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Offline Lynn777

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Re: Welcome to Gluten Free for Tics
« Reply #60 on: May 13, 2010, 10:55:29 AM »
Hi Caryn,

Thanks so much for your quick reply.  I have one question for you, I went to the Great Plains Laboratory, Inc. website and they recommend 17/18 tests that they offer for people with tics.  I can't do all of those tests at once.  I realize everyone has different issues that aggrevate their tics, but I'd love some advice on where to start.  I know you mentioned the OAT, but can you give me a list of what you would consider the top 3-5 tests to begin with?  I'd really appreciate some direction.  We are actually going for a CBC tomorrow.

Thanks for this board, it's very helpful and wonderful of you to provide support to parents who are new to this and are confused and scared poop-less!  

~Lynn

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Re: Welcome to Gluten Free for Tics
« Reply #60 on: May 13, 2010, 10:55:29 AM »


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Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #61 on: May 13, 2010, 03:16:20 PM »
The CBC is a good place to start. It will help you determine what tests to possibly consider next. If the white blood cell count is abnormal that is indicative of your next step. Low WBC could mean there is an underlying viral infection (mycoplasma), or a systemic candida infection (which an OAT test would look for). High WBC would indicate an active infection, probably bacterial-- Lyme or Strep are both common with neuro issues, especially OCD related cases. So a high white blood count and previous exposure to strep might point you in the direction of getting a Strep titer ASO test done to see if there are high titers indicating possible PANDAS. If you believe there is a possibility that your son has been exposed to a tic bite and has had a bulls eye rash in the past then you may want to check for Lyme. Both these conditions can cause neurological disease so it is good to at the very least rule them out if possible. It is possible to get low WBC and still have an infection, but low WBC is indicative of autoimmune issues too and is often coupled with digestive disorders. This was the route we ended up taking and this board supports it with ongoing research and recipes for healing gut dysbiosis. In many cases diet can help with reoccurring bacterial and viral infections and there are certainly many ways to treat the body with natural antimicrobial supplements, but if the problem is viral or bacterial and it is systemic and causing neurological symptoms then your treatment would have to include antibiotics, more than likely as a primary means of treatment to kill the infection.

If the CBC shows low iron stores then you may want to start with digestive disease screenings, especially with the history of digestive issues in your family. This is a classic sign that there is probable gluten intolerance/celiac issues at the very least (in many cases multiple digestive sensitivities).

One more thing, low IgA is a sign that there is a definite immune issue, especially if your child has reoccurring illnesses and seems to get sick a lot. This is also indicative of probable Celiac but would result in a FALSE negative on a Celiac test. This is important to know as you test for digestive illness.

So this is a start. Hold off on ordering the other tests until after the results come back on the CBC unless you have reason to suspect a bacterial or viral infection based on recent illness. Then I would ask for that as well. I know the feeling of wanting to fix it right away and I understand the need to cut expenses on unnecessary testing. Keep giving him epsom salt baths right now and the bontech. That should help and certainly can't do any harm. I would cut out sugars too. This could help if the problem is fungal.

Offline justinekno

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Re: Welcome to Gluten Free for Tics
« Reply #62 on: May 13, 2010, 09:07:49 PM »
Caryn,

I'm curious you suggest looking into fungal issues when ibs and crohns are involved. We have a family history of both so I'm interested.

Justine

Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #63 on: May 13, 2010, 09:49:31 PM »
Justine,
Doug Kaufmann talks about this at length in his books and on his show, "Know the Cause". I also have a good friend who was diagnosed with Crohns about 5 yrs ago and had to have part of her bowel surgically removed. She went on a special diet as part of a study group and was able to recover without the need for medication. She was even able to deliver a child without complications a couple years later (with about 23 specialists and medical staff on hand anticipating many dangerous outcomes). Her diet was/is similar to Doug's protocol: avoid all refined sugars, fluid dairy, soy, corn, wheat, alcohol, beans, raw vegetables, green/bell peppers, chiles, or pepper the spice. The diet allows yogurt, coconut milk, cooked vegetables, rice, meat, fish, and nuts. Her diet allows cheese where Doug's diet only allows cream cheese. Doug also says to avoid all peanut products and her's does not specify to avoid peanuts.  This is basically an anti-fungal / anti-microbial diet. Probiotic is very important to get the gut healthy again. My friend says that she is able to incorporate things (like an occasional tortilla) that she originally avoided without incident. But as a rule she does not stray far from the diet. After a few years she is still able to manage her symptoms without Crohn's drugs.
Caryn

Offline Lynn777

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Re: Welcome to Gluten Free for Tics
« Reply #64 on: May 14, 2010, 10:14:35 AM »
Thanks Caryn!

