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Sean: Evekeo Withdrawal - need help for my 11 y.o neice

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Sean

I've been going through AD withdrawals now for going on 3 years, and I've recently turned a corner and began noticing very noticeable improvements since last August. I'm soOoo thankful for that! I've told everyone that will listen how much of a nightmare this has been and how I wouldn't wish this on anyone. Well, now my 11 year old niece is going through a nightmare of her own.
 
She was taking Evekeo (a stimulant ADHD med) for about 3 years until the Dr. switched her over to a "non-habit" forming adhd med, and then back to a different stimulant adhd med and then stopped all together. They started switching up her meds around last July-August, and booM! She started exhibiting different symptoms of withdrawal. At the time, I had no idea that stimulant ADHD meds could cause withdrawals so we thought she was just going through pre-teen phases. But her behavior starting changing, and then she started having hallucinations and delusions. Hearing voices, seeing "shadow people...very scary stuff for an 11 year old. I know this is an antidepressant forum, but I was wondering if anyone here has experience with ADHD withdrawals, or if someone could point me to a message board similar to this one? 
 
She has started cutting herself and has had suicidal thoughts. I believe she is having delusions of incidences happening in the home that she has reported to the school counselor. So, now dfcs is involved and has required her to see a psychiatrist at "their" hospital. They are now prescribing her Risperdal and Trileptal. One is for treating bipolar disorder and the other is for seizures. Prior to stopping her ADHD medicine, she never exhibited signs of any mental health issues. Just ADHD. They recently tried a bipolar med for 2 weeks last month and took her off since it did not help. They have not officially diagnosed her as bipolar and she's never had a seizure, but the physicians assistant decided to prescribe and treat her anyway for these things. If they dont do what the Dr. tells them, dfcs steps in and will try to intervene and possibly remove her from her home. 
 
I know without a doubt this is adhd stimulant withdrawals, so it's easy to assume that it's just like SSRI withdrawals...but I am not educated enough on it. My sister (her mom) has been grasping at straws trying to figure out what's going on, and in my gut I had a feeling what it was. I came across something with a little more information on it (the above link), and I believe I finally have her convinced that her daughter isn't sick...she's just going through pretty much exactly what I've been going through, minus the hallucinations and delusions. 
 
Sorry that was long! Any ideas on where to go from here? Is this also a wait and heal type of thing? I told her they need to take her off those new meds immediately, but it's a sticky situation. We all feel completely helpless. I absolutely feel that I HAVE to speak for her on her behalf and protect her from the white coats before they make things worse. They are already trying to treat symptoms instead of doing their due diligence and ask the right questions. It's all right under their noses, I just cant believe they are this naive about withdrawals. 
 
Thanks in advance for any help!

Edited by scallywag
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KarenB

Hello Sean,

 

Before we get into anything detailed, I'm wondering if you are wanting help for withdrawing from your own drugs?  If so, then leave your info in your signature.  If not, then it might be better to replace your details with those of your niece.  It's just that we use the sig. for info whenever we work with a person.

 

If you are both wishing to taper drugs, it may be best to have two separate intro threads, one for each of you. 

 

Welcome to SA,

More info to follow,

Karen

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JanCarol

Hey Sean - welcome to SA!

 

As an alternate to Karen's suggestion - perhaps you might have different sections in your signature - especially if you want to come off your Celexa - one for your recent history (say, the last 2 lines), and one for your niece?

 

You are correct, stimulant withdrawals have similarities to antidepressant withdrawals.  Probably more similarities than differences.   It would be especially frightening to be a child going through these massive "cold switches" and drug changes.  (cold switch =  remove one drug, add another, with no cross-tapering).  And I cannot even begin to imagine the turmoil that would be the combination of rising puberty combined with drug withdrawal!  You, your family, and your niece - have my deepest sympathies.

 

When we have her drug doses, dates, etc., we can be more helpful, but here is some general information.  Even where it says "antidepressant" - the process is very similar for harm reduction from all psychoactive drugs.  Please include her information in your signature, especially including the "bipolar med" they tried with ill effect.  She is likely to have some bumps down the line from that, as well.

 

In general, the first thing to do is stop changes.  She is an adolescent, which is a very high risk population.  Among the risks are - extreme behaviours (as you have seen), and escalation into psychiatric diagnoses, like "bipolar" (even though you clearly cannot diagnose a drug symptom!).  

 

If she has been on the same dose for 1-3 months, it is clear that she needs to come off the drugs.

 

It will be important to have a number of support systems in place, including extra-familial support such as counseling, possibly with DBT (Dialectical Behaviour Therapy - one of the better ones for self injury behaviours), peer support.   See:  Before You Begin Taper - What you Should Know  Obviously, the young girl is a teen, so there will be many things which are out of her control.  

