you've got to be kidding me! *frustrated*

Discussion in 'General Parenting' started by tJoy&sRose, Jan 14, 2010.

  1. tJoy&sRose

    tJoy&sRose New Member

    So our difficult child got out of inpatient, was put on stratterra because we've tried stimulant medications and we don't like the side effects nevermind they increase his aggression. Our difficult child is covered by medicaid, well after discharge upon taking the prescription to the pharmacy we find out that in our state stratterra is on the medicaid non prefferred list so they have to have a case made for why it should be accepted by the doctor. Over the last three days we have paid $12 a pill waiting for the authorization for medicaid. Tonight we go to the pharm to get a pill for tomorrow or hoping to find its been authorized and we can get the whole script only to be told by the pharmacy that the doctor instead of making a case for stratterra decided to change the script to Concerta and we will have to go pick up the new prescription to have it filled. WHAT?! 1. our difficult child has taken concerta in the past it didn't work 2. the doctor changed the prescription WITHOUT FIRST CONTACTING us as parents (wtf?) 3. It is now 8pm and we have no access to any medication for his ADHD and can't as reasonable parents even dream of sending him to school in the morning without medication. 4. I call the hospital where he was a patient desperate and angry only to be told I'll have to call the doctors clinic in the morning 5. did i mention the clinic is in another town 15 miles away and after spending $12 per pill for the past few days we have no money to put gas in our empty tank? Ugh.
  2. Andy

    Andy Active Member

    I would also be *frustrated* (a very kind way of putting it).

    My question to the doctor's office would be, "And why could he not have his nurse pick up the phone and call me? Did he even LOOK at my child's file or just automatically switch?"

    Let us know what happens. Ugh big time (a very kind way of putting it).
  3. gcvmom

    gcvmom Here we go again!

    Call in your difficult child sick tomorrow and keep him home. Tell him it's a rest day. It's not worth the stress of sending him to school unmedicated, and technically, he IS sick, just not with a physical disease.

    Then tomorrow, you can get on the phone and start hounding whomever you need to at the clinic to get this all straightened out. I highly recommend you keep it as polite, but FIRM as possible. It's a misunderstanding that just needs some extra communication to make things right.

    So for tonight, take a deep breath, hug your difficult child, and get some rest so you can put on your best game face for tomorrow. I have faith you'll be able to work it all out by the end of the day.

    Good luck!
  4. tJoy&sRose

    tJoy&sRose New Member

    This is the SO of the author of this post. I am the biological mother of the difficult child. I am at such a loss. I am in this give up mode where I just want to take him off of everything and figure it out myself. I know this isn't best for me. It hurts my heart to think of how other kids may look at him. I went to pick him up at school today and there was a lady outside who advised me that my difficult child's teacher wanted to talk to me. I went inside and she told me that he was walking into walls and walking back then walking back into the walls, intentionally. Then he was rolling around on the floor...just rollling. She asked him to stop and then he went into a full blown out tantrum. He was then removed from the classroom. The teacher went on to inform me that she never had problems with him before his hospitalization. I am so confused and just tired...I don't know how hard to explain it. I am really sad and confused and don't want my son to hurt anymore...I am tired of crying and my emotions all over the map. Thanks for letting me vent!
  5. gcvmom

    gcvmom Here we go again!

    This is undoubtedly a very trying time for you. It would be for anyone dealing with a child with a mental illness, especially during a time of obvious instability. It seems clear to me that you need to keep your son home tomorrow and possibly even part of next week if you cannot get him reasonably stabilized over the weekend.

    I would hesitate pulling all the medications at once without consulting the psychiatrist first. Some of these medications have to be weaned off over a few days. Your signature does not indicate exactly WHAT medications he's on right now, so it's hard to say what the problem might be.

    I don't recall exactly what precipitated the psychiatric hospital admit either... I'll have to look at your other posts.

    Don't despair -- things WILL get better, but it's going to take time and a LOT of patience on everyone's part, including the school. (Does your son have an IEP or 504 plan in place?)

