Light Sensitivity and Supplements

[Betty04]

Hi,

 

I could use some advice. Based upon the IGG testing at the end of March, I started a Gluten free diet. Within a couple of days, my son's tics disappeared! The next week I had my feedback with the DAN doc and we continued the GF diet and also added casein free, soy free and nut free. He began Vit B 12 shots on 3/26. His probiotics were changed from 3 down to 2 (we keep the prebiotic and added a different probiotic). He was also given supplements of Cal (500mg) and Magnesium (250mg) and Vit B6 25 mg. He is 3 years old so giving the Cal/Mg and B6 were a daily struggle, but last week I started the transdermal B6 cream and a compounded liquid of the Cal/Mg that are going much easier.

 

My question is this.... 2 weeks into the GF diet (1 week with the CF, soy and nut free) and one B 12 shots, we had a setback. Things were great, no tics and then in preschool he was at an event on stage and all the parents taking pictures with the camera flashes triggered his tics immediately and 4 weeks later things are no better! He wakes up in the morning and begins to tic as soon as he see daylight! Does anyone have any experience with supplements that might help that we don't currently take? Or do I need to give things more time?

 

I have a follow-up with the DAN doc next week. I plan to ask about folic acid as that seem to be missing with the other B vits? Any suggestions would be great as I would like to ask the doctor about supplements that others found success with. I guess what I am looking for is something that addresses light sensitivity as it seems he is so vulnerable to light and with summer coming the sunlight is obviously a concern!

 

Thanks so much!

[Caryn]

Betty,

Was he tested for pyroluria? Our ds, also GF as per IgG test, was dx'd with pyroluria. I don't know how severe the IgG results were for gluten on your son's test, but long term gluten diet in the gluten intolerant will cause gut dysbiosis and lead to imbalances that take some time to be corrected. I would be surprised if the GF diet would work in a matter of days indefinitely. Gluten takes a long time to get out of the body. Also, stress is a major factor as well (especially with pyroluria). You could get an at home pyroluria test and will get results in about a week.

In our case the gf (and corn free as per IgG) diet works great to stop tics, but took about five months before we were tic free. Any ingestion of gluten or corn will cause a flair up that lasts about three days. I have also cut out any foods with neurotoxins in them. (We do a feingold diet as well but do eat some salicylates).

One last note, It is quite possible you have reintroduced a food that actually contains gluten (like Rice Dream Rice Milk) or a vitamin that uses gluten to bind the nutrients. This will cause flare ups.

For example, I was seeing constant teeth grinding last year after the diet change and could not for the life of me figure out the cause. It finally dawned on me that I had to cut out the citric acid in my son's diet as it is a corn derivative.

Hope this helps.

Caryn

Pyroluria Info

[Chemar]

Hi Betty

there is strong anecdotal evidence for photosensitive induced tics here

 

my son avoids regular movie theatres as the flashing lights trigger his tics as do fluorescent lights and watching flashing/explosive TV/videogames in darkened rooms (we use daylight lamps and LCD screens to avoid this)

 

Claire has documented photosensitive induced tics in many threads in the past, and has a lot of info on it in this one

http://www.latitudes.org/forums/index.php?showtopic=852

 

the flashing cameras could well have triggered something!

[CSP]

Betty,

 

I forgot how old your son is, but wanted to add, when my son was 8, 9yo we never thought about it, only thought it was odd, but he would look at the sun during baseball practice and games. Just a quick look up, he would not do that in the summer while playing outside. He is 14yo now and does not have that tic anymore. Just wondering how long stress levels stay high, was he nervous about the event on stage? I think my son would be nervous about his games, and that is why he would look at the sun.

 

I can see that excitement is a real trigger for my son. As soon as the Capitals (hockey) were losing last night his high pitched squeeking vocal tic came back. He has only had a very soft "puffffff" vocal the past few days. I realize the Caps had to win last night's game or they would be out of the play-offs. This, I believe is what stressed him out. He was ok this morning, but will have to see how tonight goes, winner takes the series.

 

C.P.

[faith]

Betty,

Where are you giving the shots (arm, buttocks)? Are you still giving it, And how many days apart? We do folic acid with it, usually that is given together, but not always. Did you start the shots and the cal/mag/b6 at same time, or after?

