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[Claire]

Hi Alison,

 

If you click on the edit button once the post is posted, you can correct things. No one cares about typos, but I do this occasionally also.

 

I did a ton of things at once, I just meant holding off on the supplements until you did the no screens. Although, it sounds like the possible viral infection interfered with your assessment anyway, oh well!

 

Good for your son for dealing with the TV change so well. We found the same thing--Knex was a big one, and outdoor play, board games and book tapes.

 

If you get an LCD, the smaller screens are best anyway (less visual impact). It sounds like your son has more of an instant trigger with TV than others. efgh's son was like that for a bit (if I remember correctly) and my son definitely was.

 

I added one new supplement each day, our doctor said that was enough time between each of them to assess.

 

I understand your sadness watching him, it is natural to go through this. But you are doing the right thing and focusing your energy on helping him. I know that someday you will feel the joy that so many here have found in knowing that their child is doing so well.

 

 

Claire

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Hi Claire,

 

Thanks for your advise on the supplements. We are on day three of the supplements and have seen no increase in tics so I will slowly increase the amounts I am giving him. The tics continue to get better, slowly but surely. He no longer has the major neck swinging tic, thank goodness.

In terms of the tv, I am absolutely sure the tv was the biggest trigger and it was an instant trigger, I really do wish we had done the no screens a few weeks ago when the only tics we saw was when he wathced tv. We continue with no screens and I am hoping that we will get to a tic free state again and then I will look into the LCD screen. I may even just take him to the store and do an in-store test, and have him watch the LCD then a regular screen and see if there is any difference, considering it literally would take seconds for the tics to start on a regular screen. Not sure how accurate this test would be ( especially since it seemed the type of show would impact the tics as well) but if he started to tic watching the LCD then it would save me the 500$ of buying it unnecessarily.

 

Thank you for your kind words of support...I too look forward to feeling joy knowing that my son is doing well -- I hate waiting for the next viral infection. It will be nice when his body is strong enough to fight these infections without causing tics.

 

Ronna...another question for you. You did say Kurt was on Bonnie's vitamins, I have got some info from her and will ask my doctor about it when I see him next week. Just wondered how many pills you find your son needs to take a day. I understand the max amount for my son would be 12, it seems like a lot of pills to take.

[Ronnas]

Allison,

 

My son does take Bonnie's vitamins. He is 8 years old and is about 60-65 lbs. He has been on up to 15/day but at this point I give him 4 in the morning and 4 in the evening. He has no problem with this as he has always been able to swallow pills. He swallows 2-3 at a time. I also give him the efa's at the same time (4 in the morning and 4 in the evening right now). We use natural factors...learning factors/school aid which is a combination of tuna oil, evening primrose oil, vit E and thyme oil. My son does well with this combo but each child is different.

 

My son had a bit of a cold over Xmas and had very few tics. It is the best he has ever done with an illness. A year ago I discovered he had several food sensitivities and eliminating these foods has made a HUGE difference for my son.

 

I recently saw an LCD screen at the Future Shop which was cheaper than costco. I order bonnie's vitamins and it has never been a problem to get across the border. As well I get anything else I use from Sangster's. I hope you continue to see improvement.

 

Ronna

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Hi Ronna,

 

Thanks for your reply... Can you give me an idea of the final cost of ordering Bonnie's stuff in Canadian dollars, including shipping etc. Also, with the EFA - the one I am giving is EFALEX - it seems to have the same ingredients as yours. Just wondered about the quantities, I have increased to 2 a day - the amounts in mine are 434mg evening primrose and tuna oil, 100mg linolenic acid, docosahexaenoic acid 60mg, vit E 15 IU and a few other ingredients in small amounts. Just wondered if yours was similar as you are giving 8 in total, I was not sure how many is safe to give. I am still trying to reconnect with the naturopath but with Christmas we have been playing phone tag. I am going to see the doctor next week so will take in all the info on vitamins and run it by him as well.

I am so glad Kurt has done well with his cold, it really does give me hope. My son continues to really show no signs of illness other than his tics, and a swollen lymph node on his neck and once he is asleep some slight snoring.

