I am new and I need help

[deby]

Hi to everybody,

 

My son (8 1/2) started having tics around 1 month ago, in the beginning I didn't notice there were tics, he barely did them. He had one motor tic (he opens his mouth and kind of breath into it) and he has one vocal tic ( he screams).

Around one month ago he started doing those screams from time to time, and I was angry at him and asking him why he was doing that.

An then 2 weeks ago, the weekend before the state tests (that we put a lot of pressure on him to get prepared, we were doing practice tests every day), he started having a non stop mouth tic.

We couldn't believe what we were seeing in front of our eyes. Then I realize he had tics and also the screams were tics. I think at that same moment my world turned upside down.

Of course I started reading in the internet about TS, and watching the worst diagnosis. I start thinking what's going to happen with my boy, how he can grow like that.

I've cried the whole week, I was desperate.

We immediately took him to a neurologist recommended by his pediatrician, she said that the tics might go away, but you never know. That we should take all the stress from his life and maybe start doing therapy. Luckily she didn't recommend to start medication, since at that point I wasn't aware of all the problems the medications bring.

So we did exactly what she recommended. He is better, still tics a lot but much less than before.

Then I discovered this web site. I think this web site helped me "restored " myself, stop looking of what could happen, or how he is going to end, and I started looking of solutions, what I can do to helped him and try to restore his health.

As recommended I have an appointment with an allergist in 2 weeks, I bought Bonnies supp, and Epson salts.

I am buying organic foods, get rid of all the candy, starting to look at the labels to avoid food coloring and MSG.

 

 

I have some questions:

1. Is there any other specific test that I should ask the allergist?

2.Yesterday night , was pretty bad, he woke up at the middle of the night with the scream tics, I couldn't find anything about having tics during sleep, any idea?

3.any other recommendation?

 

Thank you !!!

[sf_mom]

Was your son sick or vaccinated prior on-set of TICS? Is it possible he had strep throat lately?

 

You might want to look into the PANDAS/PITANDS section of this forum to understand if there is an infection/virus trigger component to the sudden on-set of your son's TIC. There are numerous tests that can be done to rule out infection.

 

http://www.latitudes.org/forums/index.php?...art=#entry47051

 

http://www.latitudes.org/forums/index.php?...art=#entry47378

Edited May 26, 2010 by SF Mom

[Lynn777]

Hi Deby,

 

Welcome to the board. I am new to this too, so I won’t be as much help as some of the others, but I can say that you have come to the right place. My son has not been diagnosed yet, but we know he has a tic disorder and most likely based on his symptoms – its tourettes. I can totally relate to how you are feeling because I am feeling the same way. It is a very heartbreaking and scary situation. However, I am (slowly) learning that there is hope and the doom and gloom stories you first read about on the internet are more the exception then the rule. I came into this a huge western medicine girl, I’ve always been skeptical of diet, supplements, etc. That said, when I started reading about tics and peoples experiences with triggers, I knew I had to quiet my inner critic and get moving. My son has been on Bontech for almost two weeks now and we have stripped the house of offending foods and possible triggers. This week has been his best week since the explosive onset 6 weeks ago. I am fully aware that it could just be the natural waning of symptoms, but I am also hopeful that with knowledge, perseverance and faith we will find ways to help my son cope with whatever the future holds for him.

 

I read somewhere on this board that the opposite of fear is faith and I keep repeating that to myself – all day, every day.

 

Another piece of advice given to me when I first showed up here --> remember your son is still your son no matter what, love him, hug him and be there for him.

 

Take care,

 

((hugs))

 

Lynn

[CSP]

Welcome Deby,

 

I wanted to let you know my son had the screaming tics too, and his lasted a year. It was very hard but he is 16yo now and does not scream anymore. My son did not scream while sleeping, but as soon as he woke up he would start. If he had to use the bathroom in the middle of the night I would be jolted out of bed because he would start.

 

Natural calm helped him a lot, and the epsom salts helped him get to sleep faster.

 

It's going to be ok, just don't let all the scary TS stories run your life. I did that, and it robbed me of 2 years.

 

God Bless,

CP

[deby]

Thank you SF mom, for your reply.

My son was not vaccinated for long time nor had strep, but in the other hand, he has some of the symptoms described in the links that you send me.

I'm going to the allergist next week and I'll ask to be tested also for strep.

Thank you!

