TS and anger?

[Laurie in Az]

We have dealt with "tourettes" rages. For my son this is very different than garden variety temper tantrums and bratty behavior. The rages are usually triggered by a known trigger for him. A big one is chlorine, hot tubs are a huge no no. Flouride treatments will also set him off, as will extreme stress. He is unreachable when in the middle of his rages and will be self destructive. My goal is just to get him through it safely. We've also learned to use Melissa tincture at the first sign of anger. Gaia herbs makes a tincture called Melissa Supreme. It has been wonderful for Aaron. He will ask for it when he feels tension building up. Foot rubs also dissipate the coming storm. We have recently been dealing with a new problem. Smart boy that he is- he tries to blame pure old spoiled brat behavior on tourettes. When we put our foot down, he threw some truly dramatic tantrums. They subsided very quickly when he found them ineffective. They were very different from the rages, he had control! I sometimes have difficulty sorting out what is developmental, what is neurological, and what is behavioral! He is almost 11y.o. and I think that I probably have been too easy on him in the past.

 

Laurie

[Tsmommy]

I am in Port Richey. I am North of Clearwater.

[airbucket]

Just something I found interesting-I was looking up bipolar today and associated behaviors. Tics was one of them. Discusses rages and things of this sort. Just thought I should put out there that tics was an associated behavior. Rage was an associated behavior of Tourettes. Hmm..confusing.

 

Interesting. then how do we know what our child has? maybe its not TS but something like bi polar WITH tics? I suppose this is why i am making an appointment with Dr Murphy because sometmes i feel like i dont even know what is wrong with my son due to the fact that his other issues are SO much more a problem than the actual TICS. He rarely tics now actually. We havent had a bout of tics lasting more than 2 days in a long time. But again, doctors have told me that the essence of TS, that it waxes and wanes so much its impossible to say that this or that treatment or medication is helping because it could just be waxing or waning. I dont know! But the rages are a huge problem, bigger than the tics for us. The worst part is there is no warning. Something that normally would not upset him causes a violent outburst at other times. But i agree with bmom, it is confusing!

[bmom]

I know when I read a post of Michelles when she saw Dr. Murphy it talked about treat the symptoms. Example- her son had motor issues so go to OT. Maybe Dr. Murphy will help with this rage - forget the title, treat the issues most pertinent. I know I looked up a few supplements to treat bipolar-just a coincedence that I had met someone yesterday whose daughter has bipolar and said she also had ADHD, bedwetting, seperation anxiety and a few other things I found related to Tourettes. Some of the suggested supplements were Omega 3 and magnesium.

[Tsmommy]

I agree mith bmom in that I don't need another thing added to his medical record so young. I am tired of everything always having to be the result of something else. I just want to teach him to redirect himself when no one is around to support him. I think many of these options are worth trying before a back to yet another Doctor and get yet again more meds. Just my opion on what I think is best for me and my son.

[bmom]

Something else I found interesting about bipolar 2 of the medications on the list were Abilify and Respirdal. Once again sounds familiar. I guess what I would consider is that something is affecting their brains in different ways. What might help?

[JudyLV]

My son is gluten intolerant. He becomes emotionally unstable when he consumes even trace amounts of gluten. He is 12 years old. Our GI doctor wanted him to do a gluten challenge a couple of years ago. While he was eating gluten many days were filled with tears, yelling, and uncontrollable anger. We had to stop the challenge because he broke his arm but it was a very stressful time. Once he was off of gluten for a week or so I had my happy, agreable son back.

 

--Judy

[michele]

Please check out this article because it explains exactly what you are saying. If we as parents put these kids under a constant microscope and constantly take them for tests and bloodwork and to Dr. after Dr. it can make it harder on them long term. It really hit home for me. I know our neurologist and Dr. Murphy has been saying this. Give them love and help them to relax and not feel different because they already know they are kind of different. I want to know what the future holds and if it will get better or worse but only God can predict that. Make them feel good about themselves now and they will most likely outgrow this in time. I want to remember this because it is hard when you want answers now.

 

http://tourettenowwhat.tripod.com/Alternat..._Treatments.htm

 

I agree mith bmom in that I don't need another thing added to his medical record so young. I am tired of everything always having to be the result of something else. I just want to teach him to redirect himself when no one is around to support him. I think many of these options are worth trying before a back to yet another Doctor and get yet again more meds. Just my opion on what I think is best for me and my son.

