Can I vent?

[lurker]

Ilovedogs,

 

I know exactly how you feel. My son's tic disorder began the last week of September. Two months later, after making so many positive healthful changes (most of which were expensive and inconvenient), I saw NOTHING.

 

Watching for change is a lot like watching something grow. It wasn't until about the four-month point that I could look back and see a dramatic difference.

 

Someone recently mentioned an immediate response to Taurine and another to fish oil. That happens. My friend can tell if her kid hasn't had his fish oil that day (He has different issues); but I have repeatedly read that it takes two months just to see benefits from fish oil. We are all so different.

 

My son had good days and bad days, better weeks and worse weeks. When I look back from this point (He still has mild tics.) what I see is that his good days and weeks are better, and his bad days and weeks are no where near as bad. It is definitately moving in a downward spiral.

 

It takes time to heal.

 

 

Tami

[lmcgill]

For us, our son turned 9 in February, and with all the excitement of his birthday and probably some junk food, he did have a few very short lived head knodding tics. But overall, his tics are much less frequent and noticable then they were at his onset close to 2 years ago. He has a one eye blinking thing going on usually when he eats, his tongue comes out occasionally, but not very often. I am like some others on this forum, I watch him way to much. His tics do not bother him, they only bother me. My stomach use to go into anxiety overload if the poor guy got the hiccups!

We use the Bontech vits., as well as Calm, and a pro biotic. I did have him on fish oil, but I was not too sure if it was a problem so I give him a little Flax oil in his OJ instead.

One bi product of cleaning up his diet, is we all bennefit from a healthier lifestyle. We have also spent a lot of $$ on NAET appts. and I am not too sure about the success, but I believe in it just enough to continue this year with them.

I still think that no matter what you do, the kid will still have tics, but they will be less.

Also, I have thought about genetic tics or tourettes as apposed to the transient/where did these come from tics. I hope that he grows out of them, but in the mean time, I will do my best as a parent to provide him with all the proper care I can.

[ilovedogs]

Oh, one more thing...

About your frustration with all you're doing and not seeing results/patterns emerge...

You mentioned you have the taurine, but have not given any yet. Certainly it may not work for everyone, depending on their body's particular needs, but I have to say that taurine was the ONE supplement that gave instant results for us. I saw a huge decrease in one or two days (throat clearing in particular). So, I think it would be worthwhile for you to give taurine for a couple of days as a trial. If you see a huge decrease, YAY! If not, maybe it is not one of the supps you will need. For most supplements, I would recommend giving a much longer trial, but for taurine, it may be worth a quick shot in the dark just to see what happens.

 

Good luck,

Calicat

Thank you for replying, Calicat! We hadn't seen too many tics over the weekend but this AM it's been all day long, nonstop eye winking. So, I am planning on starting the taurine this week! I read your other post about the whole OCD/Tourette's thing and that's something that I muse about quite often, too! Of course, I know that there are cases of TS that aren't genetic anyway but since I'm dealing with mild tics so far I'm not inclined to say TS right now.....maybe just a transient tic issue for now? Who knows, really?! It's all a guessing game to me right now!

[CarolynN]

Hello to my fellow Arizonan,

 

I just was wondering what he ate this morning? Did he wake up with the tics or did they come on after he ate? When I was so desperately trying to figure out what was going on with my son these were always the "ahh-ha" moments for me. I would start thinking "ok he didn't have tics yesterday or the day before but he does now". So what things have changed in terms of food and/or environment that could have created more tics. This is also where food logs come in so handy because you forget all the foods a person ate over the past few days. So you can go back and say "that's right he had that and I am starting to see a pattern from the last time he ate it". I think it is real important to come up with some sort of scale. I used 1 to 10 to rate the tics for the day. I got to a point when I would give him a morning and afternoon rating to hone in even more as to what was triggering him. I am fortunate because my son reacts very quickly to those foods that bother him. I know for many this may not be the case.