[deby]

Thank you all for your kind words of hope, I really need them right now.

We had a terrible night yesterday, his tics woke him up all night, poor little guy. My heart got broken.

I'm hoping that Bonnie supplements will work.

[sf_mom]

Good idea: Rapid, Culture, ASO, Anti-DNAse-B (strep titers)........ These tests will not rule out PANDAS but will definitely point you in the right direction if he is positive for any. Your son could have strep and be asymptomatic. Perhaps you could bring him to the Pediatrician right away for tests. Could also be related undetected sinus infection, ear infection, gut, etc.

Edited May 26, 2010 by SF Mom

[Chemar]

Hi Deby

 

good that you are running as many tests possible to be certain on what you are dealing with

 

do keep an open mind at all times as there are many different things that can cause tics, as parents here have learned

 

it is also good that you are being proactive with diet and supplements as that has often been found to help greatly no matter the root cause.

 

I have a link in my signature documenting my son's treatment plan. He has genetic inherited Tourette Syndrome with a bunch of other stuff added, but careful diet, supplements and environmental control turned his life back rightside up after an agonizing year after he was first diagnosed at age 10. he is now 20yo and doing great with the tics/OCD very stable.

[ilovedogs]

Welcome Deby,

 

I wanted to let you know my son had the screaming tics too, and his lasted a year. It was very hard but he is 16yo now and does not scream anymore. My son did not scream while sleeping, but as soon as he woke up he would start. If he had to use the bathroom in the middle of the night I would be jolted out of bed because he would start.

 

Natural calm helped him a lot, and the epsom salts helped him get to sleep faster.

 

It's going to be ok, just don't let all the scary TS stories run your life. I did that, and it robbed me of 2 years.

 

God Bless,

CP

She knows of what she speaks, LOL! Seriously, CP has been at this for years and she's seen the worst and seen her son still succeed and get through school and be successful at sports, etc. I know, I've met them! Don't let this rob you of your calm. Arm yourself with knowledge and you will feel more confident in dealing with the tics. I have to admit that when I see new ones I get upset but it's temporary and I start looking at my supplements, analyzing his diet and any changes, and I start thinking about what has happened in his environment that may contribute to new tics. My son tics more from stress but I also know that allergies can trigger some nasty tics for him. He's more of an OCD type tic kid, LOL! He will do stuff like vocal noises or repeated hand movement and when I ask him if he 'has to do it' he tells me 'no, it just feels good' so then I know it's more of a repetitive habit than it actually being a tic. He can actually stop doing these if I ask him to but he can't control the actual tics.

 

I've never heard of kids' tics waking them at night. Maybe he's actually waking at night and then the tics start up again? Research melatonin for sleep issues and see if you find anything. I've never tried the supplement myself or for ds but I know some on here have tried it and had success. Anyway, praying the rest of your week calms down. Feel free to ask lots of questions, sounds like you're on the right path and like you're taking control as only we mothers can do, right?

 

Bonnie

[deby]

Thank you Cheri!

Actually the things that I'm doing are base on your report, thank you very much for posting that and giving such useful information and hope!

I started today with Bonnie's supp., next week I'm going to the allergist and started having only organic food.

Hopefully his health will improve fast.

Regarding the rest of the things in your report, I'm still not very familiar with all those things.

I'm not sure if I should start with taurine,GrapeSeed,L-carnitine.

Regarding detoxification with chlorella and controlling yeast overgrowth, did you do tests that showed that your son had those problems? or you just decided that the chlorella is ok to give anyways?

Thank you!

[deby]

Welcome Deby,

 

I wanted to let you know my son had the screaming tics too, and his lasted a year. It was very hard but he is 16yo now and does not scream anymore. My son did not scream while sleeping, but as soon as he woke up he would start. If he had to use the bathroom in the middle of the night I would be jolted out of bed because he would start.

 

Natural calm helped him a lot, and the epsom salts helped him get to sleep faster.

 

It's going to be ok, just don't let all the scary TS stories run your life. I did that, and it robbed me of 2 years.

