tourette syndrome

[Guest Guest_jeanchan]

Hi Chemar

 

I came across previous postings by regarding TS tics and the horrible side effects when your son was on haldol years ago..am wondering if you could still remember at that time, what was the dosage of haldol that caused those horrid side effects?

 

my son is currently on 2mg a day and i am hoping that with the supplements he is taking concurrently now, the haldol dose can be kept to a minimum till we visit the naturopathic next weekend.

 

thanks and best regards

jc

[Chemar]

jc

 

my son never went above 1mg of haldol .

 

It made him psychotic, fat, very sluggish and devoid of his usual upbeat personality, depressed, tardive dyskinesia like movements and drooling as well as development of breast tissue.

No doctor ever warned us that Haldol stimulates prolactin, never mind the rest of the nasty side effects.

It also hurt his liver.

He was unable to function in a regular classroom environment and his grades went down.

 

The Haldol induced psychosis landed my son in hospital, and it was only by my fighting tooth and nail and with the help of a very special physician, that I prevented them from admitting this bright, compassionate boy to the psych ward for "disturbed" children.

 

Once the Haldol was removed, his behaviour and personality immediately returned to this bright and cheerful nature, and the continuous depressions and phobias lifted.

 

I personally feel haldol should be banned, especially with the newer drugs available. it is a dangerous and archaic drug that does far more harm than good.

 

 

I am sorry to be so emphatic, but i believe Haldol to be a very dangerous drug.

We are not the only people who have seen devastating side effects from it.

 

If you do take your child off it jc, it MUST be done very slowly and under doctors supervision, as serious withdrawal problems can occur.

[Claire]

Oh Chemar,

 

I never knew that anyone considered putting your son into a ward for disturbed children. It makes me feel so very sad. One of those: "There but for the grace of God..." kind of feelings.

 

I know that you were attuned enough to see what was happening, and passionate enough to make things right, but I think of all the other mothers whose children had such a reaction, who don't have a clue that it is a side effect of a drug, versus just thinking that their child's mental health is deteriorating. How many are there? We know they are there, that is frightening and sad to me.

 

Now at least jc will know if her son has similar reactions to know that it is the drugs! Thanks for sharing this. I almost feel like we should have a thread titled: bad side effects of haldol, etc... so that parents of children on medicines who are seeing complications and whose doctors assure them it isn't the medicine can be informed.

 

Claire

[Guest Guest_jeanchan]

now at least i know what to expect and handle this better. my son's neurologist did not tell us all these, even the weight gain thing that i learnt from websearch, i had to confirm with him then he said yeah, thats the side effects.

 

Its no use discussing with the doc, i did and he asked him do i want my son to tic or continue the medication? He said my son looks and seem fine with the med. And if i see another neurologist, guess my son will still be given another drug.

 

my son was just telling me yesterday morning before going to school that he has breast and i was jovially telling him that he was just lacking of enough excercise and he should keep to a healthy diet too. i had no ideal that it was the drug!

 

all along i thought 2mg is low. i am wrong but you're right, i have to bring this drug down gradually. (i had already brought down the drug from 3mg to 2mg a day without informing his neurologist). looks like i will hv to maintain this dose till we see this new naturopathic next week, do the test and progress from there. I heard the lab test (hair analysis) will take about three weeks to know the results - so long!?!

 

thanks, Chemar for sharing.

[Claire]

JC,

 

How old is your son again? Most of us here feel that we have time to investigate alternative methods of healing before/instead of doing medicines. Was there some urgency to stop the ticcing, e.g. was he hurting himself, was he interfering with his life, was he getting badly teased? When my son was 8 and ticced, not one child ever commented. We eliminated the tics before it ever mattered socially to him.

 

I do understand that for an older child, they might push you to help them eliminate tics for different reasons, but if they don't mind the tics and they aren't interfering, I think it is actually easier to find out what works if they are not on medicine.

 

I am just trying to understand your situation, not criticize in any way--your pediatricians questions surprised me, which is why I asked. I thought in the US that they often didn't medicate unless the tics caused problems, perhaps it is different in Singapore.

