confused and discouraged

[lismom]

Hello, I am writing to ask some questions and see if anyone else is experiencing what we are. I wrote in some weeks ago so excited because the diet and supplements I put my son on were working so well. But, even though the tics he is experiencing has lessened some, he has one that is new and pick up intensity. He is neck stretching. Seems to be worse later in the day. Could it be that now because of the diet(wheat free, msg & artificials free), something is happening in his body because there is less junk in his system to feed off of. Should I add probiotics? Need some advice... Starting to get discouraged and I know it is early in this game. My son is 11 yrs old and his ticcing started this year. His tics are eye rolling, eyebrow scrunch, neck stretching and when his tics were severe he had full face grimace.

One more question, when he was at his worst and most severe he was on antibiotics this past holiday season, I had to stop it immediately which help lessen, but does that indicate that maybe he has a yeast problem and that really sent his system out of wack? Help!!!!!! Thank you, Kathy

[Tracey111]

Hi Kathy,

 

I don't have experience with antibiotics.

 

I did go all natural to try and control my son's tics. My son developed a head jerk tic that was horrible. Out of frustration, I wrote in like you did. I listed all of his foods and someone told me to check salycilates. He was eating a ton of tomatoes, cantaloupe, OJ, nuts, green leafy salad....this was all high in salycilates and once I took these out, he improved.

 

Almost tic free these days....except when he gets hot dogs....which he had last night and he started ticcing after school today!!! GABA, NAC, and Acetyl L Carnitine were the last supplements that I added, and they seem to take away the eye tics.

 

Hope this helps.

[CarolynN]

Hello!!!

 

I was just curious I could not remember why he was on antibiotics in the first place. Was it because the doctor suspected PANDAs (tics that are induced by strep)?

 

I also wanted to quickly add that I would get so frustrated at first, when I thought I had it all figured out for my son. He would be doing great and then tics would start up again. Every time this happened I was able to trace it to something he ate that I did not realize had one of the things in it he is sensitive to (MSG, High Fructose Corn Syrup, caramel color, yellow dyes, red dyes).

 

One time I had made a "homemade" cake but used whip cream from the grocery stores bakery department. I did not realize until after that it had something called calcium cassienate (I am not sure if I spelled that correctly) but it is a form of MSG. He started having tics and it drove me crazy trying to figure it out. Then I read the label for the whip cream and checked it against the long list of MSG alternative names and there it was. I know check all whip creams and dairy products for it.

 

Carolyn

[lismom]

Hi Kathy,

 

I don't have experience with antibiotics.

 

I did go all natural to try and control my son's tics. My son developed a head jerk tic that was horrible. Out of frustration, I wrote in like you did. I listed all of his foods and someone told me to check salycilates. He was eating a ton of tomatoes, cantaloupe, OJ, nuts, green leafy salad....this was all high in salycilates and once I took these out, he improved.

 

Almost tic free these days....except when he gets hot dogs....which he had last night and he started ticcing after school today!!! GABA, NAC, and Acetyl L Carnitine were the last supplements that I added, and they seem to take away the eye tics.

 

Hope this helps.

 

 

Thanks for responding, I noticed the same thing when my son ate a hot dog after not eating them since we started being careful. For him its the eye tic that got worse. Took 4 days to get out of his system. I was wondering what the NAC helps with as far as his system goes. Did you up his vit C with it? Kathy

 

One other quick question, are you on probiotics?

[CarolynN]

Kathy,

 

NAC helps the liver process out food chemicals, toxins, and excessive neurotransmitters. What I have found, through doing my own research, is my son's liver is low in something called sulfate ions. The NAC helps make up for the lack of these ions. Here is a post I did about it a while back http://www.latitudes.org/forums/index.php?...Carolyn\.N

 

From what I have read you want to take a high level of vitamin C, my son takes just over 1,000 mg's a day and he is 8, with the NAC. He is taking 1200 mgs of NAC a day.

 

The thing you may want to run by a naturopathic doctor is whether there is any concern with mercury being moved about in the body. NAC actually helps take out mercury in the body. Some have expressed concern on this forum as to how that process might work. The mercury, by the way, would come from the vaccinations. I ran this concern by my two naturopathic doctors and they were not concerned for Daniel. But Daniel has had very minimal vaccinations. So I don't know if there lack of concern was due to the fact he has little mercury in his body or if it just is not a concern in general. I do know one of the Naturopathic doctors told me this is one of the main reasons she uses NAC is to help people who have a mercury overload get rid of it.

 

I have to say the NAC seems to really have helped Daniel. I still have to watch what he eats but it has helped us not have to be quite so perfect on his diet all the time.

