How Long

[kfen]

My son was recently diagnosed with TS, prior we were told it was transient tics (when he was 6) he hasn't taken any medication up until now. about a month ago his tics got really bad and stayed that way, so we decided to take him to see a local neurolgist, who prescribed both Clonidine and Zoloft. He has been on this for 3 weeks, and I feel his tics are worse now. He tics from the minute he wakes up until he falls asleep. His tics go non stop all day and he is really hurting (muscles & emotion). I've heard of the "waxing and waning" but I would have never thought waxing could have lasted this long? I am seriously thinking about taking him to the emergency room to try and get him some rest? I know everyone is different, but can tics that are this intense last much longer?

[Guest]

Welcome kfen,

 

Sorry you son's having a rough time. I wanted to mention sometimes meds do cause the tics to increase atleast in my case. Maybe you should talk to the neuroloist about this if you think they've gotten worse since starting the medication. I also wanted to mention that if the neurologist decides to take him off of clonidine, make sure you go extremely slow at it. I had a couple doctors when I was little that just basically took me cold turkey off the clonidine which caused a lot of troubles.

 

There's numerous things you can try for your son. With the sore muscles maybe a massage, chiropractor, or epsom salt bath could help. Supplements and avoiding certain foods can often make a lot of difference. I would suggest checking out Chemar's: The Treatments that have helped my son post: http://www.latitudes.org/forums/index.php?showtopic=687

 

For myself I use supplements, acupuncture/Chinese cupping, allergy treatment along with trying to have a healthy diet, and am currently detoxing heavy metals. I originally had a very severe case of TS and was on all kinds of medications. I've been off medications for the past year.

 

Carolyn

[kfen]

Thanks for the reply carolyb_lsc if I may ask when you say you had a very sever case of TS, did you have the "waxing and waning"? If so did the sever waxing last for extended periods (over a month at a time)?

 

We are trying some other approaches as we noticed today that our sons tics seem to increase around hair products and a candle we had burning? we cleaned his room with steam and bought a HEPA filter to see if this might help reduce the severity. I am going to try to contact an allergy doctor tomorrow to see about getting him tested for any food or enviroment allergies. I am also going to ask about having his blood tested. Thanks again for the reply, our son is currently 12 and I know this is a time when his body is changing and could be a big reason for his current "waxing" but it is VERY hard to watch him struggle.

[Chemar]

Hi kfen

 

when my son's TS was in severe mode, he did wax and wane.

 

I must tell you that his tics were never as bad as when he was on the prescription meds!!

 

also, being as zoloft is a SSRI you should be aware of the possible serious side effects from SSRIs and young people. My son was on Luvox, which is very similar to Zoloft, and it made things worse in multiples and brought on other very very nasty side effects.

 

Do remember that if you decide to stop the meds, it has to be a long and gradual withdrawal under physician assistance, with dose titration down in small increments. these brain drugs are very very powerful and serious consequences (some irreversible) can result from too rapid withdrawal

 

Once we had my son off the drugs and on to the natural treatments we saw a dramatic and permanent improvement.

 

all the best to you

[ad_ccl]

Just a quick note - maybe you should look into PANDAS. My son also had what would be described as transient tics for a while then there was a sudden and dramatic increase in tics - coinciding with an untreated strep infection. If you are doing tests - you may want to get his strep titers checked. If an untreated strep is the problem he needs to be on antibiotics.

[kfen]

Thank you Chemar for your post. My son has only been on the meds for about 3 weeks and we have decided to stop the Zoloft. We cut his dosage down for a couple of days and were planning to stop giving it today. I had read that Zoloft stays in your system and is reduced by 1/2 each day until it's completly out of the system? We did talk to a freind of ours that is an RN and she said that our approach was good. We do plan on talking to my son's doctor today to let him know we are taking him off the Zoloft, I'll be sure to confirm that our "weaning" out time is sufficient. Thank you so much for your reply. Watching a loved one go throught this is beyond measure!!