 

God Bless,

CP

She knows of what she speaks, LOL! Seriously, CP has been at this for years and she's seen the worst and seen her son still succeed and get through school and be successful at sports, etc. I know, I've met them! Don't let this rob you of your calm. Arm yourself with knowledge and you will feel more confident in dealing with the tics. I have to admit that when I see new ones I get upset but it's temporary and I start looking at my supplements, analyzing his diet and any changes, and I start thinking about what has happened in his environment that may contribute to new tics. My son tics more from stress but I also know that allergies can trigger some nasty tics for him. He's more of an OCD type tic kid, LOL! He will do stuff like vocal noises or repeated hand movement and when I ask him if he 'has to do it' he tells me 'no, it just feels good' so then I know it's more of a repetitive habit than it actually being a tic. He can actually stop doing these if I ask him to but he can't control the actual tics.

 

I've never heard of kids' tics waking them at night. Maybe he's actually waking at night and then the tics start up again? Research melatonin for sleep issues and see if you find anything. I've never tried the supplement myself or for ds but I know some on here have tried it and had success. Anyway, praying the rest of your week calms down. Feel free to ask lots of questions, sounds like you're on the right path and like you're taking control as only we mothers can do, right?

 

Bonnie

Thank you Bonnie, I hope that I'm in the right way since there are no "good"medicines in this field, so guess this is the only way!

I hope that he'll be better this night, I gave him an Epson salt bath, and I started today with Bonnies supplements, so I hope the Magnesium will calm him and he'll be able to sleep.

I think my son tics are very similar like your son, the tics actually really increased/showed up for the first when he had the state tests this year.

Before that I saw the tics rarely but at that point I didn't know there are tics..

[Chemar]

Thank you Cheri!

Actually the things that I'm doing are base on your report, thank you very much for posting that and giving such useful information and hope!

I started today with Bonnie's supp., next week I'm going to the allergist and started having only organic food.

Hopefully his health will improve fast.

Regarding the rest of the things in your report, I'm still not very familiar with all those things.

I'm not sure if I should start with taurine,GrapeSeed,L-carnitine.

Regarding detoxification with chlorella and controlling yeast overgrowth, did you do tests that showed that your son had those problems? or you just decided that the chlorella is ok to give anyways?

Thank you!

 

glad you found it helpful Deby

 

I would not suggest giving chlorella unless you know your child has high levels of mercury, and yes, this has to be tested for.

 

the yeast overgrowth(candida infection) is also tested for, tho there is a simple home test that can give an indication of it

http://www.adhdrelief.com/CandidaTest.html

 

a positive usually means there is candida albicans "yeast" overgrowth in the GIT

a negative doesnt rule it out tho, so further testing (blood/stool) may be needed

 

you may also want to look thru our helpful threads

http://www.latitudes.org/forums/index.php?showtopic=2459

 

grapeseed extract is an excellent immune supplement that benefits most people, except those who have autoimmune illnesses

 

re taurine and l-carnitine, both are amino acids and so need to be used with caution as different people react very differently to them depending on unique biochemistry

 

as you are still not sure what the root cause of your son's tics are...I would personally wait a bit before deciding to try them and then, if you do, start low, go slow and do one at a time to be sure there isnt a negative reaction

[deby]

It is a roller-coaster, it is so tough. I'm trying to be strong for my family, but I feel things are falling apart.

Yesterday even my husband, that never cries, he cried. My other boy , (older boy-11-no tics) cried for everything.

There were some days, that things look much better, and now the last 2 days were really bad.

He does constantly the motor jaw open tic, constantly, non stop, all day. Poor boy.

I started Bonnie supplements 2 days ago, maybe those made the things worse?

I can not think about any other thing, we cut on sweets/artificial stuff, he barely see and TV/computer, eating only organic.

What it can be?

Are we going downhill to a really bad end that we will not have a choice, and we'll have to give him medicine?

I'm really desperate... sorry...

[CSP]

I'm so sorry you are feeling this way but I do so understand. My husband was always the strong one and handled this much better then I, but there had been a time or two that he cried too.

 

If at all sometimes medication can just give you the chance to relax from all the stress and feel like things have calmed down enough to think clear. We did do meds for a month in the beginning and it was something I did not like to see him on, but it gave me the courage to plunge into cleaning the diet. My son's body tics never came back after we used the clonidine patch for a month, but it did not help at all his vocal tics. I was happy to see at least the motor tics gone.

 

Hang in there, it will get better.

 

CP

 

I can't remember is he taking an allergy med?

[deby]

Thank you CP!

He was never tested for allergy since he didn't show any symptoms.

I am taking him next week to an allergist maybe he'll discover something.

Thanks!

Deby