Tardive Dyskinesia in young child after stopping Invega

[korvinanna]

My son has this after stopping Invega. How long will this last? The doctors say it is withdrawal, but it has been a week and he is getting worse, not better.

[TheeBonnis]

@korvinanna It can last for MONTHS!!! I would not accept a "wait and see" approach. Chances are, your son was taken off the Invega too quickly... as contrary as this may sound, ***IF*** what is happening with your son is withdrawal dyskinesia, the BEST thing to do is for the doctor (and only the doctor) to put him on a VERY low dose of Invega then reduce it very, very slowly. Please consult your doctor before making any changes--and always know that you can request a second opinion!

[dulCISSIMA1]

is she going to be ok???

[TheeBonnis]

@dulCISSIMA1 Yes, she has recovered and the movements are hardly noticeable at all. But I leave these videos up for other parents, patients, professors, pharmacists, nursing students, etc as a learning tool.

[dulCISSIMA1]

@TheeBonnis oh i am so glad to hear it!!!i hope she will be very healthy and happy in her life!!!

[TheeBonnis]

@dulCISSIMA1 Thank you, your words are very kind & appreciated. Blessings.

[Vulcanicer]

your daughter is so nice and its sad to see. I have schizophrenia myself and they gave me a injection with what I think was risperdal consta and I got acute dystonia because of overdose or allergy to the medicine. I could not talk, eat, walk or let my body relax for several days. My body was like a bow and it was hell on earth until they gave me some medicine that fixed everything. I still have schizophrenia and I use Seroquel, but I don't have any symptoms now and I am enjoying life.

[Sammygirl1231]

Is she schizophrenic?

[philycheesesteak127]

This is breaking my heart. Isn't there anyway you can get a claim for this? I know mass people are suing the company who makes Seroquel for this same side effect 

[petite1806]

I hope your daughter is getting better. Recovery from TD takes a very long time, but there's hope. My husband developed TD within 2 days after stopping Reglan (medicine against nausea). He had the same symptoms. He was described Propranolol (beta-blocker) which helped him to control the movements. After about 12months symptoms were gone and the beta-blocker was not needed anymore. To recover he also took a very doses of Alpha Lipoic Acid every day. We belief that this has helped his recovery.

[nehozack]

Thank you for posting your heartbreaking and educational videos - my sympathy to you and your lovely daughter, as well as my true hope that these awful symptoms will resolve themselves. Medicating children with psychiatric drugs should always considered carefully and knowing potentially permanent and life-changing side-effects are critical, but are often not emphasized enough by those who prescribe.

[Sniggles0]

I'm truly so sorry that this child has this illness. It's so painful to see :(

[coolshit28]

Is she better now 'cause this is scary. I'm on an anti-pyschotic and have a good friend who is too. I've heard of Tardive Dyskinesia getting during taking the med but no after. Again hope she's better. Bless. :-)

[Elliissse]

Also a nursing student... Thanks for posting. I am so sorry that she went through this. That must be hard as a parent to watch your child go through something like that.

[chocolatecity1974]

I'm 36 and I just started having some involuntary movements in my neck and head. I will not complain not a second more after watching this. I hope your daughter gets better and can overcome this disease. She is beautiful.

[petite1806]

@chocolatecity1974 Please talk to your doctor about this. TD is very scary and can get really bad (my husband had it for about year) and it can take many many months, even years to go way. Prevention is everything.

[2011JuicyCouture]

Is your daughter schizophrenic??

[ashleingh]

Very enlightening video. Thankyou. Nursing Student

[Kristyfio]

Don't listen to the negative comments you are just trying to help your daughter like any good parent would.

[Italianzebe]

I don't believe that is Tardive Dyskinesia - darting or writhing movements of the face and head. Based on the history of your daughter with the self-injuring behavior it sounds kind of like Lesch-Nyhan syndrome. These movements look like choreoathetosis associated with that disorder. Often tardive dyskinesia starts while on antipsychotics not after stopping them. I am sorry this has happened however, whatever the cause.

[returnoftheramble]

@Italianzebe I actually did something similiar when I stopped taking a combo of tegretol and abilify. My legs started swimming in my bed.

[M1thotyn]

@Italianzebe It's TD. Dyskinesia simply refers to involuntary movements, when pamphlets and doctors talk about the jaw and tongue movements, that's just an example. And tardive is basically another word for belated. It's very common for TD to appear after a neuroleptic drug is discontinued, even many years after. My mom got hers a whole 14 years after she was on haldol.

[M1thotyn]

@Italianzebe Dyskinesia is the involuntary movement, tardive means that it has a belated onset. TD affects every part of the body, even ones that aren't moving, because it's caused by a global dysfunction of the entire nervous system due to an enlargement of the basal ganglia (which is permanent, even if movements decrease or stop, the structural damage remains and can be seen even decades later at autopsy). I don't like how so many people think that it just affects the tongue and jaw.

[Zeanu]

Oh geez, I'm sorry... =/

[etiennedauphin]

Hi. I am studying to become a pharmacist (2 years to go). I was looking for a video depicting tardive dyskinesia so as to better understand what they teach us. It was a chilling surprise to find a video of a 5 year-old suffering from this condition. They often tell us never to forget that behind each "patient" there is a human being and a family. I am sorry that this had to happen to your beautiful child. I will remember her and maybe one day I will help prevent another such sad outcome.

[Ms3boysmommy]

I am so sorry about your little girl. My 3 year old has been on Risperdal for a year. He too has self injuring behaviors. His diagnosis is Asperger's with OCD and Bipolar tendencies. He recently built up a tolerance so the doc tripled his dosage. I always look for ANY involuntary movement but when meds were increased two months ago his speech has become very slurred. Did you ever see this with your daughter? I live in constant concern about T.D. and I can't imagine what you are going through.

[Fireflyes101]

I'm so sorry about your daughter. My daughter too had tardive dyskinesia from taking Reglan starting when she was 6 months old. I was just wondering with your daughter, has it gotten any better with time. I'm just trying 2 find answers 4 my daughter. Also I would like to say I appreciate u posting this video 2 help others like yourself know that we are not alone & there are others how there that know how we feel. These are our children and it hurts us to see them go through what they go through.

[TheBahaiGirl]

I too got tardive dyskinesia after stopping invega. I'm sorry she has to struggle with it too.

[DarkNowInDachau]

Wow, that's so unfortunate! I noticed you mentioned chlorpromazine in the video info. It's likely that's what sparked TD in your child given that typical antipsychotics have a higher risk of TD than atypical antipsychotics, although they can be more effective in most instances. It's so sad this sweet little girl has been afflicted. I certainly hope the condition isn't permenant. It's not always chronic, hang on to your hope!

[mom0102020507]

She's beautiful! I'm so sorry this happened, it's sucky and not fair!!

[akkleinhenz]

You are doing a great thing. Please dont let any careless comments bother you. So many people dont understand brain disorders and yes, they are frightening but many forget to keep their ignorance to themselves, although getting informed about these illnesses can be difficult as they are not often accepted or talked about. I appreciate your work.

[akkleinhenz]

I am so sorry that this beautiful little girl has this struggle and has needed these meds. She is fortunate to have a loving parent who is there for her. Thank you for sharing this video.

[TheeBonnis]

@akkleinhenz - Thank you very much for your supportive and non-judgmental comments. I post this video to raise awareness about the risks of Tardive Dyskinesia, hoping it will help prevent it in other children and adults--or at least they will have TRUE "Informed Consent" when they agree to take or give their children antipsychotic medications.

[Weegee423]

@TheeBonnis This also happens if you take a medication called Reglan