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Frustrated!
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Sk8termom posted:
I am so frustrated with my daughter's treatment team. We have a group of 3 therapists that are treating my daughter in our home for ADHD, ODD, and mood disorder (R/O Bipolar). I see the bipolar on a regular basis, with increasing symptoms on a regular cycling basis. BUT, the treatment team is attempting to "normalize" ALL of her behaviors, and making me feel even more crazy and stressed than I already am. My daughter will have days that she'll attempt dangerous stunts, have violent outbursts where she hurts me and destroys the house, tries to jump out windows, runs away, screams uncontrolably, sometimes sings songs in her own language, say the same nonsensical phrase for 30 minutes at a time, not be able to sleep and have a "restless" feeling in her limbs and stay up till 3am(till the Benedryl FINALLY takes affect), etc, etc, etc. The therapists tell me these are ALL normal behaviors and I an over-analyzing my daughter's symptoms. I need to just "mother" her more. These behaviors have NEVER been normal for her, they only began after she was prescribed antidepressants for OCD she had developed. The therapists then tell me that her normal is different now because she has never been an 11-year-old before. I am SOOOOO frustrated. They try to tell me she isn't bipolar because she hasn't responded well to the 2 antipsychotics that have been tried to treat her so far. Risperdal has shown benefits, but she still cannot control her behaviors, which her therapists tell us she can. They went as far as telling me I WANT my daughter to have bipolar. HOW ABSURD!!!!!! No one would wish this on themselves or ANYONE they know and love. I am at a loss and almost at my wits end with everything and everyone!!
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momuv4girls responded:
Oh geez, this sounds like a very difficult situation you have. First off, what meds is your daughter currently on, and at what dose? What about her psychiastrist ? What does he (she) say about your daughters current behavior ? She sounds very un-stable, this is an awful way to live, for both of you. Since there is a 'team' of therapists who disagree with what you are doing as a mom, and not seeing a problem here, then maybe you need to find some new ones, or have them talk to her psychiatrist. Please write back with info, so I can be more helpful. (((HUGS))) -Kathleen
 
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Sk8termom responded:
Actually, we are having a meeting of the minds on June 30 TUESDAY, to compile all the information that we all have, the therapists, myself, my daughter, and the psychiatrist. I cannot wait. I am so frustrated with all of this. I have given everything to the cause of my daughter staying home and stabilizing. She is currently on Concreta 54mg (She's had ADHD for 5 years now), Risperdal 2.5mg and Cogentin 4mg for the side effects. I would like to see her on a mood stabilizer, but we will see on Tuesday. As for the doc's opinion of her behaviors, I'm unsure. He wanted a 7 day observation in the hospital a few weeks ago, but the hospital only kept her 3. Go figure. She displays symptoms on day 5. TUESDAY cannot come fast enough. Keep in touch and I'll keep you posted.
 
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momuv4girls responded:
Good Luck on Tuesday !!!! I will keep my fingers crossed that some good things come from the meeting. If I may ask, what side-effect symptoms are you treating with the Cogentin? Is the Risperdal causing a tic or ? ? I am rather surprised that the Psychiatrist has not put your daughter on a mood stabilizer, yet she is on a stimulant ? YIKES !!! That is very, very risky to do in a bipolar patient. Most psychiatrists don' t even want to try a stimulant until the child's mood is completely stabilized. This could be a BIG part of your daughters issues right now. With her mood getting stabilized (with other meds and/or a mood stabilzer) many of her ADHD symptoms could go away or be less severe. My very first move would be to nix the Concerta, and add a mood stabilizer. Please DO keep me posted. I wish you the best of luck !!!!! -Kathleen
 
