overwhelmed with diet- is it worth it?

[Toms_Mom]

hello everyone,

As I have posted before, last June my son started ticcing and we went on the Feingold diet and then went dairy free and organic. Seemed overwhelming at first, but then became a lot easier- my sons tics stopped completely for about 6 weeks. I started worrying they might come back and then of course they did! He started a neck stretching tic and we did the IgG testing and he came back with 1's to tomato, oat, bakers yeast, cantloupe, coconut, goats milk, rye and soybean and 2's to cows milk, eggs, wheat, brewers yeast, cheese and pumpkin(which he has never had) I also know he reacts to cane sugar and corn which didn't show up on the IgG but did on the p/n testing at the environmental drs.

 

I have been doing a rotation diet from the immuno lab for about 3 weeks and feel like it is taking over my life. All I think about are meals and what can I make him for breakfast with no wheat, milk, eggs, oatmeal etc. The feingold diet is a piece of cake compared to this. Not to mention the expense - I go to Whole Foods almost everyday. My son, who is a very good eater- not picky at all came home in tears today from school because they made solar systems out of candy and he knew he couldn't eat his- he's in first grade and it seems like they are constantly giving out candy and junk - he knows he can't have it and it is really starting to get to him when they eat cupcakes etc in front of him in school. I don't talk about tics to him- just his allergies. Before he was cheerful and willing about the feingold diet but now with the extremely limited diet it is getting really difficult for both of us. On top of that I feel like I am neglecting my 3 older children with all the time I spend trying to help my youngest.

 

Kim, I think you said you don't worry about cutting out reactive foods and just use digestive enzymes? Which kind should I use? Was your son reactive to lots of foods as well? I am wondering should I just supplement more and not worry about the special diet. Right now I am only giving him Kirkman probiotics. Was using Kids calm but it seemed to stop helping? Not sure about the best multi to use and should I try a b-complex?

 

Caryn, since you eliminate wheat do you worry about rotating? There are lots of good rice cereals and pancake mixes but its only allowed every 4 days. From what they say if you don't rotate it you will become allergic to other foods as well. Do I really have to worry about him developing an allergy to rice?

 

When we went to see the ped. neurologist last Aug. he said on the tic disorder spectrum he would rate him at 20% and he would outgrow it. I am starting to wonder should I just stop worrying so much that its going to get worse-(my biggest worry), have faith, feed him a healthy diet and give him good supplements - maybe even Bonnie's? I am praying for the right answer. Thank you all.

[faith]

TomsMom,

Since you had the Igg test, have you eliminated the no. 1 foods? If so, did that seem to help any with the neck tic? Or are you just rotating the foods?

 

The only way it is worth sticking to the dietary restrictions is if it is helping. I know it can be hard to stick to, but the fact that you sought out the Igg testing once he started the new neck tic kind of shows how much you wanted to find something that would help. If you think it is NOT helping any, than I think what you said about just feeding him a healthy diet would be best. I think only you can answer that question -- if sticking to it keeps his tics to a minimum, then you have to decide if it is worth it to you and your family. I suppose you could ease up now and then and just see how it goes.

 

Faith

[Laurie in Az]

Hi Tom's mom- it all sounds very overwhelming. I can relate. I started going to the yahoo discussion group, EnzymesandAutism@yahoogroups.com. There are people there who use digestive enzymes and are able to add foods back into their children's diets. It is worth joining for the digestive enzyme info.I am just beginning to try them for my DS. It makes sense to me that if you heal the gut and add help with the digestion then foods would be less of a problem. It's too soon for me to know if the digestive enzymes are working. Hang in there. It will get better- we just don't get to know when.

 

Laurie

[itsme]

Hi Tom's mom,

 

we have been using bontech sups wirth very good results over the past 7 months. We also stick to a very limited diet and we are currently having him treated for allergies with a NAET dr. Alot of this seems to be trial and error. There is so much that we can do for our kids. Up until about a year ago i didn't think there was anything that could be done for these tics (i had them for 30 yrs.) i am astounded to know that they can actually be treated and in most cases with great success.

 

You said you tried bontech sups - did you have any success with them?

[Chemar]

Hi Tom's Mom

 

honestly, and only because my son did not show any clear food *allergies*, the only things we avoid are the artificial garbage and any foods that aggravate his Crohn's Disease. I do buy organic, and we do make most things from scratch. But like Kim, my son takes digestive enzymes (Digest-ease by Nature's Herbs) plus his assorted supps and eats a complete diet.

