ANYTHING in her file and gave this diagnosis after spending 20 min talking to me and saying that actually Jess had NO medical problems and the problems were that I have conversion and am causing her to think she has health problems. I am "talking her into them". I didn't post about this because it was just too much to handle and was the 3rd or 4th appointment in a day of disastrous ones. Conversion in Dr. Drew's world is NOT what it is here in OK, at least not in the children's hospital that we were seeing dr's at.

    We are doing what we can, I have a pulse oximeter coming (amazon, the doctor wouldn't order one or oxygen because he had her lay down for ten seconds in his office and she was fine).

    I have come to the conclusion that we have to work through what we can until she is 18 and then we will be able to see adult dr's (as we can afford them) and then maybe someone will take this all seriously.

    I do see a lot of dystonia in her, but since the eeg showed "nothing", well, it jsut can't be that. Of course they didn't let her DO anything but sit there and it is when she is exhausted and has been moving around and doing things that she has more of the problems. Plus over 30 hours of the test was useless because the leads were loose and no one woudl come to fix them. The monitor looked like something Wiz drew when he was little and furious - all black scribbles - which they said was "muscle artifact" and meant that they were not getting any readings.

    I read the epilepsy/movement disorder forums and hear all about how so many people had LOTS of eegs that showed no problems even when the person was having symptoms at that moment, and how their doctors said that sometimes they just can't measure the part of the brain having the problem and how medications are given even with-o the eeg showing things. But our docs have all sworn that there is NO WAY that the brain can have a seizure that the eeg cannot measure. even the movement disorder guy in Dallas told me that.

    Plus she has been on anti seizure medications for EVERY eeg since the one seh had in 4th grade. Even this last one she was at 300 mgs of neurontin 3x per day but they SWORE that they would still see seizures even though the medications had stopped the absence seizures. I know it stopped them because she wasn't having "short days" (her term for days when she is doing soemthing and then suddenly it is ten min or three hours later). But the doctor said that wasn't possible (why? he wouldn't say) and he refused to take her off the medication.

    The docs and techs all seem to believe that seizures will still show up in the brain and the medications just stop the seizure behavior so that it isn't a problem for the patient.

    I KNOW that this makes no sense and is NOT what the medications do. I just cannot get any logic or common sense across to these people. The neuro even told us that as long as her lips "pink up" when we wake her up - and she does wake up - then the blue lips thing isn't a big deal. At one point he tried to say we should have her take her makeup off before she goes to sleep. I guess ALL teen girls wear blue lipstick all the time. How silly of me to not know that.

    I am so tired and so scared and so angry and so sick of/from/with all of this. No one seems to listen to us, and they refuse to read the Parent Report, and I have done everything I can to try to help her. I feel like a total failure because my baby is in constant pain, has all these strange and scary things going on, and all the docs seem to think that it is for attention.

    Well, except for the psychiatrists and tdocs. The psychiatrists think it is clearly a neuro problem and related to seizures or a movement disorder. The tdocs think she is handling things in a very healthy way (mad as hell, still fighting to do what she can even when it hurts like crazy and she knows she will end up in worse pain all night adn the next day) and is NOT showing signs of conversion or other therapist type problems except extreme frustration because no one will listen and do something. We have 2 different psychiatrist evaluations that say that this is NOT what the neuro said it was (neuro and family doctor sent letters, charts, notes before we saw the psychiatrists) and they see clear signs of seizures/movement disorders and she should be treated with medications for that even if the eegs show no problems - one letter even says that it is entirely possible for the seizure activity to be in a part of the brain that the eeg is unable to record.

    So that is where we are now. still waiting for the doctor to call. Frustrated as all get out. And scared.

    husband and I are the only ones who seem to give a hoot about her medical problems, at least other than y'all and my parents who don't know even 1/10th of them. mostly because I don't have a wonderful relationship with my mom and after she used a lot of the stuff with Wiz against me, well, fool me 2x shame on me. (Mom and I are trying, but I have put up a lot of walls for a reason.)
  9. TerryJ2

    TerryJ2 Well-Known Member

    Sheesh, I don't know what's worse, the blue lips and lack of oxygen, or the cr*ppy doctors. Aaaaargh!