How did you discover the food allergies? My son was tested for allergies twice as my husband is anaphylactic to peanuts and other legumes, so we have had our son tested and nothing came up positive. We had him retested after he had an allergic reaction and was covered in hives and we did not know what it was the result of. In the end they guessed it was because he had been on a sulfa medication and was outside in the sun for a half hour. I guess there is the difference between allergies and food sensitivities. We did buy some soya milk last week thinking we should try switching him to that as I have read a lot of about milk allergies and he does drink a lot of milk. We are also trying to be more aware of what we are feeding him and trying to stay away from the POKEMON, SPONGEBOB pasta, and other foods full of artificial colour.

 

Thanks for the tip on Future Shop, I will check it out. You said at one point you son did tic a lot more while watching the TV but doesn't anymore, I do not think you said you switched to LCD. I just want to do whatever I can as fast as I can. I hate this!!!

 

Thanks again for your information, I feel somewhat obsessed with the computer these days, all I do in my free time is search for more answers...time well spent!

[Ronnas]

Alison,

 

Here is some information about the efa I use...

 

http://www.turnerdrugs.com/item147.htm

 

Per day my son gets 8 capsules. On the actual bottle it will say to give 2 softgels twice per day. I give double this. This product was developed by Dr. Micheal Lyon, MD and he has several books but one to start with is "Is Your Child's Brain Starving"...he became involved in nutrition and alternative therapies when his own son had ADHD. In his book he suggests a starting dose of 8 capsules for the first 3 months. My son has shown alot of improvement academically with the increase in efa's. Therefore in a day he gets...

 

Cis-Linoleic Acid 960 mg

Gamma Linolenic Acid (GLA) 120 mg (from 1200 mg evening primrose oil)

vitamin E 120 mg

tuna oil: 2080 mg (providing: Docosahexaeoinc acid (DHA) 520 mg and Arachidonic Acid (AA) 41 mg

Thyme oil 8 mg

 

More info on Dr. Lyon...(he's Canadian also)

 

http://www.naturalmed.faqs.com/foodnotdrugs.htm

 

As far as food sensitivities go...my son was tested as a toddler for many things as he had asthma...nothing positive. Reading the book..."Is this your child" by Dr. Doris Rapp but me on the food path. Eliminating milk has been especially important for my son.

 

http://www.drrapp.com/

 

We did not use an LCD screen. Over time as we dealt with yeast issues and diet my son could tolerate TV again. Keep in mind that if my son has any milk he will tic while watching TV (although it is so minor only I would notice). If we avoid the offending foods he will not tic while watching TV. Ordering all of the back issues of Lattitudes also gave me tons of information to work from.

 

Ronna

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Thank you Ronna for the info. I will go and get the books you have recommended and the back issues of Lattitudes. I finally reconnected with the Naturopath so I feel good about that, I was only giving small doses of vitamins but feel better knowing that the amounts I am giving are safe for him and feel more confident about increasing the levels. My son continues to improve and has been quite good today, we visited some friends and the tics were quite subtle, I noticed them all but my friend did not notice them until I asked if she had seen them and she started to look for them.

 

I asked the Naturopath about food sensitivity and if there is an easier way to figure them out rather than food elimination as that seems way to hard for me to manage right now with everything else, she said she could have blood work sent to the States for about 200 Canadian, did you ever do this? any thoughts from anyone on whether this is money well spent???

 

Claire - a question for you (or anyone else with advise) with respect to LCD screens. I have been looking into the prices etc and did find one for under 400$ Sylvannia model, it seemed to be 100-200 cheaper than the rest of the models that were also 15" My question is ... is it cheaper for a reason, would it be picture quality in which case I should probably go for broke and buy the better (?) or just more expensive models ie Sony or other more recognizable names.

 

Any advise would be appreciated.

 

Also, I am trying to read some archived posts and am having trouble locating them, I can get to some threads through google searches but cannot get to the main board. I was interesting in the poster efgh as her experience with tv seemed similar to mine so wanted to track some of her e-mails to see if/how things resolved themselves.

 

Thank you again

[Claire]

Alison,

 

Are you talking about a combo LCD computer monitor with built in TV tuner?

