Help: Could These Items Be Triggers?

[Dara]

Hi Everyone,

 

I wanted to get some opinions on the following items listed below.

 

Just to refresh your memory, our son Karl Henry, who is 5 years old has been under the observation of Dr. Majid Ali (Denville, NJ) who is an environmental MD. Our son had bi-lateral eye blinking for five months before full blown facial tics appeared one day in April 2004. Since that time we've seen numerous doctors and Karl's tics have waxed and waned from minor to severe. Finally in November, through the help of 'Latitudes' I found Dr. Ali. After running initial IeG blood tests for food intolerances and inhalent allergies and running and organic urine profile test, Dr. Ali determined he had food sensitivities, inhalent allergies, yeast in the gastrointestinal tract, etc. Dr. Ali put Karl on a strict diet, started sublingual drops for the inhalent allergies and started a supplement program. By mid December, we noticed great improvement. It was the first time since April that we saw his tics become minor to on some days almost non-existent. We've stuck to the diet and kept up the supplement routine since that time. There were a couple of cheating days (minimal cheating, one cookie, two slices of turkey cold cuts, etc). On January 19th we noticed a new tic - lip sucking (hard to explain). We saw some other tics such as coughing, clearing the throat, etc. We were in Florida two weeks ago and home last week. By This past Saturday, his tics increased significantly to the point where he now has a coughing/clearing the throat tic that happens about every 5 - 10 seconds, along with a severe 'head cocking forward to the chest tic' that has made a red spot on his chin, eye blinking, nose twitching etc. He's such a mess. We feel so bad for him. Even his teacher noticed them today. When I went to school to pick him up his teacher just looked at me and said 'My heart aches for you'. Obviously she had the opportunity to watch him during class and felt bad for him.

 

I'm looking for advise on the following possible triggers. Any information would be helpful:

 

1. No TV: Today is our 3rd day with no TV. I'm pulling at strings right now, but could he be detoxing from TV???

 

2. The only vitamins I've added since Saturday are the following:

 

-One supplement that contains 200 mg of Echinacea, 150 mg Golden Seal Root, 150 mg Astragalus Root, and150 mg Burdock

 

-100 mg of B-6 (he's already taking a multi-vitamin that contains the following B's):

 

B1 2.5 mg

B2 2.5 mg

B6 2.5 mg

B12 3 mcg

 

-50 mg of Zinc

 

-2 Bromelain chewable tablets

 

***** I increased Karl's B-6 and Zinc because I read that it helps vocal tics. I forgot to mention that he also has a new 'humming' tic (you've probably read about it in my previous posts). Some of the B's cause hyperactivity and could possibly increase tics, right? Do you think the extra 100 mg of B6/day could be a culprit?

 

3. Karl's been drinking a lot of 'Rice Dreams' regular rice milk (not the enriched one).

 

4. Karl's been eating a lot of 'Earth Balance' natural buttery spread. It's non-dairy (Karl's allergic to dairy, thus also the rice milk). This stuff is made from expeller-pressed natural oil blend (soybean, palm fruit, canola seed and olive), filtered water, pure salt, natural flavor (derived from corn, no MSG, no alcohol, no gluten), soy protein, soy lecithin, lactic acid (non-dairy, derived from sugar beets), and beta-carotene color (from natural source). He loves butter and margerine. I thought this was a good alternative?

 

5. Karl was exposed to Chlorine when we were in Florida Feb. 13th - 19th. We noticed that his 'lip sucking tic(s) were a little worse after three days of exposure. We've been home for over a week now, I doubt it's the Chlorine?

 

6. Karl and his brother Graham, both had what appeared and still do have colds, that started in Florida. No fever, just a running nose (sometimes slightly yellow or green mucus) and minimal cheast congestion.

 

7. Karl was exposed to my sisters dog for almost 24 hour period when we got snowed in at her house this past Thursday night. Karl's allergic to dogs.

