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hello,

 

i haven't posted in a while but since last post had my 9yr allergies tested and he is not allergic to anything. he has a tic disorder that has been really bad since middle of july. we ended up taking him to a dr in our town and she prescribed him clonidine. so we started with 1mg for 1 wk and also paxil. the paxil was for the possible anxiety issues she felt he was having that may be casuing the tics. well we noticed with the clonidine he did go to sleep earlier but at midnight would wake and then go back to sleep to only waken again with horrible dreams. we then added the paxil as dr suggested and he started staying up and walking around at night in his sleep. his dr said this is called activation and we got him off that. we then kept him on clonidine 1mg for a while longer but sleep issues did not imporve. dr then upped clonidine to 2mg and then he went from sleeping off and on throught the night to waking and not going back to sleep at all. right now we are weaning off clonidine but tics are horrible . they never went away or improved since we started clonidine on august 5 and today is now sept 13 and he is now blurting stuff out and i swear resembles tourettes but was not diagnosed with tourettes. he also has had several issues with strep in the past that i have mentioned in other post and we had an immunology work up done and found out he has no immune system . he and his 5yr brother both have IGA. they are both on amoxi/clav antibiotic at the moment for sinus infections and he now has an ulcer in his mouth and is ticing like crazy. i don't know where to turn next. his dr wanted to put him on respidol and it scares me really bad reading about the side effects plus my papa was on halidol the original respidol and lost all feeling in his tongue and arms and dr said we should not give him this med. he doens't have any other issues other then anxiety and tic disorder. i am worried,scared and don't know what to do next. i have a friend that found a dr in our town that is a Naturopathic Doctor and wanted to know if anyone has ever had any good results with a dr that treats with supplements instead of scary meds. please if you have any info share with me. i have also read things about mercury and causing tics and just don't know what all to do next.

 

thanks

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Hi, have you tried ts-plus for your son. If not it's vitamins by Bonnie grimald. The ts-plus has helped alot of children with tics. You can check it out at Bon-tech. Also there is alot of helpful threads on here. So you can go back and look through them, alot of valuable information. Char..

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Hi, have you tried ts-plus for your son. If not it's vitamins by Bonnie grimald. The ts-plus has helped alot of children with tics. You can check it out at Bon-tech. Also there is alot of helpful threads on here. So you can go back and look through them, alot of valuable information. Char..

 

 

see the thing is i am nervous about giving him anything. i have seen the ts-plus but haven't really checked into it. i will do some research on it. i just want him off the clonidine so last night i gave him 1/2 the dose and he slept all night without waking with a nightmare. so basically he was on .1 and i 1/2 that. i sent his teacher a note today to see how he is doing in class or if this is only going on at home. surely she would have called me on this if he was doing this in class. geeeez being a parent sometimes can be soooo hard but staying strong and knowing there are others out there going threw what you are seems to help me alot.

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Kamkoop01,

 

Have you seen the thread for the empower(treatment with supps.) that one family here has had good results with.

 

You may want to look into that or Bonnie's.

 

CP

 

 

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help.

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Kamkoop01,

 

Have you seen the thread for the empower(treatment with supps.) that one family here has had good results with.

 

You may want to look into that or Bonnie's.

 

CP

 

 

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help.

 

What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps.

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Hi and welcome

 

I will try to post more later, but did notice you mentioned your dad was on haldol (haloperidol?) Was this for tics? Tourette syndrome? or something else?

 

I believe that "true" TS is genetically inherited. As to what the original cause was for those genes to mutate...well, that I do not know, but I do think that those altered genes are passed on in families, as opposed to the TS-like disorders, which can also be genetic in some, but may also have many immediate rather than inherited causes, from infection (as in PANDAS) to allergies/sensitivities from exposure and environmental triggers etc

 

if this is in fact TS, please dont lose hope. my son has genetic TS spectrum of disorders, and he is now 21 and doing really well. I feel this is a combo of his age (it is known that TS symptoms, altho they may never fully go away, get much milder after the teen years are passed.....and the healthy diet and supplements that he is on, as well as trying as much as humanly possible to keep stress at a minimum

 

Have you done testing for PANDAS or other infection triggered neuro-immune disorders?

 

Sheila's book can be very helpful when one is trying to formulate a plan.

http://www.latitudes.org/book.html

 

Bonnie's vitamins have helped many. Some seem to be sensitive to them tho (possibly the soy or another of the ingredients) but most TS people seem to do really well on them http://www.bonniegr.com

 

I have not heard anyone say tics got worse on the empower plus? I only saw one thread about it here saying tics had got better with it (unless I missed others?)

I had mentioned tics could get worse with one of it's ingredients, dl-phenylalanine, which can increase dopamine levels in the brain, something that people with TS do not want as research shows that people with TS tic more when there is excess dopamine.

But so far we have only had a good report on using it

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Hi kamkoop01,

I agree with giulia, just because the traditional allergy test did not show allergies does not mean there aren't sensitivities. These will not show up on a traditional allergy test. Our son has sensitivities to wheat, dairy and artificials as well as some more things. We found these out by elimination diet and a diet diary. Other triggers were trial and error. We found cleansing our home of chemical cleaners etc. made a difference. I can totally associate with your panic, have been there, probably will again at times. Using a naturopathic doctor or enviro physician can be a big step to pointing you in the right direction and soothing some concerns regarding supplements. I am also someone who is cautious even with supps. so a helping hand with getting what he needs through diet and sifting through possible food etc. sensitivities is a real comfort. We find the Natural Calm as well as epsom salt baths have helped our ds with his restless sleep and diet is definately trial and error. Have a good cry and then make a plan. If you havent done any elimination diet maybe that's a good place to start, going as clean and organic as possible. I wish you the best!

