Detox diet - Blogging our journey

[KevinInMA]

Since there's no point in keeping what we're going through to ourselves I'm going to use this thread to live-blog everything that we're going through.

 

A little background (even though it's in other threads):

 

My 9 year old son was first told that it was possible he had a tic just over a year ago in Sept '09. His tic- stuttered breathing. It was concerning since he really noticed it a lot. Along with that he had a chronic cough that wasn't too bad and started a few months before the breathing. His primary told us to wait a while and the breathing would likely go away. Thankfully it did, sometime in Oct.

 

Through this we've still found ourself wondering why he was coughing. We explored reflux to no avail. We even had his adenoids out thinking it might be the cause. No effect.

 

In Feb '10 we visited a neurologist which was the biggest mistake of the whole process (the dr we chose, not seeing a neuro. THe details are in another thread). Long story short, he started on Tenex 1mg/day in March and around the same time I discovered this forum, THANK GOD.

 

When he started Tenex he was pretty bad. Coughing was every few seconds. He even had a hard time sleeping. I took the one simple recommendation that I could from this forum- Natural Calm.

IMMEDIATELY we noticed a difference. a BIG one. In the months following several other tics have come and gone and we kept skeptically giving him the Natural Calm. In those months we kept a close eye on how he was affected by a dose (which he got 2x/day). By June there was no doubt about it. Natural Calm was doing SOMETHING major to him and it was all good.

 

Over the summer a few changes occurred. The eye roll tic showed up but has lessened since. The cough (his longest running tic) has lessened. The day before school started he was tic'ing like crazy. The anxiety of school was getting to him.

When I picked him up after the 1st day he was TOTALLY fine. He was so happy to find that he had a great class with no punks to hassle anyone and a fantastic, calming teacher. Since the beginning of the school year his tics have been minimal and his spirits have been high and he's been doing great in school.

 

(to be continued)

[KevinInMA]

After reading a lot on this forum, I decided to contact a nutritionist that has been an acquaintance for several years that I KNOW would be just the person to manage any dietary "cure" that may be available.

Her methods are extreme but she assured me that she hasn't had one child with tourettes not be fully cured through this program- IF they can stick with it.

I have no reason not to believe her. She's been at this for many many years and even the people at the health food store have told me that if anyone is going to cure this, it's her.

 

So we begin (last week)-

She has decided that there are two issues at play here. One is candida (an overabundance of yeast in the body) and the other is the effect of salicylate on the brain.

Along with some enzyme supplements she has placed him on a severely restricted diet. Something that your average 9 year old would spend hours crying over (he hasn't YET but halloween isn't here yet, either).

 

Here are his limitations (an overview-without trying to write out everything in great detail):

No wheat

No Oats

No cow dairy

No sweeteners of any kind (this is temporary and will loosen a little after the first month or so)

No apples, berries, pineapple, almonds, peanut, several other fruits, tomatoes, cukes, a couple other veggies.

No nightshade veggies.

The list is WAY longer but those are the main points.

 

Drinks:

Unless he grows accustomed to unflavored coconut milk or rice milk, his only option right now is water. Suck it up, kid. It's going to be a long haul.

 

We have a list of preferred items that he can have and I've been cooking based on that list for a week now. We're trying to keep things as FAMILIAR as possible to keep him as happy as we can.

 

For breakfast

The first day I made scrambled eggs for him. I figured I could just swap out dairy with rice milk. Sure. Why not?

Well, WHOOPSIE! I bought VANILLA rice milk! Made for some sweet smelling scrambled eggs but he ate them!

So day 1 (and 2 and 3) was scrambled egg (rice milk once, no extra liquid once, and unsweetened coconut milk with the third), millet toast (Sami's is SO much better than Deland) with goat butter, and uncured bacon.

 

She recommended Frewhon brown rice cereal. He likes it. It's a lot like unsweetened rice krispies. We started out with rice milk but it's not very flavorful and looks like white tinted water so we quickly switched to coconut milk which is thick and has a nice flavor. A lot more FAMILIAR.

 

For snacks:

He's really digging mango. He likes cashews (pick the most expensive nut you could, kid) and pistachios, and we've been air-popping popcorn and adding some salt and goat butter. The kids at school keep asking him why he doesn't bring in cookies and other crap for snack. I've told him to tell them that as a competitive gymnast he NEEDS to eat healthy to be able to develop muscles and win. He told me he doesn't want to lie to them but I keep assuring him that on this diet it's TOTALLY true!