    Try to focus on getting through just one day at a time for right now. That's really the best you can hope to do until you get his medications straightened out and he is more stable.

    Hang in there. We're all here for you and understand what you're going through!
  6. gcvmom

    gcvmom Here we go again!

    Okay, I reread your first post regarding the medications. in my humble opinion, I would forget about trying to address any attentional or focus/ADHD related issues (ie the strattera) for the time being. A lot of times bipolar can look like severe ADHD, and once you address the bipolar with appropriate medications, the ADHD aspects improve significantly. That doesn't mean there isn't still ADHD going on, just that it can get better once the bipolar is treated.

    The more important issues at hand are his aggression and the rages. It's possible the respiridone, which can help with the aggression, is not at a therapeutic level.

    Hopefully tomorrow, when you get someone on the phone who will LOOK at your son's chart and listen to what you're telling them about his behaviors now, they will be able to advise you on what to do about the current medications.

    Sending out hugs of encouragement to your family tonight. I know how hard it is to go through this.
  7. tJoy&sRose

    tJoy&sRose New Member

    Thank you so much for the words of encouragement and hugs. I truly believe this is a bipolar issue not as much adhd but I am not a doctor. I will let everyone know tmr how it goes.
  8. Marguerite

    Marguerite Active Member

    Whether or not this is a bipolar issue, this IS an issue of medications being mucked around.

    Every time medications get changed, forgotten, modified etc, it throws the kid off. As a rule, kids do try to behave. But after a time and especially after a lot of criticism and hounding, the kids can give up trying.

    But even when they don't give up trying, every change is something new the kid has to try to re-adapt to. Your child can be stable on a particular medication, but if you take them off it for the weekend, say, or over the holidays, the child has to adapt each time there is a change.

    Now, let's look at your child - he's been hospitalised. That is a change in location and routine. They changed his medications. then he was discharged on the changed medications. And now those medications are unavailable. A different medication has been prescribed (mistake? Or change without talking to you? Either could be the case).

    So to send him to school with all these changes is likely to throw his equilibrium off. If you can, beg some work from the teacher and keep him home, but doing schoolwork (if you can). Let him know that he's home not because he's been difficult, but because with all the changes, you feel he needs a chance to work in a quieter, more familiar place for a few days until the medication issue is resolved. At the very least, it means if he still has problems (pacing the floor, walking into walls deliberately or otherwise) he will not be anywhere that people are likely to get annoyed about it or consider him a freak or weirdo. He will be home with someone who has the best chance of loving him and understanding him. You will also be there making notes about what you observe.

    Now, as to Strattera - how long has he been on it? What have you observed? Any better? Or worse?

    If it works, then that is great. But I keep hearing horror stories about Strattera, then we had our own horror story. difficult child 3 had only been on it a few days but his behaviour was getting increasingly irrational and violent. It was really scary. With hindsight, we should have taken him to the ER. We took him off all medications, kept him home and quiet for a few days, threw schoolwork at him and finally as he began to figuratively climb down from the walls and ceiling, he became more rational and we could talk to him. We were able to get him to understand that a lot of the time he thought WE were being unreasonable (and he couldn't pinpoint what we were allegedly being unreasonable about, he could only connect to his emotions of extreme anger and frustration, with no identifiable issue to be angry or frustrated about) it was actually the medications making him unstable.

    Someone (I think one of his tdocs or psychiatrist) mentioned how he'd gone on Strattera - difficult child 3 was adamant that it is really awful, ghastly stuff and made him feel really bad, very angry and he couldn't understand why.

    I'm sure if difficult child 3 had been assessed by a psychiatrist while affected by Strattera, we could have got a diagnosis of schizophrenia or more. He was really scary and just not with it. We started to get him back over the next few days (off the medications) and I guess it would have been about 12 hours later that we could begin to talk to him (and he began to make sense again) and 36 hours later that we were really certain that we had our boy back again and he wasn't psychotic.