    You've gotten some great ideas here, so all I can do is send hugs.
  10. HaoZi

    HaoZi Guest

    OMW that's so scary! She ever been seen in the ER when she's like that? Maybe there's a higher chance they've seen it, maybe even in someone older than in someone Jess's age and it's being overlooked because of that. I hope you find answers and help soon.
  11. InsaneCdn

    InsaneCdn Well-Known Member

    Jess is 15. In our part of the world, that's a grey area. For MH stuff, they want you using "youth" psychiatrists and tdocs. But for physical stuff... you can go either way. If the psychiatrist and therapist are behind you on this, between you can you find out who the top-notch adult specialsts would be? And then start a campaign to get her seen by them because the pediatrician-level doctors are not able to help? Who says there has to be a split between pediatrician. and adult for most things, anyway. Do they require you to go to a pediatric orthopedist to get a broken wrist set for a kid?

    Next... can you get your hands on a used hospital bed? If this is going to be even medium term, and it might be, its a better option than the recliner. You can set the slope of the top half, then pull the knees up sligtly, and she won't go sliding "down", but its a LOT more comfortable than the recliner.

    Worrisome thought: the pediatrician docs might actually know what is going on, and it might be the kind of thing that they just don't want to put a label on... Know what I mean?? Especially if there really isn't anything they can do to help? That doesn't excuse their behavior at all - and in any case, they have a "duty of care" that includes things like comfort - and fighting for air is NOT "comfort".
  12. Hound dog

    Hound dog Nana's are Beautiful


    Travis' pediatrician neuro in cincy was awesome. took an open minded adult neuro to think outside the box. I'd like to say that before the stroke with the obvious right sided facial droop, this guy would've been willing to think outside the box and run that blood test. Honestly, though, I'm not so sure, although he has an amazing rep for that sort of thing. pediatrician neuro wouldn't go beyond the fact that his "encephalopathy" was diagnosed static, as in not progressive. Dxes be dammed, when symptoms say otherwise. But in my own long often tend to get stuck on dxes once one is made and can't get past it to see that it could maybe only be a piece of the bigger picture, or wrong completely. Unfortunately for Travis, he had broad symptoms over a period of many years (his whole childhood). That's an awfully huge picture for docs to grasp. When I approached the adult neuro over the stroke and the fact that polycythemia could be the cause.......Travis had never been his patient........I had brought along photos of him from most ages of his life. doctor believed me though and I didn't have to pull them out. But that is how bad it had gotten. I had an enormous argument laid out to plead my case, but he saw no harm in a simple blood test and thought the reasoning made sense........and left me with my mouth hanging open.

    I pray every night that you'll eventually find the answer for Jess and the proper treatment. It's really hard to read your posts about this difficult journey because it brings back so many memories and emotions from mine with Travis.

  13. TeDo

    TeDo Guest

    Susie, I am so sorry you guys are going through all this. I have no advice to offer but I do have very strong shoulders, wide open arms, and open ears. I will be praying for you and Jess. I can only imagine the feels you have to deal with every day. As I read your posts, my heart just aches for you both.

    Please take care of yourself in any way you can. {{{{HUGS}}}} to you both.
  14. Signorina

    Signorina Guest

    Forgive me if I am being dense -

    but have they checked her CO levels?

    Also, do you have a trusted dentist? I know our dentist (who is also our good friend) is on the frontline of sleep apnea disorders and other breathing issues - and is pretty well versed in it. If you can't get the dr to move forward, maybe you can get the dentist to start the ball rolling?

    I can't imagine how frightened you must be - and Jess too. {{{Hugs}}} I hope you get answers soon
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I mentioned dystonia years ago after seeing a woman on Dr Phil I believe. Evidently one of the doctors ruled it out.

