I am terrified!

[kim]

CKJ,

 

Is your daughter currently taking any medications for TS/OCD?

[CKJ]

CKJ,

 

Is your daughter currently taking any medications for TS/OCD?

 

She started Tenex two weeks ago for the TS symptoms. Started with a very low dose - 1/4 mg a day - so she will probably bumped up at some point. Its hard to tell if it is working or not....

[kim]

CKJ,

 

In reference to this remark....."there is a person just like me, it looks just like me and is as tall as me but its not me and it tells me what to do".

 

Could I ask if your daughter made this remark prior to starting tenex, or after?

[dan]

I just Googled "guanfacine" (Tenex) together with "hallucinations" and saw a whole bunch of studies that suggest guanfacine causes auditory and visual hallucinations!

[kim]

Dan,

 

It's too bad parent's/patients aren't warned of this as a possible side effect, isn't it?

 

The hallucinations could be a comorbid condition of TS, and there are similiar posts here where medications were clearly not involved. However, I suspect this may be a more common side effect with medications, than what's reported too.

 

As a parent, I would certainly want to rule out the med being the cause.

 

Can you imagine the anxiety this could create in a child? Then, you tell the Dr. that the child is worse, and many times they UP the dose. Just something for anyone using medications to be aware of.

 

There is a young man who has become very dear to me. He was experiencing scenes of visual rage,(totally unlike him and he was feeling terrible about it) right after a new medication was introduced. At the time, I had no idea what could have been happening. Then I read an article relating to this.

 

It appeared to pass, probably as his system adjusted, but if his dosage were to have been increased during that time, it may have escalated. That is a scarey thought, and something I would want to be AWARE of, as a possibility, if I chose to try a med with one of the boys.

[Claire]

I have not read this thread at all until tonight.

 

I had read a lot about OCD when my son got fears during 2 bouts of strep. I just wanted to emphasize and reaffirm what 2 posters hear have said: "Voices" can be an OCD symptom. (This is aside from the drug-related affects that Kim discussed). We all know that OCD-tendencies are often co-morbid with tic syndromes. Not that OCD tendencies aren't something to be addressed (and also commonly associated with immune issues), but certainly it is less frightening for most of us to think about. I also think that Giselle's child is a good example of how a child hearing 'voices' then later saying it wasn't really voices demonstrates how communication is so difficult for what is going on, which others have also pointed out.

 

Also, I read it is extremely rare for schizophrenia to manifest itself until the teens. Even so, the Pfeiffer clinic did a number of studies on schizophrenia, and found many immune system disorders associated with it, that when corrected, corrected the schizophrenia. The immune disorders highly overlapped with the ones we are finding here. I remember reading that it was important to correct and catch the immune disorders early to have recovery.

 

Sorry that I don't have the links to what I read, but anyone can google for voices and OCD, I am sure.

 

Claire

[CKJ]

CKJ,

 

In reference to this remark....."there is a person just like me, it looks just like me and is as tall as me but its not me and it tells me what to do".

 

Could I ask if your daughter made this remark prior to starting tenex, or after?

 

 

This was before the tenex was introduced - and I do think it is OCD-related after talking to her a lot about it at the time she told me this. She has had very bad "rage attacks" which started with PANDAS and have progressed from kicking, hitting and throwing things to now verbal "assults". "I hate you" "Your a stupid-head" (she's 6 so this is bad language for her). We were talking about these rages when she told me the comment about the person just like her that tells her what to do. She has also told me on several occasions that "I am a bad person". This is very consistant with "Bad Thoughts" OCD. I think its all OCD stuff.

[Chemar]

CJK

 

I agree with you re the OCD component in what your daughter is experiencing, although I do know that when my son was on Luvox for the OCD, his phobias and "hearing voices" and "my mind told me to do it" etc etc became worse. Granted, he was on a mix of Luvox and Haldol...........which we now know was responsible for a period of psychosis. Once he came off the meds, his OCD became a very different thing, with no phobic or psychotic issues, and once he started the supplements for OCD, it faded into negligible

 

When his Crohn's disease flared up, he was given a very mild medication for that,(cimetidene) but he began to experience pre-sleep hallucinationatory sensations. When we stopped the med.....the "hallucinations" stopped immediately.....altho we also did up his serotonin boosting supps as well to help with this

 

so I do feel that certain chemicals in meds do seem to intensify these things in some people, but that the underlying OCD/low serotonin is, for my son anyway, the root

[dan]

Chemar,

What supplements did you find helped your son's OCD?

[Chemar]

Hi Dan

 

Inositol is excellent and very safe, being a B vitamin

 

5HTP (50mg/day) with 100mg added VitB6 has proven to be the most beneficial for my son

he currently takes both Inositol (500mg each morning) and 5HTP/B6 at night

 

In the past, when his OCD was very severe, he also benefitted from methionine (best form is samE)

and St John's Wort

these were added to the others, but under strict doctor supervision to avoid serotonin spiking, which is dangerous

 

Please note that these supps, especially 5HTP, should never be used with SSRI (anti-depressant) meds unless a physician is recommending this