    It could still be ADHD but stims not working - it can happen. But if your instincts are saying, "Let's keep looking further," then trust your instincts. Even if eventually it does prove to be ADHD - YOU need to be sure, whichever way, and to make sure your concerns are thoroughly checked out.

    Your boy is 7 years old. That's very young for a CD diagnosis, for a lot of things suggested. The ODD - I reckon if I were a kid with possible ADHD, getting medications changed here & there plus copping it form teachers and kids at school, I'd be very oppositional too. Doesn't mean it's true ODD - it's very easy for things that LOOK like ODD to develop in a kid's behaviour, purely out of reaction to all the crud that goes on in their lives when something is wrong and nobody seems able to fix it for him.

    I'm glad both of you are working this site, it has really helped us (me and my husband) to follow each other's posts. Good communication is one of your best supports.

    As for the medication being change - I agree you should have been contacted. So it could be a mistake. Or it could be that he got so used to acting high-handedly while the kid was in hospital and under his control, that the doctor just didn't think to talk to you but just went ahead and did it.

    Let us know how you get on.

  9. Autismkids

    Autismkids Member

    Risperadone can cause aggressiveness as well.

    My difficult child was on risperdal at 2 and it seemed to work great. He was weaned off. A few years later we tried again, and we had to keep upping the dose and finally it all backfired and he was beyond psycho!

    I think most medications can cause an increase in the behavior they're meant to fix. My few examples; pulmicort and xopenex for asthma can cause coughing, and my difficult child's main symptom is coughing. Risperdal to calm him down made him nuts. Benadryl (for allergies) typically makes you sleepy, but can make you wired.
  10. tJoy&sRose

    tJoy&sRose New Member

    I do agree that stratterra has some horror stories out there, but I would like to give it a fair shot with difficult child before making a determination one way or another but don't even know if we'll be allowed to now with this insurance issue. Stratterra came out on the market when I was an adolescent just beginning my journey of dxs and medication combos... I tried it with disasterous results to say the least lol. Our difficult child had only been on stratterra for 5 days so it was early to know either way, especially considering all the other changes.

    As of this morning I've called the clinic i'm supposed to be calling only to be shuffled to a couple different voice mails and assured that I'll be called back. UGH So I'm waiting.

    I didn't wake up with my best game face on to handle today, however i'm regaining it slowly but surely now. difficult child has a knack for knowing the worst (or the best?) time to really push buttons and limits and read me as off from the get go this morning LOL but things are going better now and I"m trying to help us both enjoy this "day off".
  11. tJoy&sRose

    tJoy&sRose New Member

    YES!! finally got my call back. The doctor obviously didn't take the time to read over the chart before he made the switch, however after talking to the nurse and giving difficult children entire medication history AGAIN she is going to have the doctor make a case to medicaid for why he should be approved for the Stratterra. And they have a box of samples for us to get us by until its approved! I no longer feel like bawling out of frustration at least.
  12. susiestar

    susiestar Roll With It

    Strattera is an antidepressant. It is more effective at treating ADHD than depression, but it still is an antidepressant. When it works it is wonderful. Both my difficult child and my gfgbro have taken it for years with great success. But it is generally not good for a bipolar child.

    I have no idea what is going on in the minds of psychiatrists anymore. There is a medication protocol for treating people iwth bipolar. If there are other comorbid disorders the bipolar is to be stabilized first because it can look like a lot of other things. bipolar is also made worse by many medications, including stimulants, antidepressants, and decongestants.

    Yes, strattera can make his bipolar WORSE. The proper protocol is to add a first line mood stabilizer. If this is at a therapeutic level and the patient is still not stable, a second mood stabilizer can be added. If aggression is still a problem then an atypical antipsychotic like risperdal would then be added. The atyp. antipsychotic can be added before or after the second mood stabilizer.

