Food Allergies

[Claire]

Ronna/Nancy

 

Ronna

 

Probiotics should be given at least 2 hours after the antibiotics. My understanding is that otherwise the antibiotics will just kill this healthy bacteria also. 2-3 times a day.

 

My son hates pills, so we dumped the contents into an ounce or two of water and he drank the mixture with a straw.

 

We got ours at whole foods, and they were labeled ACTIVE, so we knew they were 'live'.

 

Why is your son on antibiotics for PANDAS on an ongoing basis? Is it a prophylatic dose to prevent more strep, or is it to clear up a remnant infection???

 

Nancy, thanks for the explanation, I did something similar with my son for something else and he was very resistant. I may need to bribe him to try this--though the thought of having wheat again is very enticing! It is hard to know which way will work--thus anecdotal success becomes important. Again, I have a list of practioners to call.

 

Claire

[Guest Nancy]

efgh,

 

We don't have Playstation or anything like that, but he doesn't seem to tic while playing Gameboy or on the computer. I always just assumed it was because he is actively doing something and his mind is engaged while playing on the computer or Gameboy, whereas with tv he's passively watching. I've had mild tics myself for many years and I remember it always seemed like they'd come out at the end of the day when I sat down to watch tv - kind of a release thing I guess.

 

He doesn't watch much tv at all, so I never tried to remove it completely while he was ticcing. He and his brother have a few favorite shows a week that they watch, and that's fine with me. I agree with Chemar - I don't want to deprive him of everything and make him feel like he's being punished. He's really very good about his food limitations and taking his supplements, so I don't want to stretch it too far.

 

I suppose if he had very severe symptoms only when watching tv I might consider a different approach, but I don't think his situation warrants it. It's really hard to know what to do sometimes (sigh). I'm trying very hard to focus less on the tics and more on helping him deal with frustrations and anxiety that seem to cause more problems for him.

[Guest Guest_efgh]

Chemar and Nancy,

 

Thanks for your very useful replies. Chemar, you cannot be more right !!! I am so thankful to you for your useful responses. True, the kids cannot be totally deprived of their favourite stuff just becos it induces tics.

I am wondering if I will casually mention that the TV is out of order or gone for repair or something and check if his tics come down. don't know if its a good idea. That way , he won't feel that we are stopping him from watching it.

 

Nancy, do you generally discuss about your son's tics with him. I have never done with my son since whenever I hint or start that topic, he gets agitated. How about all of you?? Now that your son's tics are under control , won't that bring the frustrations/anxiety also down. I generally thought they were interrelated. Am I right? Does he have OCD symptoms too?

[Guest ronna]

Claire,

My son is on prophylactic antibiotics for rheumatic fever and because he seems to regress on day 3 without them. He has a primary dx of rheumatic fever and sydenham's chorea with a secondary dx of PANDAS. I just recently understood the importance of probiotics and not one doctor has mentioned yeast overgrowth in a whole year of being on antibiotics. I think it is contributing to Kurt milk allergy. I have all of the stuff to combat yeast like colloidal silver, grapeseed extract, garlic capsules etc but I am going to try and see a naturopath doctor after the 5th and I was not sure if I should start giving all of the stuff to help combat yeast now in case the doctor wants to do some test.

 

Ronna

[Claire]

efgh

 

I probably differ from others here in that I see no harm in having a 'no TV' week or two. But I too think it is best not to associate it with the tics if at all possible, and to make an unusual effort to do other fun things. Crafts, family cards/games, a family walk. And I would honor the same rule myself re TV--to show support. The Berenstein Bears did this in a book. The focus was family and hobbies. You can set up extra playdates on weekends and take them somewhere special. It can be a positive week. If you just take away the TV--it does feel like punishment.

 

For some, the 'relaxing' part may be the reason for the tics. For others, it is the TV itself. How will you know without checking? Once you KNOW, then you can make your own tough decisions that ONLY you as a parent can decide for your child. I believe that our decision did not harm my son emotionally (he was missing school from the awful headaches from TV, it just had to stop). Maybe it isn't a trigger, then you will know you won't have to worry about it anymore!

 

Our computer DID go on the blink, and it was the perfect chance to see what happened. My son didn't complain because he knew it was broken. It turned out well, because it broke the computer habit and he enjoyed the extra attention. Then I got him comic books (Calvin and Hobbes and Garfield) and a CD player for relaxation time--he honestly doesn't even miss it. I know this because he knows he can have it regularly now with the LCD and he NEVER asks for it. I have to remind him to even play Dance Dance Revolution with me occasionally.