All the information is overwhelming, but very much appreciated!  I will take your advice and be patient and wait for the results of the CBC and based on that decide next steps.

~Lynn

Offline cartersmom

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Re: Welcome to Gluten Free for Tics
« Reply #65 on: June 25, 2010, 09:38:21 PM »
Hello. My name is Sue and I have a 7 year old son. He was healthy and happy until getting H1N1 in october. Shortly after that - he developed seperation anxiety, motor and vocal tics, obsessive thoughts about death and dying and rage attacks. He was quickly diagnosed with pandas. Our pediatrician and immunologist knew of it, but not what to do. Neurologist said he "just has tourettes, which can be aggravated by strep". At that point, he'd run out of his 2 month course of antibiotics and was going downhill fast! Went elsewhere and have started a new, long term ABX.

In addition, I took my son to a nutritional assessment yesterday. Gluten free was recommended and I had been thinking for a while, it would be good for MY health, so this was the push I needed. So since pandas has made my life move in fast forward... we are jumping in head first and trying to learn about it like NOW.

Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #66 on: June 25, 2010, 10:11:34 PM »
Hi Sue,

Do you know that the H1N1 has mercury in it? Mercury is a known neurotoxin. It is in CFL lightbulbs and the government has a list of hazmat regulations if you break a light bulb. http://www.epa.gov/cfl/cflcleanup.html

My sons' symptoms started after their vaccines. Two kids had reactions, one we noticed a couple of weeks later. The second time it was only 5 days after. Both of them also have the Celiac gene. One is diagnosed, the other, well, let's just say that our doctor no longer will vaccinate him and he is on a strict gluten-free diet now too. Middle child has no Celiac and had no vaccine reactions.

I myself had 12 silver (mercury) fillings while pregnant and nursing all my kids. The safe amount is 4. Anything more and you are at a toxic level. One of my fillings was cracked and leaking badly when I finally had my entire mouth re-done this year. I feel a million times better already but have to do chelation myself. When a woman is nursing 6x the concentration of mercury in her blood goes into her milk. So you can see how this has the potential to cause serious neurological damage to her baby, especially when coupled with shots. Mercury suppresses the immune system and is indicated in Alzheimer's disease as is Aluminum at autopsy.

I am not sure if you tested your son for metals at all. It is possible that a completely negative result on a hair or urine sample could mean that the body isn't detoxing it and it is being stored in the tissues (or the brain). Our oldest had no metals on his tests. If you read/watch Dr. Klinghardt he talks about this phenomenon. We did get a dx for Celiac on the oldest at age 5 after he showed tremendous improvements on the diet. We did not get a biopsy on him. We did blood testing and trial diet and genetic testing for confirmation. Celiac needs a catalyst.....
I think it was the shot.

So it may be that the catalyst for the PANDAS in your case was the shot. There is a lot of info on Autism forums about chelation. It is not discussed much on PANDAS/T.S. boards as far as I can tell. We do not deal with autism here but did find some of their treatment protocols very helpful.

In addition, I just want to mention that an increase in symptoms and the onset of new symptoms after a long term use of antibiotics could actually indicate that there is a fungal infection going on in addition to the strep. Antibiotics are a mold and if your child has a mold allergy or has stripped bowels due to long term antibiotics, then that is the perfect environment for growing fungus (mold), especially if the child is not on a restrictive diet. The most common moldy foods are peanuts, corn, and wheat. So the gluten-free diet might help but it certainly isn't the only component. Did your doctor prescribe probiotics? They are vital in healing the gut and helping to maintain balance. A 7 year old with dysbiosis needs a HUGE dose of probiotics short term (couple months). We gave our 3 year old 30-50 billion a dose for two months to fight off his systemic fungal infection after the onset of symptoms. Does your son poop undigested food? Does he have loose unformed stools?

Some thoughts and ideas for you to consider. Welcome to the board! I know that if you continue searching for the answers you will find them. Best of luck.