 

Claire

[Guest Guest_jeanchan]

Yes Claire, the first time it happened was really a shock! My son's head was turning left right very severely (and i mean really fast) for several seconds at a interval of few minutes. Everytime it happened, my son's face and ears turned red with exhaustion grasping for breath. We (me and my husband) were so afraid that he would hurt his neck, there was no way he could do anything, let alone attend school.

 

We were emotional, as we had no ideal what was happening to our child? We could see that what our son was doing was no way just a habit - he just simply cannot stop his head from turning. Even till now, whenever this terrible thought came to me, I honestly dare not pull him out of the drug totally - no, not yet. I just couldnt bear to see my son suffer from that head turning tic again.

 

Which is now why I am experimenting with vitamin n mineral supplements along with the drug. I had no choice. I practically spent all my lunch hours in the office web searching for answers to alternate healing - naturally. But I have to admit that I am not very knowledgable on many medical terms.

 

Thankfully, even on this drug, (cross my fingers) till now, the side effects never really affect my son, he doesn't have the side effects that Chemar's son had experience (I am sorry Chemar).. His weight has so far been quite stable, I forgot to mention that he was all along a little on the obese side before he was dx TS and put on haldol. My son has good appetite and enjoy food.

 

So to put him on a health diet and stay away from sugar and caffinated drinks like pepsi and coca cola is something really hard for him. But we are trying to stay away from these stuff as practicable as possible.

 

Today his head turning is rare (I pray to God please dont let Jon tic again - or at least please not the head turning tic)..

 

Today after dinner, I put him on another calcium supplement, you know the magnesium and calcium ration we were talking about previously? Well I have got those and started to put my son on this evening. As for the taurine, I have decided to stop for the time being.

 

Thanks Claire - you have been very supportive and that's what I, (and many other parents like me) really need. Thanks for being here.

 

And Chemar, I am so sorry to stir up those bad memories but your sharing definitely has benefitted me (and other parents concerned) so that we are more aware and know what's best and whats no good for our children. Sadly we have a support group in Singapore too for folks with TS, I have spoken to the organisor of this group but sadly it seems that all their kids are on drugs too. Seems that they have tried vitamins therapy but doesnt help so they are back on drugs.

 

Its late here, (oops its coming to 12am already).

 

Keep in touch.

[Chemar]

Hi jc

 

dont worry...you didnt stir up bad memories. I am involved daily in TS support and so these are things that are simply part of our experience and for which we are just so thankful to have had a positive outcome

 

It is honestly my belief that, from personal experience and from hearing from others, that when people say "vitamins dont work" it is either because they havent been complete in the supplements needed or they have other complications (eg PANDAs, yeast, mercury, bad diet, allergies , med interactions etc)

 

I really do encourage you to persevere and, if you decide to stay on the meds(hopefully something different from Haldol like say Abilify or Clonodine) but whatever you decide, just keep trying to maintain optimum health for your son in all ways possible.

And

MOST IMPORTANT

try not to draw too much attention to the tics as that really does make it worse.

Just let your child know continuously how you love him and how precious he is.

 

Things do usually get better as they get older (nomatter what the treatment) and the important thing is to make sure that there are minimal psycological scars from this period where things are tough.

 

It is so great to be able to have you with us from so far away jc. the Internet is such an amazing thing!

 

Hope you are having a good and peaceful night, and that the new day will bring you renewed hope and encouragement.

[Guest Guest_jeanchan]

Hi its jc again. Before I sign off, forgot to answer Claire's question. My son Jon, is 11 years this September but he is weighing about 56kg. Hence with his weight, i was told by doctors that he should be taking adult doses for supplements.

 

Jon was rushed to the hospital on emergency and when the neurologist saw him doing the head turning and eye rolling tic, he told us its TS and briefed us shortly what TS is, said I could get more info from the web. He was prescribed 1 mg Haldol while in hospital.

 

I sent all the info I could about TS to the school principal and teachers during Jon's hospitalisation, and they were very understanding and supportive. None of the school children teased my son. So I think the school has done a great job educating the kids about jon's condition. I heard from my son the whole school prayed for him. Thats nice.

 

Lately, jon has started vocal tics more. He will go say six-six-six-six, or repeat a single word few times. Can see that he is frustrated and ambarrassed each time he does it. I couldn't make myself tell jon in detail what the side effects of haldol are so as not to frighten him, but he kind of blame me for bringing down the drug dosage thats why the vocal tics.