We have only ever run specific allergy tests and so he may well be sensitive to other foodgroups, but not so that it has caused him problems with either tics or Crohns. When he was first starting out on alternatives, we did do an elimination diet at the recommendation of the radiogenics therapist, but honestly saw no additional improvement by cutting out anything, and all it was really doing was upsetting my son not to eat good healthy food he wanted, and as you have noted, running up high $$$$

 

I do feel strongly that if one shows allergy to a food, it should be eliminated. But I am still not too sure how I feel about the intensity that some doc's and patients seem to take this to, when there are mild sensitivities rather than allergies. And it concerns me that kids are often feeling more stress, and hence ticcing more, from unnecessary rigidity with diet.

 

it MUST be stressed again that my son has genetic TS, and I have said many times that I have never expected the treatments we use to "cure" his tics, only to keep them mild and not interfering with his life like they used to. I do not believe we currently have any "cures" for TS, tho I am hopeful they will come, but I follow the nutritional program of healthy diet and supps because it most definitely has turned my son's TS from very severe to very mild.

 

However, there are kids who tic directly related to food allergies, and I absolutely see that it is essential to remove offending foods from their diets.

 

I just feel once again, as in all things, that balance and moderation is best, and that we should not allow obsession with "fixing" the tics to cause us to implement drastic changes that *may* not be necessary.

 

JMHO

[Toms_Mom]

Faith,

The rotation seemed to be working at first and yes I eliminated all of the reactive foods, had a slip up at halloween and my husband accidently fed him wheat pancakes in addition he had some candy. The neck stretch is back although it's mild - only see it occasionally throughout day.

 

Itsme,

No we haven't tried Bonnies but would like to maybe try.

 

Laurie,

Thanks for the info on digestive enzymes- would really like to look into this.

 

Cheri,

I am really confused about the whole "allergy" issue. He is not IgE to anything I don't believe- just IgG and those are all 1's and 2's -no 3's and 4's - so how important would it be to eliminate these foods completely from his diet? I am all for cooking from scratch, organic and getting rid of all junk food. It's just the limited amount of food in this diet that is bothering me- and my son is a big eater- he is always hungry.

 

Sorry for the short response - going out of town and my husband is ready to go- will check back Sunday night. Thanks to all!

[Chemar]

Hi again

 

if there is delayed sensitivity to foods (which is a form of allergy) then it can, from my understanding, be just as undermining to the immune system as a full blown allergy. Just takes a while longer to manifest.

And, as with all allergies, when the body is fighting the allergen it will usually be manifesting the effect in other ways, eg with increased tics, negative mood, behavior, respiratory and digestive maladies etc

 

so I am truly not suggesting one ignore alergies or even sensitivities, just that one need to take a balanced approach and, if there arent serious food reactivities, then maybe try the enzymes and see if that helps with those that there is mild to moderate sensitivity to.

 

we did not do many of the tests that are available now when my son first started with his alternative/natural treatments, and so I am by no means as clued up on these as most of you.

 

just adding my 2c worth on taking a balanced approach to all this and take it a day at a time. Sometimes we just wear ourselves out by trying too much all at once, and so we sometimes need to just stick to the basics that work and slowly work on the rest, a small step at a time.

 

hope you have a peaceful and relaxing weekend away.

[P_Mom]

Hi again

 

if there is delayed sensitivity to foods (which is a form of allergy) then it can, from my understanding, be just as undermining to the immune system as a full blown allergy. Just takes a while longer to manifest.

And, as with all allergies, when the body is fighting the allergen it will usually be manifesting the effect in other ways, eg with increased tics, negative mood, behavior, respiratory and digestive maladies etc

 

so I am truly not suggesting one ignore alergies or even sensitivities, just that one need to take a balanced approach and, if there arent serious food reactivities, then maybe try the enzymes and see if that helps with those that there is mild to moderate sensitivity to.

 

we did not do many of the tests that are available now when my son first started with his alternative/natural treatments, and so I am by no means as clued up on these as most of you.

 

just adding my 2c worth on taking a balanced approach to all this and take it a day at a time. Sometimes we just wear ourselves out by trying too much all at once, and so we sometimes need to just stick to the basics that work and slowly work on the rest, a small step at a time.

 

hope you have a peaceful and relaxing weekend away.

 

 

Hi Chemar,

I was wondering about your son, how his TS manifested? Just curious to have something to compare PANDAS onset and inherited TS onset. You said your husband and his father had TS. Were they offically diagnosed with this? Does your husband still have symptoms? Also, how did your son start to show symptoms and at what age? How old is he now and how is he doing? I know, a lot of questions, this is new to us and I feel overwhelmed? Thanks for your help!