 

8. Exposure to natural gas. We found a small gas leak in our home that we think has been there for several months. This might add to the tics, but we were in Florida that week and he was still having them even though he wasn't exposed to the gas.

 

I know many of you are probably laughing and saying 'Is she serious'? I know that these all could be triggers, it's just that right now there seems to be so many things. I'm just looking to see if anyone else had come across these things.

 

I will have to say one thing, as bad as Karl's tics have been these last couple of days, I somehow feel strong. Normally I'd be crying my eyes out. Yes, I have that sick feeling in my stomach and don't want to see my beautiful boy in pain, but I know there must be an explanation as to why all of a sudden the tics have gotten worse. We had a bad outbreak of tics in Sept. and early December and as you probably know, just when you think they'll never go away, they somehow disappear. I'm hoping this is the case for us.

 

One more note and I'll sign off for the night. I sent Karl's urine off to Bio Center Lab in Wichita, Kansas today for the 'Pyroluria' test. We also had blood drawn today (we haven't had it done since Nov. 2004 when Dr. Ali ordered the IgE test). Our doctor also ordered a stool test for parasites and a urine test for Lyme disease, in addition to a Strep titer, test for an auto-immune disorder, rhumatic fever, and maybe a couple of other ones. It's been some day. Take care all.

 

Dara

[Guest Guest_Jean]

Hi Dora,

 

Sorry to hear your son's tics got increased! I just want to let you know that my son can never handle B's (B6, B-complex). They always make his tics increased. He currently takes P5P (PYRIDOXAL 5 PHOSPHATE). He seems to be able to handle it. I would suggest to contact with you environmental MD before adding any new vitamins to your son. Have you ever done heavy metals test? You may also want to ask your DAN doctor about the test.

 

My heart with you and your son. Take care yourself too!

 

Jean

[Dara]

Hi Jean,

 

I have heard of the P5P but didn't know what they were. I'll look into it. Also, my son was tested for heavy metals and the only one that came back elevated was 'Cadmium'. I contacted a DAN doctor yesterday to get a second opinion.

 

Dsra

[Frank_Sm1th]

Dara'

 

One reason my wife insists on home-schooling our DS 10 is the cleaning chemicals in his old school caused bad behavior and tics. All kinds of artificial and even natural aromas can set people off. Also, just plain stress and pressure can cause tics.

 

Frank

[Guest Guest]

Hi Dara

In our case there was no detoxing from TV, and I haven't seen any post where this was the case.

I would be very suspect of the new things you have introduced.

Herbs such as Echinacia etc are very high in natural chemicals such as salycilates and Failsafe members have often reported reactions.

Also check the rice dream for any flavors etc.

If possible keep to what he was eating before hand, otherwise you will be totally confused as I was.

 

Thinking of you

Marina

[Dara]

Frank,

 

It's funny that you mention the chemicals in school. I just mentioned to my husband that during the 2 1/2 hours each day that he's in school, Karl's teachers clean the desks with bleach. I always smell it in the hallway when I go to pick him up. I'm going to talk with his teacher tomorrow. I don't think this is the reason why he had the flair up but it could have added to it. Thanks for the information.

 

Dara

[Dara]

Marina,

 

Don't ask me why I introduced all these things at once. I stopped giving Karl the B6 today and will stop the zinc tomorrow and also the other one with the echinacia. Could you please tell me what salycilates are? I keep hearing about them. I think I better start reading up on the Failsafe diet also.

 

As for the Rice Milk, here are the ingredients:

 

filtered water, cut organic brown rice (partially milled), expeller pressed high oleic safflower oil and sea salt.

 

Although my sons tics are not good these last four days, the no TV is going great. Look for my daily posts.

 

Thanks,

 

Dara

[Dara]

Can any of you answer these two questions:

 

1. Wheat/Soy:

 

Our son Karl did NOT test positive to wheat or soy in the IeG blood test. Although the results showed that he didn't have a reaction to these two things, could he still be allergic to them? Should I keep him off of them as a precautionary measure? or is that silly?

