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911RN

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  1. Like
    911RN got a reaction from reactive in Major improvements on high dose niacinamide   
    Interesting, high dose niacin can cause side effects of flushing, hot feelings. Has she suffered from this or complained about this? Taking 1 regular aspirin 1/2 hour before can lessen side effect- what we do for adults. But, since it is a child and aspirin is not recommended for them, I was just wondering how she was tolerating it.
  2. Like
    911RN got a reaction from reactive in Ceftriaxone SHOT (IM)?   
    We mix Ceftiaxone with Lidocaine in ER to make it less painful. With or without Lidocaine- it is NOT nearly as bad as Bicillin. My children have had 3 days of Ceftiriaxone IM in past and they both did fairly well- no major issues with pain at injection sites. It hurts at time of injection but not crazy, long lasting pain.If using Lido- patients report very little pain at all.
     
    Bicillin is thick like syrup, we have to use larger needle just to get medicine to go from syringe through needle into muscle. Plus, the thickness of medicine in the muscle makes it more painful. Ceftiraxone is not thick like Bicillin. Usually better tolerated.
  3. Like
    911RN got a reaction from nicklemama in Your input please   
    I would say this is more CAPD- central auditory processing disorder.Has nothing to do with hearing and everything to do with the brain and how it processes information it hears.
  4. Like
    911RN reacted to BeeRae22 in Desperate mom reflection   
    One year ago tonight, on New Year's Eve, I was sitting in this exact same spot, in my bed with the lights off and the silent tv on.... A desperate mother scouring the Internet trying to figure out what was happening to my daughter.
     
    She had been fine, until mid October. Then she stopped eating. She began raging. Hitting, scratching, kicking. She hated school. She was depressed. She picked her skin raw. She cried out in her sleep. She was afraid all the time. She was starving.
     
    I was terrified.
     
    Some time after midnight I came across some information about Pandas. A big, bright lightbulb went off. This was it!!! I knew instantly.
     
    We've come a long way since then. Dd is finally eating again. She is flairing this month from a cold, but I now know that she'll get through it. We're haven't reached the end of this road, but we will.... One day.
     
    I am not sad to see 2014 go. This has been the most challenging, difficult and heartbreaking years of my life. My heart goes out to anyone who might be reading this, because that means that you've been touched by this awful disease in some way. May your new year bring progress, health, love and peace to you and your families. Thank you for being there. God Bless.
  5. Like
    911RN got a reaction from BeeRae22 in Tired of Therapy   
    I believe that in conditions such as PANS or any other chronic illness/state that it is OK to take a break. Sometimes it is just necesary to take a breather from the hustle and bustle and take stock in where you are, what have you achieved and where you are going. An evaluation period of sorts. I believe you answered your own question...cut back to every other week. Go from there...if better, then stay at that. You say therapy has been useful but you all sound tired. This journey a marathon not a sprint. It is OK to slow down and walk... not run for awhile.
     
    My DS14 has had "issues" since age 4. 10 years is a long time. I go through periods of doing nothing and then periods of doing alot. He has to be ripe for certain situations and the things we do. Sometimes just a tincture of time is the right thing that progresses us to the next level.
  6. Like
    911RN got a reaction from MomWithOCDSon in Tired of Therapy   
    I believe that in conditions such as PANS or any other chronic illness/state that it is OK to take a break. Sometimes it is just necesary to take a breather from the hustle and bustle and take stock in where you are, what have you achieved and where you are going. An evaluation period of sorts. I believe you answered your own question...cut back to every other week. Go from there...if better, then stay at that. You say therapy has been useful but you all sound tired. This journey a marathon not a sprint. It is OK to slow down and walk... not run for awhile.
     
    My DS14 has had "issues" since age 4. 10 years is a long time. I go through periods of doing nothing and then periods of doing alot. He has to be ripe for certain situations and the things we do. Sometimes just a tincture of time is the right thing that progresses us to the next level.
  7. Like
    911RN got a reaction from Hrosenkrantz in Son can't walk today! Lymes/Pans   
    Any child that can normally walk that suddenly cannot walk substitutes a neurologial emergency in my book-- lymes or not. I would take him to ER if my child could not walk. I would not wait a week to see a MD??!! He and you both have right to be scared. I would be scared also.
  8. Like
    911RN got a reaction from MomWithOCDSon in Update: I Need to Brag   
    Nancy,
     
    So happy for you and your son. My son (despite his special needs status) is always well liked, praised and appreciated by his teachers. Due to his own social issues- he does not have any peer friend group but does well with adults and teachers whom seem to enjoy his quirky, dry sense of humor and mannerisms. He does not have behavioral issues which tends to be common for many special needs kids. Thus, he is a breath of fresh air for them. Truly special needs for accomofations to best suit his learning needs/style. It is always a thrill when teachers send me emails (unsolicited) about how much they enjoy him and that he puts a smile on their faces daily.
     
