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[mylittleangel]

I have been reading this forum for over a year now and finally decided to share my story. My sweet little angel is 5 years old. His story, however, begins from the moment he was born. He was born with horrible cradle cap, severe colic and acid reflux. He literally did not stop screaming from the moment I gave birth until he turned 5 months old. He was put on Zantac for his reflux but still had trouble keeping his formula down. He never slept. During his first year of life, he was always sick - colds, rashes, fevers. That is also when the chronic ear infections began. He was on antibiotics so many times during the first 3 years of his life that I have lost count. When he turned 3 1/2 we had tubes put in his ears (he had a fever and an ear infection during the operation). The next day we noticed he was constantly sniffing and clearing his throat. This continued for a few months. During that time we took him to see his ENT and an allergist who was convinced that he had allergies (due to the dark circles under his eyes) even though nothing showed up on the scratch test. When he turned 4, other tics emerged and we new there was something wrong. We realized that his tics actually started during his first year with occasional eye blinking and continued in his second year with constant pulling of the shoulders on his shirt. We went to see a neurologist who basically said you can medicate him or live with it. We never went back. I started seeing a naturopath who did some test and found that my son had a large overgrowth of yeast. We took him off dairy, gluten, and sugar for 10 weeks and treated him with nystatin and probiotics. He seemed to make huge improvements. After the 10 weeks we did another test that showed the yeast was clear and we put him on a multi vitamin, Kids Calm and kept him off gluten, dairy, artificial colours and preservatives. He was doing so well for 6 months (mild tics that only I noticed). A few months ago we found out that he was low in iron (again) and vitamin D. We immediately put him on iron supplemetns and 2000 IU of vitamin D. This past month we went on vacation. He had a bad cold and ever since then, his tics have become worse again. I just sent in a urine sample to Great Plains for the OAT test because I believe that we never fully got rid of the yeast. I am also going to start him on B6. My naturopath believes his liver might have trouble detoxing so we are also going to try milk thistle. He has always had trouble gaining weight (even though he eats well) and doesn't seem to absorb nutrients (which is why he is low in iron for the second time in 2 years).

 

Anyway, I get a lot of hope reading many of these posts and it helps me to keep on fighting for my little angel. Thanks for listening.

[Chemar]

Hi mylittleangel (what a lovely name! )

 

so sorry for that hard time your lil one has had so early and thanks so much for sharing your story.

 

 

 

I really is astonishing how wide a range of illness does come from dietary intolerance /allergies as well as nutritional deficiencies

 

my son has Tourette and so I am conscious that total eradication of his tics and OCD may be unlikely, yet the dramatic improvement in his quality of life since adopting a diet suited to his needs, supplemented with the extra things that benefit him.

 

it tool a while to figure the pieces of his health puzzles, and we are always on a learning curve.....but once you get on that right track it really is encouraging

 

I am so glad you have seen improvements and hope you will find many answers to bring more healing

[faith]

hi mylittleangel, and welcome,

It does seem like you are in the know about dietary and supplements and testing, so thanks for letting us know your experience. I am curious tho if anything changed while you went on vacation or around then, like veering off his diet restrictions. do you always keep him off dairy and gluten? could the addition of iron or vit d put things off kilter? what are his tics that got worse and how long are they in the waxing mode? its possible that the cold he had just weakened his immune system a little and things will settle back in time.

 

Let us know how things go.

 

Faith

[mylittleangel]

hi mylittleangel, and welcome,

It does seem like you are in the know about dietary and supplements and testing, so thanks for letting us know your experience. I am curious tho if anything changed while you went on vacation or around then, like veering off his diet restrictions. do you always keep him off dairy and gluten? could the addition of iron or vit d put things off kilter? what are his tics that got worse and how long are they in the waxing mode? its possible that the cold he had just weakened his immune system a little and things will settle back in time.

 

Let us know how things go.

 

Faith

 

 

I actually noticed his tics starting to increase just before we went away. We had tested him for leaky gut and found out that he did have a slight gut permeation. The naturopath gave him something to take to help heal his gut. Just as I started giving it to him he got a cold. I soon noticed a nose twitch. After a few weeks I decided to stop the pill for his gut to see if the nose twitch would go away. It hasn't and he is now also wiping his face with his arm (constantly), clearing his throat, making a hmmm sound, smelling his fingers and his arm, shoulder shrugs and rolls, and pulling at his shirt. It has been about 4 weeks now. The naturopath thought that perhaps his liver isn't detoxing properly so he gave me milk thistle (which I have yet to give him because I am now scared to give him anything new). I am also supposed to start him on vitamin B6 a few days after I start the milk thistle. We have no history of Tourettes in my family so I know there must be a reason why this is happening to him. I just have to figure it out.

