Is this TS? And what do I do now?

[gfam]

Newbie here...

 

My 10 year old son has been having some horrible episodes of extememe hyperactivity the past 3 weeks. The first & worst episode was triggered by food dyes I think. Yellow & Red. Is is extrememly hyperactive complete with tic's. Behavior varies between pacing for hours on end, rolling around on the floor b/c he's trying to stop it so bad. Unable to sit down. Making noises & can't stop. Shaking. etc... We put him on a preservative/additive/dye & sugar free diet immediately.

 

Let me just list some things

 

He stuttered for 8 years. Wet the bed until last year.

Allergies/asthma

Always hot blooded

ADD

Many annoying habits that we wrote off as just being annoying. Like making noises & not realizing he's doing it.

Started these episodes about three weeks ago.

The more he tries to stop the worse it gets.

They always start right before a meal. Seems to be connected to glucose regulation. If he has a good snack between meals he's usually okay.

A good meal will stop it.

He can tell when they are going to start.

He describes 3 different types of episodes.

Unable to write very well during episodes.

Doesn't remember much of what happens during the worst of times.

Forgets how to do some tasks during these times.

Says he can taste baking soda prior to an episode & craves it terribly during an episode. He will eat it by the spoonful during, but does not want it when he is feeling fine.

Strong Epsom salts baths will almost always stop it.

He can stop when he is reading.

Triggers seem to be additves or preservatives. Dyes etc.

He had been doing good for 3 days & one hot dog sent him into an episode with in 3 hours which set him back for three days.

Unable to stop whistling.

He has periods of calm and is just fine.

 

I'm not sure what to say. We have yet to see an MD, but did go to two ND's and they knew nothing about TS. We do have TS in the family and would like to see if I am on the right track thinking this may be TS. If so, what do I do now? What kind of doc do I even need to go see? What kind of tests? I am at a loss & would really appreciate your opinions.

 

Thanks in advance. I'm so overwhelmed and every second of the past 3 weeks have been spent trying to do something to help him.

Donna

[michele]

Welcome. Since you have a genetic family background for TS it is quite possible this is what your son is experiencing. It seems his sympoms are waxing and waning during these episodes. It is great you have done so much investigating and paying attention to details that seem to be bringing out his symptoms. You are doing great by eliminating foods that seem to be triggers. This has been proven to help alot with Tics. TS seems to manifest itself into several other disorders. That is why you are seeing the ADHD, OCD that many times accompanies TS. I suggest you research for a good pediatric neurologist in your area that specializes in tics and tourettes. Where are you at? It would be a good thing to have a ped neurologist in place if you decide you want to go the MD route. Check out some websites on tics and tourettes. Here is the link to the National one. It is a great resource. We are here for you.http://www.tsa-usa.org/ All the best.

 

M

 

 

Newbie here...

 

My 10 year old son has been having some horrible episodes of extememe hyperactivity the past 3 weeks. The first & worst episode was triggered by food dyes I think. Yellow & Red. Is is extrememly hyperactive complete with tic's. Behavior varies between pacing for hours on end, rolling around on the floor b/c he's trying to stop it so bad. Unable to sit down. Making noises & can't stop. Shaking. etc... We put him on a preservative/additive/dye & sugar free diet immediately.

 

Let me just list some things

 

He stuttered for 8 years. Wet the bed until last year.

Allergies/asthma

Always hot blooded

ADD

Many annoying habits that we wrote off as just being annoying. Like making noises & not realizing he's doing it.

Started these episodes about three weeks ago.

The more he tries to stop the worse it gets.

They always start right before a meal. Seems to be connected to glucose regulation. If he has a good snack between meals he's usually okay.

A good meal will stop it.

He can tell when they are going to start.

He describes 3 different types of episodes.

Unable to write very well during episodes.

Doesn't remember much of what happens during the worst of times.

Forgets how to do some tasks during these times.

Says he can taste baking soda prior to an episode & craves it terribly during an episode. He will eat it by the spoonful during, but does not want it when he is feeling fine.

Strong Epsom salts baths will almost always stop it.

He can stop when he is reading.

Triggers seem to be additves or preservatives. Dyes etc.

He had been doing good for 3 days & one hot dog sent him into an episode with in 3 hours which set him back for three days.

Unable to stop whistling.

He has periods of calm and is just fine.

 

I'm not sure what to say. We have yet to see an MD, but did go to two ND's and they knew nothing about TS. We do have TS in the family and would like to see if I am on the right track thinking this may be TS. If so, what do I do now? What kind of doc do I even need to go see? What kind of tests? I am at a loss & would really appreciate your opinions.

 

Thanks in advance. I'm so overwhelmed and every second of the past 3 weeks have been spent trying to do something to help him.

Donna

[gfam]

Thank you Michelle,

 

I am most interested to find out if this baking soda craving during episodes and seeming problem with glucose regulation are associated with TS. Episodes seem to always happen if he hasn't eaten prior to a meal and will go away with in the hour once he eats a meal. Plus the feeling hot & flushed during bad times. These seem to be keys to me, but I'm not sure how.

 

Do these symptoms sound like any of your kids?

 

Thanks!

 

Donna

[lurker]

Donna,

 

I wish I had more time to respond now, but wanted to quickly mention that someone around here (can't remember who) gives her kid a protein snack every three hours to keep ocd/tics at bay.

 

Also wanted to mention that you should look for Doris Rapp's books on food allergy in kids. (I think that is her name; someone here will be able to correct me if it is not.) She is an allergist and she made many of the observations you have while allergy testing kids. I thought of her book immediately because she mentions giving the kid sodium bicarbonate or Alka Seltzer Gold during the testing if she evokes a strong allergic response. Apparently, it inhibits or limits the reaction. The baking soda craving sounds like it may be driven by instinct.