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Sk8termom responded:
Thanks, Kathleen. My daughter's side effects are dystonia and incontinence, and now she's having side effects from the Cogentin (blurred vision), but the pdoc is hoping to get her meds changed by the time school starts in the fall. I believe his intentions ARE to get her off the Concerta and start a mood stabilizer; I will find out TOMORROW!!!! (I CAN'T WAIT!!!) There are questions on whether she is bipolar or not, but her history speaks for itself. (Possible mood disorder dx at 3 years old. ADHD dx at 7, and the stimulants only working for a short period of time till they lose their effectiveness!) Her pdoc was hoping the hospital (when she was in a few weeks ago) would have taken her off the Concerta while she was there, but they did NOTHING!! Unfortunately, the tdocs believe she is not bipolar, and all of her problems are "PURELY BEHAVIORAL" and I need to be a stricter parent, or "WHATEVER!" I have tried EVERY parenting technique in the book, they even say I do things "exactly out of their text books", but NOTHING works with her. A few months ago, her pdoc did the baseline blood testing for mood stabilizer to be introduced. I am just PRAYING that he puts her in and takes her off the Concerta and starts a mood stabilizer SOON, so we can get some improvement during the summer, so she can have a successful school year this year. She is very intelligent, and doesn't qualify for anything but a 504 plan and emotional support through the school, but her unstable moods make her unavailable to learn, and she sabatages much of her school work when she is having either type of episode. (She went from Honor roll in the 3rd nine weeks this past year to C'c, D's and E's in the final 9 weeks due to very unstable moods. But she's NOT bipolar!!!!??) I will keep you posted when the word comes down tomorrow. I can barely contain myself till then!!!
 
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momuv4girls responded:
I look forward to hearing about the meeting/visit !!! You are right to be anxious to get her mood stable this summer so she can succeed next school year. You may need to get 'pushy' with the pdoc and insist the Concerta be nixed ASAP. Hopefully he will listen and add a mood stabilizer . . . . . as you know, this med thing is sloooow to happen and you will need time for adjustment. Take care - (((HUGS))) Kathleen
 
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Sk8termom responded:
Well, The good news is that the pdoc is taking her of the Concerta, as of today. The absolutely HORRIBLE news is that, starting tomorrow, he is weening her of the Risperdal as well. In 3 weeks she will be completely free of an antipsychotic!!! I am absolutely terrified!!! The therapist talked the pdoc into cleaning her out of meds so they can see for certain if she is bipolar or not!! So, my daughter and I get to suffer through this next month of complete and utter chaos, just to prove what I already know. THEN, MAYBE, we can get down to business, and get a mood stabilizer on board. CAN YOU FREAKING BELIEVE THIS!!!!!! I am having flashbacks of her raging on a nightly basis for weeks at a time. That was on Abilify and before 4 hospitalizations in Dec and Jan. I hope this little experiment proves to them once and for all that she is bipolar!!! They have doubted the dx from the beginning, but they didn't know her before she was on Risperdal. They have only known her 4 months. Maybe then, they will get down to brass tacks and do their freaking job, instead of fighting me on the dx!!! I pray I make it through this in one piece, with the experience of a horrible med change fresh in my mind from a month ago. I just can't believe this is happeneing, just like starting over from square one!
 
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momuv4girls responded:
Hello again, I am happy the Concerta is going away . . . . . that is definitely a step in the right direction !!! I'm not saying this to be mean or insensitive, but YOU are her mother, you live with her and know her better than anyone, so you should be assertive, and tell her pdoc (psychiatrist) that you are NOT taking her off the Risperdal. You want the Concerta gone, then see what's left (how her mood/behavior is). Calmly explain to the Dr. your concerns, and how going backwards to the way she was before, is not an option. You can not live with an explosive, destructive child, period !! I am wondering why the pdoc has doubted your daughters bipolar diagnosis? What behaviors make him think the dx is wrong? He needs to see her totally off the Concerta first, then see how she does on only Risperdal. He also needs to listen to YOU, and what your life was like with your daughter waaay back before any meds. Seriously, this is what I'd do. You can not live in a war zone. Its bad for your daughter, and not healthy for you !!! I hope the Dr. will listen. I'm sorry for your disapointing visit :frown: Take care, and call the pdoc to discuss!!! -Kathleen
 
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WHATWILL2DAYB responded:
My daughter has been diagnosed OCD,ADD and BIPOLAR for 3 years now. She is 11 and I understand all you are going through. I say concentrate on the Bi-polar with meds, we have learned every AD med she has been given sent her into severe rages. She has been hospitalized twice. We have her on Zoloft,Wellbutrin SR and Trileptal. It took awhile but these meds are doing great for her. We explained to her she just needs to work harder in school with the AD because she agrees she does not want to have behavoir like she does on AD meds. She passed with one D, all rest B and C's. Advice: keep track of her outbreaks and what set her off, switch doctors till you find one who works for you, hospitalize her (our daughter realized she is not the only one w/problems), talk about it with her. Don't remind her of her actions when she was in her rage. I know things are easier said then done, but hang in there.
 