 

Carolyn

[Caryn]

I noticed you wrote "wheat free".

You may need to do gluten free. Neck ticcing has been reported in folks with gluten issues. My son exhibited neck ticcing way, way, back when we did not understand the difference between being wheat free and gluten free. He also had facial grimaces and other multifocal tics that were really scary for my husband and I to watch. After going gluten free we never saw another multifocal ticcing episode again. The neck tic we experienced was a nodding, turning thing that had about three methodical movements. I am not sure what your son's is like. The chemical free diet is excellent as well and we also do Feingold in addition to the gluten and corn-free diet.

 

I uploaded a PDF brochure to my blog a while back where a similar case was discussed. It was an 11 year old boy with a neck tic. He had an aunt with celiac.

Just click on the link and then click on the title to download or view the PDF file from my blog.

http://healthy-family.org/caryn/289/pediat...-celiac-disease

 

If this link doesn't work you can access the PDF from the Article: http://healthy-family.org/caryn/289

under the info provided about Dr. Bruce Roseman, M.D.

 

Oh, and one more thing--

About the antibiotics, they may have had gluten in them. It is possible that this could have caused an increase in ticcing if your son is undiagnosed Celiac. There are other things that could cause this as well, and yeast issues may have something to do with it. I don't know what kind of testing you have done or plan to do. Celiac testing requires daily ingestion of gluten for 30 days for an accurate positive reading. Otherwise the patient could get a false negative. Again, this may not be the issue in your case. It is the exception more than the norm, I would think. I am just giving you info based on my personal experience from the Celiac standpoint. The good news is, my son is doing great now, without any relapse. Our two-year anniversary will be this spring.

[lismom]

I noticed you wrote "wheat free".

You may need to do gluten free. Neck ticcing has been reported in folks with gluten issues. My son exhibited neck ticcing way, way, back when we did not understand the difference between being wheat free and gluten free. He also had facial grimaces and other multifocal tics that were really scary for my husband and I to watch. After going gluten free we never saw another multifocal ticcing episode again. The neck tic we experienced was a nodding, turning thing that had about three methodical movements. I am not sure what your son's is like. The chemical free diet is excellent as well and we also do Feingold in addition to the gluten and corn-free diet.

 

I uploaded a PDF brochure to my blog a while back where a similar case was discussed. It was an 11 year old boy with a neck tic. He had an aunt with celiac.

Just click on the link and then click on the title to download or view the PDF file from my blog.

http://healthy-family.org/caryn/289/pediat...-celiac-disease

 

If this link doesn't work you can access the PDF from the Article: http://healthy-family.org/caryn/289

under the info provided about Dr. Bruce Roseman, M.D.

 

Oh, and one more thing--

About the antibiotics, they may have had gluten in them. It is possible that this could have caused an increase in ticcing if your son is undiagnosed Celiac. There are other things that could cause this as well, and yeast issues may have something to do with it. I don't know what kind of testing you have done or plan to do. Celiac testing requires daily ingestion of gluten for 30 days for an accurate positive reading. Otherwise the patient could get a false negative. Again, this may not be the issue in your case. It is the exception more than the norm, I would think. I am just giving you info based on my personal experience from the Celiac standpoint. The good news is, my son is doing great now, without any relapse. Our two-year anniversary will be this spring.

 

Thanks so much for the info. I think and hope you are right on both points you brought up. The week following his increase tics and severe outburst of tics on antibiotics I had him on a strict diet, low or no sugar and lots of water. Then incorporated some supplements everyone seems to use and by the end of that week his was nearly tic free. Then I am not sure what happened. Also I did limit his dairy during that week. I tried to keep gluten free with snacks but not sure if some of the gluten free snacks, like some cookies had something else in them. Also he has been allowed to have chips but now not sure maybe that fed into underlying yeast issue. I want to have that checked. Who tests for that? I think I may start all over again and only let one thing in at a time. He did test positive at his allergist for wheat. I have requested a Rast test. Of course they were reluctant. I appreciate your input. I hope I can ask more questions at another time. Thanks again, Kathy

 

I did have one more question. When you went gf did you take dairy out, and did the tics get worse before they got better because the diet probably caused some yeast die off?

[Caryn]

I did have one more question. When you went gf did you take dairy out, and did the tics get worse before they got better because the diet probably caused some yeast die off?