    Brag away, you and he deserve it!! Has been a long road for you and him! You'll find something else besides PANS to fill your days once he is in college:)
     
    Congrats!
  9. Like
    911RN got a reaction from SSS in Update: I Need to Brag   
    Nancy,
     
    So happy for you and your son. My son (despite his special needs status) is always well liked, praised and appreciated by his teachers. Due to his own social issues- he does not have any peer friend group but does well with adults and teachers whom seem to enjoy his quirky, dry sense of humor and mannerisms. He does not have behavioral issues which tends to be common for many special needs kids. Thus, he is a breath of fresh air for them. Truly special needs for accomofations to best suit his learning needs/style. It is always a thrill when teachers send me emails (unsolicited) about how much they enjoy him and that he puts a smile on their faces daily.
     
    Brag away, you and he deserve it!! Has been a long road for you and him! You'll find something else besides PANS to fill your days once he is in college:)
     
    Congrats!
  10. Like
    911RN got a reaction from Rachel in Plasmapheresis   
  11. Like
    911RN got a reaction from MomWithOCDSon in Cannaboid OIl-RESULTS!   
    Love it. I have always said I am from "The Church of What Works."
  12. Like
    911RN got a reaction from T_Anna in Cannaboid OIl-RESULTS!   
    Love it. I have always said I am from "The Church of What Works."
  13. Like
    911RN got a reaction from MomWithOCDSon in Back from Children's Memorial...test results.   
    So, after all this....was there any suggestion on how to HELP your child?? If this is the 3rd Psych with no diagnosis...do they have any suggestions or meds to suggest that will improve all these symptoms. Diet is great but doesn't sound like it should be the only answer or end all, be all for symptoms. Has he been on any psych meds? This is thoroughly frustrating for you...I know!!
     
    I have been there, done that for 9 years. My kid NEVER fit in any definable box. Every doc that has ever seen him has said the same thing weather it was Peds, Neuro, Psych or NeuroPsych. Every teacher that has ever had him has told me they have never met another child like him. I got to where I told docs--I don't want you to diagnose him-- I already have.He has Purple Polka Dotted Flying Elephant Disease. (PPDFED). It's one of a kind, nobody has ever seen it and nobody knows how to treat it.
     
    I told them this diagnosis was just as right as anything they could give me or as right as all the conflicting diagnosis I had rec'd over the years from multiple specialists. I want you to suggest how we can "TREAT" him to make some of this better. I got to where treating just a symptom was OK- let's not try to call it a disease or condition to treat. Lets work on depression or let's look at the OCD behavior or the anxiety and just try to tackle one symptoms at a time. Docs got my point and started working with me and not against me... for a better boy. Not perfect, but better and manageable.
     
    Not saying you have to do this but this is the tactic I arrived at and it worked better for us. Lamictal helped my son with anxiety. He, too, once ripped all the skin from his toes and soles. Chewed all the skin off his hands. Prozac worked then switched to Zoloft (helped with depression and OCD behavior). We have never needed more prescription medication than that.
     
    Not sure if this is helpful...feel your pain.
  14. Like
    911RN got a reaction from Hopeny in Back from Children's Memorial...test results.   
    So, after all this....was there any suggestion on how to HELP your child?? If this is the 3rd Psych with no diagnosis...do they have any suggestions or meds to suggest that will improve all these symptoms. Diet is great but doesn't sound like it should be the only answer or end all, be all for symptoms. Has he been on any psych meds? This is thoroughly frustrating for you...I know!!
     
    I have been there, done that for 9 years. My kid NEVER fit in any definable box. Every doc that has ever seen him has said the same thing weather it was Peds, Neuro, Psych or NeuroPsych. Every teacher that has ever had him has told me they have never met another child like him. I got to where I told docs--I don't want you to diagnose him-- I already have.He has Purple Polka Dotted Flying Elephant Disease. (PPDFED). It's one of a kind, nobody has ever seen it and nobody knows how to treat it.
     