    I wouldnt be so quick to rule out conversion disorder. I realize they are going to tell you it is psychiatric and "all in her head" but in a way they are right, it is neurological and it is in her head! The treatments they would most likely give her would be the same no matter what. I would go back to that Dr Drew show and attempt to see what those kids were on. I believe the worst ones were on an AP and a strong anti-spasmodic. I take zanaflex for that and it works pretty well. It will make her loopy at first but she will adjust fairly quickly. I am really not sure what I think about the neurontin for her epilepsy. I guess if it works, dont mess with it. It also helps with muscle pain so that can be a good thing. They may want to consider cymbalta to help with the anxiety and pain.

    This is not at all to say it is in her head psychiatrically at all but all of our disorders start off in our brains at least in most cases. They brain tells our bodies what to do on some level.
  16. DaisyFace

    DaisyFace Love me...Love me not


    I was originally thinking that with all the attention on the girls in upstate NY with the neurological symptoms (it was featured on the news here the other night) - the press might be interested in your story...but that looks like a dead-end, too.

    It looks like most docs are dismissing it as mass hysteria...

    while other groups are trying to pin the blame on the Gardisil (HPV) vaccine.
  17. Hound dog

    Hound dog Nana's are Beautiful

    Well, in defense of the docs............ I looked at that story and thought the same thing, oh not all of them, but there are most likely some (a small percentage at least) that are either faking or fall into the mass hysteria group. The problem lies in if a doctor gets enough of the latter two types it's going to influence his judgement on the ones truly having symptoms. Not to mention muddy the waters for them trying to get at the root cause ect. I seriously doubt the vaccine is the cause. People just have no clue the rigorous testing those things have to go through before being released to the public. If those types of reactions were possible, they'd have seen it long before it reached the general public. But even while there may be fakers and those who fall under mass hysteria (as I've said time and again power of suggestion is a really huge thing for some people), docs don't need to be poo pooing such things. Ok so dismiss those two groups for what they are and ignore them and focus on the kids having the actual's not that hard. ugh I'm wondering if it could be an unknown or uncommon parasite in Jess' case. I watch a ton of medical (non fiction) type programs and I recall one that had a woman a neuro mess that kept progressively getting worse........turned out to be a parasite. Also wonder if an unknown bacteria or virus might be the culprit (marg might be able to tell how realistic that is, I'm no expert when it comes to microbiology) I've wondered about toxin on and off with Jess, but no one else shares her symptoms even in a much milder form, which would be odd. I will say, now this is my personal educated opinion and I am NO expert, I don't buy into the "autoimmune" disorders.....oh, they're disorders / disease processes.....but it's the autoimmune part that bugs me. Studying these disorders ect always leaves me thinking they just really don't know the cause, but instead of just admitting that and continuing to look.......they dismiss it as the body has gone wonky on itself. in my opinion, the human body works much better than that. Autoimmune reminds me of the way docs in the past used to dismiss illnesses that they couldn't understand. The body is very much a cause and effect sort of machine. Know what I mean?
  18. mstang67chic

    mstang67chic Going Green

    I don't know if you remember or still have my pm's with a hospital but I'll resend if you need it. I think you should start going outside of your area. It seems the doctors there are morons.
  19. susiestar

    susiestar Roll With It

    I may, I will have to check. Right now we can't go too far. She just isn't up to it. We see the doctor next week and will see what can be done then. They wanted us to come in today, but we are 45 min away and the only opening was 10 min from then. If it keeps happening we will go tot he urgent care or ER in the city (unless we need to call 911 of course). I say the ER int he city because they have a kids' ER and some common sense.
  20. DammitJanet

    DammitJanet Well-Known Member Staff Member

    It still looks incredibly like dystonia to me. I saw a man on mystery diagnosis last night and he had what I imagine jess does from your descriptions.