 

As for weight loss, I doubt it is flaxseed oil, but it IS worth checking with a doctor to see what is going on. Not that his weight is bad, but just to make sure.

 

Claire

[Guest Guest_efgh]

Claire and ALL

 

thanks for your mail. I appreciate your concern for my son. Amazing that we all (latitudes folks) spend so much of time for each other. Our family bond is strengthening (without knowing each other) isn't it!!

 

Planning to just try saying that TV is out of order (I wish it really happens) and I would give it a try. Never would want to associate it with tics.

 

My son loves to read. He can read non stop! But the only times that he tends to tic more are first ofcourse TV and next while reading a book. so, the inference is that whenever he is passive (as Nancy mentioned) he tics more.

 

Regarding weight loss, checked with my doctor. He said since my son is very active, energetic and gaining a lot of height, it may be just a growth spurt and nothing to worry. My son has become SO TALL this year (from 136 cm 6 months back to 143 cm now). His physical activity, trekking, athletics and sports has GONE UP so much. Every day he does some tough sport after school - I mainly enrolled him in all this to reduce his tics and asthma. And more over, I give NO CHOCOLATES , NO SUGAR, NO DAIRY, NO JUNK, NO FATTY ITEMS, NO MILKSHAKES, ICECREAMS ETC. I give him only very good natural healthy home made food. May be that is why, he is burning more calories than what he gets. I would honestly appreciate any suggestions from you all regarding some fatty food items that would not trigger his tics/allergies/asthma and help him in his weight gain. Claire, I remember you mentioning that your son's allergies are much better after his aerobic exercises. What is your son's height and weight? Is he gaining consistently every year??

 

How many of your kids have had echolalia (vocal tic). Is it just repeating words or phrases out of context continuously or is it just uttering some words out of context?

 

Have a great 2004, all of you! Lets all hope and pray that all our kids remain hale and healthy and are free from their tics from this new year!

[Guest Guest_efgh]

Claire,

Just one more input, my son had a very high fever this June and it was then that he lost his weight . After that he has not gained back his lost weight - he is at the same level still. And he used to take a lot of carbs then - now his diet is more balanced. I am just thinking aloud so that you can give me some tips if these could be one of the reasons (non medical).

 

Are you back from holidays? How did it go? And have you started "no wheat" for your son?

 

Chemar,

 

Thanks for your portable CD idea. Would try it during short car travels, etc straight away.

Waiting for my son to really grow up and be on his own so that I will get SOME TIME for myself!

[Claire]

efgh

 

Well, if the weight loss was from fever, that makes a big difference. Yes I absolutely think reduced carbs and less junk lead to lower weight, in fact I think it is the high carb diets that lead to weight gain for many children and adults--not all, but many of us--including me, don't do well with lots of carbs. I don't even need to watch my weight when I have reduced carbs, and naturally go for more veggies then. My 10.3 year old son is about 80 pounds and 56 inches now. But he is slim--no extra fat and extremely fit--he inherited his dad's muscular build--we can already tell.

 

I thought the no wheat would lower his carbs--not so sure. I am probably overcompensating with good tasting grains. We bought a bread machine last night and made a wheat-free bread from a mix which is delicious! We found a wheat-free pancake mix also. We found a reasonable corn flour pizza crust. I couldn't taste the difference in the pasta, but he did, so I will try it again. There are a ton of 'yucky' brands out there. We were lucky to run into a family with a child who had tested many of them to find the best tasting ones. We definitely invested a lot of money and time looking for the right brands.

 

I need to figure out how to do breading and buns--he likes his proteins better that way.

 

His dad got him afraid to eat beef now though, with the mad cow disease. Though I guess grain/grass fed cows are okay.

 

 

Claire

[Guest Guest_efgh]

Regarding making bread at home with your machine, if not for wheat, what are the ingredients that the MIX contains.

What are the grains that you give him now other than wheat for carbohydrates??

[Claire]

efgh,

 

It is a brand called Gluten-Free Pantry, and I had it recommended to me multiple times for good flavor.

 

It has potato starch, corn meal, brown and white rice flour and xantham gum (xantham gum replaces the gluten for the stickiness needed for a bread, as I understand it). Xantham gum is sold separately in health food stores also--it isn't 'artificial' and it feels like a flour. "Pamela's Pancakes" are the same. All natural ingredients--we bought it at the huge "Whole Foods" health food grocery chain which screens for such things.