Kathy,

Yes, we eliminated dairy. Now we rotate it in and use enzymes every time he eats dairy. Our original diet was very restrictive. I commited to six months before I was going to just quit and go the medicine route. Well, after six months he was doing so much better that I prolonged it. I did start to rotate in some sweets after six months. By nine months he was doing fantastic. It is a long slow recovery process if in fact you are dealing with leaky gut issues. Your son is going to need a lot of support. I suggest you look into POCHA in your area and talk to the school nurse about a support group at school. He may find a friend with a peanut allergy that he can bond with while going through all this. Your whole family is going to need a lot of education and support. If everyone bands together you can do this and he will hopefully make a good recovery. Definitely get the lab tests done, though, to really help figure out what is going on. I'm not sure if your doctor practices the Dan protocol or not. We had all our testing done with a Dan doc. You want to make sure that the symptoms are not related to other factors-- heavy metals, viral/bacterial issues, candidasis. You may have to work with a variety of cures at one time-- candida and allergy issues.

 

I have always had my suspicions about yeast die off with my son. We did the candida diet first through a naturopath who did not do any testing. We saw what could have been considered 'die off' symptoms but without proper testing, who knows? It may have been allergy related spikes. The candida diet allowed fermented foods and they contained corn (a food my son is highly reactive to). So I just don't know. By the time we did the testing for candida it did not register (four months later). He had fluctuating symptoms but was much better on the candida diet than previously. Now he is stable. An exposure to an allergen will cause very slight under-the-radar symptoms. His gut is healed finally and he is growing great and very happy, well adjusted. The kids at school are very supportive and so is the teacher. We just don't make food an issue. We did do a formal 'intro and explanation' to the class at the very beginning of the year. I used a storybook about a child with celiac and read it to the class. Then we all discussed it. Everyone wanted allergies after that- LOL. It was very beneficial to my son and he has a lot of really great classmates that look out for him now.

[mylittleangel]

Caryn,

 

Could you go into a little more detail regarding what kinds of food you fed your son while treating him for leaky gut and candida? We are about to start that process with my son and I would like to go into it prepared with a number of food options that I can feed him. He is only 5 and is quite under weight for his age (36 lbs.). I worry that he will lose more weight during this healing process. Did you find that with your son? Also, did you use Nystatin to fight the candida? We used it, along with a strict diet for 3 months and it seems that he still has candida and leaky gut. I have heard people use Oil of Oregano, Pleo, ThreeLac. What did you use?

 

Thanks so much for your help.

[Caryn]

Could you go into a little more detail regarding what kinds of food you fed your son while treating him for leaky gut and candida? We are about to start that process with my son and I would like to go into it prepared with a number of food options that I can feed him. He is only 5 and is quite under weight for his age (36 lbs.). I worry that he will lose more weight during this healing process. Did you find that with your son? Also, did you use Nystatin to fight the candida? We used it, along with a strict diet for 3 months and it seems that he still has candida and leaky gut. I have heard people use Oil of Oregano, Pleo, ThreeLac. What did you use?

 

Have you tested him for Celiac? Low growth rate is a classic sign in pediatric cases. My son was underweight and short for his age (And mommy is 5'9) before diagnosis. Is he anemic? That is another sign. Also, dental enamel issues can be another. Your dentist should know. Many say that dentists are the best doctors for discovering pediatric cases of celiac based on basic dental exams.

 

I have to stress that in our case the candida diet was not as successful as the gluten free diet in the long run. We did not use Nystatin. We did use Threelac. We did not use oreganol at the time, but have used it since to keep him from catching the cold going around our house (it works).

 

Our son had a tremendous growth spurt after going gluten free. He is much taller and his coloring is much better. He is still on the skinny side compared to his younger brother who does not have the celiac gene.

 

If you look at the SCD diet it is very similar to what we did. We avoided all grains except rice, which is not allowed on the SCD diet. We also avoided peanut butter, chocolate, egg yolks (as per his IgG test results), and various other fruits. We fed him potatoes (which is not allowed on SCD diet, but he did not test intolerant to). We did not feed him any sweetener unless it was honey. He had shakes every morning and still does that were a combination of goat milk kefir, fruit, and natural calm magnesium. I was consistent. That's the main thing. We did it in the spring and summer months which made eating fresh fruit and veggies easier. I made him a lot of salads and he learned new eating habits. I made natural freeze pops from real fruit juice with no added sugar. I was really basic and he ate the same things over and over until he got better. I took about nine months total. Now he eats a more varied diet and does eat sweets (homemade stuff and never refined sugar or iodized salt). I feed him stuff I make with evaporated cane juice (looks like sugar) or honey. I add MUCH less than what the average person does.

 

I don't know what symptoms your son has/had, but my son's gastro symptoms were pretty bad prior to the diet. He had frequent loose watery stools and occasional creamy colored and foul smelling diarrhea. He used to pass undigested foods in his stools quite frequently. He was always sick with something too. Ear infections, croup, sinus issues, irritability, sleeplessness.