Offline 2boys

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Re: Welcome to Gluten Free for Tics
« Reply #67 on: July 18, 2010, 01:54:48 PM »
Hello.  This looks like a great board.  Thank you for letting me join. 

My older son has starting showing tics about 8 months ago.  Up until now, I was probably the only one who noticed them. 

My son was 7 years old in February and he started to show signs in November.  He was crunching his nose and sometimes sniffing.  He has not been diagnosed yet.  we will see the neurologist next week.  My father has tourette's so I am sure that is where we are heading with my son.  He moved from sniffing to blinking his eyes tightly...usually when watching tv or relaxed.  He would do it a lot in the car.  He also jerks his head sometimes and sticks his tongue slightly in and out.  The head jerking only started last week and has increasing become more often.  I haven't changed anything with him yet.  I wanted to see the neurologist and the allergist first before I modify his diet.  He has had eczema since he was a baby.  It is definitely better now but in the heat it will still come out.  His skin is always so sensitive.  He also has very bad seasonal allergies and will occasionally break out in hives after being outside.  He has also had a issue with bowel movements.  He would struggle so much when he was younger to go.  That has changed but his stool isn't always solid.  I am unsure if he has any allergies to food.  His brother is allergic to peanuts and tree nuts. 

IS the gluten free diet a good place to start for him?  Are there any books I could purchase?  I have no idea where to start with this.  Also, are there any stores that sell a lot of gluten free items.  I am in the new york area.

Thank you for any help you could give me!!  I appreciate your time!

Melissa

Offline Lynn777

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Re: Welcome to Gluten Free for Tics
« Reply #68 on: August 25, 2010, 08:25:28 PM »
Just got our IgG back.  Feeling a little overwhelmed.  Gluten, Oats, All Dairy, Eggs, Aspergillus niger, orange and soy beans all came back high.  Casein, tuna, wheat, rye, spelt, peanut, mushroom, cilantro & grapefruit all came back moderate.

The dairy is really stressing me out.  Any advice/suggestions are very much appreciated.

Thanks,
Lynn

Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #69 on: August 25, 2010, 11:13:04 PM »
Lynn,
I am sure you have googled "aspergillus niger" by now. It is a form of black mold. My hunch is that you're dealing with toxic mold issues, especially with that long list of reactive foods. Fungus produces a toxic waste product that reeks havoc on the body. If you have overgrowth (which often happens in digestive diseases) then you will see neuro symptoms, etc...It will be tough to make adjustments, but you are probably going to see dramatic results after a while. Just looking at your list, I can see that there are a lot of foods from the IgG that are high in mold:

(Grains in general tend to be moldy, but wheat is particularly bad), peanuts are number two on the list for high mold count, of course mushrooms are a fungus too.

BTW, Cilantro is a natural metal mover. It can cause problems in some people with heavy metal poisoning when they do not chelate properly. Grapefruit is also very bad for metal chelation. Have you tested for metals? I had 13 silver fillings when I was preg and nursing. My dentist has since removed them all and feels they may have contributed. Had some old cracked fillings, etc... They are 50% mercury.

Does your child exhibit histamine or skin reactions to foods? You may want to consider getting an IgE test done, especially with the egg, dairy, and tuna results. There is no gold standard for allergy testing at the moment, but the current advice is to do more than one test and then do what they call a food challenge. It is possible to test positive on the IgG for a food and not be allergic. If the true problem is fungus and the food samples are tainted with fungus then the patient will have a higher intolerance level. This is what Doug Kaufmann described to me last year. He is one of the original developers of the IgG test.

In our case we followed the IgG results diet on my first child and with my second child we did a very strict anti-fungal approach. Both had similar testing results initially. Both have the celiac gene, the oldest had positive blood work, the youngest didn't get the blood work. Anyway, the first took over a year to recover and had much more severe symptoms. The youngest one had much milder onset and recovered after about two months. We used anti-fungal meds (which made youngest sick before he got better and caused a bacterial infection to fester) and HIGH doses of potent probiotics with the youngest. Oldest never had the antifungal meds. He was also never tested for fungus (who knew?). Youngest was tested and was OFF THE CHARTS high.

We had flooding in our basement prior to the onset of the illness(es) of our two boys. Both were exactly the same age (3 1/2) when they started symptoms, right after their preschool vaxes (won't do that again!). We have completely gutted out and remodeled and have a much healthier house now. Both boys are completely tic free. Oldest has been tic free for two years.