 

Is it possible for her to come here and post herself?

 

We recommend 10% of prior dose tapering per month.  Why taper by 10% of my dosage?

 

We recommend holding, if the symptoms of withdrawal are interfering with functioning.

 

We may suggest TINY reinstatements, if symptoms of withdrawal are unbearable:  About Reinstating and Stabilizing to Stop Withdrawal Symptoms

 

It may be that just getting her doses stable will help immensely.  It seems that she was pretty stable before the drug changes came into place.  There is a very real chance that she has kindled from the drugs and changing them:    Limbic Kindling - Hardwiring the Brain for Hypersensitivity

 

Here is an overview of the non-linear process we call "withdrawal."  Again - just because it says "antidepressant" - I think it very much applies to her case, as well.

 

Intro to Antidepressant Withdrawal Syndrome

 

Here is a 6 min video you can watch with her, that explains it very simply:

Healing from Antidepressants - Patterns of Recovery (by Toxic Antidepressants)

 

and a series of cartoons which talk about the symptoms, emotions, and behaviour that result from withdrawal symptoms:

Withdrawal Dialogues - cartoons to encourage you

 

When we get more information from you or her - we will be able to better specifically suggest some courses of action.

 

Also - how close are you to your niece?  Is this someone you see weekly?  Someone where you have a voice in her care and treatment?   Will you be able to make a case to her parents to help her?

 

It's important, because this is the crucial time where she could be scuffled off "in the system" - it's already begun, as they've been switching her drugs and trying "bipolar drugs" on her.  Intervention now, could mean that she has her young adult life.  There are many stories in here of people robbed of ages 15 - 40 by submitting to the system of "psychiatric care" (an oxymoron if I ever heard one).

 

Let us know as much as you can, and we'll help point you to information that might help.

 

ps trileptal, a seizure drug, is used for "mood stabilization" in "bipolar disorder." 

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JanCarol

Hey Sean - something for you to consider in your own journey.  

 

You have been through a few drug changes and cold switches yourself!

 

What if - it wasn't the original "illness" returning - but was, instead, withdrawal from the last drug you were on?

 

For your consideration:

Is It Relapse or Withdrawal?

 

I don't know your age, but these drugs were tested for 6 weeks - 6 months.  They were not tested in the human body for years - except in the population.  That's you and me and millions of others who are guinea pigs for the largest, undocumented human trial ever.  In my experience, the longer you take these drugs, the harder it is on your health.  You may have minor complaints, aches, pains, acid reflux, insomnia - that may just be symptoms of the Celexa.  You may write off your aches as "aging" or "stress" or some other thing - but what is not recognized in medical practice - is the long term cost these drugs have on our endocrine, nervous & digestive systems.

 

I would never tell someone to come off their drugs.  It's a personal decision - but it is a decision in which most people are not given the full picture, what is called, "informed consent."  I'm hoping that, as you research for your niece, you will become better informed about what Robert Whitaker calls an epidemic, in his highly recommended book, "Anatomy of an Epidemic."  That book has changed many many lives for the better, including mine.

 

Let us know what you choose, and we'll help as best we can.

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Sean

Thanks so much, Karen and Jan! :) 

 

I have my own personal introduction thread here on the forum that I posted a while back seeking help with my withdrawals. I'm currently trying to stabilize on celexa before I begin the process of tapering. I'm almost at that point, so I am definitely listening to my body, and my brain. I'm currently in the process of tapering topomax (25mg) so I will be updating my thread and asking questions there about that today. My psychiatrist said I can just stop taking it sense it's such a low dose, but I think I've learned my lesson on listening to doctors about tapering :)

 

My niece and I are pretty close, so once I saw what was happening beginning around last August, I've been watching and observing very closely. I started researching about ADHD meds and talking to my sister-in-law who has 3 kids who all have ADD/ADHD. She was the one that informed me of the stimulants vs. the non-habit forming options. Once she told me that, it immediately set off a red flag for me so that's when I started to really dig deeper. I've been talking with my sister on a regular basis of what I think is going on, but I just wasnt for sure...but now I'm absolutely positive of what it is and she's now on board. Like most people, she was misled by the doctors about this "medicine." My neice is definitely already in the system, but not b/c we want her there...dfcs (department of child services) has them in a bind. Now we have to take this info to the doctors and open their eyes to it so they can stop forcing all of these other meds on her.

 

Thank you soo much for all of the info! I'm going to show this to my sister so she can read through it all. I will let her create an account if she wants to so she can put my nieces history in the signature. If not, I'll put the history in my sig....thanks again!

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Altostrata

Hello, Sean.