 

Regardless of wheat allergies, I think it is good to rotate grains.

 

By the way, good for you for making a decision on the TV in a way that won't traumatize your son. I recommend initially to be there with him during what would have been his normal TV time as he adjusts--this way it has the potential to end up being a net positive for him, though tough on the parent. Or having something fun for him to do in the same room while you make dinner and/or chat. We got playdoh (yes at age 10), pipe cleaners and games and keep quite busy. The comic books and the CD player kept me sane and is his downtime. Of all things, his self-directed physical activity (exercise) makes the biggest difference. We have some remodeling work going on, but normally the garage is complete empty for this purpose during the winter months. It is amazing what they can do in there even in the evenings. (hockey, skate, skateboard tricks, soccer, ball play). Digging in the yard works well also.

 

I will be very interested in hearing what happens--I really do hope it makes a difference for him. Because then you can justify the non-flicker monitor. Although I think my son just doesn't care much anymore. Remember, it took a week for my son's tics to clear after no exposure--I can't imagine it going longer than 2 weeks.

 

Yes, they need lots of attention at this age--probably moreso than many kids because of their nervous systems. Our biggest blessing is his finally having a best friend who loves outdoor play, rain or shine. He is over now. My son is so 'even' (emotionally balanced) after a day playing outside with this child. It took us until a year ago to find some one like this. Yesterday they intentionally climbed in a dirt pile in the rain--and the friend's parents let them!

 

Claire

Edited December 30, 2003 by Claire

[Guest Guest_efgh]

Claire, when you did RAST testing for your son, did you also test for corn, soy and rice?? What about eggs, dairy, oranges etc? Heard people who are generally allergic to dairy may also be allergic to soy. Are you planning to eliminate all the allergic food items as per the RAST test results. What are the food items that he is allergic to?

Other than rice and wheat , what are the other grains that you rotate?

How are your son's fears now after the wheat free diet?

[Chemar]

Claire

that sounds like a really great buddy.

 

Isnt it wonderful when they find good compatible friends!

My son really treasures them

[Claire]

efgh/Chemar

 

Chemar, yes re the friends! I don't think we see things that differently re the trigger avoidance. It is just that my son doesn't care about TV/computer, and what he reacts to are supplements and food restrictions ("why can't I have artificial colors and flavors like my friends do?", and 'no way am I taking a supplement'), so that is where I give him lots of latitude for fear of messing him up emotiionally. While your son seems to be the opposite. Though it is encouraging to think that with age they do make the 'right' choices for themselves...

 

Chemar, what do you do as a parent when your son's OCD 'waxes'? I mean aside from the supplements, how do you help him handle the fears and urges at the time? My son is either too afraid to deal with new methods when he is in the middle of them, or to bored to talk about it when he is well. I have read a bit on behavior cognitive therapy. Distraction and exercise seem to be our best bets.

 

efgh, given the ticcing during reading, you might want to spend $30 on the Irlen colored overlays to see if they help. It is just possible that your son has the same light sensitivity as mine. If not, it isn't a huge investment. You put them over the reading page and see if one feels better than the other (or he prefers no overlay at all). Then let him read and see if the tics are reduced.

 

http://www.irlen.com/downloads/store/color...y_orderform.doc

 

Claire

[Chemar]

Claire, i am pleased to report that we dont really have those kinds of OCD waxing anymore!

Yes, he still gets very "focussed" sometimes over a particular subject or issue or object....but it is really different now that he is on the 5HTP/SJW, Inositol& GABA plus the B's etc! Just not the same obsessiveness to the point of overwhel,ming anymore.

 

I do agree tho that EXCERCISE and distractions and re focussing are excellent tools to modulate the OCD stuff

[Guest Nancy]

Chemar,

 

Can I ask what kind of inositol you use? I'm confused by all the different names it can have. We use something that's just called inositol from GNC, but I'm wondering if I should use a different type. I see no-flush niacin that is also called inositol, and then plain old inositol with different names. Is one best for OCD? My son's doing well with tics, but it's his perfectionism and anxiety at times that are more bothersome. I now think that that part of his behavior is possibly OCD tendencies that often go along with the TS (of course he gets all this from MY side of the family!).

 

I'd appreciate any input you have. Thanks!