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Advice needed!


Anna1970

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Hi, I am new and I am nervous about posting took me a few days to come and really do this but, i just want wondering if someone could give me advice?

I have a 4yr old son he is my 3rd child, and for the past year and half i have noticed him ticking! he does his eyes squinting them, clenching of his fists while he curls his toes in, stretching his mouth, and sniffing through his nose.

i am at a loss i did bring him to my Doctor but he said all kids get Tick's :) i said well my other kids never did he said they may have just never noticed them! after about a month of me bringimg him to the Dr they let up not totally gone but i hardly noticed them at all. I have noticed them now for the past few months and they are getting worse when he started ( well when i noticed them) he was only squinting his eyes and clenching his fists and now there are many more!

I feel so bad for him b/c he just started J/K, i do not want other kids to make fun of him :( i know i cant stop this but it makes me so sad for him. On top of this he has a speech problem not to many people can understand him. ( he is getting help with that)

I guess i would just like to know how to handle all this i feel so bad for him and want to make it all better..

i am so sorry for rambling on like this but i don't know where to turn i am at a loss!

thanks for reading

Ann

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Welcome Anna,

 

You are doing such a service for your child by trying to find answers. It took me a while to find the answers for my son's tics. After MUCH prayer, research, and doctors visits we finally got our answer. I am attaching the post I made that explains what I found out for my son. It basically came down to MSG, Yellow dye #5, Red #40 and High Fructose Corn Syrup. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2598 . I know for some people it can be other factors too like dairy.

 

Also Bonnie Grimaldi's TS-Plus has done wonders for us. She has an internet sight http://www.bonniegr.com/index.htm . I am sure you will find a lot more people posting about her vitamins on this website.

 

I know it is hard when you don't know the answers. There are natural things you can do to help your son. It is just doing the investigating.

 

I also would HIGHLY recommend you obtain a copy of Shelia J. Rogers book "Tic's and Tourette's" . This book gave me so much hope in finding the answers for my son and ways to go about it.

 

Carolyn N.

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Carolyn.N..

 

thank you so much i will look at the links as soon as i have a second to read them alone!

I have read a lot on the net and there is one thing i am sure of i do not want to put him on the Meds for tic's I would like to find other ways to help him. i have been writing down what he eats and how well he has slept that night i have read somewhere if they do not sleep well at night this could trigger Tic's

I will let you know one thing I live in Canada so I don't know if theses vitamins would be here or not i will look thought

again i want to say thank you!

Ann

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Ann,

If your son's tics don't seem to wax and wane and don't seem to be connected to stress, and seem to just continually increase over months then you should consider allergy testing. We discovered our son had a severe wheat and corn allergy/intolerance and a strict gluten free corn-free diet has alleviated symptoms for us consistently now for the past 6 months. (Still has mild, unnoticeable tics probably because it is hard to be 100% with gluten and corn). My son is 4 1/2, too. I understand what you mean. Read some of my earlier threads if you think it may be wheat/gluten or corn. That is one of the simplest things you can do and the results are pretty quick (two weeks for improvement, roughly). In addition, like Carolyn, we have omitted artificial stuff from the diet. That is necessary for improved neurological function in all kids, not just TS. You want to get rid off everything with neurotoxins in them (MSG, aspartame, colors, Sodium Benzoate, etc...) Just read the labels and buy organic when possible. We also have a corn-free house here. We eliminate all corn, not just HFCS. In our case corn is pretty damaging for hyperactivity and attention, bed wetting in oldest ds. Vitamins are essential, as the body would be deficient from lack of proper absorption. We do vits, minerals, and amino acids. I am pretty sure Bontech would ship to Canada. If not, just get a good multi (non-synthetic), a B6, magnesium taurate or citrate, vitamin

C and E, for starters. Some kids take fish oil, others do flax oil. Some do omega 6s like borage or evening primrose. You need to experiment to see what is agreeable to your son.

Welcome. You've come to a fabulous place. The parents here are well informed and have loads of experience. I learn something from this forum every time I log in.

Caryn

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Caryn

 

ok so this may sound silly but do i just take him off the wheat and corn or do i ask the Doctor for testing? i dont know how that would go over it took 3 of us to hold my son down just for a flu shot lol

i will try anything as of now!

i look at him and see more tic's coming out it is like i am looking for them! i know crazy...

Also his mood changes like a drop of a pin he will be fine and the next he is frustrated and angry.

i am sorry for rambling on but i keep thinking of more i want to say!

Ann

 

Oh yes i wanted to know what does wax and wane mean??

sorry i am so new to all this!