 

It sounds like your niece was experiencing withdrawal symptoms from ADHD drug changes, and may still be suffering from this, plus other drug upsets. Adolescents become very confused and frightened by adverse effects from drugs -- so do adults -- this may be why she started behaving so oddly.

 

I fear the doctors may now believe your niece has bipolar disorder or possibly schizophrenia.  

 

Can you and her mom speak to her, find out more about what she feels is going on inside her head and body, and reassure her that she is experiencing a drug reaction, which will pass in time? This may relieve some of her fear and anxiety. She needs to know other people have had this too. Give her as much love and understanding that you can.

 

The situation with DFCS is sticky. Can you and her mom talk calmly with the psychiatrist about the possibility your niece was experiencing adverse effects from her ADHD drugs? Don't mention withdrawal syndrome, psychiatrists tend not to believe in it, but they do know that drugs can have adverse effects on adolescents AND THE DOCTOR IS LIABLE FOR THAT.

 

How long has she been taking Risperdal and Trileptal, and at what dosages? What effect do they have on her? 
 
(Sean's Intro thread is Sean: Lexapro Withdrawal - Reinstated... )

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Shep

Like most people, she was misled by the doctors about this "medicine." My neice is definitely already in the system, but not b/c we want her there...dfcs (department of child services) has them in a bind. Now we have to take this info to the doctors and open their eyes to it so they can stop forcing all of these other meds on her.

 

 

Hi, Sean.

 

This may be a shot in the dark, but there is a legal advocacy group that is working to keep children from being forced into this type of treatment.

 

This is the website:

 

Psych Rights - Law Project for Psychiatric Rights

 

There is some contact information on that page with a phone number and email address. Your case is different than the medicaid issues they deal with (for foster kids), but they may be able to give you more information about the rights your niece and her parents have against any sort of forced treatment. 

 

I hope this can be dealt with rationally, that the doctors won't confuse adverse reactions and withdrawal with a much more serious illness, and that she can be taken off the drugs safely.

 

But just in case, I thought this website might be a good place to start if you need to fight it through legal means. 

 

I really hope your niece is off these drugs and feeling better soon. 

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Sean

Hello, Sean.

 

It sounds like your niece was experiencing withdrawal symptoms from ADHD drug changes, and may still be suffering from this, plus other drug upsets. Adolescents become very confused and frightened by adverse effects from drugs -- so do adults -- this may be why she started behaving so oddly.

 

I fear the doctors may now believe your niece has bipolar disorder or possibly schizophrenia.  

 

Can you and her mom speak to her, find out more about what she feels is going on inside her head and body, and reassure her that she is experiencing a drug reaction, which will pass in time? This may relieve some of her fear and anxiety. She needs to know other people have had this too. Give her as much love and understanding that you can.

 

The situation with DFCS is sticky. Can you and her mom talk calmly with the psychiatrist about the possibility your niece was experiencing adverse effects from her ADHD drugs? Don't mention withdrawal syndrome, psychiatrists tend not to believe in it, but they do know that drugs can have adverse effects on adolescents AND THE DOCTOR IS LIABLE FOR THAT.

 

How long has she been taking Risperdal and Trileptal, and at what dosages? What effect do they have on her? 

 

(Sean's Intro thread is Sean: Lexapro Withdrawal - Reinstated... )

I believe the doctors think she has some form of bipolar disorder from what I've been told of the dr. visits and the treatment being offered. I've talked to my niece in depth a couple of different times and have told her what I've been going through for the past 3 years with my withdrawals and that I believe she could possible be dealing with the same thing. This was before I had done more research, the whole hallucenation/delusion thing was really throwing me off quite a bit sense that isnt typical for AD withdrawals. But once I discovered it is a symptom of ADHD withdrawal, I was 100% convinced. She is going to be staying with us (Me, my wife and mom) for a while so I'm going to spend a lot of time with her and help her through this. It really does suck that I've had to go through it, but if I had to go through it just so I could feel what it's like and live it just to help her...then so be it. My mom and neice are out of town, but as soon as they get back home I'm planning on explaining things to her more thoroughly. She's only 11 years old, but she is very mature for her age and so smart. She's handeled all of this so far better than I would have at 11 years old. 

 

I would like to go with her to her psychiatrist appt, but if not...I will definitely let my sister and mom know of the "adverse effects" approach. I know first hand psychiatrists dont like the word "withdrawal." The look I get any time I say it to my psych is literally like I have a booger on my face or something.  :)

 

I'm not sure on the dosage, but she has been taking the Risperdal and Trileptal going on 2.5 weeks. I've expressed concern over this to my sister and mom and asked them what we can do to get her off those immediately, but with DFCS and the Psych paired at the hip, it's a bit tricky. The DFCS case worker has expressed that she doesn't intend on removing her from her home, but I dont know if this includes if we dont follow Dr. orders on those meds. It's really stressful stuff... I just try to keep my focus on her and helping her through that very "dark" place when withdrawals are the worst. I'm past that very dark place, it just really hurts me, and all of us, to see her there when she's always been a happy and bubbly little girl.

