Is it fair to have kids when you have TS?

[Guest Diane]

I just read all your very touching posts. I have a husband and two sons with TS of varying degrees. It hurts me deeply to see them dealing with their symptoms. When my sons began showing symptoms it was absolutely crushing to me, I didn't know how I was going to deal with it, much less help them. I keep telling my mom, the worst thing about this disorder is not being able to put a box around it and say "OK, well that's as worse as it's going to get, now I can get the grief and anger over with, accept it, and deal with it" because it's always changing. That's the cruel part. Just when you accept and deal with certain tics, they can change, disappear, or get worse. When symptoms wane, you get a period of relief, hoping that it last a long time (maybe forever?). Then it comes back and you are dealing with that roller-coaster ride again. But my husband is a wonderful guy, gentle, easy-going. My kids are incredibly loving and funny and very kind-hearted, and have been blessed with many talents. I pray for strength because God obviously feels that I am the right mom for these children, and He knows what He is doing!

I have done a tremendous amount for them, made sure they are comfortable in school, try and have them eat properly to minimize tics. I have researched TS until I can't read any more. But your forum is such a comfort.

[Guest Diane]

I have a question for Claire.

 

My oldest son (almost 14) has a fairly newly-developed eye-blinking tic that is somewhat worsening. Can you suggest anything that would particularly help

that? He is currently on a very low-dose of Clonodine (.025mg 3X a day).

but I am looking for natural alternatives. do you think Magnesium would help.

What about Omega-3.

 

And a note to Buddy - my husband is 43 and his tics are worsening, and I wondered the same as you (aren't they supposed to get better?) But my husband believes it's his diet that he has to change. When he was in his late teens, he went on a very strict diet - no preservatives, everything natural and his tics TOTALLY WENT AWAY. He said it was very hard to keep up this diet but he was tic-free for years. now he has gone back to his old habits and his tics are back full-force.

[Claire]

Diane,

 

Welcome to our forum! It is a haven for many of us. Ronnas started a prayer thread once, and I was amazed at how many of the mothers felt their paths to help their children were guided by God. I bumped it for you.

 

Re artificial ingredients, your husband was ahead of his time. Jeff is our local 'Feingold' expert. He and his family all had tics and they all completely went away with the elimination of artificial ingredients. It is tough, but much easier with stores like Whole Foods--the choices are much broader today.

 

re Vitamins I believe in a customize vitamin program. Magnesium is a common deficiency and Magnesium Taurate is commonly recommended. But it needs to be taken with calcium for a balance. Here is a relatively recent snap

 

http://www.latitudes.org/forums/index.php?...p?showtopic=766

 

But we took a spectracell vitamin deficiency test and a pyroluria test and customized our program. I think these are common to many, but still I wanted a custom program. The antioxidants are for elevated mercury.

 

Claire

[Guest Diane]

Claire, thanks for the info. I looked on the snap you provided, I had actually printed it off last nite to read in bed. I'm going to try several things. The biggest thing I noticed is about the flickering computer games/LCD screen. This is my son's biggest passion! And I always KNEW it was making his eye blink tics worse, my husband adamantly disagrees with me. I notice that my kids and husband often crave what is worst for their tics (chocolate, caffeine, sweets, video games, junk foods of all kinds). It is difficult being a mom in this house because I'm always the bad guy, always trying to take away or limit what they want the most. I dread Halloween every year, because they all go nuts with the candy/sweets and I know what it does to them!

Interestingly, the local doctor "expert" in TS here that my sons see periodically disagrees with me - does not feel there is any correlation between foods and tics. I told him my husband is living proof that there is...

Also, the school here was giving Hep B shots to all the Gr. 7 students, and after reading up on possible horrendous side effects, especially as regards to tics, I would not give my permission for my son. He was the only one that didn't get it...everyone thought I was nuts. But I have to do what I feel is right for my kids. I feel like a salmon swimming upstream....

[Claire]

Diane,

 

Wow. You will like this board, because so many agree with you. Virtually all of the regulars now eliminate artificial additives and a lot of us are finding food sensitivities--wheat and milk are common. The good news about food sensitivities is that you can usually see a change within a week. Artificial additive elimination can take up to 6 weeks.