 

Faith

[Betty04]

Caryn,

 

I am horrified... my Rice Dream says gluten free... is that not true? Thanks for sharing your experiences... i will check if we tested for pyroluria. Betty

 

quote name='Caryn' date='Apr 22 2008, 08:09 AM' post='22735']

Betty,

Was he tested for pyroluria? Our ds, also GF as per IgG test, was dx'd with pyroluria. I don't know how severe the IgG results were for gluten on your son's test, but long term gluten diet in the gluten intolerant will cause gut dysbiosis and lead to imbalances that take some time to be corrected. I would be surprised if the GF diet would work in a matter of days indefinitely. Gluten takes a long time to get out of the body. Also, stress is a major factor as well (especially with pyroluria). You could get an at home pyroluria test and will get results in about a week.

In our case the gf (and corn free as per IgG) diet works great to stop tics, but took about five months before we were tic free. Any ingestion of gluten or corn will cause a flair up that lasts about three days. I have also cut out any foods with neurotoxins in them. (We do a feingold diet as well but do eat some salicylates).

One last note, It is quite possible you have reintroduced a food that actually contains gluten (like Rice Dream Rice Milk) or a vitamin that uses gluten to bind the nutrients. This will cause flare ups.

For example, I was seeing constant teeth grinding last year after the diet change and could not for the life of me figure out the cause. It finally dawned on me that I had to cut out the citric acid in my son's diet as it is a corn derivative.

Hope this helps.

Caryn

Pyroluria Info

[faith]

Don't panic,

Rice Dream used to have some form of gluten in it, but I believe I read somewhere recently that it is now gluten free, and if your box says it is, then it is probably the one they changed and that's why it is labeled gluten free.

 

 

Faith

[lurker]

Betty,

 

To my knowledge, Rice Dream WAS not gluten free, and then some was and some was not depending on its manufacturing facility (some labels said gluten free, some did not). Now it appears that it is all gluten free, and I have not seen a carton without the GF designation for a very long time. If you have always seen the GF on the carton, I am certain it is gluten free.

 

Tami

[lurker]

Betty,

 

Don't ask me how I know this, but there are D2 receptors in the retina (part of eye that is light sensitive). It is my understanding that when stimulated, dopamine turnover is accellerated (locally).

 

It is widely thought that increased dopamine or, more likely, extra-sensitive D2 receptors in specific areas are the catalyst for tics.

 

There is no authoratative basis for that connection. I made it myself, so I could be way off.

 

KIM, HELP! (I've been reading things I don't understand again!)

 

Tami

[Caryn]

Betty, Tami, All:

 

I had much confusion over this issue too. It is much talked about in celiac circles, LET ME TELL YOU!!!

Rice Dream has NOT EVER changed their formulation. It is the same as it always was. Some celiacs say it is okay, some say no way. It is a matter of preference and tolerance, really.

 

Here are some facts, taken from a thread written in 1994:

I just got off the phone with David Nickerson, Consumer Affairs Manager, Imagine Foods (415) 327-1444.

 

David confirmed to me that _all_ flavors of Rice Dream use barley enzymes in the preparation of the rice. I had been warned of this fact by California Natural Products, which ... uses these barley enzymes for making [Rice Dream's]rice syrups. California Natural Products told me that although they do their best to wash out all the barley, there is the potential for gluten residue and they cannot certify their product as gluten free.

 

David said that many Celiacs report using Rice Dream without having a problem. Each person must make their own decision about this issue. Some Celiac support groups warn that there is no established minimum level of gluten ingestion without damage.....

 

In addition, David confirmed that the vanilla used in Vanilla Rice Dream is prepared from grain alcohol. Many celiac groups warn that products prepared with grain alcohol can also contribute a gluten residue to the end-product (unless it is 100% corn alcohol)...[others disagree with this]

 

David said that his company is aware of the gluten residue issue but feels at this time that the flavor of the product would be compromised by using other methods of preparation....The following quote is from a letter from Jeannette Toneros, Consumer Relations Manager of Imagine Foods, manufacturers of Rice Dream...

 

"...Our patented enzymatic process utilizes enzymes, which are grown on various grains including barley, to convert the complex carbohydrates in brown rice to naturally occurring sugars...the actual grains used to grow the enzymes are discarded after the enzymes are extracted...The barley protein in the final Rice Dream product, if present at all, would occur in microscopic parts per million amounts. In addition, the enzymes are essentially used up in the process...It is therefore highly unlikely, but still possible, that gluten may exist in minute amounts in the final product."....Sorry to complicate things, but there are actually 3 gluten issues for Rice Dream:

 

(1) Barley enzymes used in processing the rice. This was covered in yesterday's post. It is still a problem for Rice Dream beverage, but not a problem for the puddings and frozen desserts.