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Sk8termom responded:
It is the tdocs that come to our home twice a week who doubt her dx, not the pdoc. It was the tdocs that suggested cleaning her out to see what she would be like without any meds. That is what they have wanted from day 1, and now they got it! They FEEL that all of her actions are "PURELY BEHAVIORAL" and she can control herself, although she tells them that she can't. They say that they don't SEE the bp, and try to "NORMALIZE" all of her bizzare and abnormal behaviors. I feel trapped in this, cause NO OTHER OPTIONS were given to me. I am VERY FEARFUL of tapering the Risperdal, just from past experiences, when we tried to do a med change. I feel that the ONLY way the tdocs will FINALLY listen to me and get down to business is if I do this to prove her dx. I feel like I am back at square one, or square negative ten, in her treatment now. The pdoc knows of my anxiety problems, and voiced his concerns for me, but gave no other recourse or options.
 
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mychaoticlife responded:
I am really concerned about what the effects of Concerta on a bipolar child. My daughter was diagnosed ADHD 3 years ago by her pediatrician. We started the different meds and finally found that Concerta was working the best.(as best could be ) She was also on clonidine to help her sleep, because she has never slept since she was a baby. The Concerta helped to control her during the day but in the evenings it was a nightmare. She was sooo wound up that I would count down the hours till she got the clonidine to make her sleep. It made me feel horrible to want her to go to sleep. Over the last few years though things were changing for the worse. As she got older the raging fits got worse, to the point that a few months ago she was demolishing her room during her "rages" as we would call it. She woke up at 3 a.m. and was hungry. I offered her 3 cookies and some milk to fill her a little and she could go back to bed. Well of course she wanted 5 cookies, and you can see where this went. Ended up the whole house got woke up. So my husband and I sat down and made a list of all the things going on. We had a full page of signs and symptoms. I called the doc the next morning and he told me he was sure we had misdiagnosed her. He said that the signs of ADHD and bipolar in young children mimic each other. So immediately we weaned her off the clonidine and put her on resperidol. We have been on it now since April. We recently increased the dose to twice a day. My concern is the Concerta also because it affects her moods, which can change rapidly. The doc said to keep the Concerta but I am curious as to what else we can do. We take it day by day but things are still difficult. I am glad my husband found this support website and would be glad, no excited to have people to chat with that understand what i am going through
 
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MLBGuy responded:
Sk8termom, I am really sorry for the situation you have to go through. I hope everything gets better for your family. Your daughter sounds very unstable, which is really not a nice way to live. Let us know what happens God bless
 
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Sk8termom responded:
From words of recent experience, TAKE HER OFF THE CONCERTA!!!!!! I refused to ween my daughter off the Risperdal, but I did get rid of the Concerta, as of last Wednesday. My daughter is the daughter I had nearly a year ago. She is patient, she isn't demanding about things, she doesn't get agressive when she is asked to do things, she goes to bed without being asked twice. Yes, it has been a short time, but I will take any amount of time that is enjoyable that I can get with my daughter. I just wanted her back, and we may FINALLY be on that way. Of course, her therapist, who would not believe she was bp, is shocked at the recent developments. I am looking forward to the apology she BETTER give me the next time we meet for session. If you are interested in other parents to chat with on-line, go to DBSAlliance.org/forum. I have joined the parent forum on that sight, and the weekly supporter support groups, and it is AWESOME!! Give it a try. You will find LOTS of parents like us there. WE ARE NOT ALONE!!!!
 
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mursedaddy01 responded:
Hi, I am a parent of a 12 y/o with BP. I too can attest to the removal of Concerta, in fact I was told by my son's psychiatrist that giving a child concerta and seeing the results is a diagnostic tool they use to differentiate betweeen BP and ADHD, which is what the doctors first thought we were dealing with. I kind of just stumbled on this site and feel some relief that we are not the only ones dealing with the crazy behaviors, outbursts, temper tantrums, mood swings etc... Sometimes I want to tell people why my son acts like he does but I don't want him to be treated differently than the other kids in the neighborhood. It's nice to see people coming together instead of criticizing each other. Keep up the good work and hang in there, sooner or later things will work themselves out
 
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Sk8termom responded:
Yes, my daughter was dx with ADHD 4 years ago, and has gone through the gammet of stimulants. They all eventually lost their effectiveness, and with the Concerta, fueled the bipolar fires. Life is 1000 times better right now without the Concerta. My daughter is back to herself, and we now have the correct dx. Her current pdoc will be referring her to a child bipolar specialist to help her further. I am excited for that, although I love our current pdoc. But, anything to help my daughter. Keep on searching the web and join as many of these things as you can. They really do help!


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