 

I will continue to search answers for supplements for vocal tics. Do share if you have a clue.

 

Thanks for listening. Really must sign-off now.

 

jc

[Chemar]

jc

 

I think we were posting at the same time so do take a look at my last post above yours.

 

I am curious as to why Jon was rushed to hbospital with just head turning and eye rolling....those are pretty mild tics.......or did you think he was having a seizure?

 

 

The vocal tic you are describing is very common where words or sounds are repeated.

 

Acetyl-L- carnitine is a supplement that many find very effective for vocal tics, but you need to check with the doctor on whether it is ok for your son to take it with Haldol.

 

jc,

I do know people who have used Haldol and, although they have had some side effects, it hasnt bothered them and so they have continued to take it as it did help their tics some (I have never heard of TS tics totally disappearing with it tho, which holds true for majority of treatments)

 

I would strongly caution you NOT to talk to your son about the possible bad side effects of Haldol as it could frighten and stress him and that will make tics worse.

 

As with all things as a mother, you have to trust your own instinct to do what is best for your child.

 

I pray you will find the solutions you need.

blessings

[Claire]

jc,

 

I am so sorry that you had to go through this with your son! I realize that symptoms are very severe for some people, poor kid!

 

I know that you have read these boards a lot, and so you know that I agree with Chemar that mercury/yeast/allergies can disrupt his system and worsen tic tendencies.

 

I am sure that you know I like to recommend the 'no screens for a week' test to people with severe tics (it may not warrant the restriction if the tics are mild), but I am not sure if the Haldol would interfere with the 'test' or not.

 

You are right that Haldol may not have this impact on your child, and I am sure you will keep a close eye on it. Chemar mentioned tardive dyskinesia and I remember reading a study posted on Braintalk somewhere that 60% of people can end up with this condition permanently from prolonged use of the drugs commonly prescribed for tics. I know just enough here to be dangerous though, so clearly do your own research and ask your doctor.

 

If you do a Google search on this thread, you may find out the study. http://brain.hastypastry.net/forums/forumd...splay.php?f=253

 

I know at least one poster on Haldol said their doctor monitored for it. This is what I found:

 

http://brain.hastypastry.net/forums/showth...8341#post178341

 

Claire

[Guest Ronna]

Hi jc,

 

I have been away for most of the summer but your post caught my eye and I just wanted to reply really quick. Two years ago my son was started on various meds with the first being Orap which is alot like Haldol. My son's side effects from the Orap were very much the same as Chemar described with her son on Haldol except for the pychosis. My son was on a very small dose. In my experience the Orap did help alot initially with the tics but over time the dosage needed to be increased and my heart breaks to think of the time my son spent on this medication. When we finally stopped it my son immediately grew tons and lost lots of weight. While on this medication my son was a shell of himself. No doctor ever told me about all of the side effects my son experienced and unfortunatley I was not on-line at the time.

 

So I guess what I am saying is that after all I have learned about TS I think it is surprising to me that a doctor would prescribe Haldol as a first drug. There are other medications to start with that are worth trying such as clonidine which usually have less side effects.

 

I remember how overwhelming all of this is in the beginning. Take Care,

Ronna

[Guest jc]

Hi Ronna

 

I have noted and thank you for sharing. I would very much like to immediately lift my son off this drug too, but was told it is better done with the doc's advise. It is terrifying to know that how as low as 1 mg of haldol can do so much harm to a child.

 

I will be seeing a naturopathic soon (this saturday) and will be doing some testings there, hence hopefully we can trace something and kick off the drug asap.

 

jc

[Guest Ronna]

Hi jc,

 

It took over a month to discontinue my son's Orap and we were under the supervision of a doctor. I am sure you have been reading through all of the post's. In our situation a book which helped me tons was "Is this Your Child" by Doris Rapp. We did a food elimination diet and found that my son reacted to milk, eggs, corn and chocolate. At present my son can tolerate small amounts of eggs, corn and chocolate but milk is still a big problem for him. It seems that for each child the food triggers are different but so many do seem to have this as a trigger. This is something you can do on your own right now if your son is ok with the idea.

 

Best of luck in your search for answers. Ordering all of the back issues of Lattitudes is well worth it and there is a weath of information.

 

Take Care,

Ronna