 

If so, we bought the Samsung SyncMaster 15" version for just over $400 (450- rebate) and were so please we bought 2 more. The only issue I see is that the sound through monitor speakers isn't the same as through a normal TV at high volume.

 

So, no, I don't think you need a well-known name.

 

We got ours through www.bestbuy.com, but I just searched for it--maybe they don't carry it. I know that the stores only carry the 17" now--but we intentionally got the smaller one.

 

Have you read my thread on tests? www.elisaact.com does a IgG blood test (be sure to do this, not IgE) of 150 foods for $300, including testing for gluten/casein/salicylates. I recommend them highly. Whether $200 is a good price depends on how many foods they cover.

 

Scan for the survey thread on food sensitivities. Foods affected so many here, yes I think it is worth getting an IgG test. I even had one done for myself and felt better after eliminating the foods.

 

Claire

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Hi there,

 

Well this was an interesting day... my son has been improving every day and today there were only minor vocal tics, hum sound, no motor tics, ie no neck shoulder tics etc. He had decided he wanted to cash in some of his no tv reward so we went to the toy store. The tics increased by the second with his excitement, leg tics, neck tics, jaw click, shoulder shrugs, nose twitches (brand new) Clearly excitement is a trigger, which we always felt was the case but this was so obvious. He picked his reward and the tics decreased through the day but it seemed to be quite a set back. The other thing we did after the toy store is go into best buy to look at LCD tv's - again tics increase with the excitement and continued while looking at the LCD screens - probably because spiderman was on. So...in looking back at my notes on TV, while it is clearly a trigger I also think that the level of tics depends on the type of show that is on , which I have always said, YuGiOh and POKEMON being the worst as they are his favorite so he is most excited. Little Bear and other shows his younger sibling watch do not bring on the same level of tics. So, I did not buy the LCD for now and decided to stick with no tv for a little while longer and then introduce some regular tv but be particular about the show he watches, maybe Franklin or some other video that is not as exciting or shot the same way as the Japanimation.

 

Clarie I had been looking at the LCD tv - not the monitor combo as we use Mac's here, so the monitor could not be used with the computer as well.

 

We are continuing with the supplements and are decreased our antibiotics to the prophylactic amount ( which is very scary for me!!!) I will look into the food sensitivity further. Thanks for the info. I would prefer to figure out all the things I want tested before I draw blood so it is less stressful for my son and we can do it in one shot. Are there any other tests I should be looking into???

 

Happy New Year to everyone and wishing you and your families good health and happiness for 2005.

[Claire]

Alison,

 

The graphics in shows can be big triggers. I clearly remember Spiderman 1 being a noticeable trigger. I am so glad you tested it before buying one.

 

Sounds like the graphics are big with your son...it actually took us a lot of healing before my son could watch an TV or even the LCD for more than 15 minutes every other day. I think it was 6 months of a supplement and metal detox program. I am sure the graphics was a factor also. At least you know how to control the tics now. It may take a few months of healing the immune system before you try again. It may also take a few days for the tics to wear off.

 

As far as the toys, could it also have been the flourescent lighting in the store? In any case, toy stores are full of dynamic color and I am convinced that for some children, the visual aspects create some stress--in addition to the excitement.

 

You must be please that he is doing so well. I hope this gives you faith to continue with your efforts.

 

As for other blood tests, I recommend the www.Spectracell.com vitamin and antioxidant deficiency blood test (no doctor signature required). Also, the Great Smokies www.gsdl.com 'elemental analysis' blood test for metal levels (e.g. mercury, lead...). I recommend them in that order if it is too much blood to draw at once. If the antioxidants come back low, then metal is a likely factor. Mercury for example causes light sensitivity. I think our getting rid of the mercury is the biggest reason that my son is less sensitive (after 2 years of no change in photosensitivity).

 

There are urine tests also (for pyroluria and for yeast, etc..) but they can be timed differently from the blood test.

 

Claire

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Thanks Claire for your input. It never crossed my mind about the lighting in the store.