 

I am going to pull together a dedicated thread on "Screen Triggers". I counted, and 10 posters (8 here, 2 on Braintalk have tried 'no screens' for a week and all but one (Carmon) found a substantial or major improvement. Some suspected it, and for some it had never occurred to them. More on that on the thread. So based on this very small, non-scientific uncontrolled 'study', if you suspect the trigger, there is a 90% chance that you are correct. Almost everyone who found the improvement changed their children's viewing, and a few have improved so much with the treatment protocols here (diet and supplementation) that their children can tolerate some TV, but I don't think anyone has 'unlimited' exposure.

 

One pediatrician thought tics were simply there, another thought they often (nothing is 100%) related to TV/computer. Mainstream medicine isn't there yet, that is why Sheila Rogers (site editor) put a specialist doctor thread at the top of this message forum. They may not know about screens, but they can run all sorts of test. Virtually all the regulars have a specialist on this and I think everyone who continues to post has seen some improvement--not just in tics but in behavior.

 

If you do make the commitment and find a good time to try 'no screens' for a week, I strongly encourage you to start a thread when you do, and post on it, either throughout the week, or at the end of the week, to let us know. It was tough for all of us--those games are addictive and pervasive! But it was soooo rewarding to see the results and even the one who didn't see any improvement said she enjoyed more family time together playing board games. We had booktapes, board/card games, comic books and sports to engage us (you would think extra reading, but it didn't happen). What I did was to have lots of playdates during that time to avoid 'boredom'. We have always had a rule--no computer/TV when friends are over, and no one questions it. By the way, for most I think they started to notice some improvement before the week was up to encourage continuation. It isn't forever--it just buys you time to find out what works for your family. For us, a 15" (size matters) LCD monitor for TV and computer with no flashing/rapid action games is sufficient.

 

Good luck, I know very well about being the bad guy. But honestly, if YOU have the time to find recipes, shop at different stores and be creative, it is very liveable. It is far easier if you get fast results--then everyone is more willing to cooperate. Even so, I think the burden is equally on the parent driving this as it is the children (or spouse!).

 

Claire

[Guest Diane]

Claire, I'm willing to try whatever I can, I'll certainly keep everyone posted as to the results.

I have to tell you the biggest struggle we've had is in dealing with the school. They did not understand TS triggers and behaviours and I have spent the last eight years of my life literally fighting with them to understand TS. It has been the most stressful years of my life. I feel like a pioneer. My kids are A+ students, well behaved, and well liked by other students. You would think the school would be pleased with this. But my kids cannot sit for hours on end and be quiet, they need time to walk around and release their pent-up energy. A small price to pay for well-behaved, A students, but the school balked. I was in there all the time advocating on my kids behalf. They were complaining about such stupid things (your son fidgets! Your son runs in the halls! (when I told my son to try walking quickly instead - they complained about that: "no power-walking!) Your son went out the wrong door! Your son threw snow when they were warned not to! Ridiculous stuff! I finally used our own money (my husband's insurance) and paid for the best child psychologist I could find to intervene on our behalf. Now that a doctor is involved, the school is willing to do anything to make my sons comfortable. Things are much much better now. I'm seriously thinking of writing a book on my experiences, because no one would believe the stress of what the school put me through.

Or maybe they would!

[Andy]

Diane, as a special education teacher, I feel bad for you. I know how schools could be filled with intelligent people who think like idiots at times. As a parent, you have alot more power then the schools would like you to know. In most states, if not all, if the school can not provide the needs of a child then the parent could place that child in a private school that the local school district would have to pay for. Also, a parent could sue a teacher, principal, or school district for a host of things and some of them are justified. In a lot of areas, educational advocates would provide free legal advice and even a lawyer if you have a good case. If asked, I could post some parent rights up at a later date. Personally, I'm not the type of person that sues but I do believe that if someone does not have the love of G-d in them, then give them the fear of G-d.

[Chemar]

Hi Diane

 

Andy is absolutely correct in the rights that you have in the school system. They HAVE to accomodate your children for the TS and any comorbid conditions and if they wont they are breaking the law, unless they provide you with the ability to switch to an accomodating school or give you private school "vouchers".

 

here is the TSA website.....go to the sections on education and Education Advocacy.

 

http://www.tsa-usa.org/

 

We had a private educational psychologist do the comprehensive testing on our son and write detailed reports on all the accomodations that he requires at school and the school, by law, HAS to provide them.

This is only my son's second year in public school (he just started 8th grade) and I am very pleased. We had him in private education before. But I know that without the comprehensive reports and literature that I supply to his teachers, counsellors etc...perhaps things wouldnt be so smooth. When he was initially going thru the diagnosis 5 years ago it was a nightmare dealing with the school he was at then!

