Need Help again

[melanie]

Ive givin up I need to find a medication that will help!! Ive tried everything exausted all apossibilities food changes everything I dont feel like Ive missed anything .I need some direction is there a forum like this one where there is people like you guys that have used medications that have worked ? Danny is 15 has no friends now his self esteem is in the toilet struggles sooo much Its time for another way .Im ok with this just need to move on PLease if anyone has a suggestion or a website that I can turn to I hope theres still some help He has a vocal tic coperalia ( Cursing) some motor tics hes sulutes I will write more

[patty]

melanine,

 

so sorry to hear what is going on w/your son. hang in there. you will find something that will help. sorry i don't know much about his condition.

 

does he have any food or environmental allergies? have you try NAET? it has been helpful to my son.

 

pat

[faith]

melanie,

Were you recently trying a certain med, was it the topomax? are you sure you are giving the meds a chance, like it could take a month or so to see the benefits, I would think. Have things always been like this for your son, or have things only gotten worse in last year or so? I don't recall if you said, is he aspergers? is he a social boy if given the chance or prefer to be alone? do you have other children?

I am praying you find the right direction to help your child.

Blessings,

Faith

[melanie]

melanie,

Were you recently trying a certain med, was it the topomax? are you sure you are giving the meds a chance, like it could take a month or so to see the benefits, I would think. Have things always been like this for your son, or have things only gotten worse in last year or so? I don't recall if you said, is he aspergers? is he a social boy if given the chance or prefer to be alone? do you have other children?

I am praying you find the right direction to help your child.

Blessings,

Faith

 

Danny does have aspergers ,and he is on topamax 25 mg I dont think its helping at all maybe it only helps with motor tics danny has coperlia(sp) I tired of this really tired ....I just want it to stop I have a hard time not being dissapointed I love him so much but the vittamines and food changes thousands and thousands on therapies isnt working I guess some people it just dosent work for .The mag worked when he had an eye tic but nothing works for this verbal stuff I hate all of the words he says I cant even believe he can say them or where he learned them .I know he cant help it but still ... Thanks for letting me vent

[myrose]

So Sorry to here of all this Melanie. I know how it all tugs at your heart strings. The roller coaster of emotions is unbearable to say the least. Especially when you feel you as a Mom that you can't help.

My daughter is on Topamax....it really needs to build up in the system to get the full effect.

My daughter was mostly motor tics but right before we resorted to Topamax I remembered a humming and sniffing noise that I now realize was a vocal.

She had this reaction and same tic everytime she ingested MSG. It took me a long time to find that missing puzzle but MSG turned to be a BIG trigger for her.

Her eye blinking tic was the last to go and when it finally stopped I looked back over my food journals and the only change was she stopped wanting the Chick-fil-a offered at her school once a week.

Her eye blinking stopped completely about a week or so after she stopped getting the lunch.

I researched and wouldn't you know.....IT HAS MSG!!!!!!!

I know its fast food but always felt it was a healthier alternative to the others so I allowed it. Never would I have imagined that this little MSG once a week would have contributed to her eye tic.

 

After that I learned the names of MSG....It comes hidden in other names and the labels can be VERY misleading!

 

I am not sure if you are aware so forgive me if you are, but a reading on a label that says- "Natural Flavoring or "Vegetable Protein Extract" is actually 78% MSG!!

 

Its so tricky to have a name like "Vegatable Protein"!!!

 

 

We have stayed away from MSG ever since I made the connection! FAR AWAY.

 

I am not a doctor but I have to say that when I got upset and frustrated (not to mention crying 24 hours a day) my daughter must have sensed this and it brought her more anxiety which of course meant more tics.

 

Give him a nice long Bath in epsom salts, let him soak. Then maybe give him some die free benedryl before bed and see if they have calmed down a bit by morning. (some have a positive result from benedryl and some do not)

 

Is there something that is bothering him emotionally at all??

 

Lastly Chlorine seems to be a BIG trigger for some as well. Does he swim or if you have given epsom salts bath....could your water be high in chlorine??

I bought shower filters and put them on her shower (that take the chlorine out)

 

It also seems from your post to me that maybe its getting worse??? Have you been keeping a daily log so you can look back to a day where he is not so bad and then look to the day when he is real bad and see what is different. You would be surprised on how many things we really do forget about when we try to keep this daily log in our heads.

 

We have a small electric hepa filter in her room as well and keep the door closed at all times. It could be worse when allergens effect him?

 

I am not sure what testing you have had done or what medicines you have tried but PLEASE do not end up medicating him without having a clear head about it. Its hard to think straught when you are as desparate as this thing can make some of us.

I would not want you to end up with unreversible side effects and then not ever be able to forgive yourself.

 

You as his Mom know whats best so I will pray for the strength you need to make it through this. I have been where you are Melanie and its almost like someone sticking a knife in your gut!!!!!