[Caryn]

Just wanted to add a quick reply--

I don't have too much time this morning--

We have a similar history and did have leaky gut problems. Our son is stable now for 1 1/2 yrs.

I think it takes a LONG time to heal the gut and you just have to be patient. Even if you think it is not working, don't stop. Give it at least 6-9 months, maybe longer. It is worth it.

I read a study that confirmed most kids will tic 4 weeks after being exposed to a virus. We saw that pattern ourselves. Also, we have used milk thistle. It is not harmful. Liver detox issues are a part of it in our case, even now. We keep the diet as chemical free as possible and it works.

We are also strictly gluten and corn free. If your child has a food intolerance (VERY common with leaky gut issues-- they go hand in hand)-- you may need to investigate the supps. Could have a culprit there. For example, some milk thistle products have corn-based byproducts in them, etc....

our story is here:

http://healthy-family.org/caryn/289

The good news is that when his gut healed his multiple allergies seemed to lessen over time. (He had 17 at the start). Now we only avoid gluten, corn, and wheat.

Caryn

[mylittleangel]

Just wanted to add a quick reply--

I don't have too much time this morning--

We have a similar history and did have leaky gut problems. Our son is stable now for 1 1/2 yrs.

I think it takes a LONG time to heal the gut and you just have to be patient. Even if you think it is not working, don't stop. Give it at least 6-9 months, maybe longer. It is worth it.

I read a study that confirmed most kids will tic 4 weeks after being exposed to a virus. We saw that pattern ourselves. Also, we have used milk thistle. It is not harmful. Liver detox issues are a part of it in our case, even now. We keep the diet as chemical free as possible and it works.

We are also strictly gluten and corn free. If your child has a food intolerance (VERY common with leaky gut issues-- they go hand in hand)-- you may need to investigate the supps. Could have a culprit there. For example, some milk thistle products have corn-based byproducts in them, etc....

our story is here:

http://healthy-family.org/caryn/289

The good news is that when his gut healed his multiple allergies seemed to lessen over time. (He had 17 at the start). Now we only avoid gluten, corn, and wheat.

Caryn

 

Hi Caryn,

How exactly did you get rid of the candida and heal the leaky gut? Did you use Nystatin? Did you do the candida diet? My sons IGg results also came back with around 17 allergies (dairy/casein, eggs, almond, sorghum flour, pineapple, citrus, Oat, Whey, Hazelnut, Tuna and a few others). Do you still have to avoid sugar? Once you get rid of the candida and leaky gut, is it very easy for it to return? I am so frustrated with myself. I should never have allowed him to be given so many antibiotics.

[faith]

mylittleangel,

I didn't know you could actually have a "test" for leaky gut. How did they do that? was it the naturopath or someone else? Also, what was the pill you mention that you started giving him to heal the gut?

 

Personally, I don't think it really matters if someone has or doesn't have any known tourettes in the family, for just in my opinion, it has to start somewhere, or better yet, it is very possible that the genetics are somewhere, but just didn't show up obviously. My son obviously has this, and I can't trace it to anyone but myself, who has had some tics as a child, but I can assure you that nobody in my family are aware of this, not even my mother, who just has no recollection of this. And I still have some compulsions, but only my husband is aware of them. So my point being, a disorder does not have to be obvious symptoms to be so, and if they are not obvious, then they certainly won't be diagnosed as such, and if they are not diagnosed, then no one down the line will really know about it.

 

 

faith

[Caryn]

How exactly did you get rid of the candida and heal the leaky gut? Did you use Nystatin? Did you do the candida diet? My sons IGg results also came back with around 17 allergies (dairy/casein, eggs, almond, sorghum flour, pineapple, citrus, Oat, Whey, Hazelnut, Tuna and a few others). Do you still have to avoid sugar? Once you get rid of the candida and leaky gut, is it very easy for it to return? I am so frustrated with myself. I should never have allowed him to be given so many antibiotics.

