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[mmazz]

Hello,

 

First I want to thank everyone who posts here. Before finding this site, I thought I was very alone. My son just turned 6. For a couple of years he blinked. No big deal. He was always sensitive to light and it semmed that watching TV or brite sunny days or brite lights strained his eyes. Turning 6 made all the difference. Stress of his first year in school, the Holiday Play he was in and just Christmas in and of itself made for a tic feast. He started to role his eyes, bend his head up and down slowly as if he has a crick, mostly when when watching TV or when very stressed or excited. I called his DR. and was diagnosed over the phone as chronic motor tics. I was not happy with an over the phone diagnosis, so I went into see the Dr. who made his jump on one foot and alternate. Made him touch his finger to his nose a few times and said he's fine, but has chronic motor tics. I can medicate him so that you can be at ease, or he can just tic...

I did not opt for the medicine, I opted for the life. Since my household is somewhat stressful I restructured the environment. Heal the heart and the rest will follow approach. I noticed that he would have frequent errections and that bothered him for months. Since his diet was all dairy- cheese, milk and macaroni with parm cheese, I figured that the hormones in the dairy was a direct link. Two weeks without dairy cured that issue and he is now more comfortable. I started soy milk and fruit smoothies made from vanilla soy milk and ice with some banannas which is good. I went the health food store and was advised that a B complex would help with relaxation and that Omega 3's were good for the brain and eyes. So I am two days into these supplements. I am now 18 hours without screens and today he is much better than yesterday. Tuesday I have an appointment with a nutritionist and hopefully he will guide me. I am awaiting a packet from the Childrens Hospital to see if he would qualify to be seen by the ped. neurologist, but the nurse said it is quite likely not complex but she'll have the Dr. rate him anyway. So its wait and see. I am open to some suggestions, I am hiding my fears, tears and pain and have no shoulders to cry on. So thanks for those who posted that allowed for hope to be seen from this worried moms' eyes.

[Claire]

mmazz

 

Best of luck to you. Sounds like you are a great detective. The milk issue could be the casein too and not just the hormones.

 

Since you notice the TV trigger, I bet a week with no screens (that means no computer, movies or Gameboy too!) will do wonders. This is the typical age (6-8) when photosensitivity develops. If it does make a big difference, you can start looking at the threads on food triggers, artificial ingredients, yeast, mercury/metals, pyroluria, zinc and other vitamin deficiencies...

 

Good for you for not doing the drugs. That is just crazy at this age in my strong opinion. It isn't a social issue yet, you have time to heal the body. It does take commitment. But just eliminating the screens (get some good book tapes and building toys, and friends to play with!) will likely show you that you can control this. Of course if it does work (the screen elimination)--it took a bit of healing before our son could handle them again, and then using an LCD monitor.

 

Just keep posting progress and questions--soon you will be like the regulars here and have an instant 'family' of people with similar fears and tears, and now...hope and success.

 

Claire

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mmaz,

 

Hi there - I don't really have any advise as I am new here as well but wanted you to know you are not alone in this, I too felt great comfort realizing we were not the only one's dealing with this. I too spent endless hours hiding my tears etc. I truly believe to date this is the most difficult thing I have every faced in my life. Seeing your child change before your eyes is heart breaking. I just wanted it to all go away. My situation is similar to yours in the my son also had minor tics for a few years, not impacting him in any way and I was told to ignore them. This summer (looking back) they did increase over the month of August, particularly when he went to see the YuGiOH movie, at the end of the month he had an explosive onset of severe tics, where we had to keep him home. I was not sure how he was breathing some of the time with all the gasping, coughing, sniffing etc etc etc. His tics were literally one a second for two days straight and included complex motor and vocal tics. He was diagnosed with PANDAS and now I feel he probably had an untreated strep infection through August and that was when we were starting to see the increase of tics. On the third day of antibiotics tics were 90% gone, it was like they left as quickly as they came. So I am not sure if you have looked into the possible strep/illness connection - if he has been sick over the last few weeks as his tics have been increasing. I won't go on in length about what has happened since then as I have already posted that info in my New Here post. I would love to hear how your son does on the vitamins. We too have just started a vitamin routine and have been off TV now for almost 2 weeks. He has adjusted very well to not watching.

Regarding the medication I was initially prescribed Chlonidine but from my research on PANDAS it seemed we should be treating with antibiotics and not covering up the symptoms of the strep infection, but getting to the root cause. He has not taken the Chlonidine and to date the antibiotics seems to really make a difference, although I am now really trying to get at the root of the cause of the strep/illness etc. so am focusing on building his immune system. I think we are lucky to be dealing with this when our kids are 6 - I am not sure how your son manages but mine has no other difficulties and none of his friends have ever commented on his tics, it is amazing how oblivious 6 year olds can be. He plays hockey, is very social and is doing very well in school. And... absolutely charming and beautiful!!!

 

Wishing you and your family health and happiness in 2005.

[Claire]

Mmazz,

 

Truly, the success rate on this board for people who have stuck with trying different things is phenomenol. I think 80% have seen substantial improvement--most to the point where the tics are not noticeable to others, though parents still seem to notice even the subtle ones.

 

Some of us have had 100% remission (my son was cured with no screens, and Jeff's children were cured with no artificial additives, Heather's son had no tics with yeast control and supplements, Jennifer's son had no more tics after taking the right Omega 6/3 balance). I think Ronna's son's tics are all gone also.

 

The programs for our children must continue, but as long as we are doing them, our children have no tics. Some of us seek a more permanent healing, and thus are still looking beyond removing the trigger for a long term solution.

 

But note that it took trial and error for most to find what worked best for their children. Plus most of us had more than one thing going on.

 

I believe that for the vast majority who come to this board and read read read and try try try new things they will find a major improvement. The biggest challenge is to make the transitions for your child pleasurable.

 

Alison was creative in rewarding her child for no screens. Others of us have become cooks for the first time to offer healthier choices that don't include foods our kids are sensitive to (that is me!).

 

By the way, before getting a new pediatrician, I would look at the doctor lists at the top of this thread. Most MD's don't know about this methods. If you find a doctor on any of those lists in your area, you can call them over the phone to see if they have successfully treated children with tic syndromes.

 

Happy New Year!

 

Claire