[Tsmommy]

Michele,

 

Thank you for the link! It is exactly what I feel as a parent. I want to do this without all the Doctors and dx ( unless warrented ).

[faith]

Just to add my two cents, regarding the "pursuit of cure" they are talking about, (do you get the feeling they are referring to us?!! ) Well, I kind of agree with what they are saying regarding not putting the child too much under the microscope and making them feel different by depriving them of childhood pleasures -- however, I think I and most others here do strive for that "balance" between finding things that work while not overdoing it to the point of madness. But heck, we have to try, and if something works and makes things better, than well that's our prerogative. Most of the research and "experimenting" I do is a very private affair with myself, and my son is really only aware of the "junk" food and the corn restrictions (in which sometimes we fall off the wagon due to exactly that - not making him feel totally deprived or different) and the supplements he takes are pretty much no big deal (he gets a few in little glass of juice and a couple others in spoons of apple sauce and I just give it to him while he's eating), and also with the naturo appts., I usually go myself to discuss him, he doesn't need to be there. I totally understand that all we learn here and try for our kids are not "proven" remedies, and I have pretty much abandoned the desperation to "end" the tics through these natural treatments we have learned about (and I will never stop learning), but I tend to feel that these health strategies can and do help in some way and are a way to "manage" the symptoms. I do believe we can lighten the symptoms as well as other behavioral issues, but it's a quest, and if you're up for that challenge, great. ... The point is we can persue all this with a healthy quest for knowledge, and if wanting to persue the best health possible for our kids is considered "overzealous", well then, they have a name for us.

 

Faith

[patty]

Faith,

 

I agree with you. The article has a very important & valid point about not obsessing over finding a cure, but it seems to take it to the extreme. I have been on this board for about a year. Many parents here have a good sense of balance and try very hard for their children to live a very normal life even with the diet & screen restrictions, supplements and dr appointments.

 

Up to today, my son does not know he has tics and is not aware that he has that condition. We don't talk about his tics and pay no attention to it when he is ticcing. When we see various doctors, i tell him that we are there for his allergies. It is the perfect explaination since he has asthma since birth and later grew into environmental allergies. TV restriction is not a problem. In our house, we only watch 1 hour a day probably 3X a week when homework is done. We have a small garden & a craft room for the kids, so they are always busy doing or making something. We also play after school for about an hour each day to make sure my kids get plenty of fresh air & excercise.

 

I disagree with the article that alternative approaches to healing do not work. I, for one can vouch that diet restrictions, supplements and alternative treatments work for my son. My son is 95% better today because of it. The problem with treating TS or tics is that everyone's cause of symptoms are different. Therefore, one approach may work for one but not the other. But i think in general we all agree that a healthy lifestyle with appropriate supplements do help keep symptoms under control. I am very hopeful that our children will recovery because the human body is an amazing thing. It has the power to heal itself when giving the proper care. And i feel that is especially true for children as their young bodies are constantly changing, growing, adjusting and healing. I read somewhere that about 90% of our body's cell can regenerate & recover in about 2 years!

 

I was very skeptical in the beginning of our alternative treatment approach. It is so out there that it is hard to comprehen because we are not expose to this way of thinking & healing. If you have an open mind and do alot of reading here and research, you will see that alternative treatment works. Just beware of alternative healers who prey after people who are vulnerable.

 

Pat

[Chemar]

I need to add here that the person who runs that website linked to above has been extremely critical of Latitudes/ACN and used to hound and ridicule and contradict Claire and myself and Ronna on another board and openly posted to discredit Sheila Rogers as well. They also tried to cause disruption here a few times

 

soooooooooo

 

everyone is entitled to their opinion and yes, obsession with a "cure" is an extreme I dont agree with, but so is having closed mindedness to alternatives and possible "outside of the box" answers, and being scathingly critical of solutions others have found simply because they dont fit one's own frame of reference is IMO not very constructive.

[michele]

Sorry if the article was offensive. I could identify with the constant focus and running to Dr. after Dr. for answers. I know several Dr's have told me to stop watching him so closely for tics. Also his teacher says he doesn't even notice them in the classroom. With twenty five other kids they must not jump out like they do when it is just him at home. We all admire the strategies that have worked for those here. We are all here for the same purpose to help our family members. The tone of the article seems similar to those in the medical world we have come up against with neurologist and psychiatrist. Disbelief in the way the diet is connected to the brain and gut etc. In fact our neurologist didn't believe that the antibiotic could work unless he was exposed to the strep not as a preventitive. I think alot more is to come in the news and research to backup the diet and its connection to neurological disorders. Dr. Demio said in five years he predicts it will be mainstream. Why is there this close mindedness when it comes to supplements and diets?