    I told them this diagnosis was just as right as anything they could give me or as right as all the conflicting diagnosis I had rec'd over the years from multiple specialists. I want you to suggest how we can "TREAT" him to make some of this better. I got to where treating just a symptom was OK- let's not try to call it a disease or condition to treat. Lets work on depression or let's look at the OCD behavior or the anxiety and just try to tackle one symptoms at a time. Docs got my point and started working with me and not against me... for a better boy. Not perfect, but better and manageable.
     
    Not saying you have to do this but this is the tactic I arrived at and it worked better for us. Lamictal helped my son with anxiety. He, too, once ripped all the skin from his toes and soles. Chewed all the skin off his hands. Prozac worked then switched to Zoloft (helped with depression and OCD behavior). We have never needed more prescription medication than that.
     
    Not sure if this is helpful...feel your pain.
  15. Like
    911RN got a reaction from MomWithOCDSon in My dad left.   
    I am sorry you are going through this...here is something you may find helpful: These are "The Four Agreements" by Don Miquel Ruiz:
     
    The Four Agreements are:
    1. Be Impeccable with your Word: Speak with integrity. Say only what you mean. Avoid using the Word to speak against yourself or to gossip about others. Use the power of your Word in the direction of truth and love.
    2. Don’t Take Anything Personally
    Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.
    3. Don’t Make Assumptions
    Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.
    4. Always Do Your Best
    Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse, and regret.
     
    In other words....
    1. Do what it says
    2. Your father leaving has nothing to do with you
    3. Reach out to your brother--perhaps, he does not really know how much you need his support--even from long distance in Alaska.
    4. Do what is says...under sick or healthy circumstances.
     
     
    Perhaps, you can take your love of dogs and volunteer at animal shelter or veterinary office?? Transform this into a way to get out of the house...with potential job opportunity in the future.
     
    Volunteer for Special Olympics event in your area...somehow get involved with Autistic children. Parents of this group often have caregiver stress and fatigue. Are over burdened with responsibilities. Often, have NO extra support, baby sitters etc. Perhaps, you could find employment to sit for autistic children and this will allow you some outlet for music therapy with this special group of children. Volunteer work can often lead to gainful employment if you have a special interest in a particular area. Both of these interests are under served by the general population. I.E animal shelters and services for special needs children.
     
     
    Hugs to you!
  16. Like
    911RN reacted to MomWithOCDSon in Reading Speed   
    DeeDee -- Boy, did you hit the nail on the head: how to "enforce" his "moving on." You can talk 'til you're blue in the face. He will tell you that, yes, he knows it's not a good use of his time to reread or to ponder every word along the way. He will tell you, yes, this time, he's going to move through more efficiently. And he means it . . . it's not lip-service, and it's not him being a pacifist, either. It's just that the intention and the rational thought can get trampled by the perfectionism in the moment. He's conquered it in so many corners, so this is a stubborn one. It doesn't help, either, that your standard teacher is constantly issuing admonitions to the class to "read carefully," "reread Section XYZ to prepare for the quiz," etc. We constantly have the talk about The Lowest Common Denominator in school, and how so much of the instruction and warning language is intended for that sector of the population, how it really doesn't apply to DS, but because it suits the Perfectionism's world view (I'm going to start capitalizing that word, since it's taken on a life of it's own in this particular quadrant of our world), he has trouble truly setting it aside.
     
    Interestingly, LM's metronome idea does appear to have made a dent in that, if only temporarily or because of its novelty. We'll have to see if the technique continues to be of positive impact. Once we turned the metronome on last night, he did not stop and go back, did not reread, did not pause, take his eyes off the page and find something else to distract him. He just kept reading. Progress!
     
    DCMom -- My friends at work call me "the anti-mom," more or less for the same reasons and examples for which you've earned your "un-parent" title! My DS comes home, complaining that his classmates swear and it makes him uncomfortable, so for the next several weeks, I swore in front of him at every possible opportunity (I usually keep a lid on it at home, but clearly that was working against us). So now we've come to the point where he doesn't criticize others for swearing, and he'll even use a word or two in its proper context, particularly if he's quoting someone else. He was also an absolute prude about everything else (I don't know where he gets this stuff), so I pretty much dropped any pretense at age-appropriate television, YouTube videos, reading material (bring on "The Onion"!) in front of him; now he'll watch the occasional episode of "South Park" and pretty much every episode of "Top Gear" without bolting from the room when someone uses risqué language or behavior. He decided alcohol was pure, unadulterated evil and threatened to call the police rather than ride home in the car with DH and me after a dinner out during which each of us had a single martini. So DH and I decided we would have at least one drink at pretty much every family dinner and insist that, in addition, DS must toast us with a clink of his water glass to our wine/beer glasses. After about 2 months of not giving in to his religiosity/fear over adults' use of alcohol, he dropped it and hasn't raised the issue since.
     