 

(2) Grain alcohol used in the natural flavoring. This was also covered in yesterday's post. For those who deem grain alcohol off-limits, this is an issue with most puddings and frozen desserts. Check the label - if it says "natural flavors", this issue exists.

 

(3) Some of the flavors of the puddings and frozen desserts use barley malt as a product ingredient, particularly chocolate and carob candy. Check the label for "malt".

 

Here is a recent post discussing the new marketing strategy:

http://surefoodsliving.com/

According to the customer service rep, Rice Dream has not changed their recipe. They now test “each batch” for gluten and say that the barley enzyme content is so small that the product can be considered gluten-free.

 

Currently, there is no U.S. standard for labeling something gluten-free, although it is in the works. You can read about the U.S. Food and Drug Administration’s proposed gluten-free labeling rule. For information about current worldwide gluten-free standards, see celiac.com’s explanation.

 

Now, after all that bad news, may I just say that there are several other brands out there that do not use barley enzymes in the recipe. Also, there is a product called Darifree that works in baking (but contains corn so we don't use it!). Also, if you are worried about the grain alcohol in products I can almost certainly assure you that 99% of the time nowadays the alcohol comes from CORN and not Wheat in the U.S. For us it doesn't matter.

 

--Betty--

I would say that if you use it occasionally it is fine. If your son knocks back a quart a day I would switch brands.

 

Tami,

Very interesting theory on the effect of dopamine on the retina.

 

Caryn

[lurker]

Caryn,

 

I guess I will have to use the stuff with carageenan in it after all!

 

Is your son light sensitive too? I know he has experienced blinking in the past, but does he seem overly affected by direct sunlight or movie screens? (Just curious, and my Mundchausen by Internet has been activated with regard to retinal dopamine processing.)

 

Thanks

[Caryn]

We must be on simultaneously. LOL

He was. Very much so.

Until we treated him for the pyroluria.

It will come back on occasion when he is lacking sleep or hasn't eaten the greatest (not necessarily gluten or corn cross contamination, but just 'junky') I am not religious about the vitamins. I give them if I see that he needs them. So not as a preventative measure on a daily basis. I just saw a salicylate sensitivity develop some time into the high vit dosing and after a google search I decided to cut back. I don't know why this happened exactly, maybe the GF diet cleared the gut issues that led to the pyroluria in the first place and the once beneficial doses became kind of toxic? We haven't gone back for our lab 'retests' to see where he is at now after being on the diet a year.

Caryn

[Caryn]

Geeze,

I didn't even answer the question.

Screens.

[samsmom]

I'm really interested in what you've been discussing about light sensitivity. Sam goes thru phases of looking at lights - not staring, just kind of quickly glancing at them. He had a baseball game a few days ago and it was a very bright sunny day. He was looking up toward the sun constantly, and his tics, which were already there, became even more exaggerated. It was one of those games that you just want to get done with ...

 

Anyway, I had him wear sunglasses because I knew it was very bright, but it didn't really help. Does anyone know if you can get glasses that will help with that kind of thing over the summer? (We're in the North West so don't need 'em the rest of the year ) Or is there any other way of dealing with that? Has anyone been to an optician with that kind of issue?

 

Just wondering..

[bmom]

I know that my son has light sensitivity. I also have noticed his pupils to be dilated at certain times and often when he is ticcing more. Basically dilated more than what I would be considered as normal and when he is going through tics even more so. Anyway, I have actually been thinking that his problem is either PANDAS or photosensitivity, or both. I was thinking and have searched if there were some sort of contacts that could help with this. You would think so. Early in the process I thought I had found something, yet I didn't write it down and I haven't found it since again. I know it would not be a permanent fix, but possibly some sort of help. He reacts to stores, screens and sometimes sunlight. How do you order the pyloria test? Caryn, do you plan on having your son stay gluten free forever? Did you go to DAN doctor or do the IGG on your own? We basically have been doing no screens for the last few weeks and I went to the school this week and told the teacher no more screens. Who knew there was soo much in the school system- she has them watch Bill Nye almost daily! Ugh! Anyway, we cant do this forever and if he is Pandas, I am wondering if going to a DAN doc. would be of help or not. We have scheduled Dr. Demio for Sep. Has any moms with PANDAS gone this route? I know Michelle did.

Oh, and yes we did go to an optitrician who said he did have more pressure in his eye than normal. Anyone else experience this? We are testing monthly to see if it is glaucoma, yet he has not been able to do the glaucoma screening on my son as he is too sensitive to the light.