 

Chemar the way you have worked with your son to help ease his symptoms is remarkable. You provide so many worthwhile suggestions to others and you should be applauded for you efforts. We all benefit from the sharing of what has worked for others like yourself, Ronna and Claire. God bless you all.

 

Michele

 

I need to add here that the person who runs that website linked to above has been extremely critical of Latitudes/ACN and used to hound and ridicule and contradict Claire and myself and Ronna on another board and openly posted to discredit Sheila Rogers as well. They also tried to cause disruption here a few times

 

soooooooooo

 

everyone is entitled to their opinion and yes, obsession with a "cure" is an extreme I dont agree with, but so is having closed mindedness to alternatives and possible "outside of the box" answers, and being scathingly critical of solutions others have found simply because they dont fit one's own frame of reference is IMO not very constructive.

[emma1]

Michele, Just wanted to add my two cents. First, I love this board, and think it totally ridiculous someone would try to disrupt these discussions. Just awful! I read the article, however, and in my heart, I know that it is at least partially true. For my daughter right now, if I made a big deal out of this -- if I ran her from doctor to doctor -- if she had test after test -- it would make her feel so "different" from everyone else -- it would, in short, pretty much ruin her year.

 

So, I am making a huge effort not to watch every single thing she does. Some days I am more successful at this than other days. And, I am working quietly behind the scenes. I research. I read. The last doctor's appointment for her -- I went by myself!!

 

I will say this, though. When your child is having mild symptoms, or no symptoms, it is so much easier to sit back and take the advice in that article. But when the symptoms come full force -- as they did for us during our "break" from antibiotics -- it is next to impossible to just let things unfold. I become frantic -- literally on the internet night and day, calling our doctor, buying supplements left and right!

 

This last "break from antibiotics" -- when my daughter had such a hard time -- happened over Homecoming Week-End. (My daughter is totally into all of this and loves it and is not stressed by it at all, when she is not ticcing!) If I hadn't been able to get antibiotics, and they hadn't worked pretty much immediately -- the event may well have been ruined for her. I have read enough here to know that just because this antibiotic works now, it may not work later, so I feel I have to keep working at it.

 

However, right now, I am moving very slowly. I rushed in and had her taking a little cup of supplements -- I didn't know what was working and what wasn't. So I stopped everything but the antibiotic, and started over.

 

Again, in my heart, I know balance is best. (Do you think it counts if sometimes you are totally calm and other times totally frantic? No? I didn't think so.)

[Chemar]

that is so very well said emma Balance is key!

 

Michele, so sorry if I sounded abrupt in my reply. It wasnt directed at you. More in memory of times thankfully past. And in a hurry. so possibly not the best wording ever.......

 

I know there is a lot of very good information on that site, and I even used it for information for me when my son was newly diagnosed and I was floundering around with no clue as to what to do and how to stop the severe and painful tics and total tranformation that happened in his 10 year old life, almost overnight, when the genetic switch on happened I guess. So I am in no way negating any of the good help and information available there.

 

do understand my comments were in no way directed at you or that anything was wrong in this valuable discussion. It was based on seeing a post suggesting some there may be referring to us here and mentioning that it would not surprise me. I havent read the forums there, only ever went to the web info, so have no idea what was or wasnt said or why.

 

ok.....just felt the need to explain that I am not negating the good that site is for many, and to ensure you Michele and everyone that this is a valued discussion. I just felt background was needed in case any of you might recomend Latitudes/ACN and meet with negativity. I feel kinda protective as I know how fragile I was back in the early days.

 

(((hugs))) to all and back to the discussion

 

my husband and son both have TS and both have had to deal with anger issues so it is a subject I do understand.

We have found consistently that Cognitive Behavioural Therapy, whether done by self or better yet by a qualified psychologist, is one of the very best ways to help with those extra things that can sometimes accompany life with Tourette Syndrome. The supplements and healthy diet they both follow goes a long way to provide complimentary healthcare.

 

 

ok...rambling post over *blush*