    The challenge we're having with this reading issue is, of course, that we can't actively push against the issue without his participation. His bedtime is sacrosanct, so we're not giving him extra time to complete his reading when he struggles/drags/avoids/rereads. He'll get the grade he gets in light of how much he has or hasn't read and comprehended, and he'll have to deal with how that feels when it happens. But he will also come home full of regret if/when things don't go well: multiply your DD's confession/pledge by a factor of 10, I'm predicting. It all proves to be a very big and real paradox because the Perfectionism is stumped by the process and the consequences: he must read slowly and carefully to be Perfect, and yet he must also complete the reading in order to do well on the test and be Perfect. DS currently views the two pieces of that as mutually exclusive, so instead he wants to blame the teacher for giving them too much material to cover (possibly objectively true), the book for being poorly written (also possibly objectively true), etc. I welcome the opportunities for DS to learn that Perfect isn't a worthy goal (actually, he already knows that outside the heat of the moment and accepted his first B ever last year with good grace). I just want him to develop some solid, reliable, accessible skills and tools for dealing with this reading material issue because I know it is only going to get tougher in a college curriculum (at least in terms of pace).
  17. Like
    911RN got a reaction from junkyardjean in Cyanosis now....   
    Ditto what Hopeny said. Pediatric cardiologist is warranted and ASAP. Cyanosis in a child is not normal, especially transient cyanosis. Things can be wrong that listening to a heart with a stethoscope will not pick up. Listening to heart sounds is the most basic, non invasive modality- tells you only if heart beat is regular/irregular and if heart sounds are normal. If no murmur then one "assumes" valves are OK. THAT's it!! It is not a diagnostic tool to say that heart is fine with no worries.
     
    She needs full scale cardiology work up with EKG, Echo and maybe even stress test?? Keep us posted!
  18. Like
    911RN reacted to LNN in Understanding OCD   
    I came across a great blog and book describing what it's like to suffer with OCD. As painful as it is to read, it may help parents and other family members understand what our Pans kids are feelings but can't explain...
     
    The Danger of Doubt: The Ruthless and Frequently Misunderstood Logic of OCD 4 Comments | Posted June 27, 2013 Guest blog post by Fletcher Wortmann –
    OCD is called the “doubting disorder,” at least among people inclined to give cutesy alliterative nicknames to mental illness. OCD is the pathological intolerance of risk, however minute, and the surrender to protective ritual, however unbearable. I know this because I suffered from severe OCD symptoms for twenty years without my family, or teachers, or even therapists correctly identifying my symptoms. Despite frequent portrayals of OCD in books, television and film, I’ve found many people’s understanding of the disorder is tragically limited.
     
    Now, “intolerance of risk” may not sound atypical or extreme. After all, each of us has moments when, against probability and common sense, we attempt to eradicate ordinary uncertainty using our minds.
     
    Think about it: You get halfway around the block and realize that you might have forgotten to lock the front door, so you drive back around to check it. It’s near the end of the seventh inning and things aren’t looking good, so you pull out your favorite baseball cap because sometimes it seems to help. You call your child’s phone twice to make sure that she got to the party okay. You cross your fingers, you knock on wood, you wish on a coin or a star or a stray eyelash.
     
    Everyone does this. It’s not a problem for most people.
     
    But it’s a big problem for people with OCD.
     
    Obsession comes from a simple glitch in cognition. Ordinarily, you have a built-in time clock in your mind. After turning over a certain problem for a while, a committee of highly efficient business-people in your brain decides, “okay, that’s probably the best solution we can come up with for now – enough,” and they table the issue and move on. That’s healthy and normal.
     
    When you obsess, however, your mind refuses to admit defeat, to accept that you just can’t come up with a better answer. After all, what’s the harm in thinking about it just a little more? And more again? When you suffer from OCD, a sliver of doubt always persists that you haven’t examined the issue from every angle; and so you wrestle with your problem a little longer, trying to find a new solution that reduces your uncertainty and leaves you satisfied.
     
    Obsessive-compulsives are taken in, every time, by the promise of one more look at the problem, even if we’ve already worked on it for hours, for days, for months. OCD demands safety and certainty, and the fact that nothing can ever be totally certain is regrettable but irrelevant to its purposes.
     