 

2. Fluorescent Lighting:

 

Our basement has a drop ceiling with fluorescent lights. I tend to think that these lights could be a trigger for my son. If not using fluorescent lighting, what type of lighting is recommended for children with this sensitivity?

 

 

Thanks a bunch,

 

Dara

[Guest Guest]

Dara;

 

The B's increased my sons anxiety dramatically and so did the zinc, thus causing an increase in tics especially vocal. Supplements are great and will work but this site taught me to introduce these supps slowly and one at a time because reactions to them can occur and your left guessing which one did it. I tried many things very quickly because I just wanted these tics to stop as quick as they came. You did get to your baseline with virtually tic free days and that is great and you should be applauded. Remember he is 5 and his body and mind are growing every moment. School is a challenge and as parents we need to know that learning to read, math and just plain control of yourself sitting in a classroom presents such pressure onto them. Pressure that some are unable to express externally and so they keep it in casuing stressers that deplete the immunities. I am new here but what I have learned is that the body can heal itself with proper nutrition but the mind has to be healed as well. The no screens was a great idea and it did work with us, but that was because TV created stress unknowingly to all of us. Even Allsion stated in previous posts that her son watches LCD TV but only shows that are less stressing I think her son called them "baby shows"? Once the TV was gone from my home (we watch about an one hour a week) we learned the art (and I mean it is an art) of communication and I was shocked to find out that this child of which I had created and thought that I knew, had so many issues, fears, and perceptions that I did not know. Who would have thought that a 6 year old could have so many fears. At this age it is supposed to be about the innocents. I have taken many steps backwards to find out what makes my son tick and although the answers are still unclear I can only provide nutrition for the body, a channel for communication for the mind and a safe loving environment to the spirit. The rest is in Gods hands. Slow and steady wins the race. You are on the right path and your child is very lucky to have a mom like you! Good Luck from one NJ mom to another.

 

 

mmazz (marie)

[Dara]

Marie,

 

As one NJ mom to another, would you mind sharing the name(s) of the doctors you've seen? As you know from my posts, we've been seeing Dr. Majid Ali, from Denville, NJ. He's an Environmental MD. I just recently made an appointment for a second opinion with a DAN doctor, Dr. James Neubrander from Edison, NJ. Our appointment is scheduled for May.

 

Dara

[mmazz]

Dara,

 

I have only seen his regular ped, which was of no help at all. I went to a nutritionist who taught me that anyone can hang a shingle. Lastly, I went to see Dr. Lazar a ped neurologist (Robert Wood University Hospital). She was comforting but her advise was not to change anything...the old wait and see approach. I did not want my little one to think there was somehting wong with him so I layed off the doctors for a while. I called that doctor you have an appointment with in Edison but the process of website application and voice mail kind have left a bad taste in my mouth. I truly had enough of take a number and ....NEXT. I would appreciate it if you can keep me posted with your experiences with theses docs and I will keep you posted with any new info that comes my way.

 

Marie

[Ronnas]

Hi Dara,

 

I hope all is going well. A few years ago when I was new to all of this I also tried EVERYTHING all at once. I soooo wanted to help my son. He use to beg me to make his neck tics stop as they were so painful by the end of the day. It broke my heart at the time. I have posted in the past about this experience. When I introduced everything too quickly I was not able to tell what was helping and what was making things worse. My best advice for anyone is to start slow and make changes gradually so you can really evaluate what helps. In the end I found that my son reacted poorly to fish oil and any chelated vitamins. With time it all becomes MUCH, MUCH easier. You are doing a great job. I also find that if the TV is on the kids will sit and watch but if I simply don't turn it on they go find other things to do...none of us miss it much but at this point I don't really need to limit it much anymore. I just find it quieter in the house without it on.