I learnt quickly that I had to be mommy lioness

I got lots of very valuable booklets and brochures from the TSA and I now provide each teacher with a copy of his psychoeducational report plus the booklets/brochures so they have no excuse. I also ensure that his counsellor and the special ed liason at the school are fully briefed on his needs, tics etc etc.

[Guest Diane]

Hi Andy and Chemar

 

I should tell you that I am from Ontario, Canada. We have all of the things you have, set up here in Canada as well (special considerations for students with all kinds of disabilities, special accommodations). I had that all set up. But I have to tell you, that no matter what accommodations were put down on paper, getting the teachers to adhere to them was another story completely. I was constantly faced with rigid, inflexible teachers who had been in the system 25+ years, and still tried to fit my sons in the mold they wanted, no matter what special considerations were set up. I fought like a lioness too, damn near ruined my health over it, but it wasn't until I got a reputable psychologist advocating on their behalf that they backed down. She basically said to them: from now on, you deal with ME. Happiest moment of my life!

[Guest buddy]

Hi Diane, does your husband remember which foods he cut out when he was on the diet? I know everyone always says artificial ingredients etc but in my busy work day that pretty much means everything ....

Hi Chemar and Claire...thankyou for the reply. What exactly is pyroluria? Also, you both said I should take B6, I actually started taking them about 2 weeks ago with B12, calcium/mag,zinc,and cod liver. I haven't noticed any difference yet regarding my tics but I am keeping my fingers crossed.

Also, do you know of any less expensive ways to find out what you're allergic to, is there any home tests etc. I just started at a new job a month ago and I won't qualify for insurance for another 5 months so going to a doctor is out of the question for me at the moment.

Thanks again. Buddy

[Claire]

Buddy,

 

Exactly how much B6 and zinc are you taking? When do you take the B6, and are you taking the zinc at night, apart from any other minerals such as calcium, magnesium and iron?

 

If you have pyroluria, the B6 level is 200 mg B6 and 50 mg P5P (activated B6) a day, ideally in at least two doses. For zinc it is 50 mg, though we shifted down to 25 mg and will retest to see if it is enough. You can do a search on the internet for it. Some of the symptoms can be: Poor dream recall, stretch marks in women, quick to anger, alcoholism in the family, smelly feet, white spots on fingernails, low stress tolerance... If you really can't afford the $80 for the at-home test plus shipping, (no doctor's signature needed), then you might consider trying this dose for 2 weeks. But I am no doctor, so I hesitate saying it, and only mention it because you are an adult (I don't like to see experimenting on kids!). At that dose, you would likely see a difference within 2 weeks if this was your primary issue. It won't happen so easily if you have multiple issues, as many do, e.g. food sensitivities.

 

As for food sensitivities, Doris Rapp wrote 2 books: 1) "Is this your child's world and 2) "Our Toxic world". In one of them she gives an elimination diet. It is the no cost way to do this. Very hard for children (though Ronna did one for her child), but as an adult, it might be manageable, and the cost is $0. Here is the link: http://www.drrapp.com/

 

You only eat only certain low risk foods (e.g. chicken, water, certain vegies, maybe rice--important to know which ones) for a certain time period--I forget how long, maybe 2 weeks. and nothing artificial. If you have some food sensitivitie, then you would see a reduction in symptoms (tics or behavioral). Then you add in foods one at a time and watch for a reaction. Wait a few days to introduce another food. Sometimes symptoms take 2-3 days to show. On the other hand, if your symptoms don't improve at all over the time period, then your tics are probably not triggered by foods and no methodical reintroduction is required.

 

We inadvertently did this when my son got sick and wouldn't eat for 4 days (this was before his IgG test results came back). His fidgetiness completely went away--he noticed also. But we weren't systematic in reintroduction--we just had to get food into the poor kid!

 

Others may laugh, but here is my magic formula recommendation for you (as an adult, not for a child)--to pull out all the stops. BIG DISCLAIMER--do your own Due dligilence and doctor supervision needed for vitamins...!

 

1 week of:

 

1) elimination diet (chicken, rice, brocolli, carrots?? I have to find out what it is…I think my ENT doctor/allergist has this) ...NO milk products, wheat/gluten, eggs, nuts, etc....seasonings except sea salt, no sugar (yeast issues), and no ARTIFICIAL ingredients at all--meaning make your own food. Drink lots of water and get good rest in a dark room with no lights (melatonin)

2) Some assortment of supplements including magnesium/calcium/Omega 3's/probiotics/ B6/zinc…

3) No screens

4) Air filter (molds, dust triggers)

 

 

This would basically test a host of things at once, all in one killer week.