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Sean

 

Like most people, she was misled by the doctors about this "medicine." My neice is definitely already in the system, but not b/c we want her there...dfcs (department of child services) has them in a bind. Now we have to take this info to the doctors and open their eyes to it so they can stop forcing all of these other meds on her.

 

 

Hi, Sean.

 

This may be a shot in the dark, but there is a legal advocacy group that is working to keep children from being forced into this type of treatment.

 

This is the website:

 

Psych Rights - Law Project for Psychiatric Rights

 

There is some contact information on that page with a phone number and email address. Your case is different than the medicaid issues they deal with (for foster kids), but they may be able to give you more information about the rights your niece and her parents have against any sort of forced treatment. 

 

I hope this can be dealt with rationally, that the doctors won't confuse adverse reactions and withdrawal with a much more serious illness, and that she can be taken off the drugs safely.

 

But just in case, I thought this website might be a good place to start if you need to fight it through legal means. 

 

I really hope your niece is off these drugs and feeling better soon. 

 

 

Thank you! I'l definitely check in to it and forward it on to my sister. When I was told that she "has" to take these medications, it just didnt seem right considering she's not under their sole care...even if DFCS is involved. Thank you!  :)

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Shep

Hi, Sean.

 

Just wanted to touch base and see if the Psych Rights organization was any help.

 

How is your niece doing now? I hope she's getting the right treatment and feeling better. 

 

And that you're seeing some healing, too. 

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Sean

Hey Shep :) After her last appointment with the psychiatrist a little over a week ago, my sister and mom have moved on from that dr. after he was not hearing them out on our concerns. He was wanting to prescribe another anti-depressant (I believe zoloft.) My niece is currently staying with us while she heals, so I think that will keep dfcs from trying to do anything at this point. 

 

But she is now, thankfully, being tapered off both of those meds (Risperdal and Trileptal.) Risperdal was only a .5mg dosage that she didnt even take a full month, so we felt it was okay to stop that one completely. If yall think she should be tapered off that one as well though, please let me know! And the Trileptal, she's being tapered over the next few weeks. I cant remember what her dosage is on that.

 

She's had a couple of "melt downs" since she has been with us this week where she gets very angry and crying. The one thing that concerns me is how prone she is to get violent. I talked to her briefly about putting her hands on people, but I'm going to talk to her more in depth one on one. For some reason, she tends to listen to me when I talk to her one on one as opposed to having me and my mom talk to her. I guess she feels like she's being ganged up on. I've noticed that she has a tendency to take toys away from our toddler and things that bring him enjoyment. Then the next moment she'll want him to come to her for a hug or to play with her. I can see how dr's, or anyone else, would see this as bipolar symptoms or tendencies...but she was never like this before last August when they started switching around her ADHD meds. I think she has a lot of anger and irritability that she doesnt know how to control or channel due to the withdrawals. She's only 11 years old, so she hasnt learned that self control that most adults have learned when dealing with anger. I've noticed this is one of the biggest differences between ADHD withdrawal and AD withdrawal. When I was at my worst, my depression and anxiety got the best of me. I was very sad all of the time...never really angry, just so sad. With the ADHD withdrawal, I do see the depression and anxiety, but the anger and irritability is more noticeable. She also has noise sensitivities, like I had with AD withdrawals, so toddler cries and just loudness really gets to her. I've been really careful and sensitive with how I speak to her and what I say, but I had to get on to her yesterday for being hateful towards our toddler. The 2 things that just cant happen are putting her hands on people and the hatefulness directed towards a 2 year old. I didnt want to get on to her, but I honestly felt that I had to set a boundary while she heals. I told her that with the meltdowns and all of the crazy emotions she's feeling that I understand and get it, I've been there...but those things I mentioned just cant happen. I asked her if I bought her a punching bag if she'd use it. But I thought about that for moment afterwards and I'm not sure if I'm giving her something to release the anger, or encouraging the anger...or both. I definitely dont want to encourage it at all. She enjoys drawing, so I bought her a sketchbook and some pens so she can draw and write. We take her to the park with us and I go outside with her just go get her out...but I'm trying to find more stuff to help her heal through all of this.

 

Sorry, started rambling a little...but just noticed these things this past week with her being with us. Thanks for checking on us! :)

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