    Sometimes this leads to the physical compulsions so many identify with the disorder. If we have scrupulosity and we’re afraid of God, we may run a rosary until the chain snaps. If we’re obsessed with catching a disease, we may wash our hands over and over again. Eventually the behavior of the sufferer is entirely divorced from reality. Hand-washing is no longer a basic hygienic practice but a magic charm, a banishment cast against the ambiguous, malevolent threat of all “germs.”
     
    But these physical compulsions, which so many assume are the greatest burden of OCD, may be only modest indicators of a terrible internal struggle.
     
    And, some of the most distressing forms of OCD have no visible signs, no tangible compulsions. I have a variant of the disorder referred to as “Pure O,” or purely obsessional OCD, characterized by runaway intrusive thoughts. With Pure O, the mind is held captive by its worst nightmares: fears that the world is about to end, for instance, or that the sufferer is a murderer or a sexual deviant who could succumb to uncontrollable violent urges at any moment. Whatever the single most inappropriate or offensive thing you can imagine, at any particular moment - Pure O knows what it is, and it exploits it.
     
    With Pure O, these problems can not be put to rest through physical rituals like hand-washing or counting. Instead, the sufferer is left obsessing, silently and almost continuously, incapable of finding conclusive proof that these hideous scenarios will not occur. We can not tell anyone, for fear of being labeled paranoid or psychotic, and because our symptoms are internal, people don’t notice, and we’re rarely offered help. As an OCD sufferer, I did any number of asinine, irrational things not because they would protect me, but because I thought they might, and I’d be darned if the one night I failed to properly pray the lord my soul to keep was the night I died before I woke.
     
    If a sadistic billionaire decided to gather every Pure O sufferer into an Arkham City of twitching misery, then (according to Lee Baer’s The Imp of the Mind) it would be the fourth-largest metropolis in the United States. Yet the disorder continues to be under-diagnosed. It is the invisibility of the disease that gives it power: because so few can recognize our symptoms and because so many do not understand them, many of us struggle for decades before successful diagnosis.
     
    OCD sufferers aren’t straight-jacketed neurotics or treacherous psychopaths or lovable buffoon detectives. We are people who suffer, in a way that is familiar to almost everyone, but to a degree that no one should have to endure. I lost the first twenty years of my life to OCD but I hope that, by continuing to spread awareness of the nature of the disorder, we can bring it out of the shadows and work to alleviate the suffering of so many.
     
    Copyright, Fletcher Wortmann, 2013. Author of Triggered: A Memoir of Obsessive-Compulsive Disorder (St. Martin’s Press), named one of Booklist’s “Top 10 Science & Health Books of 2012”.
    http://www.fletcherwortmann.com
    http://www.psychologytoday.com/blog/triggered
  19. Like
    911RN got a reaction from keeptrying in intuniv - helped or not?   
    My DS was on it about a year several years ago. Seemed to work the first 6-8 months then effects wore off. Gained weight and just made him too tired. Falling asleep in class daily at 2pm for 1/2 hour to a hour. Had needless sleep study thinking he had narcolepsy! He did not...stopped Intuniv and daytime falling asleep went away. Intuniv is only approved by FDA for use for 12 weeks (I think)...check the manufacturer website. It has not been studied in children beyond that time which is just foolish. If indicated mainly for ADHD (which it is)...what child is only going to need ADHD "help" for 12 weeks????!!!! It did seem to help with tics and attention but the other side effects (for us) were not worth the gains. Have followed lots of posts and blogs with parents whose children were on Intuniv (long acting form Tenex) and results were all similar. Most abandoned it over time. Seems like folks have stayed with Tenex (short acting form) longer than Intuniv from my reading experiences. We have never tried Tenex.
     
    Our Neuro is recommending Marinol for my DS tics (he s nearly 13). I have not agreed yet...thinking about trial this summer when school is out. I am a bit concerned with appetitie stimulating effects--further weight gain and sleepiness. My DS is chunky and does not need to gain anymore weight. Not obese (yet) but could head in that direction with any nudge. Neuro claims it has been a life changer for some of his chronic tic children. States they do not get "high" but the tics go away. My DS does not take anything for tics either...his are mainly vocal. Few motor tics. His tics don't seem to bother him as much as it they do others so I try to keep that in perspective. I am treating the child or others?? However, it does have an impact on his social abilities. He takes low dose SSRI (Zoloft) for minor anxiety/depression/OCD which has made a positive impact. Lamictal for underlying abnormal EEG which we are slowly weaning. That's it...a few vitamins.
     
    Our children are similar in ages. Maybe Marinol is option for your DD also??
     
    Good luck with whatever you decide...sorry, not to be more positive. That was our experience with Intuniv.
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