Son in hopsital feel like we're on wrong path

Discussion in 'General Parenting' started by mom22, Apr 12, 2017.

  1. mom22

    mom22 New Member

    I posted for the first time a few days ago just after my son was admitted to the psychiatric hospital straight from his regular psychiatric appointment. He is almost 9. The plan or reason for admitting (as I understood it then) was to get him off all medications (abilify, risperdal, and concerta) because we have been seeing increasing aggression, lack of motivation, super mumbly speech, general downhill slide... There seems to be a lack of communication between all his caretakers. The first day he was given regular medications because the covering Dr. said "by the time I read his chart and saw that we were going to be weaning, he had already received medications for the day". Then next DR. called me the next day to say they wanted to start Triliptal. I said "wait - I'm not comfortable with that as I thought the plan was to get him off everything and then see how he does and start over...."

    Meanwhile I just got the report from the Neuro-psychiatric evaluation which indicates he needs more/better supports for autism diagnosis. He is high functioning and it is easy to see him as "normal" but the Dr. outlines quite a few areas that were really challenging for him during the evaluations that would also present significant challenges at school and home. And she added a diagnosis of dyspraxia to his list.

    When we started medication 2.5 years ago it was to help with the extreme hyperactivity. Then we were adding medications to treat anxiety. Then aggressiveness. Now mood disorder and slurred speech.... I feel like we are going down the wrong path. He has always had a really poor/sensitive response to stimulant medications as well as non-stimulants (we've tried them all).

    Yesterday when I saw him (way down on the abilify but still on risperdal and concerta) he was completely flat in personality, detached, and tense. Today when I saw him (no abilify and no concerta) he was off the charts hyperactive but more happy and no tension in his face.

    Couldn't it be possible that we were causing this worsening with the wrong medicine approach? When I asked the Dr.s they responded by saying "we treat the symptoms". That is fine but I think we also need to uncover the root cause.
     
  2. JRC

    JRC Active Member

    Hi Mom22-

    When you say "mood disorder" what specifically is his diagnosis? Treating mood disorders along with comorbid disorders like ADHD (i.e. the hyperactivity you mention) are tricky. Many medications that are used to treat ADHD can induce mania (often looks like aggression) in children with a bipolar mood disorder. So yes it's possible the medications have exacerbated his symptoms or created symptoms.

    And yeah, sure, doctors treat the symptoms. S/he is right. But understanding the primary diagnosis and comorbid diagnosis are important to careful treatment.

    I'll give you my son as exhibit A. He has bipolar disorder and ADHD. He'd been off all stimulants since November. We put him back on in March because he couldn't concentrate at school. We knew that it was possible that it could cause hypomania. It did. He's been off the stimulants for weeks now (since March 21st) and he still is having agitated mixed mood states. Slowly decreasing but, man. Mistake. We (doctor and us) knew it could happen and took a risk. But that's the outcome. Now he's out of school until he stabilizes :( So, treating the symptoms of ADHD were not a great idea in hindsight. He was better off struggling with the ADHD symptoms and having teacher support than the alternative (not being able to go to school at all because of destabilization).

    EDITED TO ADD: He takes Lamictal 300mg and Abilify 15mg
     
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I personally do think its important to fi d out the core problem. That way the entire disorder can be addressed, not just symptoms.

    I dont like too many medications in one kid. I agree with poster.
     
  4. Praecepta

    Praecepta Active Member

    Medical science is NOT that advanced! It was not long ago that they were draining blood from people as a cure (blood letting).

    Psychiatry has a LONG way to go - yes in many cases they do not have any fixes for the root cause.

    And I've always thought it interesting that medical doctors have a philosophy of "removing parts" if they don't work... Remove tonsils, remove gall bladder, remove appendix, etc.

    What if we did the same on cars? Brakes not working, Remove them!

    Anyway I've found that psychologists (which do not typically prescribe drugs) are more inclined to deal with the cause of a problem, not just try to mask it.

    Read books and watch YouTube videos on the diagnosis names. Like "dyspraxia". Learn all you can. You may have the advantage of having time to watch these videos and read all about it in books. Learn the newest things. And maybe you can find something which helps. At a bare minimum, understanding something can be a BIG help. For example with ADHD, they say to teach in short sessions, then let the kid (or adult) go wild and expend their energy, then go back to the lesson. Not knowing this can be an exercise in frustration!
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Psychiatry has a long way to go. But psychologists dont know any more than psychiatrists about core issues and both often misdiagnose and treat wrong. Until there are actual blood tests, psychiatry is a matter of opinion in many between-the-cracks people. As a mental health patient for forty years, i have seen my share. Some worked for me and some were less than useless. And I learned the difference. For me.

