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New to board-need input on daughter's symptoms
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<blockquote data-quote="dcmckay" data-source="post: 263082" data-attributes="member: 7214"><p>I will do my best to answer everyone's questions. Thank you so much for your input! We feel like we are at the end of our rope with her and dont know where to turn.</p><p> </p><p>What medications/doses was she taking when she was stable?<span style="color: red">She was stable for years on Lithium, Risperdal and Depakote. </span></p><p>Why was she switched from them? <span style="color: red">She had to come off Lithium d/t kidney issues and Depakote d/t elevate liver enzymes.</span></p><p>What doses of her current medications is she taking?<span style="color: red">Zyprexa 30mg bedtime, Tegratol 400mg 2xday (last level 8.2), Clonidine 0.1mg bedtime and prn, Amantadine 100mg 2xday, Doxepin 100mg daily, Diuril 500mg 2xday (takes d/t elevate calcium and protein in her urine).</span></p><p> </p><p><span style="color: black">We live in the middle of the Texas Panhandle, several hours away from any university with a child psychiatry department. She used to go to Tx Tech in Lubbock, which is 2 hrs drive, but the head of the department there told us to find a new dr after a yr of treating her, because she didn't know what else to do for her. We have literally seen EVERY psychiatrist within 200 miles of us. We now drive to Oklahoma City monthly, which is about 4 1/2 hrs away, to see a psychiatrist. Part of the problem we face, is that we have exhausted all our financial resources trying to get her help. We now literally live payday to payday and I have almost no PTO time to take off for appts, d/t her being in the hospital so much in the last year. We have recently gotten her on a Medicade Waiver Program (MDCP), which will give her Medicaid starting May 1st (Thank God!) She will also get about 30 hrs a week of attendant care to help us with her in the evenings and weekends. We are praying that the addition of this program will enable us to be able to keep her home a little longer. The state facility that we are checking into is a short-term facility, with the average stay being 3 months, but they can stay longer, if needed. I personally think that she needs to be weaned off ALL her medications (except the Diuril for her kidneys) and then see what symptoms she has and re-evaluate her then. She has been on some medication, and usually several medications, continuously since she was 3 yrs old! I sometimes wonder what she's really like under all those medications, but anytime we have tried to wean her down, she becomes so out-of-control and can't be managed (or she tries to kill herself). Private insurance has never let her stay inpatient long enough to reall accomplish much with her medications. She did get to stay at Meridell Achievement Center(Residential Treatment Center (RTC)) in Austin for 30 days last year and they did a complete neuropsychologist evaluation, which is where we found out about the cerebral dysrythmia, frontal and temporal lobe disfunction and seizures. </span></p><p> </p><p><span style="color: #000000">(Sigh) Not sure what else to say. It has been a very, very long 14 yrs and I am exhausted. I'm tired of fighting insurance companies. I'm tired of fighting the school system. I'm tired of fighting dr after dr. I'm tired of having to explain to my boss why I need to miss another day to take her to this dr or that dr. I'm just plain tired of it all!! I just wish for my daughter to get stable enough to stay home. To not be violent or suicidal. I know she will never be "normal", but will stability be something we ever see again??</span></p></blockquote><p></p>
[QUOTE="dcmckay, post: 263082, member: 7214"] I will do my best to answer everyone's questions. Thank you so much for your input! We feel like we are at the end of our rope with her and dont know where to turn. What medications/doses was she taking when she was stable?[COLOR=red]She was stable for years on Lithium, Risperdal and Depakote. [/COLOR] Why was she switched from them? [COLOR=red]She had to come off Lithium d/t kidney issues and Depakote d/t elevate liver enzymes.[/COLOR] What doses of her current medications is she taking?[COLOR=red]Zyprexa 30mg bedtime, Tegratol 400mg 2xday (last level 8.2), Clonidine 0.1mg bedtime and prn, Amantadine 100mg 2xday, Doxepin 100mg daily, Diuril 500mg 2xday (takes d/t elevate calcium and protein in her urine).[/COLOR] [COLOR=#ff0000][/COLOR] [COLOR=black]We live in the middle of the Texas Panhandle, several hours away from any university with a child psychiatry department. She used to go to Tx Tech in Lubbock, which is 2 hrs drive, but the head of the department there told us to find a new dr after a yr of treating her, because she didn't know what else to do for her. We have literally seen EVERY psychiatrist within 200 miles of us. We now drive to Oklahoma City monthly, which is about 4 1/2 hrs away, to see a psychiatrist. Part of the problem we face, is that we have exhausted all our financial resources trying to get her help. We now literally live payday to payday and I have almost no PTO time to take off for appts, d/t her being in the hospital so much in the last year. We have recently gotten her on a Medicade Waiver Program (MDCP), which will give her Medicaid starting May 1st (Thank God!) She will also get about 30 hrs a week of attendant care to help us with her in the evenings and weekends. We are praying that the addition of this program will enable us to be able to keep her home a little longer. The state facility that we are checking into is a short-term facility, with the average stay being 3 months, but they can stay longer, if needed. I personally think that she needs to be weaned off ALL her medications (except the Diuril for her kidneys) and then see what symptoms she has and re-evaluate her then. She has been on some medication, and usually several medications, continuously since she was 3 yrs old! I sometimes wonder what she's really like under all those medications, but anytime we have tried to wean her down, she becomes so out-of-control and can't be managed (or she tries to kill herself). Private insurance has never let her stay inpatient long enough to reall accomplish much with her medications. She did get to stay at Meridell Achievement Center(Residential Treatment Center (RTC)) in Austin for 30 days last year and they did a complete neuropsychologist evaluation, which is where we found out about the cerebral dysrythmia, frontal and temporal lobe disfunction and seizures. [/COLOR] [COLOR=#000000][/COLOR] [COLOR=#000000](Sigh) Not sure what else to say. It has been a very, very long 14 yrs and I am exhausted. I'm tired of fighting insurance companies. I'm tired of fighting the school system. I'm tired of fighting dr after dr. I'm tired of having to explain to my boss why I need to miss another day to take her to this dr or that dr. I'm just plain tired of it all!! I just wish for my daughter to get stable enough to stay home. To not be violent or suicidal. I know she will never be "normal", but will stability be something we ever see again??[/COLOR] [/QUOTE]
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