I may have the answer to Liams main problem!!!!!! | Arthritis Information

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HI guys, well I am so excited and I cannot sit still, I am praying that I am right, I have my GP's permission to wean Liam off of Endep.

LIam has been suffering from facial tics, increasing gradually now to violent head movements that hurt him as they are so persistent.  The Drs have all said it is anxiety, not his epilepsy that is causing this but they aren't sure 100% of anything.  I know it is hard for them and they are doing their best but I could not let it go, I am so unhappy seeing him like this and the way he has changed from a happy, outgoing popular little boy with a smile and a word for everyone, to an underconfident, self-concious, quiet little boy who is oviously hurting mentally and physically.  His joints have the odd days but overall have improved dramatically, Thank God.  See, the power of prayer, I took him off of all the drugs with the RD's permission.

To cut it short, I was sitting thinking of what the hell it could be?  This awful involuntary head movement stuff, my hubby who is so frustrated and sorry for Liam has been affected physically and mentally healthwise watching his son become so ill.  He was trawling the net looking for answers and Gary was searching tics etc.  We found a condition called "tardive dyskinesia"  which can occur after people have been taking these types of drugs for a while, and it is involuntary movements mainly of the jaw, head and neck, that tend to happen as a major side effect to some people.

Liam started on 10mg, no problems, then 20mg and after a while developed tics and slight head movement s too. (eventually)  Then 30mg and now major head and jaw involvement, so I am not sure if Endep comers under "dopamine receptor blocking drug" which are the drugs that cause this condition, but after looking up "Endep" or "Amitryptiline" it states that a side effect is "uncontrolled muscle movements, eg. face, jaw, tongue, neck, arms legs etc etc.  So please God we have found an answer, I decreased the dose last night by 10mg, I know I can do this as I am on it too, and GP said today decrease it by another 10mg and then friday stop the drug.  I know it could be just coincidence but to me it is  a very likely culprit and my GP agrees.  Please keep us in your prayers, I would be celebrating forever if this is it.  Many thanks again to you all, your friend Janie.  Heres hoping!!!!! I am praying that this is the answer to all your prayers and Liam's very trying time.  Wouldn't that be a miracle.  The thought is mind boggling.

 
Cheers to you Janie for the very best outcome.
 
Pat
TeedOff2009-10-18 22:23:26Hi Janie
oh awful for Liam and it must be so hard to watch him go through this. I really hope it is the med causing the problems and that it stops once he is off of it.
Let us know how Liam goes, you are both in my thoughts
Take care
Lisa
It sounds like you are on to something. Best of luck. I know of course you will keep us posted as to how he is doing. Prayers for Liam and your family.
 
  Dear Janie I do hope this is the answer for Liam...you both have been in my prayers
 
 
Like all of the above, I hope this works......... Thankyou kind people, I appreciate your warm thoughts and prayers, Janie. I am so excited for you to have been able to find something that might help.  Praying this is the answer you have been hoping for.Best of luck that this is your answer! You & your family continues to be in my prayers.Tardive dyskinesia is rarely seen with tricyclic antidepressants.  Except for doxepin and amoxapine (two tricyclics with pharmacological action similar to the antipsychotics), the TCA's don't affect the dopamine system (the source of tardive dyskinesia).  TD is very distinctive; have you seen a video of someone with TD?  If not, see if you can dig around the web and find one, and see if your son's symptoms are similar.

I worked in three different homes for folks with developmental and mental disabilities, and I've seen lots of people with tardive dyskinesia.  Never seen a case caused by Elavil or the more common TCA's, or the SSRI's.  Antipsychotics (thorazine, mellaril, stelazine, haldol, etc) were always the culprit.

I'm not trying to discourage you - just trying to provide some info in case the med switch doesn't alleviate the problem. Hi, will be thinking of you!!! sending prayers and hugs x x Janie,
I hope you find the answers to Liam's medical problems.  I'm not sure that the current med Liam is on is the culprit.  Generally speaking, antidepressants don't cause TD, it is generally caused from Antipsychotics. 
Best of luck finding the anwers.
PhatsHi Guys thanks for all your replies, I am aware that Endep is not the same as a dopamine receptor blocking drug but it led me to investigate Endep and this is what I found.

Liam started on 10mg, no problems, then 20mg and after a while developed tics and slight head movement s too. (eventually)  Then 30mg and now major head and jaw involvement, so I am not sure if Endep comers under "dopamine receptor blocking drug" which are the drugs that cause this condition, but after looking up "Endep" or "Amitryptiline" it states that a side effect is "uncontrolled muscle movements, eg. face, jaw, tongue, neck, arms legs etc etc.

So I still am hoping and thanks again for all of your input and advice, Janie.
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