 

One thing I am curious about, as you know, it was extremely windy this weekend in our area (for those reading this we only live about 25 miles or so from each other). Anyhow, I know quite a few people who have had a real problem with their allergies this weekend. It was from the combination of the winds and also with all the pollen from the heavier then normal rain fall this past winter. So my question to you was he outdoors for any amount of time this weekend? Because to me this would be a clue that you are probably not dealing with "seasonal" type allergy tics if he was indeed spending time outdoors over the weekend. Again being that you did not see an increase in tics Saturday or Sunday. If there was one time period when you would find out if he did have "seasonal" allergies inducing tics, it certainly would have been this past weekend. Now he could have environmental allergies to indoor items such as carpet, candles, laundry detergent etc.

 

I am really curious as to the events of this morning and whether he woke up with them or it was after breakfast.

 

Have a good evening,

 

Carolyn N.

[Tracey111]

I hope that all of the input here has helped you! I am in the same boat. I actually have to stay away from this website so that I don't obsess too much. Your story is VERY similar to mine. Did a vaccine come right before the tics started?

 

The "bang swinging" tic started for us while we were on vacation. The following week it got really bad. I too had eliminated all artificial stuff and was doing a "healthy" diet. My diet was very high in salycilates (which the members here brought to my attention). I took him off the spring mix salad, tomatoes, melon, and OJ. The next week the head tics were gone. It has been tough b/c most of the "HIGH" salycilate fruits and veggies were the ones that he eats! It helped. I added organic flax seed oil too.

 

I am new to this, but the above info helped get rid of the bang swinging tic. I hope it helps you!

[ilovedogs]

Hey Carolyn,

I always notice tics before he starts breakfast. Actually, I can't recall the last time we've had a tic free day. Most days it will fluctuate from day to day in severity but it's always there. As far as the allergies go: I think the HEPA filter in his room is helping and yes, we spend a great deal of time outdoors this time of year. Not sure about the allergies this time of year as I know that something gets him from May to early August. I can't remember what is actually blooming then that doesn't the rest of the year, though. Maybe one of the trees like the acacias or eucalyptus trees. Right now I'm not seeing any allergies that are noticeable in him. Now, I, on the other hand, have been miserable with my allergies!

[CarolynN]

You know I have noticed, when Daniel is experiencing tics, when he first gets up would be one of his biggest burst of tics and the other would be when he is relaxing in bed to go to sleep. I just wonder if the morning tic is because when we wake up our body gives off some adreniline to get us up and going. I am assuming this would then effect the neurotransmitters. Now with all this said if he is ticcing in the morning I can tie it back to something he ate the day before or several days before.

 

I also have noticed when Daniel eats he does not tic at all. No matter how dramatic his tics have been. I have been curious as to why he does not during this activity but for some reason he does not.

 

Hang in there. There are answers. It has been so amazing to see the difference in reducing his tics, over the past 1 1/2 years, of this journey of realizing I was dealing with food issues and deficiencies with vitamins/minerals/amino acids. The journey was hardest at the beginning when I was trying to get my head wrapped around this. But know I look back and am amazed at how much healthier we are eating and how much knowledge I have gained about the body. You will too I am sure.

 

 

Carolyn

[ilovedogs]

I hope that all of the input here has helped you! I am in the same boat. I actually have to stay away from this website so that I don't obsess too much. Your story is VERY similar to mine. Did a vaccine come right before the tics started?

 

The "bang swinging" tic started for us while we were on vacation. The following week it got really bad. I too had eliminated all artificial stuff and was doing a "healthy" diet. My diet was very high in salycilates (which the members here brought to my attention). I took him off the spring mix salad, tomatoes, melon, and OJ. The next week the head tics were gone. It has been tough b/c most of the "HIGH" salycilate fruits and veggies were the ones that he eats! It helped. I added organic flax seed oil too.

 

I am new to this, but the above info helped get rid of the bang swinging tic. I hope it helps you!

You know, I've been thinking about getting him off of salicylates, Tracey. He loves pizza so that has tomato sauce, of course. And, he drinks a lot of juices that mostly have apple or grape juice as a base. He doesn't seem to crave any one type of food, though. Maybe I'll give the salicylates a try!

[Tracey111]

I found the list under google. It is great b/c it lists the none/low/moderate/high/very high food by category and then alphabetically. The one I printed was not off of an "official" site, but it had all of the stuff off of the other sites. You will be amazed at the things listed! I even eliminated pepper! It shows all of the spices and their salycilate levels. I hope it helps.