 

I was reading with interest a web site last night that really advocates not doing dietary intervention, vitamins etc for tics etc. I guess I was kind of shocked because we have seen such incredible success with removing dairy especially and my son really responds well to essential fatty acids and Bonnie's vitamins and I don't think it is ever a bad thing to cut out TV, PS2 etc. although I know some see it as a cruel thing and can remember debates on-line from years ago that those that chose this were "overzealous" parents who were obsessed with their kids tics.

 

I was watching CNN a few weeks ago about the new "games" coming out at a toy exihibition in Las Vegas and it was talking about the new one for PS2 where kids get to "exercise" while they play and how it was expensive but parents were willing to do "anything" so that their kids got exercise but were concerned about spending so much on a game that their kids might lose interest in. Well I was kind of shocked because mostly I thought...why not sign up for swimming lessons, martial arts, soccer, wall climbing...anything rather than rely on a video game. We have our sons in a mixture of both team and individual sports and they love it. I am so glad spring is coming and we can switch to outdoor sports.

 

Anyways, now I am rambling...Dara...I just wanted to let you know my son was 5 years old when everything started...he is turning 9 next month and is doing very well...we still have little ups and downs but it is NOTHING like it use to be. Take Care,

Ronna

[Dara]

Marie,

 

Since last April 2004, we've taken our son to so many different doctors - Robert Wood Johnson, Childrens Hospital of Philadelphia, a homeopathy doctor, an allergist, a nutritionist, his general pediatrician and finally Dr. Ali who is the Environmental MD in Denville, NJ. Dr. Ali has been the most helpful so far at least with respect to ordering some of the right tests (ie bloodwork (IgE) and urine tests for yeast/bacteria and heavy metals).

 

Last summer when this all first started, I made an appointment with Dr. Neubrander and had a phone consultation with him. Let's just say that I didn't like the way our phone conversation went, so I cancelled our appointment. In hindsight, I wish I would have kept it. Recently I called and scheduled another appointment (May 28th) and have since started the process of reading all his documentation and filling out forms. From the looks of the paperwork it's extensive and will take hours to complete.

 

I just feel like he might be able to uncover something that Dr. Ali hasn't. Also, I'm hoping to build a relationship with Dr. Neubrander. Right now, Dr. Ali doesn't even know who my son is. Our last two visits consisted of me meeting with his partner, Dr. Judy Juco. That's fine and all but I want Karl's doctor to know him and us.

 

I'll be happy to keep you posted.

 

Dara

[Dara]

Hi Ronna,

 

It's good to hear from you. I pray that our son does as well as yours has done. As I've mentioned in previous posts, our son had been doing really well since being put on a strict diet and starting supplements, but recently, we notice that his tics are coming back again and I just don't know what to do. He's especially had an increase in vocals such as humming or making little 'um' 'um' sounds while he's eating or just playing around the house. He's also making a growling/grunting noise as of yesterday. Of course I fear that he'll wake up and instead of the humming he'll start yelling. Anyway, we're keeping with the strict diet and will continue with the supplements. Last monday, we had some new blood drawn to test for Lyme, strep, auto immune disorders, etc. This was all done back in May 2004 and the results were negative, but our EM (who is new to us since November 2004) wants to do them again. Our son did test positive (through a urine test) for yeast and bacteria (Clostridia including C. Difficile) and is on Nystatin and Culturelle to combat it.

 

As you've probably read, we have an appointment with a DAN doctor at the end of May for a second opinion. I'm hoping he might uncover something that our EM hasn't. In the meantime, it's a waiting game. As a side note, our son also tested positive (through a urine test) for the heavy metal 'cadmium'. Our EM recomended zinc as a natural chelation drug. I started giving it to him last Saturday when the explosion of tics started and have since taken it away. Last Saturday was when we started the no TV in addition to extra B6, Zinc and Echinecia. I'll be in touch.

 

Dara