 

How long has he been on the topamax? My daughter takes the sprinkle cap form and when we tried the tablet form (free samples) she had a negative reaction and started body jerks. We stopped them immediately and went back to the sprinkle caps and she was back to normal. My reason for mentioning this is because a few of the dyes (inactive ingredients) are different in the caps so something as

simple as that set her off!! Just like that.

So think ingredients!!!!!!!!! Ingredients and Ingredients in everything that goes in his mouth.

 

I know its overwhelming Melanie but if I myself can make homemade mayonaise (Thanks to Cheri) than ANYONE can do simple food changes that can make a world of difference.

Maybe its something right under your nose like it was mine that you have not put your finger on yet.

 

I believe right now that the both of oyu would benefit IMMEDIATELY from doing the deep breathing exercises in a few posts up.

It will calm the both of you. If you need someone to talk to you can PM me and I will get your number or give you mine.

 

I hate that you are feeling like this.....I know what its like and I am so sorry.

 

This got way too long I know but my heart truly goes out to you Melanie...it really does.

 

I would have let them cut my arm off back then if it meant my daughter was cured of this.

[dee45]

Hi Melanie,

I am so sorry you are having such a rough time. Are you sure you have given the 25mg long enough time to build up in his system. I know with my son it took a good 3 weeks to see results. He is still having a few neck tics very infrequently so the med so far has been beneficial. I hope you get something that works and I know you will. hang in there Melanie we are all praying for you and hoping things get better.

 

Deanna

[myrose]

Melanie,

I have been thinking about you....how are things? Have things got a little better at all?

[melanie]

Melanie,

I have been thinking about you....how are things? Have things got a little better at all?

[/quot

 

 

Hi

 

Thanks for asking Things are ok right now Hes been home bound since Wednesday cant really go anywhere Its to stressful that stinks because of the holiday weekend.I think he knows were staying home because of him.I feel bad .Me and my husband went to dinner without him again feel bad for that too .I just dont know when its going to come out.I know he cant help it but its not fair to others when a 15 yr old curses loudly.People dont understand and frankly I dont think I would either.We were talking at dinner this has been going on for a year now the behaviors and the cursing we have tried so many different things to help but nothing has helped .I was reading an article on abilify,danny was on that last year for about 3 months could that have made the motor tics verbal? Oh I dont know just wish it would end.He has an appointment at Columbia this week for a overnight eeg I want to make sure hes not having seizures.Im glad that theres people like you that really care Thanks its nice to go on the board and see someone is looking for you REally ,Thank You it means alot. Melanie P.s I read about the MSG and I am aware of labels Im sure theres something making it worse Im not sure I will ever find out what it is .You know whats real sad is his childhood is going to be what it should have been hes 15 and stays home all the time sad what a horrible disorder

[myrose]

Melanie,

 

Its good that you and your husband get out together. You need that. How about sometimes you get one of those Pizza's that Pizza Hut sells (all natural, organic ingredients) and have it at home with him.

Do you guys ever play family games? Just thinking of something to make him happy and forget about his condition for a bit.

It may help him be calm and feel normal.

Does he have a close friend that can come over and hang out, despite his condition.

What about one of those BIG BROTHERS organization. Maybe it help him feel better thus having a positive effect on his tics.

 

Its so very sad to me to read your posts. I am not sure about the abilify you mention...everyone has different reactions to different things. I do bet though it was probably a high dose.

 

Have you tried the benedryl before at all? If it works maybe you can give him some of this so he can get out and be a kid.

If he is or does go into a depression I am afraid it will make all matters even worse.

Does he take Magnesium?

 

Does he have acccess to the internet?? He could find a site about tourettes and maybe talk to some of those people who also have his same symptoms. Sometimes knowing you are not alone is a great comfort in itself.

I am sure he can meet a good friend on line who is going through the same thing as he is.

There is also a Tourettes Camp I have seen on one of the shows like CNN or something. Not sure where it is or where you are but maybe a vacation away from it all and being around people just like him will help him cope better.

I would surely do these things for my daughter and look into them if the time comes when we need it.

 

Have you ever found a trigger for him? When did he start tics? Were they always vocal and motor?

[patty]

melanie,

 

I feel so bad for your son. It must be so difficult for a teenager and the parents as well.

 

Have you ever heard of NAET? If you think abilify was the trigger for the vocal, you can treated it with NAET to desentized the body from reacting to it.

 

I don't have much time to write more on NAET becuz i am studying for my final. You can find my past posts on NAET.

 

Good luck!

 

Pat

[melanie]

melanie,

 

I feel so bad for your son. It must be so difficult for a teenager and the parents as well.

 

Have you ever heard of NAET? If you think abilify was the trigger for the vocal, you can treated it with NAET to desentized the body from reacting to it.

 

I don't have much time to write more on NAET becuz i am studying for my final. You can find my past posts on NAET.

 

Good luck!

 

Pat

 

Hi I looked into the naet Ill ask his DO about that tomorrow ,I have alot to do tomorrow . I had a bunch of allergy tests done on danny a few weeks ago no results yet I dont think its that I think its neurological.Hopefully It gets a little better the foul language is very diffucult Thanks and good luck on your final What are you going to be?