WitsEnd

New Member
I sat here typing out our story to share with y'all and I realized something.... It seems as if every time we changed/increased medication my son's behavior worsened. I understand the whole medication thing is trial and error, but we've had two psychiatric hospitalizations in less than a year for aggressive/self harm behaviors. My 9 year old son was diagnosed with ADHD and dysthymia (depressive mood disorder) a year ago. His behavior was not THAT bad we initially got a psychiatric evaluation because he was saying he hated himself and saying he wanted to die/kill himself. I assumed this was because he was having a tough time dealing with my and his Dad's divorce and his father being absent from his life. His pedi was the one who recommended the evaluation, I thought these issues could be resolved through counseling.

His self-harm threats/attempts were chalked up to being attention seeking behavior. Over the last 6 months my son has started having extreme meltdowns (hitting, kicking, biting, cursing) for no real reason on a regular basis. During some of his meltdowns we have to physically restrain him. We've decided to wean him off his current medication (10 mg Lexapro, 1 mg Tenex (and recently discontinued 1 mg risperidal) and see where that leaves us.

His counselor feels as though he has been misdiagnosed and feels like he could possible be bi polar or have a personality disorder. We started seeing a new psychiatrist and she mentioned aspergers, which isn't the first time that's been brough up.

This is all really new to me and I was just curious if anyone else has gone down the road of misdiagnosis and/or medication making things worse.
 
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InsaneCdn

Well-Known Member
just curious if anyone else has gone down the road of misdiagnosis and/or medication making things worse.
Hi, and welcome.

The short answer: yes, and yes.
Let's see... 12+ years of mis-diagnosis. In the process, we got several smaller diagnoses that were correct and part of the problem (Developmental Coordination Disorder (DCD), Auditory Processing Disorders (APD)), but not the key elements.
And medications. Well... let's just say that it will take a few years for the current psychiatrist to undo the mess created by the previous one.

Anything on the autism spectrum is ideally caught early, because things get better with intensive early intervention. But all you can do is start when you know what you are dealing with. Has he ever been evaluated by an Occupational Therapist (OT)? They test for sensory and motor skills issues. Sometimes, we don't recognize the sensory issues - some are over-sensitive to certain things, others are under-sensitive. Occupational Therapist (OT) has therapies that help, too. And Occupational Therapist (OT) stuff can be done in parallel with anything else - complementary, and accepted by the medical community. Sensory issues (and coordination challenges) are not unusual for people on the autism spectrum, but can exist as completely separate dxes.
 

HMBgal

Well-Known Member
Oh WitsEnd, we have been/are on this journey. I feel like the doctors are just throwing stuff at the "wall" (the "wall" being my grandson) trying to see what will stick: therapy groups, one-to-one therapy, medications, etc. My grandson has been medicated since he was 5, but we saw issues long before that. ADHD diagnosis, but there's more going on, for sure. What? No idea. I have bruises all over my arms from a meltdown he had yesterday in a parking lot because I asked nicely that he put the ball pump back in the trunk of my car (with the needle on it to blow up balls--I'm an adapted PE teacher) and he refused to do it, starting gouging my car with it (to add to all the other damage my poor car has suffered at his hands), poking it very near my face, and when I forcefully took it away from him, he started screaming at me, and hitting me as hard as could with his closed fists. And kicking, vile language, the works. I didn't feel like I could "contain" him because we were in a public place and I was afraid of someone calling the police on me. He tells anyone that will listen (his doctors, teachers) that his father is trying to kill him, so of course CPS is investigating. We all feel like we are all one phone call away from being arrested, I swear. We are beginning to think that we will have residential treatment in his future and it's a very hard thing to even think about. Or what the future will bring. Or what puberty will be like. Dear g_d. I actually feel like he is going to shorten my life and my husband's life from the stress. We see no end in sight. It's hard not to feel resentful. He is way too much for his mother to handle, who has to work full time, so hours and hours of caretaking fall to us.

There's a divorce in my grandson's life (six years ago), also, and his father is a very large, angry, anxious man, but he's trying his best, too. He has never been kept from my grandson's life except for the last two months, when CPS was called because of what was said in a therapy session, and the father said he didn't want my grandson around until the case was closed because he felt his son was jeopardizing his step kids and their new baby with the new wife. This kid has so many adults in his life trying to help, and he's burning through us, one by one, like a hot knife through butter.

So, I'm standing side by side with you, virtually speaking, and if we lean in our shoulders in, maybe we can give each other more strength that standing alone. Thank heavens for this group because how do you explain all of this to anyone with neurotypical kids?
 