    ADHD and autism are not mental illnesseses. They are neurological differences.
     
  6. JRC

    JRC Active Member

    I just want to add that medication's intended use is not to mask problems. As someone who has taken Zoloft for depression for well over 20 years, I think of my medication as an necessary aide much like insulin.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Same with me, JRC. In fact, my antidepressant is like insulin to me...needed. It makes me feel normal, not changed.

    But kids are often overmedicated and wrongly diagnosed and dont know how to explain "it isnt helping... it makes me worse." Some of the medications I tried made me worse. As an adult I could explain this to my doctor. And I can refuse to take, say, four different medications. Kids are at the doctors mercy.
     
  8. JRC

    JRC Active Member

    Absolutely true.
     
  9. mom22

    mom22 New Member

    Thank you for the input! I'm going to try to get the doctors to talk with me again today. My experience thus far is that it is like pulling teeth to get any updates or insight into their "plan". The Social worker said yesterday that they thought they'd keep him through the weekend which I don't get at all. He will have been there 7 days as of now and any reports I get say he is doing fine with no aggression or big problems. Why keep observing him if they are making no more changes to medicine? There measure of him doing well though was that "he was sat and was focused for the whole 2 hour movie". No kidding. He would do that medicated or unmedicated...always mesmerized by tv.
     
  10. Coffee Lover

    Coffee Lover New Member

    I can completely see where you're coming from with the medications. We're still pretty early into things, but that has been one of my biggest fears all along and why we started with the medications. I don't want to mute who he is OR bring out new problems by having the wrong medications or multiple ones interacting weird. Its so hard!!!

    I think you made a good call just getting him off everything and then observing and going on from there. I don't think that an re-evaluation is a bad idea and hopefully the team will listen and give some good input. I would be curious why he's still being observed too. Hope you get answers.
     
  11. mom22

    mom22 New Member

    I wanted to post an update and a cautionary tale. When I met with the Dr regarding the expected length of stay in hospital. he said they could keep him in the hospital to continue monitoring him but that there observations were generally good and it would be okay to take him home. They noted that he was hyperactive and impulsive before ADHD medications (Daytrana patch 30mg) but improved once the stimulant kicked in and no real meltdowns or other mood problems. He was taken off Abilify (was on 15 mg) and Risperdal (.5mg) completely. This was done over the course of one week. He was discharged on Saturday.

    Right away I noticed an increase in hyperactivity and other issues: nonstop talking, incessantly throwing ball up and down, and getting in others space, crying during dinner because of something that had made him sad earlier in the day, meltdown and refusal to brush teeth because floor in the bathroom was wet.... Over the course of this week he started exhibiting weird jerky movements, walking in a strange way, hunching over, nonstop movement, motor tics and worst of all - loss of speech fluency. He speaks in a staccato rhythm and struggles to get a compete thought/sentence out. His appetite is gone and he is still up 3 hours after going to bed. Even his thinking seems to have regressed and he makes statements that are more in line with 4 year old.

    We went back to psychiatrist today and he has determined that son is experiencing dyskensia tardive due to being weaned from medications so quickly. Now he is back on 2mg of abilify to "help give him some relief" according to DR. I feel like this is such a mess and I don't know if this is a good solution. It is hard to watch him in his current state though.
     
  12. pigless in VA

    pigless in VA Well-Known Member

    :grrr: These doctors make me furious! They don't take these medications which mess with your brain chemistry, so they don't know how it feels starting them and quitting them.

    Maybe it is simply because I am so extremely sensitive to medication myself, but I always wean off medications twice or three times as slowly as the doctor recommends.

    How is he on the 2 mg of abilify? Do you think that is enough to give him relief from all these nasty symptoms? All of this could have been avoided if they had slowly reduced the amount he took over the course of a month instead of trying to hurry the poor boy along.
     
