switching doctor's

Discussion in 'General Parenting' started by Jena, Sep 29, 2008.

  1. Jena

    Jena New Member

    hi,

    so i've thought alot past few days on how to handle stuff with this whole "thorazine" drug that was prescribed difficult child. I did my best, worked it through, read the clinical trials, went to the fda site to view the incedences of the drug. At end of day I am not giving it to her. I contacted her current dr. 5 days ago now, and i did not receive a return phone call. He thought I was placing her on medication, so this could of been an emergency and no return call.

    I have not officially dropped him yet and sent a letter releasing him, I am in process of bringing her old dr back in. He was very expensive and in city and it got to the point where i was unable to pay him. He does not accept insurance. Yet he truly cared about difficult child, answered my calls at anytime of day or night, was great with difficult child, she also liked him and spoke to him quite a lot. We worked together with finding a solution, he asked for my input and my thoughts, and stepped carefully with each medication. so he finally called me today we are playing phone tag right now yet I am hoping by the time difficult child returns to school on thursday i have him on board, I will also require him present at the iep/504 stuff cause their fighting me on it.

    i've submitted a log typed to the school two days in row when difficult child was not in on time. i will be asking the new dr. if he's on board by thursday to write a letter to the school explaining difficult child's latenesses every a.m. so that attention is taken away from me and i have documentation backing me up.

    lillyth here suggested asperger's syndrome, which is quite possible i think. would fit with the repetitive behaviors at bedtime, the sensitivity issues, the need for routine in place at all times, the anxiety as well as the huge social issues and fact she really is not good at initiating conversation or making new friends, and also the most severe is the lack of sleep and the sudden dips in her which the dr.s state is the BiPolar (BP). so i've made a call to a facility today to hopefully set up an evaluation for her. I don't like putting difficult child through more yet it's important that we find an answer to this so that we don't wind up with the wrong diagnosis.

    sure she's got the anxiety disorder, depression, adhd, the tics, yet adding asperger's to the list would make sense.

    we shall see, if is isnt' that then i will accept the diagnosis of BiPolar (BP) and move forward. meanwhile i am hoping to get some medication in place with the new dr. he may have a hard time not knowing if it's BiPolar (BP) or not yet she's got a ton of others issues to grab from so i'm sure that he can find something for her. he's kinda new at it which scares me a bit only 8 years in, yet he's got alot of heart and works in a hospital everyday with varying disorders, handles kids and he'll take the time to truly "review" the file, which other doctors don't.

    so we shall see. most important thing right now is getting her sleeping....... i read up on weighted blankets today and white noise machines.......i have never tried weighted blankets. we have tried various cd's and other methods for sleep to no avail.
     
    Lasted edited by : Sep 29, 2008
  2. smallworld

    smallworld Moderator

    Jen, I think it's critical to work with someone both you and difficult child like and respect.

    Some kids with AS can have co-morbid mood dysregulation so it's possible your difficult child has a little of this and a little of that. I hope you get some answers soon.

    Hang in there.
     
  3. Lillyth

    Lillyth New Member

    Jen,

    I just want to jump in and say to also make sure the evaluating doctor has experience with dxing aspie in FEMALES.

    It is very different in girls as opposed to boys, and because females are often more social, it is missed much more in girls.

    http://www.yourlittleprofessor.com/girls-and-aspergers-syndrome/

    Girls are often overlooked in this diagnosis.

    How did the weighted blankies work? Does she like to sit under stuff?
     
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Jenn...

    Im going to answer your post this one last time and then Im simply going to quit doing so. Maybe most people here will think I am being mean...who knows. I am trying to be helpful.

    From what I have read from you since you have been here you have taken your child to numerous places to have her evaluated. I have lost count. You seem to keep looking for some magic answer that only you will understand but I dont think you even know what you are looking for at any given point.

    You question everything the doctors tell you even when so many agree with what they say. If it quacks like a duck, it is probably a duck. Or better yet, if you hear hoof beats think horses first not zebras.

    If you continue on taking your kid from pillar to post getting evaluation after evaluation all you will do is get the evaluation of the week. You wont be any closer to finding out what is really wrong with her. She will just be getting older and older and you still wont have tried any medications. She still wont be getting any interventions or therapy. She will still be disrupting your life and hers and her school life will be disrupted. Eventually she will become older and this will become tiresome to her and she will rebel. She will refuse to do this anymore.