You may have undiagnosed celiac. I would suggest testing. Soy and Dairy often go with gluten intolerance. It may be outgrown. It may not. There is a digestive sprue that can develop with soy intolerance that is identical to celiac disease-- it flattens the villi too. With all those positive food results my hunch is you have some kind of sprue going on.

So, before you start the diet-- consider doing a urine/stool test for fungal and bacterial agents, do a blood test for celiac (unless your child has low IgA, or IgA deficiency, then just do a genetic screening), and consider environmental factors that might contribute to the mold intolerance. If you'd rather just do an anti-fungal diet to 'see' be determined to stick it out for about 2-3 months before things get better. Be strict, and offer a cool reward after the sixty day mark, and again at 90 days. You'll get through this. It is only a bus stop along the way to your destination. Just look at it this way. It is not the end of the world. And this laundry list of avoidances will shorten over time.

Dairy free does not always mean 'casein free', so you will have to investigate that. Get Ghee from whole foods. It is clarified butter and mimics the taste quite well. Coconut milk is really good, and So Delicious makes a tasty individ. serving sized coconut yogurt cup that is perfect for lunches. You can use nut bases instead of dairy. I have done a cashew dip for veggies and it was delicious.

Check out www.pecanbread.com to get some ideas. Look at the SCD recipes on this board. My hunch is that you will be able to add more foods as time goes by and the gut is healed. But be patient. We used 50 billion probiotics daily. I believe ours has dairy but there are many that do not now. I believe Florajen 3 is dairy free. Just double check. Kombucha is also excellent. Coconut is great for fungal problems, too. Find out what your child likes to eat, make a list of things you need to find to 'replace' or 'substitute' with, then start your product searches and a menu. We stuck to the basics and repeated a lot the first three months. I promised my oldest son a chocolate cake for his brother's birthday after 6 months on the strict IgG diet. We worked hard not to cheat during that time. My youngest recovered much faster on the anti-fungal regime. Just a thought for you. We now eat a moderate diet that is strictly gluten-free but does include a little of everything else. So it does get better when the body heals and gets back into balance. Absolutely no sugar in the diet. Use only fruit high in antioxidants (berries) and low in fungus. Use honey or stevia sparingly. The first two weeks are tough and you tend to be tired and crabby.

Hope this helps.

Offline Lynn777

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Re: Welcome to Gluten Free for Tics
« Reply #70 on: August 30, 2010, 03:19:09 PM »
Caryn,

Thanks for the quick reply and for all of the information.  I really appreciate any insight and direction I can get to move forward with this. 

When my son had his motor and vocal onset in April, I immediately put him on the BonTech supplements, have gone 100% organic, eliminated all artificial colors, flavors, preservatives, sweeteners, msg & high fructose corn syrup.  We also cut down on the cow’s milk & sugar.  Plus, we went about 80% Gluten free, but haven’t been as strict as we should be with that.  Thankfully, my son has been very accepting of the diet changes and we have seen a marked difference in his tics.  Since starting the supplements and implementing the diet changes we have not seen anything as severe as the onset.  But, the bottom line is -- he still tics!  (And I do realize the improvement could just be waning). 

My son loves dairy items like cheese and yogurt.  He also eats a lot of oranges & peanut butter.  So, that’s what I’m stressing about the most.  I’m starting to wonder what I will feed him!

We have not had the heavy metals, OATS or fungal tests yet.  Our doctor said he likes to do the testing in tiers.  My son’s CBC was normal and so he said the next step was the IgG, which we did.  He was tempted to do additional testing right away because we have a family history of digestive issues   Me: Irritable Bowel, My Mother: Colitis, My Cousin: Chron’s and my Dad was just tested for Celiac (results not in yet).

As for the histamine, my son has never reacted to a food, but I have.  However, he reacts as far as his seasonal allergies and he responds to Benadryl both for his allergies and for the tics.

I am going to look into the anti-fungal diet.  Also, thank you so much for the other suggestions.  I have been giving him Kefir everyday, but now with the dairy issue I will need to look for an alternative, I will check out Florajen & Kombucha.  I will also try the Ghee & Coconut Milk.

Do you have any other suggestions as far as supplements, anything that you found really beneficial that maybe I'm missing?

Thanks again!