We did not use nystatin. We used natural treatments. I started with Threelac and a candida diet. I do use sweeteners but never refined sugar or any artificial or corn sweeteners. I avoided them though (except honey) for almost six months. I think for use it was the gluten and corn free diet over a long period of time that did it. We use kefir now and have for a while. Before the diet and after many courses of antibiotics he started having frequent episodes of undigested foods in his stools. He had a lot of diarrhea. He had episodes of frothy, cream colored stools that were very foul smelling. He had stomach pains and had very frequent burping problems that were pretty obvious and were not associated with immediate after eating burps. They were continual, hours after eating. He just seemed like his body was frementing and brewing something all the time. He had a huge, hard swollen belly a lot.

Now all is well. He has a flat tummy and normal stools. He has no digestive issues and never passes undigested food. No foul odors, etc... I believe that candida can easily return. I am always conscious about keeping it in check. We do let him eat sweets. I also incorporate foods known to curb candida too. I have read alot about the SCD diet but have never followed it to the letter. I do use coconut milk, coconut oil, garlic, etc.... I also use only mild, natural antibiotics now when he gets congested (oreganol-- oregano oil in capsule form).

[mylittleangel]

mylittleangel,

I didn't know you could actually have a "test" for leaky gut. How did they do that? was it the naturopath or someone else? Also, what was the pill you mention that you started giving him to heal the gut?

 

Personally, I don't think it really matters if someone has or doesn't have any known tourettes in the family, for just in my opinion, it has to start somewhere, or better yet, it is very possible that the genetics are somewhere, but just didn't show up obviously. My son obviously has this, and I can't trace it to anyone but myself, who has had some tics as a child, but I can assure you that nobody in my family are aware of this, not even my mother, who just has no recollection of this. And I still have some compulsions, but only my husband is aware of them. So my point being, a disorder does not have to be obvious symptoms to be so, and if they are not obvious, then they certainly won't be diagnosed as such, and if they are not diagnosed, then no one down the line will really know about it.

 

 

faith

 

Hi Faith,

 

The test for leaky gut is called Intestinal Permeability Assessment and was done by my naturopath. Basically, you drink a mixture of mannitol and lactulose, which are nonmetabolized sugar molecules. The test measures the amount of lactulose and mannitol recovered in a urine sample over the next 6 hours. The small intestine has the dual function of being a digestive/ absorptive organ for nutrients as well as a barrier against the absorption of bacteria, food antigens and large molecules. Increased permeability or leaky gut of the intestinal mucosal barrier can swell the number of toxins & antigens entering the bloodstream and lead to an overly sensitized immune system in some individuals. Decreased permeability, on the other hand, appears as a fundamental cause of malnutrition, malabsorption and failure to thrive.

 

We were given 2 different pills to use. We were initially given Permeability Complex (L-Glutamine, N-Acetyl D-Glucosamine, Saccharomyces boulardii, Lactobacillus sporogenes, Quercetin, and ginger root). Within 2 days of taking this, my son started to have a full body jerk. I immediately took him off it and the body jerk disappeared. My naturopath believes that my sons liver is not detoxing properly so anything that disturbs the toxins is going to cause an increase in tics. He also may have reacted to the L-Glutamine. I just put him on milk thistle to help his liver hopefully begin to detox properly.

 

With regards to my son, I do believe that there was a genetic predisposition for him to have these tics. I also believe that all the antibiotics he was on caused the tics to surface. I know there is a way that I can help him. I just have to keep trying. Many days I feel like giving up but then I look at his sweet little face and I know I have to help him. He's only 5 1/2 so none of his friends have noticed anything yet. He is very well behaved and extremely bright. He has a little bit of anxiety but nothing that is effecting his daily life. His older brother is 7 1/2 and never says anything about the tics. I guess he is so used to it by now.

[faith]

mylittleangel,

thanks for your answers to my questions. I would pay attention to the clue of him doing better in the weeks after removing gluten/dairy, and then something happening after giving him that supplment that's supposed to help heal leaky gut. I understand the premise, but I'm just not understanding how exactly those supps work to do that, but in any event, something was aggravated by it, either one ingredient, or just by possibly doing the job and like your naturo said, stirring up the toxins. Whatever it was, I'd stay with the gluten/diary free if you can, since those are the big ones as far as intolerances go, and as Caryn has pointed out food intolerances are basically hand in hand with gut problems. You'l just have to find a more tolerable way for him to heal, and it may just be by avoidance. I can't give any recs that we have used as I have not gone that route, but I do believe my son has some of the same issues, so identifying the things that bother him and cause increase in ticcing is basically what we pay attention to. You are not alone when you say you want to give up, but just keep going, it could be a long and winding road, but its gotta lead to somewhere.

 

Let us know how things go.

 

Faith