[ilovedogs]

You know I have noticed, when Daniel is experiencing tics, when he first gets up would be one of his biggest burst of tics and the other would be when he is relaxing in bed to go to sleep. I just wonder if the morning tic is because when we wake up our body gives off some adreniline to get us up and going. I am assuming this would then effect the neurotransmitters. Now with all this said if he is ticcing in the morning I can tie it back to something he ate the day before or several days before.

 

I also have noticed when Daniel eats he does not tic at all. No matter how dramatic his tics have been. I have been curious as to why he does not during this activity but for some reason he does not.

 

Hang in there. There are answers. It has been so amazing to see the difference in reducing his tics, over the past 1 1/2 years, of this journey of realizing I was dealing with food issues and deficiencies with vitamins/minerals/amino acids. The journey was hardest at the beginning when I was trying to get my head wrapped around this. But know I look back and am amazed at how much healthier we are eating and how much knowledge I have gained about the body. You will too I am sure.

 

 

Carolyn

Thanks again for your encouragement, Carolyn. He was ticcing really heavy today. Lots of fast winking and blinking. I had started the kids calm a few days ago and was trying to figure out why he is ticcing badly today. I am guessing it was the hot dogs my husband fed him last night for dinner. They were NOT nitrate free! It's hard to get my dh on board b/c this is all so new to us.

I guess only time will tell!

[ruby23]

How often do you give the epsom salt baths?? Try at least 3 times a week, 2 cups of salt per bath. From my understanding it takes a while to release toxins. Try sticking with it for a month to see if there is any change.

 

 

 

 

I've been really good about what I'm feeding my son. Keeping him away from additives, preservatives, food colors, vanillin, MSG, soy sauce, etc. This has been going on for over a month. I've been giving him a cal/mag supplement and omegas for 2 months now and I've seen NO CHANGE in those darn tics. Nothing! They still come daily, some days more than others, but still there! I thought maybe the omegas were causing trouble so I took him off of them 3 days ago and have not seen a change. I've even switched 'some' of our meals over to gluten free hoping to start reducing our gluten intake. Not sure if we're ready to go 100% on that one, yet. I just feel like ds is getting frustrated with all the changes I'm making and he sees no change.

Also, the tics don't bother him. They seem to bother me more than anything so I wonder if I'm doing all of this for myself!? But, then I remind myself that I'm still improving his health along the way. It's just so hard to tell him NO all the time when things weren't like this just a few months ago. Can anyone else relate???

 

I just feel like I'm going in circles. I tried the epsom salts in the bath but I thought I saw increased tics the days after, but then again that could just be a waxing thing!??? Again, it's so confusing to me!

 

I'm planning on adding taurine to his supplements and then eventually try Bonnie's. But, I wanted to do one supplement at a time for now so that I could see if there is improvement.

 

I guess I just need to know that eventually I will see results. That this will not all be in vain. I mean, how long does it take to see a change, just a change? I'm not talking a complete cessation of tics but just some sort of positive result that I can cling to?

 

I'm sorry if I'm going on here but I just don't have anywhere else to go! My friends don't understand and my husband just figures it's no big deal and that he'll outgrow the tics so I should stop worrying, etc. Thanks, all for listening!

[ilovedogs]

How often do you give the epsom salt baths?? Try at least 3 times a week, 2 cups of salt per bath. From my understanding it takes a while to release toxins. Try sticking with it for a month to see if there is any change.

 

I'm going to try that, Ruby, since he's now got a good head/hair throwing tic going on! I have a bag of epsom salts just waiting to be used!

[JBC]

Hi ilovedogs -- I'm pretty new to the site, but I've learned so much in the short time I've been here! I started with an elimination diet and found out my 10 year old son is intolerant to corn and its products (gets a stomachache almost immediately). Having cut out corn products, I also am now very strict about eliminating artificial colors, flavorings and preservatives for my son. It's been two or three weeks, and unless he's waning, which he could be, the tics have been remarkably better for the past few days. There are good chunks of time when I don't see the tics at all. So, for us so far, eliminating allergic/intolerant foods and artificial ingredients, is doing the trick so far (fingers crossed). If the more moderate ticcing comes back, I think my next step is a vitamin supplement (Intrakid most likely). I have kept a detailed food journal the entire time, and that's really helped me. I have found going slow, trying one change for a period of time, has helped me focus on what may help and what may not. I hope this helps you.