    You have a kid on your hands now that is exhibiting all the classic signs of bipolar disorder. Insomnia, hypomania, grandiose thinking, anxiety, irritability, sleep disorders, etc. Do you want this to go on or do you want to attempt to treat this now?

    Pick a doctor...stick with them long enough for them to actually work with you and prescribe medication. Give the medication time to work. 6 to 8 weeks is a normal time frame. Stop listening to the schools or your neighbors or even the trashman. Dont tell them what she is on. None of their business.

    Take my advice or dont. Really doesnt matter to me one way or another. Its not me you are driving batty but its yourself and your child. You are denying your child a stable home life.
     
  5. Jena

    Jena New Member

    Lillyth - thank you for the links, I do appreciate it. I see your point it is very hard when you are dealing with doctors with whom do not have experience with certain disorders. If the doctors were sure of the BiPolar (BP) diagnosis than i wouldn't consider another evaluation yet their hesitant apparentley which is making me so as well.

    Janet - Hi, I am a big girl and can take constructive criticism very well, along with the immesurable support I'm always given here, which is why I am part of this amazing community with so many amazingly smart and intuitive parents, with that being said I can totally see your point and from your perspective why you would think that I"m "denying my child a stable home life", and "driving myself batty and my child."

    Yet without all the facts one should not make such rash statements. So I will explain in more detail where i have been with this and what the various doctors have said and then maybe you will see the level of confusion that I as a parent am facing, or maybe you wont' and that's fine.

    I have been told by 2 doctors that it is "possible" that difficult child is bi polar, along with anxiety diagnosis, Obsessive Compulsive Disorder (OCD), adhd, and whatever else i wrote i tend to forget at this point the dxs.

    The first dr. that stated such i could no longer afford at the time, I had to take my ex to court because he was not helping to pay, so we found someone more local who the nyc dr also advised.

    Next doctor, He then stated after giving her the "drug for BiPolar (BP)" and it did not work after a normal time frame of 2 mos. she had adverse side effects stated clearly we need a more comprehensive testing done, i then took her for a neuropsychologist evaluation. very thorough. After spending time waiting for the report to be completed difficult child was attending in school therapy as well as private for quite sometime to no avail the therapist chosen was too passive and was not making any headway with difficult child at all, pyschdoc advised strongly to change therapist, that was a matter of weeks ago we are now looking for new therapist to work with difficult child, she is still receiving in school anxiety class therapy.

    The evaluation done by columbia was well skewed to say the least. I have a very aggressive, denial stricken ex with whom fights me on everything so he got into see the testing person at columbia and shared alot of my personal info with them (why i do not know why stating that i want my child to have BiPolar (BP), lol) they then concluded very strongly and is written on such report that difficult child does not exhibit any behaviors that would indicate BiPolar (BP). I was then contacted by the hospital after the written report was then sent to my home via fed ex that after reviewing such report they noticed certain defecinies in certain areas execut. function, memory, etc. i asked to document they stated not without more money!!

    No doctor has clearly stated bipolar to me other than stating "likihood" yet she is not meeting dsmv criteria she is also not displaying the classic "grandiose" thinking in their eyes at all, and sleepless nights are waring on her and she is sleeping during the day, also not fitting true hypomania or manic, they would not require sleep. they are not sure due to the many issues and she is displaying they cannot put their finger on it, there is always a strong area of doubt here.

    We have tried "at length" two antipyshcotic" medications for difficult child and administered them for a good time frame both of which did not work. We do not know why, doctors do not know why, hence if it is BiPolar (BP) improvement should be shown, seroquel seemed to be best fit yet adverse affects there as well it stopped working after a while and then boom a rash when he increased dosage to get to the theraputic level. Same dr. tried to treat the anxiety since it is the most prevelant of the disorders she does not respond well to ssri's yet another "slight" indicator that is is BiPolar (BP). yet not totally true because difficult child is sensitive to medications as doctors have told me and that some kids just can't take ssri's.

    I question things as a parent it is my job to do so as do many others here. I do not except the word of a dr. who reviews the file for 5 minutes with me in the office, takes no real time to review her file her behaviors and truly"chart it" as you say and follow the progress. I do that at home. If doctors would say to me yes jen it is BiPolar (BP) 85% sure of it, let's try a cocktail of medications, then i'd move forward with it. Yet that is not what I am hearing from these doctors. Diagnosing BiPolar (BP) takes years as you stated of observing and charting the child's behaviors, therapy, etc.