 

I would suggest trying the Alka Seltzer Gold instead of the baking soda next time, but if you stick with baking soda, PLEASE buy one of the aluminum-free brands. Baking soda has the absolute highest concentration of aluminum you will find on the grocery store shelves.

 

Tami

[lurker]

Donna,

 

Sorry I didn't answer your question directly. The baking soda craving sounds like it could be associated with food allergy; food allergy, or rather allergy in general, is associated with TS. Also, I believe the mom who was giving the snacks/meals on the three hour intervals was doing this to regulate blood sugar.

 

Tami

[gfam]

Wow, interesting. Can you tell me if Arm & Hammer Baking Soda has aluminum in it? It doesn't say so on the box. I thougt it was baking powder that could be high in aluminum.

Thanks.

Donna

[gfam]

Is it this book?

 

Is this your child? : discovering and treating unrecognized allergies

[lurker]

Yes, that's the book.

[lurker]

Donna,

 

You're right about baking powder being the aluminum problem. I assumed baking soda was just as bad because they are closely related compounds and I use the Red Mills baking soda that says "aluminum free" on it. Sorry if I scared you!

[kim]

Donna,

 

I'm thinking that craving the baking soda has to do with the Ph and acidity issues with the gut. Does your son have reflux issues? Does he crave sugar or carbs?

It seems that your son maybe telling you something important with that craving.

You might want to read these....

 

 

ARM & HAMMER® Baking Soda - BASICS - THE MAGIC OF ARM & HAMMER ...Baking Soda, alias sodium bicarbonate, is a naturally occurring substance that is found in all living things, where it helps regulate their pH balance. ...

www.armhammer.com/basics/magic/

 

 

http://www.nlm.nih.gov/medlineplus/druginf...er/a682001.html

 

Do not use sodium bicarbonate for longer than 2 weeks unless your doctor tells you to. If sodium bicarbonate does not improve your symptoms, call your doctor.

 

Do not give sodium bicarbonate to children under 12 years of age unless your doctor tells you to.

[gfam]

Thanks Kim,

 

He only craves the bs sporadically, when the episodes are the worst. I know there is a link here, I'm just not sure what it is.

[lurker]

Donna,

 

I don't know how realiable the source was, but I read somewhere that hot dogs use a red dye (not #40) that is only approved for use in hot dogs. I get the nitrate/nitrite/preservative free ones from Trader Joe's or Whole Foods, and I have to admit they are a nasty blue-gray, not that pretty pinkish color. Same with the dill pickles from TJ's. Without the blue and yellow dyes, they are a mucky grayish green -- but they taste exactly the same.

[kim]

Donna,

 

Sorry about the quick reply, I only had a minute.

 

Thinking about the discussion here, I thought you might find some useful info on this thread. With the link that you seem to see with the dyes, you may find some of posts here interesting. BTW, welcome to the forum and I hope you find some answers to help your little guy here quickly!

 

http://www.latitudes.org/forums/index.php?...c=3208&st=0

[faith]

Hello gfam,

Yes, what the others are saying re the baking soda, there could be something there. I have read about this in that book as well, and although my son does not have the kind of episodes you are describing, it sure does sound like the kind of reaction to food or chemical allergies that is described in that book "Is this your Child" by Doris Rapp. Try to find it in your library, for I really think you will find in useful in your situation at least to understand what could possibly going on with your child.

 

Could you tell me some of the things your child eats on a regular basis? especially on these days that these type of reactions/episodes occured. Also, as lurker suggested, could you try giving the alka gold (or a teaspoon of the bicarbonate of soda in cup of warm water) and let us know if it does anything in the way to sort of halt or stop his episodes in any way?

 

Has your child had any bloodwork done in past couple of years? and if so, do you have any copies of the results?

You say he has some allergies, could you tell us what they are? and what type of allergy/asthma meds does he take presently, if any?

 

One other thing, has he had any recent vaccinations?

 

Thanks

Faith

[gfam]

Faith,

 

The book sounds wonderful & I am picking it up at the library tommorow. As far as the baking soda connection I may have figured it out thanks to the link Kim provided. If histamines are released during these episodes they create a more a acidic enviroment in the body and is involved in acid secretion in the stomach. The link I found does not specifiy if it increases or decreases acid, but if it increases acid in the stomach than it would make sense that he would naturally want more baking soda during these times. Carolyn refers to taking apple cider vinegar to help balance the ph and baking soda would lower the ph as well. Every time he has these episodes he naturally goes to the box and eats it in small amts. I knew there was a connection and thanks to the wonderful info here I am *starting* to understand the why a bit.

 

The episodes are always after having something with dyes,preservatives or additives and it takes days to get out of his system. No new vaccinations in years, no bloodwork, he has seasonal allergies that is managed with nasocort & claritin. Epsom salts baths almost always calm him. Right now his diet is very plain and strict. If I can't spell it doesn't go into him. Plus no sugar of any kind or dyes etc. I've been reading about sulfates and phenols in the Carolyns posts and it is all starting to come together. I have so much to learn yet and am so thankful I found this place. We have struggled for so long with this child feeling tha something was wrong with our parenting skills and knew something was different about this child. I told Nathan about the phenol, sulfate, dyes connection in his body as a reason for these episodes and he literally laughed out loud with relief. He was so happy. I understand there is a ways to go, but just having that explanation to they whys have been so helpful.

 

The one thing that is still not making sense is why do these episodes almost always seem to come when he hasn't snacked and right before a meal. Does the build up of phenols affect glucose regulation as well?

 

Does anyone have a link to the list of high phenol foods? My next step is to look into the Feingold Diet.

 

Thanks!