[Andy]

My son's tics at their worse were always 24/7 and they were a lot. Even as he slept, which was hard for him to do, there was teeth grinding and facial movements. We were pushed in the medical direction of dealing with the symptom but we decided to look for the cause. Things that helped my son was restricted diet, vitamin/mineral/amino acid supplements, fish/olive oil, epsolm salt baths and chelation.

My son is doing fantastic but it was a long trip to get there. Hang in there and know that things can get better.

The first step is getting information and the second step is testing so you can see what treatments fit your child the best. Different things can cause tics from an old infection that never cleared up to heavy metal poisoning and with a few things in between.

 

Also we never did any finger pointing on whose fault it was and we never treated our son as if something was wrong. We ignored his tics and did not discuss it unless it was treatments being explained.

 

In our case it turned out that our son has heavy metal poisoning which may have been caused by mercury in his vaccination shots.

[kfen]

Thanks Andy,

 

It's interesting to hear about metal, my son recently got braces (approx 3-4 months ago) and his tics seemed to get really bad about 1 month ago, don't know if it may have taken some time to effect his system or not, but I look at that as something to definatly explore. We are going to see an allergy doctor on Wed and I am going to have him check his blood for any high levels of whatever. We are definately not going to quit, any your success is the kind of thing that will keep us searching.

 

Thanks again.

[Guest]

kfen,

 

When I had the severe TS, I still had waxing and waning. However I was constantly ticcing. I commonly had 15 different tics. One of the worst ones was head shaking every couple of seconds. When the tics waxed from their normal severity it lasted usually 2-3 weeks, sometimes longer or shorter depending on the cause.

 

Carolyn

[Andy]

Thanks Andy,

 

It's interesting to hear about metal, my son recently got braces (approx 3-4 months ago) and his tics seemed to get really bad about 1 month ago, don't know if it may have taken some time to effect his system or not, but I look at that as something to definatly explore. We are going to see an allergy doctor on Wed and I am going to have him check his blood for any high levels of whatever. We are definately not going to quit, any your success is the kind of thing that will keep us searching.

 

Thanks again.

 

 

My son was tested for allegies using the skin test and nothing came up.

He was then tested by a DAN doctor for delayed food allegies and it turned out that his body was not properly digesting corn, soy, gluten-all bread products, milk/dairy, and rice. The reasoning may be that his heavy metal poisoning damaged his small and large intestines.

My son has had only very low grade, not noticable to others, to no tics for a while now.

However, he has had two outbreaks during that time due to stress from seeing a dentist and having work done and when his baby brother got severly burned by my inlaws when they were baby sitting.

What Carolyn described sounds alot like what my son had.

It got to a point where you could not count to three seconds with out seeing his body jerk, a sound being made, his neck turning or his eyes rolling backward.

But natural and detox treatments did help and we did them in stages.

I forgot to mention before that one of the main treatments that we still are doing is pro-biotics to help repair the gut.

[kfen]

I can't thank everyone enough for all the input, but I am at a loss on where to find a DAN doctor (I don't even know what that is) and where to get him tested for delayed food allergies and heavy metals? I am commited to doing these things, but I can't seem to locate any of these services? When I ask a "regular" doctors they say they have never heard of a DAN doctor and they don't want to run blood tests as they don't think this is the problem and are not supportive of my efforts? I am in the Cleveland OH area, so if anyone know of any leads Please let me know. Thank You

[Chemar]

kfen

 

here is a thread from the top of this forum to provide help in finding DAN doctors and other Integrative doctors

 

http://www.latitudes.org/forums/index.php?showtopic=565

 

DAN stands for Defeat Autism Now, and altho DAN docs are primarily called so because of their work in alternative treatments for autism, many of the areas used there overlap with what is needed for the testing and treamtments for TS and some DAN docs have experience in using these techniques for TS patients. ALWAYS ask if the doctor has experience with tics/TS before you make the appointment.

 

Many other Integrative doctors (ie doctors conventionally qualified who have gone on to specialise in complementary/alternative medicine...usually have MD PA ) are also up on all the tests and treatment protocols that the DAN docs use

 

all the best to you

[kfen]

Thanks so much for the information Chemar, I have used the links you provided and found a DAN doctory in our area that has experence with Tics. Thanks again.