I was wondering where you have got your info on LCD tvs, tics and photosensitivity, I have been trying to do some research on the internet and am not coming up with anything. I had mentioned as a trigger to the doctors in the infectious disease clinic that we felt there was a light sensitivity issue, so it is so interesting to learn other's have found the same thing. His tics have improved again today, what a setback that was. He is still not as good as he was just before heading out to the toy store. We are also new to the vitamins and I have heard about the "healing crisis" things getting worse before they get better, so that could be a contributing factor. Today by accident he did watch a few minutes of tv, his brother was watching when he went down to get something, I watched him for a few minutes and the tics clearly escalated immediately and decreased after we started another activity away from the tv.

 

Many including you have talked about metals etc. I would assume you determine if this is a problem through the blood work you are recommending, just curious how you then solve the problem?

 

Thank you again for your ongoing support and advise!

Happy New Year!!!

[Claire]

Hi Alison,

 

I found my information on photosensitivity by googling 'photosensitive' + epilepsy. It is the same trigger, though a different neurological reaction. Unfortunately, it hasn't been studied in the context of tic syndromes. I am hoping that someday (maybe starting with the Latitudes site editor's book) the anecdotal evidence will lead to formal research, as has happened with tics and strep, and tics and mercury and tics and omega 3's.

 

Just like most of the info I got on metals was from the autism sites. Not nearly enough research is done on tic syndromes.

 

I have several TV/computer posts, with many of the links I found.

 

Claire

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Hi Claire,

 

Thank you as always for the info. I did look into the photosensitivity, it was interesting to me how many sites talked about tv and driving in the car as triggers. These are the two really obvious triggers to us. The reaction is pretty much immediate, although the car trigger did stop a few weeks ago - wonder if the change in season could make a difference, with it not being so bright?? Previously the car was an immediate trigger and the eye tics seemed to be the worst. The tics in front of the tv are both motor and vocal. I assumed excitement was the trigger we saw at the toy store but your comment on the lights stuck with me and thinking back his tics did not increase on the morning of our trip or in the car ride to the store it was only once we were inside the store. If it was only excitement that was triggering it then it would seem the tics should have been increasing with the anticipation of arriving at the store. This is really quite a guessing game.

The good news is that my son has really improved and has had limited tics today, they seemed a little worse before bed but that seems to be how things go when he does have tics, they increase when he is tired. He had a friend over and I probably noticed 2 subtle tics. So I am glad the supplements do not seem to be having an adverse reaction.

I think my plan might be to keep off the tv until the tics are gone ( lets hope this happens soon) and then probably invest in the LCD screen and try small amounts of very calm shows. The other thing I learned from reading the photosensitivity sites was that my kids sit way to close to the TV. I think I will be putting a line of tape down on the floor and have them sit behind it.

 

Thank you again for your insight.

[Claire]

Hi Alison,

 

Yes, the sites recommend 3 meters (9 feet) from the TV, a small monitor (that's why I like the 15" LCD vs the larger ones), and the overhead lights on in the room, or have lots of daylight in the room. Finally, you can lower the brightness of the LCD monitors--you will find the level where it doesn't impact the picture.

 

 

 

Tiredness/bedtime is definitely a time for tics. I found that after my son was away from TV/computer for a time and his system settled, the other things that triggered tics (chocolate, car rides), no longer had an impact.

 

That is really great news that the tics are that much better! You are smart to wait until they settle as much as possible before reintroducing anything.

 

And yes, the less contrast of lights (especially flickering through the trees) due to season change is a big help. And watch out for strobe lights on Halloween (far away I know), they are a biggy. We got rid of all the flourescent lights in the house (they too have invisible flicker).

 

I just wish that more parents who saw that their kids ticced during TV would be informed that the effect can linger for a week--and be cumulative.

 

Keep up with the supplements--they are an important part of the overall healing to ultimately reduce the photosensitivity.

 

Nice way to start the New Year, full of hope and promise, yes?

 

Claire

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Hi Claire,

 

You are right, we are feeling full of hope and promise in large part to the success we are seeing with the supplements and the feeling of continuing to gain knowledge to help our son.