 

For lunch:

Okay, for the record, SCHOOL LUNCH TIME is going to SUCK!!!

I absolutely NEED ideas for school lunch. SOmething that will last 5 hours between the time I make it and the time he eats it. PLEASE HELP!

Today was the first school lunch. Over the weekend I made him chicken fingers- some with brown rice flour and some with millet breadcrumbs I made from the Deland bread that he doesn't like as bread.

They were FANTASTIC. YOu'd never in a million years know the difference. I cooked them in a little sunflower oil and they're just delicious. I froze a bunch of them and today took some out for school lunch. Sent popcorn that was popped last night and some mango.

 

For DInner:

Dinner is EASY so far. He can have just about any meat so we've been doing a lot of chicken with steamed veggies and either brown rice or a small amount of white potato. I need to get him into sweet potato.

Last night I made a meatloaf and carrots.

 

 

 

This past Saturday, his nutritionist reluctantly decided that she wanted to take him off of Natural Calm in favor of another Mg supplement because of the stevia content. SInce Saturday his symptoms have gotten SO MUCH WORSE. His strange breathing thing that hasn't been around in a year was coming back. He woke up this morning a little scared that his throat hurt from breathing like that.

I decided to nix the new Mg for the day and try Natural Calm again. 15 minutes later he was FINE.

I dropped him off at school and sent an email to his teacher telling her everything that is going on. She said that he was totally fine at school as of 10:30 this morning.

 

I'm tellin' ya. There's something to that Natural Calm!!

 

So thats where we are now.

I'm going to keep updating this thread as we go- partly because this all needs to be documented but also because I need support. I need ideas.

For example: I've been hunting for a chicken stock/broth that doesn't have anything in it but broth. Even at the health food store it was hard to find so I went to pick up some fresh sliced turkey for his school lunches at the local turkey farm and the girl (who I kinda know) told me that she could give me some of their turkey stock! PERFECT! Now I just need to get the kid to like soup!!

 

 

 

Thanks for listening, everybody. I HOPE TO GOD this works!

[KevinInMA]

While I'm asking for help, anybody have a recipe for delicious mayonnaise? No canola, no vinegar. If we can use olive oil (I hear it makes the mayo much "oilier") or sunflower oil then we'll be good.

[Cj60]

Good luck with the big changes, Kevin!

 

I wish I could help you with suggestions. I have my eye on salicylates as well, but am not quite ready to tackle them, as the diet presents a lot of work. However, a dr. we see mentioned, when I asked about the phenol issue at our last visit, that there is an enzyme that is efficient at breaking down phenols. We ended up looking in a different direction for the time being, but we may look in that direction again in a couple of months, once we get back to see him...

 

Chris

[KevinInMA]

Curious, Chris. What makes you an "Advanced Member?"

[Chemar]

Kevin

status changes with the number of posts

 

good for you that you are keeping a record. not only will it help you, but who knows who else may find answers from what you are doing!

[Lynn777]

Seriously, bless you for being so diligent with this. I have had my son on the Bontech supplements & organic whole foods since May. As of September we just started a much stricter diet based on my son's IgG results, to which he showed intolerance to 64 items. However, our integrative doctor is having us eliminate the 25 moderate/high reactive foods first. Mainly wheat/gluten/all dairy/peanuts/citrus fruit and a few others. He said sometimes that is enough to do the trick and sometimes more elimination and diligence is needed if our goal is to completely eradicate the tics. Time will tell.

 

Some days I'm ready to throw in the towel just with what we are doing now. If I had to eliminate all the fruits, drinks and treats too I'm not sure I could handle it (I guess I would for him, but you know what I mean). I TRULY give you credit.

 

I noticed a big difference in my son after starting him on the Bontech's and switching to organic whole foods. Can't say I notice any difference with Natural Calm (probably because he gets what he needs through the Bonnie's) or the stricter diet yet, but I've heard that it can take months to see the full effects of the diet.

 

Anyway, I wish I could give you more ideas. I'm actually a food diary junkie and have tried about every brand of everything, but I don't think we are as strict as you, so my food items might not fit for you.