Megan

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Kamkoop01,

 

Have you seen the thread for the empower(treatment with supps.) that one family here has had good results with.

 

You may want to look into that or Bonnie's.

 

CP

 

 

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help.

 

What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps.

 

 

the allergy test done was done with little plastic ball up and down the arms. it basically test for allergies that could be from pollen,molds,grasses just the basic type but they did test for dairy being when he was little he had milk allergy or that is what we were told being he could not tolorate any fomula other then nuetramagin. he still gets stomach cramps from drinking milk so i think he may be lacto but not actually allergic.

i have read alot of things on the natural calm and was wanting to try it. i was scared to purchase it. i am to the point where i may just give in.

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Hi and welcome

 

I will try to post more later, but did notice you mentioned your dad was on haldol (haloperidol?) Was this for tics? Tourette syndrome? or something else?

 

I believe that "true" TS is genetically inherited. As to what the original cause was for those genes to mutate...well, that I do not know, but I do think that those altered genes are passed on in families, as opposed to the TS-like disorders, which can also be genetic in some, but may also have many immediate rather than inherited causes, from infection (as in PANDAS) to allergies/sensitivities from exposure and environmental triggers etc

 

if this is in fact TS, please dont lose hope. my son has genetic TS spectrum of disorders, and he is now 21 and doing really well. I feel this is a combo of his age (it is known that TS symptoms, altho they may never fully go away, get much milder after the teen years are passed.....and the healthy diet and supplements that he is on, as well as trying as much as humanly possible to keep stress at a minimum

 

Have you done testing for PANDAS or other infection triggered neuro-immune disorders?

 

Sheila's book can be very helpful when one is trying to formulate a plan.

http://www.latitudes.org/book.html

 

Bonnie's vitamins have helped many. Some seem to be sensitive to them tho (possibly the soy or another of the ingredients) but most TS people seem to do really well on them http://www.bonniegr.com

 

I have not heard anyone say tics got worse on the empower plus? I only saw one thread about it here saying tics had got better with it (unless I missed others?)

I had mentioned tics could get worse with one of it's ingredients, dl-phenylalanine, which can increase dopamine levels in the brain, something that people with TS do not want as research shows that people with TS tic more when there is excess dopamine.

But so far we have only had a good report on using it

 

 

no it was my grandfather that was on the haldol. he had parkinson's,cancer and alzhemiers (sorry spelling) this made his tongue numb and hung out to one side. i told the dr this and she said not to try it on him if a family member had a reaction.

i am very interested in the ts-plus just what all do you give with this. is it just the ts-plus ?

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the tongue numbness,hanging is usually a symptom of Tardive Dyskinesia, one of the dreaded potential side effects of haldol and other neuroleptic drugs. I am surprised that they put your grandfather on haldol when he had parkinson's tho, as with PD they need more dopamine, whereas with TS they need less. Haldol reduces dopamine, so would make parkinson's worse!:mellow:

 

after the horrid side effects my son had from haldol, I am very relieved to hear the doctors warned you against using it for your child

 

my husband had a horrid reaction to clonidine. he is also TS

 

starting supplements is best done slowly so starting with ts-plus alone will give you a better idea of whether it is helping or not. you can then add other things IF needed.

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We use the TS-Plus. My son gets 10 pills a day, 5 in the morning and 5 at night. I open them up and mix into a smoothie for him to drink. We started out with 1 pill a day and increased very slowly.

 

I showed my pediatrician and he wasn't confident they would help, but said they were safe. Recently, I also showed our integrative/envirnomental doctor and he was very impressed with the supplement combination.

 

The only other thing I give to my son is Omega-3's, but I started that very slowly too, since some people don't respond well to them. Haven't seen any issue yet, if we do we'll switch to flaxseed.

 

We also make sure he gets plenty of probiotics in the form of Kefir or Cultured Cocounut Milk (which we are now using because it is dairy free).

 

Good luck! :)

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Kamkoop01,

 

Have you seen the thread for the empower(treatment with supps.) that one family here has had good results with.

 

You may want to look into that or Bonnie's.

 

CP

 

 

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help.

 

What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps.

 

 

the allergy test done was done with little plastic ball up and down the arms. it basically test for allergies that could be from pollen,molds,grasses just the basic type but they did test for dairy being when he was little he had milk allergy or that is what we were told being he could not tolorate any fomula other then nuetramagin. he still gets stomach cramps from drinking milk so i think he may be lacto but not actually allergic.

i have read alot of things on the natural calm and was wanting to try it. i was scared to purchase it. i am to the point where i may just give in.

 

I WOULD DEFINITELY DO THE OTHER KIND OF TEST (IT INVOLVES BLOOD WORK) BECAUSE IT IS MUCH MORE COMPREHENSIVE, AND FOR US IT WAS A TURNING POINT. GOOD LUCK

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