    If, and only if, symptoms of ADHD or depression are still present after these medications are at a therapeutic level (some need to be at this level for 6 weeks to know if they will work) THEN you can try a low dose of either a stimulant or antidepressant medication. If the patient becomes unstable when this is added then it is likely that the patient will not be able to tolerate the type of medication.

    psychiatrists seem to not want to follow this, though here on the board the best long term outcome comes from following this protocol. It is in The Bipolar Child, the bible for parents with a child with bipolar. I highly recommend reading this book. Most libraries have it, I think. You can also try to find it used on or

    The protocol is from the Amer. Academy. of Child and Adolescent. psychiatrists, so it IS the industry standard, even though many psychiatrists seem to have never heard of it.

    medication changes must be made 1 at a time, though it seems frustrating. If you increase a medication and decrease another, how do you know which medication caused a change? Mes should always start low and increase slowly. remember to start low and go slow. (That phrase sticks in my mind and reminds me to ask the doctor which change to do first and when to start the second change.)

    I hope this gives you some info to ask the doctor about. Ask for a mood stabilizer. Insist if you have to. Point out that it is proven to be an effective treatment protocol.

  13. tJoy&sRose

    tJoy&sRose New Member

    He is on a mood stabalizer already, well atyp antipsychotic as a mood stabalizer. Also he is not yet diagnosed bipolar, it is something we are watching closely for given his genetic history and tendency towards some bipolarity. At this point if we want our difficult child to continue to attend in a normal classroom the ADHD sx are the ones we must address right now. Thank you for the information, I am quite familiar actually given my own experience as an adolescent with bipolar and ADHD as well as my extensive research into the topics. I'm glad I have the knowledge I do as it certainly helps me better advocate for our difficult child in my opinion. Everything is a bit up in the air right now since we recently moved and therefore are changing some things in his treatment regimen.
  14. tJoy&sRose

    tJoy&sRose New Member

    oh I almost regards to the stratterra being bad for bipolar, it is true it has a risk of exacerbating bipolar symptoms it doesn't always, and in my humble opinion is better than using a stimulant medication where bipolar is a likely possiblity and since his ADHD runs on a fairly severe spectrum I'm willing to give the stratterra a shot if its success could ultimately mean keeping difficult child in a normal classroom.
  15. Star*

    Star* call 911

    Hi -

    If your son is having this many problems in the classroom why hasn't anyone suggested a meeting for an IEP? If he had this it would/could get him a shadow paid for by the school district. This could prevent that business of rolling around on the floor and the walking into the walls. That's for attention Mom NOT son being crazy - he's TRYING whatever he can do to get a laugh from the other kids, and of course getting attention from the teacher....he's getting it (not positive attention) but attention nontheless. (I have his twin at my house). ahem.

    The Shadow helps by redirecting him to more positive activities when his ADHD reaches peaks and he's bored....he can take him out of the class when he recognizes that he's at "that" stage....and give him a break. Tap him on the shoulder. Give him one on one. Stuff like that. And the district pays for it. Not you, not S/O not ya'lls insurance. ;) been there done that -

    It can also be written into his IEP that for a portion of his classroom time he can have certain things to help him concentrate like a set of headphones, or IPOD....(no kidding) or that he can do a puzzle when he's completed an assignment or is on task - gets a reward of XXX?? (you choose)

    LOTS of things can be done to assist him.

    My son has been on 65 He's now 19. He's been in and out of Residential Treatment Center (RTC)'s, psychiatric hospitals, had dozens of counselors, been in foster care - the list (sadly) goes on. I'm just a Mom, we never found a medication that works. We never got a firm diagnosis of BiPolar (BP) either even though it is rampant on bio fathers side. Then again - biofather is a sociopath and psychopath - but we're hoping therapy changed those brain patterns. :angel3:

    Hope he's better today - glad you found your rhinoskin and your Warrior Mom dialing finger. VERY handy things to have if you have a kid like ours.