 

Kelly

[Chemar]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

[P_Mom]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

 

 

Hi Chemar,

Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again!

 

Kelly

[P_Mom]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

 

 

Hi Chemar,

Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again!

 

Kelly

 

 

Oh, I forgot, is is okay to give Taurine and Magnesium, two sep. supps. together, or should I get Mag. Taurate? Was your son's Crohn's related to his TS?

Kelly

[moobawa]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

 

 

Hi Chemar,

Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again!

Kelly

 

 

Hi Kelly,

 

Our oldest son had an overgrown yeast infection about 2 years ago... he had sever dry skin around his eyes, nose, arm pits, trunk and various other locations. We took him to doctor after doctor and they either said it was eczema or psoriasis and kept tossing medicated creams/ointments at us for topical use. All of which contained cortisone. We read up on cortisone first and decided not to take that route because of the dangers. We read "The Yeast Connection" by Dr. Crook. We followed the diet closely and also bought his cook book. Along with this, we took him to a NMD who is the only doctor that diagnosed our son with a yeast overgrowth. He gave us a prescription for Oral Nystatin and also had our son take acidopholous (sp?) in a powder form that we put in milk or in apple sauce. It has been two years since he had that and has not had any signs of a yeast overgrowth.

 

We did get back into a less strict diet... we have had some foods like breads with yeast, switched to evaporated cane juice instead of processed sugars.... but since we have slacked for quite a while, I wonder that we shouldn't have. About a week ago he started developing eye blinking and rolling. The Ped. said he wasn't sure if it was tics because there isn't any squinting going on. He explained that a lot of brain development takes place at this age (he's almost 8 years) and that probably has to do with it. He shrugged and stated that it is common among kids at this age and that it'll probably go away. But he said to give it a week and then take him to an ophthalmologist since he isn't positive it is tics.

 

I am wondering now if it isn't yeast related. Dr. Crook is passed on now but he has a website that other devoted to the cause maintain... I'm going to contact them and ask if there is any possible connection to our sons symptoms yeast.

 

I hope this helps you some. Please feel free to ask any questions.

 

Sincerely,

 

Heather

[kim]

Tom's mom,

 

I'm so sorry that I didn't reply sooner. It looks like you have gotten a lot of good advice and replies.

 

Kim, I think you said you don't worry about cutting out reactive foods and just use digestive enzymes? Which kind should I use? Was your son reactive to lots of foods as well? I am wondering should I just supplement more and not worry about the special diet. Right now I am only giving him Kirkman probiotics. Was using Kids calm but it seemed to stop helping? Not sure about the best multi to use and should I try a b-complex?

Honestly, I do worry about the reactive foods. My youngest son tested highest to cows milk and peanut...two of the things that he actually eats. I just didn't and still don't have the guts to totally eliminate them from his diet. Really, I'm afraid I will flare tics if I radically change things for him. I know this flies in the face of everything that we read here. I'm not even sure I can explain it. Tics for the most part, are not his problem. It has been more of the bedwetting, inability to eat normally, that have been worse. At one point, I did see a tic reaction within minutes of eating pretzles. The enzymes help with the frequent stomach aches/reflux symptoms and seemed to help with tics after wheat.

 

I'm in the process of seeing if I can get him to see someone to work with him on oral sensitivities. I'm not sure that I want these kids anywhere near "mainstream" medical people (need a referral from MD), but there is a little part of me that wants to see what he can "do" for someone else.

 

Everytime he tries a new food, he'll literally gag to the point of vomiting.

I have read several times that metallothinine deficiency affects taste/texture sensitivity. I'm not sure that this child isn't avoiding other things (like other forms protein) because his system can't handle it.

 

B12, zinc and I believe taurine have been essential to his overall health, IMO. I had no idea, that children with these limited diets were so lacking.

 

If you want to add a multi b, you may want to use what Chemar gives her son. The royal jelly is supposed to be a great source of B's. Just start low and work up. Kids can handle B's differently. I'm not sure how royal jelly is supplied, but if you have options, go slow.

 

The question about the multi, is a good one. There are a few suggestions here, you may want to use the search feature to see what others have suggested.

 

This is an article that is load with info.

I have it copied and read back through it every now and then. There are so many references to things discussed here often, that I think everyone will get something out of it. It's funny how you pick up on things the 3rd or even 4th time you read something. Also, I'm always on the lookout for what will eventually be discovered genetically, that will lead to treatments that will help the most, for individual situations (that's why I follow Yasko as much as time permits!)