 

Best of luck & I hope and pray each and every day that all of the alternatives help (if not recover) our kids!

 

~Lynn

[KevinInMA]

Okay, rounding out our day:

 

The day started off horribly and scary. I had thought that there was no way we were going to make it through this if he kept getting worse.

I picked him up at school and he was good. Normal (for a kid with tourettes).

I gave him his 2nd dose of Natural Calm when we got home.

Then, by about 5pm, I started to notice that I hadn't noticed him tic'ing.

Then I started paying attention. CLOSE attention.

 

EVERYTHING was at an all time minimum. He was not coughing. He was not rolling his eyes. He was not fluttering his fingers. He was not stutter-breathing.

I stared at him in the rear view mirror for about 10 minutes while driving (not quite as unsafe as texting but whatever). Maybe 1 eyeroll instance.

 

I stared at him for 15 minutes while folding laundry about an hour later. NOTHING.

 

This is a first. He never goes longer than seconds to a couple minutes between SOME kind of tic.

 

And now we begin my personal journey through cautious optimism.

[GEAF2816]

Great news about this afternoon's ticcing. I think we call can relate to watching our children, I often will notice a new tic a day before my son brings it up. Can I ask a few questions.

 

1. Is there any history of TS in other family members?

2. Is your son still taking tenex?

3. How much does your son weigh and how much Natural Calm do you give him?

 

Thanks you again for the recap.

[KevinInMA]

1. Well, the only connection I can make with family history is myself. I'm fairly convinced that what I have going on is a tic. It's a cough similar to his that has been treated as reflux but I'm not fully convinced that it is.

Here's the deal with me. I tried this diet a few years ago with this nutritionist but I just couldn't handle it myself. Yes, my kid is stronger than I am. I admit it. The difference that I can see is that I have free will and he does not.

If I want an Oreo I can just go get one where he has to ask. If you're thinking about going through this process do it while they're young and can't make food decisions on their own.

 

I told him several times that he can whine, complain, and cry about this. I won't get annoyed and I'll listen to all of his complaints, but he STILL has to do it and thats that.

 

Free will.... it can be detrimental sometimes!

 

2. Yeah, he's still taking it. It does something for him but I don't think it does anywhere near what the Natural Calm does. We'll taper off the Tenex first but I think it's going to be a while. We tried it once over the summer and the results weren't that great.

 

3. He is 60lbs. I give him Natural Calm plus Calcium at 1tsp/ 2x a day.

 

Hope this helps!

[KevinInMA]

This morning he woke up as he always does- reluctantly.

He came downstairs and started in on his morning routine. The whole time I was listening intently to hear.... nothing. It took him almost a full half hour before he let out the first cough. That is a new record. Usually they start pretty immediately as soon as he wakes up.

 

The whole time he was getting ready for school he was doing it all on his own. I didn't have to remind him of anything today.

When I told him to brush he teeth he had already done it. When I told him it was time to leave he was all ready to go. He coughed a total of 5 times in the first hour of the day. Thats practically none.

 

Breakfast today was a mix of rice milk and coconut milk in Erewhon Crispy Brown RIce cereal. It's exactly like Rice Krispies but not QUITE as sweet. I mean, rice krispies aren't that sweet anyway.

I'm mixing the milks cuz coconut milk is just a tad too thick and rice milk is just way too watery. They seem to mix nicely for cereal.

 

Lunch is turkey from the local turkey farm on Sami's millet (which he LOVES), homemade mayo, and organic lettuce. Popcorn and Mango are snacks.

 

The kid LOVES mango. My whole house smells of mango. Everywhere I go I smell mango. I think it's lodged itself in my sinuses. But who am I to stop him from eating mango??

 

 

My optimism is growing.