  16. tJoy&sRose

    tJoy&sRose New Member

    Hey Star - thanks! your words made me smile :D He does have an IEP its just that we just moved so we've switched schools and it kinda took us by suprise because school had been the one thing that was still going really well for him this year -- obviously now I think we're at a point where we need to re evaluate the IEP, i know my SO has a call in to the school psychologist today and we are waiting to hear back.

    This afternoon has started beautifully for me and difficult child though, we went to mcdonalds for lunch (playtime was going to be my little break :tongue:) and he found another boy there to play with (my gut told me this boy is quite the difficult child too) and they had a lot of fun and we stayed for well over an hour and left in a good mood! yay!
  17. Star*

    Star* call 911

    I am so glad he had a good day! It's a cushion for parents' hearts when they do. I think it pads us for when they have those bad days or when the rest of the world looks at our kids and says "HEY you aren't like US or you're different."

    At this point in the game? I once again have to go back to the USes and Thems thing. See people with physical disabilities in some ways get a pass that our kids don't. Think about your own attitude say for instance maybe at a Walmart. Okay - you see a child in a wheelchair, strapped in, flailing and being loud. Your first impression? Possibly - Poor thing or He's handicapped, or maybe even He must be retarded, so you may be a little more tolerant of the noise, and his family and even of him. Now same Walmart and you are rounding the corner and you see a Mom standing there and you see a child with no 'apparent' physical deformities, but he's laying on the floor, flailing, kicking and screaming bloody murder and yelling at his Mother over and over. Your first impression? Possibly - Brat. Poor Parenting, I'd jerk a knot in his hiney, If that were my kid, I'd spank his butt. Not "emotionally handicapped, ODD, Conduct Disorder, Schizophrenia, Borderline Personality Disorder, Bi-Polar, Spectrum Disorder." Why? I guess for a number of put one of US (CD Moms) in the same situation and as the same and maybe we would see something different because WE have been exposed to it day in day out, and our best friends here tell us about it. So while it's still not "normal" or "acceptable" (by most 'standards') it's familiar to US.

    When you go against the school district and teachers, and principals and counselors of most schools? The chances that they've dealt with a child like yours in the last 10-20 years are probably pretty slim. Maybe they've had some exposure to it, but more than likely at the first sign of any trouble with little Jr.? They've shipped him out and written him off as "a bad kid, or a troubled child with a troubled home,or they "assume" (and I love this one) that because he's the child of a broken home or a home with same sex parents, or a step Dad, or a single Mother, or a Mother who was abused, or a military child who has moved or a number of things that THAT is the reason Jr. is like he is CASE closed, they've solve it, and problem is now the property of the child and parents -whomever and in their eyes whatever goes on in their own little non-traditional, low class house.) PROMISE.

    Well - the thing that you have to educate YOURself on to the point of ad-nauseum isn't unexplaining stereotypical mindsets of your family life and trust me it WILL be in their minds as THE problem - what you have to educate yourself on is HOW to educate THEM on NOT pushing your child to the rear of the class. Explaining to them WHAT IT IS LIKE to be and spend ONE DAY in HIS MIND. HOW it is like to hear, 1000 things at one time and TRY to zone in one a teacher when you can hear the clock ticking, the kid next to you tapping his pencil, the girl behind you fidgeting with her paper, and the man outside mowing the grass, the fan slapping the poster against the wall, the boy four rows over tapping his shoe. It's incredible what they hear---and thats just the tip of it. Their minds RACE like cars.....all the time. But most people even educators have NO CLUE what it's like - what hyper activity TRULY is. IT"S AWFUL - it's A REAL disorder....but because it doesn't come with crutches or a strap or a wheel chair - they're less tolerant of it and your child-----

    So it's up to say - " you have any idea what it's like to be him? HERE is what he needs. Let's TRY this for XX days." not just ship him out of here or dismiss him. BE THE SQUEEKY wheel. BE THE THORN. My sons school HATED to see me come to any meeting because I STOOD UP and I'd EXPLAIN MYSELF....and HIS nauseum. But by the time I was done? I GOT for my son what he needed ---at least while he was there. And by the way - while he WAS in public school? With help that I made sure he had? Straight A's. SO go figure.