  13. susiestar

    susiestar Roll With It

    I have always made it a habit to challenge doctors when they want to wean me off of a medication or start me on a medication. I want to start more slowly and wean off more slowly. Just recently I had a doctor wean me off of a medication I had been on for at least six years and she thought she could take me off of it in under a month. I ended up changing doctors. The change was needed for other reasons, but my new doctor thinks that I was headed toward serious complications with the rapid change in medications. I had heart problems from the rapid decrease in medications. It was the 2nd time she caused serious problems from rapidly stopping a medication and had zero clue that this could happen. It is a WIDELY known, and warned about, complication from stopping the medication too rapidly, but this doctor, who specialized in this class of medications, supposedly had no idea it could happen. The first time it was a seizure medication that also is used to manage nerve pain. She stopped it completely without weaning me off of it after having me take it for over 2 years. I had seizures and ended in the hospital with major complications. It was horrible.

    There is NOTHING wrong with researching your medications online and asking the doctor to start them slower than he wants to. Or to increase them slower than he wants to. Or to stop them slower than he watns to. If he disagrees, ask him why. If he won't discuss it with you, then he isn't the doctor for you, and it is time to start looking for a doctor that will respect you and your son.

    Now that your son has had TD, it is time to be very careful with the atypical antipsychotic medications. Those movements can become permanent. You need to carefully research TD and see what it is and how it can be treated and what can be done about it. I would be very careful in the future.
     
  14. Wiped Out

    Wiped Out Well-Known Member Staff Member

    My son was hospitalized several times over a five or six year period. Fortunately, there was always good communications with the doctors, nurses, and my husband and me.

    The Tardive Dyskensia is scary. My son developed it from Abilify. Luckily I caught it right away so he was only on the medication for three days and taken off of it. For him it wasn't permanent and hopefully it won't be for you son either.

    It took us years of trialing different medications before we found one that really helped. Since then he continues to do well. Will always be a difficult child but nothing like before-no more violence!
     
  15. mom22

    mom22 New Member

    Yes, it is scary! Has anyone seen any mental regression related to the withdrawal from Abilify? I don't know if it just another iteration of my son being difficult but he is for lack of any better way to describe it - acting like a baby. Grunting and pointing and shaking his head when he doesn't want to do something, giggling in high pitched girlish way... just kind of like you would see a two year old do.
     
  16. mom22

    mom22 New Member

    And the rage is so quick and fierce. I am having a really difficult time managing :(
     
  17. JRC

    JRC Active Member

    I'm not a doctor so take my thoughts here with a grain of salt. He sounds manic. Has your doctor investigated bipolar disorder?
     
  18. mom22

    mom22 New Member

    No, he has not specifically checked for that. It has come up in conversation in a general sense when discussing classes of medications. The Dr. usually says something like "and that medication is common for bipolor, I'm not saying that he is biplor..."
     
  19. JRC

    JRC Active Member

    Yes, risperadol and abilify are common for bipolar disorder. My son takes both of them, along with lamictal. So, they are saying that he has a mood disorder, just not what that mood disorder is. I don't know where you live but I would look locially for a well known clinic that treats children with mood disorders to get a clearer diagnosis for your son. NAMI is a great place to start to look for references. If you want to private message me, I can give you some names in the New England area if you are in this part of the country.
     
  20. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Be careful though about accepting a hard and fast diagnosis at age 9. My son was diagnosed bipolar when it was trendy to do so. There is controversey now as to if bipolar can be diagnosed in a child so mood disorders are usually called mood disorder not otherwise specified.

    My son was wrongly diagnosed and put on heavy antipsychotics like Risperdal and he had a bad reaction to it. At 11 we didnt believe the diagnosis anymore and had my son evaluated by a neuro psychplogist and diagnosed with high functioning autism. He was weaned off the lithium and seroquel and pit into autism interventions. Things have been great since. He is medication free and at almost 24 living in his own place on his own dime. He gets a little social security and works two part time jobs and everyone loves him. Clearly he is not bipolar. He isnt evem moody. The medications made him moody.

    I would get a neuro psychiatric opinion. They test in much more depth and look for everything, not just particular disorders. You can find them in childrens and university hospitals.

    I am not happy that my son spent three years on such potent medications that he did not need. I am a big believer in second amd third opinions and questioning all medications given to our kids, including the highly abused drugs for ADHD.

    Take care and research, research, research. Psychiatry is an inexact science. We need to be watchdogs for our kids.