[cory2605]

It is so awesome that you are seeing results. I have been doing the Gluten free/Dairy and Soy free for 3 months now with very little change. My son also had developed fears shortly after his tics began last year in November (after the H1N1 flu vaccine and regular flu vaccine; I always add this in case someone comes up with a connection!). I bought the Kids Calm about a week ago. He is 59 pounds (8 years old) but I've been wanting to up his dosage to 2x a day instead of 1 time. I will now! He also takes Fish Oil but I found when I ran out and switched to a cheaper kind, he grew worse. I purchased Nordic Naturals last night and we'll see how that works. I also give him Inositol (500mg) for his OCD or fears which are mainly going into a part of the house by himself. At night he has to sleep with our dog or he has difficulty falling asleep. The inositol takes a couple months to take effect. Anyway, I'm going to research the salic...or whatever you called it.....and see if I can change his diet again without him noticing too much (yeah right!). When you said sweeteners, did you mean regular sugar also?????? Now this part I will not be able to slip past him. Everything else I think I could. But I have read that you can sweeten somethings with natural juices. As far as the sweet potato, if you scrub the potato real well, slice it the shape of homefries, put it in a baggie with the oil he is allowed and add a little salt (is salt allowed, I forget...either way it will still be good) and bake them like french fries he might really like them. I'm sure there is a more detailed recipe including broiling the last couple minutes to add crispness. I'm guessing you found a recipe for mayo...I make my own but with canola oil. What is your recipe? Another thing I'm planning on doing is baking the pumpkin seeds when we buy our pumpkin today. Are these salycitates? There is a website called TheGFCFLady who has a lot of great recipes you might be able to get ideas from. Anyway, I'll pray for you and the rest of the parents and children out there with this new hurdle in life!

 

Trish

[KevinInMA]

Trish, We use full strength Natural Calm with Calcium. The dosing is different between the different products so you need to be careful when you compare my dose to yours. We end up giving him about 230mg of Mg per day. Kids Calm is probably a much lower concentration so be sure to check your label.

 

When it comes to sweeteners we've somehow managed to eliminate EVERYTHING from pure cane sugar to stevia to nutrasweet to maple syrup. Bottom line, if it's not built into a piece of fruit or something it's not going in him for a while. Even then we need to take it easy on heavy sugar items like bananas.

 

When we were in Thea's office (His nutritionist) his biggest complain that caused him to cry was halloween. It's just not going to be fun. It's going to really really not be fun. We may end up taking him out of school and doing something fun on the day they have their party and for halloween night we may go out and buy him a new Wii game or something. SOMETHING to get his mind off of candy.

 

Society doesn't make a diet like this easy...

 

I plan on trying out sweet potato fries and other sweet potato recipes. I just haven't had the chance. We've got plenty of time since we're in this for the long haul! Next stop is chicken soup. Maybe tonight.

 

I DID find a recipe for mayo.

http://www.justhungry.com/2006/02/basics_mayonnai.html

 

I just had it on a sandwich. It's not AS flavorful as the mayo I'm used to but it's a good alternative. He's supposed to be eating it as I type this so we'll see what he says when he gets home.

 

 

Pumpkin seeds are fine.

 

Here is a list of foods high in salicylates:

 

Almonds

Apples (and their respective drinks)

Apricots

BERRIES (every kind)

Cherries

Cloves

Coffee

Cucumbers & Pickles

Currants

Grapes/Raisins

Wine

Nectarines

Oranges

Peaches

Peppers (bell & Chili)

Plums

Prunes

Tangerines

Tea

Tomato

Oil of Wintergreen

Aspirin and any med containing aspirin

Watermelon

[trggirl]

I've enjoyed reading your thread and will definitely follow your journey!

[KevinInMA]

Two steps forward. One step back.

 

Today started out great. After school. More of the same. Homework went very well. Very quiet. Good progress. Dinner was chicken soup. Then gymnastics practice for 3 hours.

 

At pickup he was coughing. Pretty much his usual level. I'm really hoping it was just because he was tired (it gets worse when he's tired) or thirsty. We've always thought that even minimal dehydration caused him to tic more. The more he drinks water the better it seems to get. He's eating second dinner (he eats before and after gym) of rice cereal and banana nut toast right now and is relatively quiet but I expect him to pick it up again when it's time for bed. He's eye-rolling like crazy....

 

Also, for the past couple months he's occasionally had a tough time getting to sleep. A couple weeks ago he woke us up at 5:30am almost in tears saying "I DIDN"T SLEEP ALL NIGHT! ALL NIGHT!" which we know isn't entirely true because we checked in on him before we went to bed and he was asleep. I want this to stop happening. I don't like the stress it causes him to take a long time to get to sleep. It's very saddening.

 

Hoping tomorrow brings more normalcy.

Edited October 14, 2010 by KevinInMA