    THAT is Warrior Mom. You live it.....You are schools, in your neighborhood....and you don't have to be ugly about it...Educating people should be delightful and fulfilling. I know for a fact that the children that came to school AFTER Dude - are better off than he ever was because of what WE did (me & Dude) THAT counts.

    Hope this helps a little. I'm really glad your son had a good day!

    Hugs -
  18. Marguerite

    Marguerite Active Member

    Aha! So THAT explains things for us a bit more - whenever difficult child 3 has been tried on various antidepressants, it affected him weirdly. The first one did seem to help to begin with, but it also stopped him sleeping. After several days of difficult child 3 being wired and getting worse, we had to stop the medications. Besides, the school was getting frantic also.

    I also get weird reactions to antidepressants. Either they sedate me far more than one would expect (quarter of a tablet and each day I was still increasingly zonked - my doctor had said I wouldn't get any therapeutic benefit for the pain, until I got up to maybe for or five tablets a day) or I would be spaced out, seeing things crawling over the ceiling or thoughts racing so much I couldn't work out where I was in the middle of it all.

    If your son has been on Strattera for five days and you've not noticed major, problematic changes, chances are you're one of the lucky ones who haven't got the problems we had. That is great news!

    Even better news - the box of samples for you. At $12 a pill, that is great news. And after the mucking around you've been put trough, it's the least they could do.

    I just wish I could package up and send you the large supply of pills we were given by the doctor - difficult child 3 can't use them and the doctor doesn't want them back. We've got half a (small) cupboard full.

    I hear you on the "invisible disability" thing. I just had to develop a hide like a turtle to withstand all the dirty looks etc. Often I would cheerily announce to the world, "Ain't it fun when your child has autism?"

    If I see another parent struggling with a child, even if I suspect that child is "only" throwing a tantrum, I will sometimes pat them on the shoulder and say, "Hang in there. You will value the experience when he's a teenager," or something similarly uplifting.

    The biggest problem parents that I see - they fall into two categories.

    1) The ones who loudly threaten the child/publicly spank the child, inappropriately in my view. For example, a little kid who is distracted by all the unusual sights/sounds and stops in the walkway to watch, getting a bit in the way. parent hauls the kid off and yells abuse at them or spanks them. I hear from the parent things like, "You're a lazy, good-for-nothing brat, you're always in the way, stop being so selfish!" Often spoken to a kid who is barely 4 years old...

    2) The self-conscious parent who grabs ineffectually at the tantruming kid hissing, "For pete's sake get up, everybody's beginning to look, stop that." These parents are thed ones who make more problems for themselves and others, because the kid is learning, very early, that they have the upper hand.

    The best parents are the ones who either walk away (to a discreet observation point) and pretend it's someone else's kid. For them - I stand and applaud (discreetly, so as not to reward the kid).

    Ya know? Either I'm really thick, or I've been lucky. Or maybe it's Australia and our kids are generally undisciplined. I don't know. But I have rarely copped the glare from other parents/grandparents. There was one time when we left easy child 2/difficult child 2 minding her baby brother (who was on a leash with a five-point harness, because he would wander away). The leash was actually an elastic cord. We came back to the spot where we'd left them (for a few minutes only) to find easy child 2/difficult child 2 "sweeping the floor" with difficult child 3, swinging him around on the end of the leash in ever-increasing circles, difficult child 3 on his back on the floor at the end of the tether like an orbiting satellite. And difficult child 1 playing "jump the tether" every time the leash came round to him. There was a circle of horrified onlookers and husband had to weather the glares of people at the appalling behaviour of the kids towards their little brother (who surely was too old to be tethered?)

    THAT was embarrassing.

    But we're getting our revenge - easy child 2/difficult child 2 is now studying hard to be a child care worker. Boy oh boy, do we have embarrassment material for HER!

    They do say revenge is a dish best served cold...