 

http://www.newtreatments.org/fromweb/sulfur.html

 

almost forgot...from response to Kallik on another thread

 

If you throughly read through these sites, you will get a better handle on the whole thing. Just use the menu on the left.

 

http://www.enzymestuff.com/

 

These are the enzymes that we use. After reading through the site, you can click on the pictures of the bottles in the upper right, to get a brief overview of what each one works best for. I know it can be overwhelming.

 

http://www.houstonni.com/

[Toms_Mom]

Kim,

Thank you so much for taking the time to reply- I know you must be busy with your own family and I hope all is going well with your boys.

 

A while back you told me I might be concentrating too much on eliminating certain foods and it is more important to look at the big picture and the healing of the gut. I realize now how right you were because my son is now allergic to so many foods. I am trying to stick with the 3 month elimination of reactive foods and rotation diet, but it is so hard. The environmental dr. has assured me if we stick with the diet he WILL be able to tolerate these foods in time. We have added digestive enzymes(AFP petizyde) and I am not certain if that is enough. I don't know if he needs the zyme prime as well? From what I understand the enzymes will also help with preventing other food allergies from developing.

 

At the enzymestuff website some people have claimed they were able to go off the gfcf, soy free, egg free etc. diet with the use of enzymes and that they actually do BETTER off the diet with the enzymes because they are getting more nutrients. I am wondering if that is possible for us. The fact that your son can tolerate milk and wheat with the enzymes gives me hope. So far my son has had no bad reactions to the enzymes( about 5 days on them) It sounds like with the enzymes your son has no reaction from the milk?

 

My son seems different from yours in that his main problems are tics, stuttering and bedwetting (only after milk) and they all SEEM related to only food allergies. He has a reaction every time he has a reactive food- it is so predictable.

 

My main question to put out there is if his tics are directly related to food allergies which I assume means a leaky gut, what is the best approach to healing? (His dr. is older and doesn't seem to be able to answer all of my questions. I wonder if it was his chronic constipation for 2-3 years that caused the leaky gut. I think the milk caused some of the constipation but I also think it started to become a voluntary action on his part- I still to this day have to encourage him every day to go to the bathroom or he will hold it - I am hoping in time it will become a habit but for now I just make sure he goes every day. I did not do this before the tics started.

 

I am also wondering would the bontech supplements be beneficial in our case or should I just give him the B12, Zinc and Taurine? All of the multi- vit. out there seem to have manganese, or some added ingredient he can't have. I thought about ordering the bontech and maybe just giving him 1 or 2 a day - do you think that is a good idea?

 

Thanks for the article link to newtreatments.org. I will probably try to read it again to understand more- not as knowledgeable as you with all this stuff, but I agree - when I go back and read these articles or posts later I get more out of it or I learn something different each time.

 

THANK YOU so much for all of your advice and don't worry about getting back to me quickly - I really do appreciate all you do for this group- I hope you and your family have a relaxing and peaceful Thanksgiving.

[Caryn]

Okay,

Just a quick note because I have a bathroom to clean for tomorrow-- hee hee

We did a six month elimination diet for Tigger. Ds was allergic to many things (all food, no environmental-- except a few toxic chemicals). We have since been able to reintroduce all but two things back into his diet. I do not religiously follow the rotation now, and do tend to give some foods more than two days in a row at times. I have gotten pretty liberal, actually.

The diet is tough. I will say that, but for us it was worth it. We had some huge gut issues to deal with. Are you giving your son a probiotic? The diet really helped to heal that stuff faster IMHO. When the gut improved so did his mood. We do a lot of supplements. We did the Bontech and were very happy. We now do a compounded vit that is only 4 caps a day.

Something I learned on a few celiac forums I belong to is that if a child has a neurological response to gluten it will elicit multiple allergies and when gluten is removed from the diet the multiple allergies will eventually go away. I am not sure I agree with giving digestive enzymes to help the body break down the gluten. IMHO I think that elimination is the way to go until the gut recovers. You can then reintroduce in six months. In our case wheat was still not tolerated, nor was corn. So we are permanently eliminating those two until I get brave again in another six months or year.... or never. I'm undecided right now.

I will say one more thing-- after Tigger was on the pristine elimination diet five months I noticed that the vits were no longer necessary to eliminate the tics. I really wondered why that was. This was what pushed me to research the whole gluten issue. It is a neurotoxin just like MSG. Milk is considered one as well, but not nearly as strong as gluten. I now see a little more light ticcing since Halloween, mostly because of dietary infractions-- many people just don't get it. We have had several occasions where adults have given him candy with gluten even after he has told them he can't have wheat. This motivates me to continue with what we are doing. I know we are on the right track here.

Caryn