WitsEnd

New Member
HMBgal - I want to jump for joy for finding someone who can understand what we are going through, but at the same time my heart breaks for you because I know all to well the road you and your family are on. I am also being investigated by Child Protective Services because my son has told people that he doesn't feel like his mom loves him and that I don't feed him (all untrue). The CPS investigator also told me the person who called in was worried that nobody was doing anything about his self harm statements. I told CPS what all I had done and asked if there was anything more they felt like I could do because at this point I feel like I am doing everything I possibly can. After the meltdown my son had at his counselor's office on Sunday she said that she felt that she could no longer see him because she cannot be effective in his current state. She has recommended residential treatment. I am not quite ready to go down that road, but if things don't get better soon I feel like I won't have a choice.

InsaneCdn - We haven't had any type of Occupational Therapist (OT) testing done at this point, but I will look into it. We are scheduled to have a complete neurological work-up done. I am hoping that can provide us with some answers.
 

HMBgal

Well-Known Member
Yeah, I'm ready to try and get my hands on some money somehow so I can get neuropsychologist testing done. School testing is a joke and is very limited in its' scope.
 

Confused

Well-Known Member
WitzEnd Im So sorry your going through this but Im still trying to get mine diagnosed properly! Yes, medications can make them worse and unfortunately trial and error and keep the therapy! He is going through the stress of the divorce and his father being less absent in his life, but dont give up! I know you wont! Adderall made my sons violence so much worse, Vyvanse has been the best so far but he refuses to take it so hes on Daytrana Patch and of course with the clonidine for sleep issues, adhd and violence. Big difference when hes not on, like today yikes! :twister2:I wish you the best, and we get it.

Insane, good point about the Occupational Therapist (OT) ! And you have been through the waiting games as well, its hard with simalr diagnoses around but one day soon I hope they can figure out how to tell for our kids and us!

HMBgal, Im so sorry and If I was there and saw that I would have helped you. Of course, not much we can do in those situations, its a wait game until the kids settle down on their own. Suggest to your grandsons father to have a 24hr camcorder or voice recorder when he finally gets to be around his son again, as you should do the same. I firmly believe in video of the episodes, of course it still doesnt tell exactly whats going on in their head. Your brave grandparents( I remember your other thread) and please worry about you as well! Are there any in home therapy services or day cares / home professional that could handle his issues?
 

InsaneCdn

Well-Known Member
If you can't get a neuropsychologist (we can't), try for a PhD-level psychologist with a specialty in comprehensive testing.
 

BusynMember

Well-Known Member
My son was given lots of heavy duty medication. He was misdiagnosed with bipolar. He is actually on the autism spectrum. Medication made him worse, more sleepy and spacy with side effects than wild, although he had a very early wrong diagnosis of ADHD and every stimulant made him worse and ended up in the toilet.

After his right diagnosis, done by a neuropsychologist, he was taken off all medication and is now 21 and calm as a clam. Never moody. Never angry. Polite. Everyone loves him. He still has trouble with certain things, but he lives by himself, works part time and is pretty self-sufficient. Any time I ask him how he feels, he says, "Happy."

This is after he started out crazy, hyper hyper hyperactive, tantrumming, breaking things and he didn't sleep for two years after we adopted him either so neither did we. He was two when we got him and what a different the right diagnosis, the right interventions, and no medication made. Not all behavior problems do better on antidepressants and I admit it annoys me that they are given out to kids so readily because antidepressants can make ANYONE worse. It's hit or miss. And don't even get me started on stimulants. If they don't help the child, I feel they should be discontinued right away. They are speed and if the c hild acts like he is on speed on speed then it isn't helping him. And it doesn't take long to find out. My son was crazy on both Adderall and Prozac.Adderall made him mean and aggressive, which he never was. prozac had him climbing off his desk at school and jumping over and over again saying he could fly. WEIRD! Scary. But not bipolar. The Prozac! We threw it in the toilet too with the stimulants and he was never like that again.

You have to observe your own child. I learned the hard way and also by being a mental health patient myself most of my adult life that psychiatry is not an exact science and you know when your child is acting negatively to a medication more than the doctor does bescause you live with the child. Use your mom gut. And don't give up. Take him to a neuropsychologist. No child is diagnosed with a personality disorder. Whoever told you that has no business trying to diagnose a childhood disorder.

Lots and lots of hugs and luck.
 

Wiped Out

Well-Known Member
Staff member
Such a difficult time. medications can make things worse but depending what is going on they can help. Know that you are supported whichever route you take. It isn't easy.

We were definitely on a medication merry-go-round with our son but for him there was no doubt they were needed. It took many years, six hospitalizations, and many different combos of medications until we found something that worked! While he is still extremely difficult the violence gone and he has progressed way beyond what we thought.

Sending supportive hugs your way.
 

Bunny

Active Member
Yes!! Medications can absolutely make the behaviors worse. Every time we put Difficult Child on one of the SSRI class of medications his aggression got much worse. We steer clear of those now.
 
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