 

Good luck--I don't expect you to do this, but I had to throw it out.

 

Honestly, I bet if all the newcomers did this (except maybe lower levels of zinc and B6 unless a pyroluria test was done or it was suspected), I bet half would see some improvement. From there, they would BELIEVE that environment affects tics. I know that mercury/antioxidants and yeast are often bigger issues, but they are more of a long term treatment and this is a quick hit.

 

I fear that Jeff's artificial ingredients test can seem like a failure for some, not because it doesn't matter, but because other sensitivities or vitamin deficiencies are still factors and continue to trigger tics.

 

So many can't afford or find doctors. Maybe we can track down that elimination diet and post it and come up with a one week program for people to try. Maybe on vacation in the woods, when families expect more limited diet choices and no screens, so it is not traumatic for the kids.

 

If by some miracle you do this, let us know if it works.

 

Claire

[Guest Diane]

Buddy

 

I will ask my husband in more detail what he cut out, and let you know exactly. But I remember he ate no prepared foods, pure organic cereals. He would eat a steak with nothing on it (like steak sauce). He also didn't mix certain types of foods.

I will definitely get a more detailed list for you as soon as he gets home from work. I think it is really worthwhile trying, Buddy. His tics absolutely went away. And he had terrible tics (blinking so bad he got headaches, his head jerks sideways and up and down, some mild vocal tics). Because he also has OCD, he was able to put it to good use and so he obsessively went on this nutritious "jag". But after years of being tic-free, he slowly went back to his old habits, and now we are back where he started! So he has to muster up the effort to go back to what he was doing.

I'll post another reply as soon as I get the info for you from him.

[Heather]

Buddy,

 

YOu mentioned you are taking fish oil which is the supplement for Omega 3. In many cases Omega 3 is deficient and Fish Oil may be the answer. However, if Pyroluria is actually the case, then Omega 3 can worsen the condition. What you need to supplement with is Omega 6 such as Primrose Oil. Omega 6 fatty acids are very abundant in our diet and normally most people would not need this supplement, however, with Pyroluria Omega 6 is depleted from our system and this supplement may be needed along with the B6 and Zinc.

 

Once my son started the B6, Zinc and Cal/mag his tics decreased dramatically. This was after a lot intestinal healing for yeast and heavy metal detoxing. A few days later I tried the Omega 3 (fish oil) and he did have a reaction so I quit. The tics went away.

 

Heather

[Guest]

I'm 19 with tourette syndrome, ocd, and add. I just wanted to get my opinion in here. When I find the right person I wouldn't let the ts stop me from having children. I've thought about this before also. I also have some relatives that tell me I should adopt rather than having my own children. As for this I feel its my choice to have children when I'm ready and I won't let someone telling me I shouldn't stop me. They had their choice and I should have my own choice also. I was a very challenging child, but now that I'm older I've had a lot of achievments and am a very kind and understanding person.

 

I have an advantage that my parents didn't have. My parents didn't even know what ts was until I was diagnosed so we had to spend all the time trying to figure out what I had. I not only would be able to recognize ts in my children, but I also have ts, also start at the vitamins approach before starting at meds as when I was diagnosed none of the doctors ever mentioned about vitamins. We also didn't have these great websites to get onto. Theres a lot more information out now than there was 15 years ago. I've done a lot of work doing respite care since the age of 14 with children that have cerebral palsy, autism, odd, adhd, down syndrome. Even though some of these children may not walk or talk they are really sweat kids and I love providing care for them. So I would never let ts get in my way of having children.

 

Carolyn

[Guest buddy]

Hi Claire, Diane,Heather...and welcome Carolyn.

Thanks for the replies. Claire, I am taking 100mg of b6, 50mg of zinc, 250mcg of b12, a cal/mag which is 500mg/250mg ( I think) and I take two of those and the cod liver oil which now I will swap as Heather pointed out about the omega 6. I have been taking all of them in the morning. Thanks also for the link to Doris Rapp...it's seems like it is a popular read.

Diane, thankyou for the info with your husband's diet and Heather, I am going to swap my oils. Is omega 6 a bunch of different oils or is it just primrose etc?? I get so confused with all these names.

Anyways, now I feel I cheated with my McDonald's happy meal today....

I'll be more healthy tomorrow....

Buddy.