 

Another interesting day for us...my son continued to be very close to tic free today, minor subtle stuff, he decided to come out with me to do some errands this afternoon. Our first stop was to a baby store to buy something for the baby, it is a store with cribs, baby furniture, strollers etc, nothing exciting for a 6 year old. He also knew we were going in to buy a new stroller cover - again pretty boring. Well, within a few steps into the store he started to tic, leg, shoulder, arm, vocal - all the stuff I saw at the toy store and had contributed to his excitement about getting a new toy for a reward for the no TV. I looked up and saw such bright uncovered flourescent lights - I had never noticed how brightly the store was lit, and would never of made any connection to the lighting until you mentioned it. His tics calmed down once we left the store, our next stop was a grocery store to pick up some basics, again nothing exciting, again tics started immediately upon entering the store, he started to even do some eye squints which we had not seen in weeks, he then started to rub his eyes, I asked if his eyes were sore, he said 'they were not working as a team" interesting analogy. Again the store was full of bright uncovered flourescent lights. We left quickly but had one more stop, a local educational toy store, not the Toys'r'Us we were at a few days ago. I was dreading going in with him but again it was a to be a quick in and out for a birthday gift for the baby, so again he knew he was going to be getting nothing - so no reason to be overly excited. The tics increased a little but not at all in the same way as the previous stores, if the excitement was the main trigger I would expect the tics to have increased much more in a place where he was surrounded by toys. I looked up and while there was some bright lighting, it had shades over it and was not at all the same brightness as the previous stores. It was also not the long bulbs but regular sized bulbs. I would have NEVER made any connection to lighting at all!!! Thank you for you input.

His tics did decrease over the course of the evening but not to the amount they had been prior to going on the errands. Very similar to the toy store experience, it seems to take some time to get back to pre-exposure tics. I am planning on getting the LCD after today's experience. We will wait until tics are minimal - or better yet gone before reintroducing.

 

There are a few other things we have noticed since starting the supplements, which was a week ago. He is sleeping much better, he falls asleep quicker and sleeps longer. He is not having bad dreams and waking us in the middle of the night. ( this was something new that started to happen when he started having tics in August) He is probably sleeping almost 2 hours more each night. I imagine we may have trouble getting him up and out tomorrow for school! He is also eating so much better, he says he is hungry, before it was a struggle to get him to eat before school as he always said he felt full yet he had not had anything to eat. I am sure the antibiotics play a part in this feeling full so with the consistent use of probiotics I am sure this is helping. But it is not just eating more it is being willing to try new things.

 

I feel like I am giving a play by play each day so I apologize for anyone I am boring, but I am getting such great feedback and I also feel that maybe down the road someone else will read this and it will help them in some way.

 

Another question...all this talk about metals, mercury levels etc. How do kids get increased mercury levels? I think I have heard mercury is in some immunizations in the US and UK but thought they were not in the one's in Canada. What other ways can kids get too much mercury in their system. Just curious as you mentioned there is a connection to mercury and photosensitivity and after today's experience and past triggers, I do feel there is a photosensitivity issue we are also dealing with.

[Claire]

Alison,

 

You are exactly right, the play by play you give can help other parents new to the board to know the type of things to look for. Photosensitivity seems to be a fairly common trigger. The round bulbs are incandescent and don't flicker like the long flourescent bulbs, so your observations match the technology difference perfectly. Most schools have flourescent lighting, so you and he may notice some 'regression' when he returns to school tomorrow. Check out the lights when you drop him off, and good luck. You can speak with teachers about any TV/computer restrictions at school, they should be accommodating

 

A good night's sleep is so important, and I am glad to hear that the supplements are helping in a noticeable way already. It took us longer to notice the improvement with the supplements, but it definitely came over time. Although I personally noticed zinc helping with my sleep within a few days.

 

I can't speak for Canada, but in the US they used thimerisol, a mercury-based preservative in the childrens vaccines in the 1990's, thus the exposure. Other metals can be a factor. Riboflavin deficiency can cause light sensitivity, and yeast overgrowth seems to be a factor for some also. You can call your child's peditrician (at least in the US) and track down whether mercury was in the vaccines. I have never done this though--we just gave my son the metals test, after his antioxidants came back so low and found out that way. We supplemented the antioxidants he was low in and it came down measurably over 6 months. My fingers are crossed that the test he just took will show him in normal range again.

 

Claire