    In my opinion there is a reason why the previous medications have not worked, there is a reason why these doctors are not sure it is a mood disorder. Current dr. sent letter to the school recently i found out and worded it very carefully to ensure he covered himself and did not diagnosis BiPolar (BP) at all.

    I am one with whom is not going to pop her on multiple medications' i've done my research and great harm could come to her if i just fold and say ok let's pop in two medications, i also have to trust my gut and intuition. So, if taking her for another evaluation just to ensure it is not something that they missed, that is what i need to do as a parent than it is just that, plus mental health is a grey area as we all know and process of elimination is key at times.

    I am not looking for a magical answer, i am looking for a somewhat accurate diagnosis, without all the doubt surrounding it. That diagnosis is anxiety disorder, Obsessive Compulsive Disorder (OCD), and depression (bouts of it though) and as you know serious sleep issues.

    So, there's alot more yet too long to list. Point being is that the doctors are not sure, medications have been tried and given and extensive therapy as well. Yes it is true she needs one doctor for a period of time and the switching has to stop yet when i place a call into the office and am still waiting ummm 7 days for a return phone call that is not acceptable to me, i'm sure he doesn't like to wait for his check from our insurance company. Also he is not willing to back me in a letter stating why he would prescribe difficult child the thorazine. So if he's not willing to back his word then he's out and gotta go in my eyes. I've got an ex husband contacting attnys due to him prescribing the medication, trying to get a court order in place to stop the administering of such drug,i've got a school up in arms regarding this medication, and now stating it is a "home problem", so unfortunately i have to cover myself and watch my back as well here.

    We are all different, we make different choices, and different decisions concerning our difficult child's some better and more concise than others. Yet part of the beauty of this website is to vent, to open new threads to throw out ideas, etc. I am not looking for the trashman's approval or my neighbors, infact the only ppl of which know of this are you guys, my family and 2 close friends. So if you find my threads confusing, or my approach towards difficult child's situation upsetting in anyway you have the choice not to respond to my threads. Yet I do appreciate you taking the time to share your thoughts, yet the key here and i have been guilty too of it from time to time is before making "rash" statements ask questions.

    Thanks again
    Jen
     
  6. Jena

    Jena New Member

    Lillyth -

    Sorry didn't answer your questions, got wrapped up in the other response I recvd. lol

    Weighted blankets I just learned of last night on web, because i was clicking around while she was watching a movie to find other things that I haven't found yet till I get a medication in place again.

    I have found several companies on web that offer them, yet it depends on what it is that you wanted it stuffed with apparentley. So i'm just reading over the reviews, etc. I can go with that now since we went back to pull ups again and have avoided the daily washing of comforters and sheets and ruining her mattress.

    she was up again last night down by 4 a.m. i believe it's ten now and she's still sleeping. see these are the reasons why i will not accept a BiPolar (BP) diagnosis, if this was hypomania or mania doctors have said she'd be up bouncing. we do have those days, yet we have alot more whereas if she is allowed to crash and doesn't have to go to school she does. yup confusing, as it is for most of us.

    yet no stone left unturned I say, and process of eliminination. We just have to find the right medication, and we are having rough time with it. ssri's are out, benzo group is out, few antipyschotics did not work, i'm waiting on any doctor to call me back at this point. id' like to utilize the day and tomorrow fact she's off to begin one.

    thanks!
     
  7. house of cards

    house of cards New Member

    I hope you can find a more solid diagnosis and a psychiatrist you have confidence in, I know it isn't any fun trying to find a new one, at least I hate it. I don't know if you will ever be 100 % sure of a diagnosis thou. I have a 21 yo that was diagnosed ADHD when he was 7 or 8, every year there would be reports about how over diagnosed ADHD was (every Sept.), and every year I would question myself and what I was doing giving him ritalin. Now I am going through the same only deeper with my 10 yo. The medications can have huge side effects but I don't think we could go on without them.

    I am so waiting for the time when these brain illnesses can be diagnosed with a reg medical test, I want it to be black and white and I don't want a diagnosis dependant on only my reports of behavior. I believe research will get there soon...but not soon enough for me.
     