~Lynn

Offline formy1son

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Re: Welcome to Gluten Free for Tics
« Reply #71 on: October 18, 2010, 12:49:21 PM »
First, I thank all the parents who took the time to post valuable information  on this site.  It helped me help my son immensely.
My son experienced eye blinking for 3 weeks in Feb. when he was 3 and 4. Then at 5 years, he had a very bad strep infection-very bad.
I won't go into too much detail on that.  Next two years he had strep once a year.  Then run of the mill stuff until he was 9.
Two winters ago he had pneumonia 2nd week of school, then what seemed like a new virus about every two weeks.  Sick the
entire winter.  After the pneumonia he had a flu shot...then a virus with extreme congestion and a bad cough.  Many doctors
and wheezing for first time..Many meds, antibiotics, inhalers,  then allergy medicine for a runny nose that persisted. Nothing would help him.  During this bad virus the tics started. a bending at the waist for a few weeks, a jesture with his hands, eye blinking, then a head tick.. Doctors told us neurologist, or shrink.  We did both.  We suggested PANDAS and we were told "couldn't be" 
After my son suffered and was so uncomfortable we sought help from a chiropractor.  Visits 3 times a week.  Then finally some improvement but not enough.  We also removed all offending dyes, preservatives in food, chemical cleaners, dryer sheets, clothes soaps etc.  We did it all.
Saw a few allergists who did skin tests..many things came up.. After removing these foods, more improvement but wanted to help more.
Finally saw an MD who did many tests... Our son had 42 different food sensitivies.. Highest Gluten, Pineapples and milk. Also, ran the PANDAS tiier and also high 1365.   Gluten free for 3 months and the tics disappeared 99%.  Food sensitivies down to gluten, milk and few others.  The numbers came down dramatically.  The PANDAS titer elevated.  So my son is gluten, milk intolerant and he has PANDAS.    So, my advice is the regular skin tests at traditional allergists will not find a wheat or milk allergy all the time.  If your child has many intolerances and seems to have become Hypersensitive, severe congestion, constant dark circles around the eyes, headaches, and gas but not necessarily complaining about stomach pain or discomfort.  Give the Leaky Gut syndrome another look.  I read about Pandas and Leaky Gut so many times and NEVER THOUGHT IT WAS MY SON'S PROBLEM BUT IT WAS...   We were looking at the physical symptoms we saw and didn't think much of the SLIGHT stomach issues he had.   Magnesium helps incredibly don't be afraid to try it.. It made my son so muchmore comfortable.  Now, he takes magnesium 100mg every other night, he is a different child, happy, focused, hand writing is clearer, and so far an A student.  I'd be glad to help any parent.  Our childrens problems are all the offending things being put into them.
Take care.   
Mom Mary

Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #72 on: October 19, 2010, 08:10:13 PM »
Thanks Mary.
I know your post will be helpful to many.
Welcome to the board.
It is wonderful when you get to the other side and can look back at the times when it was really bad and say to yourself, "We made it through."
Your message is going to really give hope to someone who hasn't quite gotten that far yet. It is so hard to believe that it can and will get better when you are overwhelmed with symptoms and no direction to go.
I agree that what we put into our kids is adversely affecting them. Diet does make a difference. Some get better results than others, though. Some take much longer to heal than others. We are all different.
And you are right, environment is very important too.

Offline Lynn777

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Re: Welcome to Gluten Free for Tics
« Reply #73 on: October 22, 2010, 01:31:41 PM »
We are a month +  into  the diet and are doing really well.  Unfortunately, my son had a traumatic injury on Monday night that made some of his tics resurface  :'(

Anyway, my question is I see so many people refer to the "dark circles" under the eyes and I notice that with my son too.  I also notice it is worse some times then other times.  Is that a sign of something specific?

~Lynn

Offline Caryn

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Re: Welcome to Gluten Free for Tics
« Reply #74 on: October 22, 2010, 02:45:58 PM »
Lynn,
We saw that when he was exposed to an allergen. It would pass after about 3-4 days. Try a little added magnesium and have him drink a lot of water to help his body detox. Now my oldest son doesn't have that problem anymore. I think the leaky gut is totally healed now. Maybe that has something to do with leaky gut issues? I never got down to the bottom of it, but we definitely had that symptom too and we were able to tie it in to cross-contamination or obvious exposures to an allergen. HFCS was the worst.

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Re: Welcome to Gluten Free for Tics
« Reply #74 on: October 22, 2010, 02:45:58 PM »


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