  8. Jena

    Jena New Member

    hi,

    yes grey is a bad bad area........ i'm sorry to hear what you had to go through, and now again. I don't think i'll ever have a totally 100% diagnosis, yet saying well i think it may be bi polar pop thorazine of all medication's makes me a little shakey to say the least and rightfully so. It's not all ugly, we just as parents often share the trying moments, we flew a kite today with her friend at the park and she had a great play date.

    it's rough giving them medication's when their little, and thorazine side effects are quite different from everything i've looked up in comparison to the other antipsychotics. ie. cannot move eyes, is just one of the Call Dr. Immediately ones, ugh is all i can say. if she was to have one of those major side effects i'd have to put her in the truck and bring her to the e.r. where they wouldnt' be able to give her anything because she flies on any type of pain relievers lol......

    What is it your ten year old struggles with? i don't see anyone's signatures when i log on for some reason.....
     
  9. klmno

    klmno Active Member

    Have you ever tried a first line mood stabilizer with her instead of an AP? Not that I'm suggesting it- I'm not a psychiatrist and I know there is concern with a lot of these rx'd for younger kids, but my son hasn't had a lot of good luck with AP's yet he has to have the MS, so I was just curious.
     
  10. Jena

    Jena New Member

    klmno- hi, we've tried seroquel and abilify, chlonidine for sleep that worked sometimes and current dr. said i was basically insane giving that to her, lexapro, prozac, and 2 others i'd have to get my notes.

    which one were you thinking? dr. i spoke to today current guy he's still holding at thorazine. bottom line i'm afraid simply put, right or wrong almost 40 but thorazine scares me. i was fine with all the others, this one i've been threatened by ex, school had dr. write letter today i'm picking up to back me with this medication, and also difficult child's lateness every a.m. due to lack of sleep and also stating that he believes difficult child needs an iep because schools fighting me and making it more difficult than it should be. yet i just realized i'm new to this area difficult child graduates this school next year, and goes off to middle school wow is all i can say
     
  11. klmno

    klmno Active Member

    I don't want to suggest that a psychiatrist put her on these, or that you push for it- they can have different and bad effects for young children and I'm certainly no psychiatrist, but if there is question about a Bipolar diagnosis, I am wondering why nothing like a first-line MS has been tried. Again, it might be due to her age and size and it might be due to side effects or questionable diagnosis. I think the first line mood stabilzers include lithium, lamictol, depakote, tegratol, trileptol and topomax. AP's are used a lot for add ons or when there is a mood disorder that is not otherwise specified, I think. But, I am not certain. I can tell you that difficult child does not respond well to AP's, but has seen benefit from MS's.
     
  12. Jena

    Jena New Member

    klmo - please, sounds like you are a bit worried i am fully aware that no one here can diagnosis, i've been here for a while, nor am i going to push a drug due to someone suggesting. Listen I got a rough response today i handled it well i think :) and throwing stuff around in here is what we all do and it's great and helpful.

    problem with my difficult child is she is displaying symptoms from alot of different stuff it's what i've heard for years and this doctor basically said to me ok hmm which drug should we give her?? lol i said umm are you kidding me? what do i need you for then the pad to write it? he threw out lithium but wasn't comfortable with that, threw out depakote but he didn't like that one either. and he did state that her behaviors go hand and hand with the diagnosis of bipolar not otherwise specified. yet his wording to the school was so crafty he was covering himself. truth is he doesn't know.
     
  13. Jena

    Jena New Member

    and by the way wish you guys could diagnosis, probably would of solved this a while ago. lol joking.......yet these doctors sometimes are a bit scary....
     
  14. house of cards

    house of cards New Member

    Jennifer, My difficult child has a solid diagnosis of Fetal Alcohol Effects (FAE), a weak diagnosis of BiPolar (BP)/mood disorder (but I believe it is solid), ADHD (I wonder how much is really BiPolar (BP)), solid diagnosis of Anxiety(although he doesn't fit when I take online tests/evaluations, I see it as a big problem). He has shown sensory issues, fine motor problems and has probably earned a ODD diagnosis because of refusal to do schoolwork. Don't remember any more but whatever specialist I take him to finds their problem in him, it's enough to drive you mad.
     
  15. Jena

    Jena New Member

    hi,

    yes it can get quite hectic indeed. i know exactly what you mean. i cannot in good faith administer this drug thorazine, i have really tried to get ok with it, listened to dr. read up compared it to other antipyshcotics, read up on a Andrew Stoll phd with whom opposes use of dangerous medications on kids, some truly do need it don't get me wrong and i'm not saying difficult child doens't need it. yet klmo is correct in stating that a mood stabilizer has not been tried and i tend to wonder why. these doctors here because she displays varying symptoms make me do the work which to me is ridiculous. so i sat on line last night viewing all similar medications took notes and am scheduling a meeting with him. so much of this shouldnt' be on my hands, i'm not the doctor i'm just the mom here.

    i've listened for years to them gave the medications prescribed, financial reasons stopped me from continuing with the last dr. in nyc, my ex was supposed to pay and didn't. my heads just spinning and it's upsetting.

    ok what is Fetal Alcohol Effects (FAE)? i've never heard of that before, how is your difficult child doing now? have you found a balance yet?

    it's funny i did what i was supposed to, took her for neuropysch testing, took her initially Occupational Therapist (OT) great hospital here at first for evaluation when i began, so technically she's only had two formal evaluation's done in a hospital setting. just seen about several doctors.

    difficult child slept last night by 1 a.m. and woke up today going on 11. she looks so good and rested today and these are the days that are usually good, no school lower anxiety she's alot calmer. yet boyfriend's kids come today and they over stimulate her which is clearly an issue. he has two younger ones with whom she plays with and that seems to trigger the hyper ways in her or hypomania.
     
  16. TerryJ2

    TerryJ2 Well-Known Member

    Hi Jennifer, I for one am relieved that you are not giving thorazine at this age. I recall your original note questioning it and I was worried about it then.

    The repetitious behavior very well could be Asperger's, but bipolar could be mixed in. Anxiety can go with-both. She's still so young ... it's so hard to tell when they're young, unless you have extremely clear signs and bio history, and your experiences sound mixed. Having doctors who want to cover their tails in writing is pretty typical. :)

    I would be focusing on the sleep issues, since with-bipolar and Asperger's, sleep is paramount. Heck, it affects regular folks!

    by the way, my son is taking clonidine and it works well to "take the edge off." I thought it was prescribed for sleep but it did nothing to make him sleepy, so we went to Vistaril, the antihistamine. (Both of these, by the way, are being used off label.) You may want to try the clonidine again sometime for the anxiety, rather than for sleep, since your daughter is getting older.

    I don't see anything in your profile about whether you daughter has allergies (milk, wheat, red dye etc.) but I would definitely keep any eye on that.

    Best of luck with-the new/old dr.

    Let us know when
     
  17. house of cards

    house of cards New Member

    Fetal Alcohol Effects (FAE) is fetal alcohol effects, similar to fetal alcohol syndrome. He was drug/alcohol exposed in utero. It causes brain damage basically.
     
  18. Jena

    Jena New Member

    hi,

    terry that's funny because difficult child was on chlonidine and the dr. i currently have stated oh no do not give that to her its lethal were his words. she had been on it for over a year, very small dosage as you know it's a blood pressure lowering medication so it's lowers it which basically makes them knock out and induces sleep. till this dr and i find a plan and still working with current dr i had him write letter to school stating difficult child's sleep issues is due to her disorder to cover my butt, also stating he believes an iep is crucial as well, school won't back me on that. meanwhile i have tried melatonin, yet never a mix of melatonin and tryphontan not spelling correctly the stuff that's in turkey so i'm mixing up a combo tonight just to get me thru for now. i do need to get the sleep regulated. we have tried 3 medications for sleep yet none worked it left her basically dillussional the next day.

    thanks, yet i really tried but for some reasons when i looked at the reg. side effects of drug they were too severe, ie one was childs eyes become fixated and they can't move them oh my that would be too insane for her. she'd detach if that happened causing her more grief and anxiety which would def. take away from her level of any kind of stability. hospitalized sure with staff pop it in her, me alone at home, or her in school whereas these ridiculous staff are now handling her how they see fit and not allowing her anymore nurse visits, she'd cry and they'd say oh difficult child there's nothing wrong with you sit down. then i'd have to take my truck and drive it thru the school........lol.....
     
  19. Jena

    Jena New Member

    oh, i'm so sorry that is so difficult. thanks for explaining what it meant i stil don't always get the abbreviations, and i see no one's signature when i'm on so i'm clueless. :)
     
  20. house of cards

    house of cards New Member

    Jennifer, if you go click on User CP in the top left of the page and then click on Edit Options in the column on the left. Scroll down to Thread Display and make sure the "show signatures" is checked, I think you will get them.
     
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