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Caryn

 

ok so this may sound silly but do i just take him off the wheat and corn or do i ask the Doctor for testing? i dont know how that would go over it took 3 of us to hold my son down just for a flu shot lol

i will try anything as of now!

i look at him and see more tic's coming out it is like i am looking for them! i know crazy...

Also his mood changes like a drop of a pin he will be fine and the next he is frustrated and angry.

i am sorry for rambling on but i keep thinking of more i want to say!

Ann

 

Oh yes i wanted to know what does wax and wane mean??

sorry i am so new to all this!

 

 

Caryn,

Hi, my name is Kelly. I jst was reading your post and I noticed your son had a flu shot. Was this recently and do you think the tics started after the shot or increased after the shot? Tics, mood and behavioral issues, can be the result of an immune disorder, , like an over active immune system affecting areas of the brain responsible for behavior and movement, and this can be aggravated by immunizations, shots, infections, strep, etc. Go to www.webpediatrics.com, click on PANDAS/PITANDS and read the info. I don't know, maybe this can help. Wax and wane means to increase for a time (WAX) and then periods of decreased activity (wane). This is a pattern of some tic disorders, wax and wane.

 

Kelly

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Caryn

 

ok so this may sound silly but do i just take him off the wheat and corn or do i ask the Doctor for testing? i dont know how that would go over it took 3 of us to hold my son down just for a flu shot lol

i will try anything as of now!

i look at him and see more tic's coming out it is like i am looking for them! i know crazy...

Also his mood changes like a drop of a pin he will be fine and the next he is frustrated and angry.

i am sorry for rambling on but i keep thinking of more i want to say!

Ann

 

Oh yes i wanted to know what does wax and wane mean??

sorry i am so new to all this!

 

 

Caryn, (I mean ANN!)

Hi, my name is Kelly. I jst was reading your post and I noticed your son had a flu shot. Was this recently and do you think the tics started after the shot or increased after the shot? Tics, mood and behavioral issues, can be the result of an immune disorder, , like an over active immune system affecting areas of the brain responsible for behavior and movement, and this can be aggravated by immunizations, shots, infections, strep, etc. Go to www.webpediatrics.com, click on PANDAS/PITANDS and read the info. I don't know, maybe this can help. Wax and wane means to increase for a time (WAX) and then periods of decreased activity (wane). This is a pattern of some tic disorders, wax and wane.

 

Kelly

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Caryn

 

ok so this may sound silly but do i just take him off the wheat and corn or do i ask the Doctor for testing? i dont know how that would go over it took 3 of us to hold my son down just for a flu shot lol

i will try anything as of now!

i look at him and see more tic's coming out it is like i am looking for them! i know crazy...

Also his mood changes like a drop of a pin he will be fine and the next he is frustrated and angry.

i am sorry for rambling on but i keep thinking of more i want to say!

Ann

 

Oh yes i wanted to know what does wax and wane mean??

sorry i am so new to all this!

 

 

Caryn, (I mean ANN!)

Hi, my name is Kelly. I jst was reading your post and I noticed your son had a flu shot. Was this recently and do you think the tics started after the shot or increased after the shot? Tics, mood and behavioral issues, can be the result of an immune disorder, , like an over active immune system affecting areas of the brain responsible for behavior and movement, and this can be aggravated by immunizations, shots, infections, strep, etc. Go to www.webpediatrics.com, click on PANDAS/PITANDS and read the info. I don't know, maybe this can help. Wax and wane means to increase for a time (WAX) and then periods of decreased activity (wane). This is a pattern of some tic disorders, wax and wane.

 

Kelly

 

 

Hi Kelly,

my son has had Flu shot before and i didnt notice anything before. Last fall he didnt get one b/c of shortage but this year since he has Asthma he was a priority to get the flu shot. he also has this skin disorder call Falulictis (sp?) it is a rash on his body something to do with the hair follicles it is extremely itchy .. so i donut know if all of this is connected or not but i just want to find some answers for him!

Thanks for letting me know what wax and wane means

i will check out the link you gave me after i pick my son up from school t

thanks once again!

Ann

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Anna,

 

In regard to the allergy testing I cannot say enough about NAET (it involves no shots). We do something similar with a doctor in Phoenix Arizona. She has a slight variation on it. You may want to check into a NAET doctor in your area. There is a NAET website at http://www.naet.com/ . The only problem with NAET is it is a lot of visits and it can get expensive. But I have read terrific results and we have seen great results with our family. The doctor knows how to actually desensitize a person to their allergy.

 

There have been quite a few posts regarding NAET on this wesite so you might want to do a search on here and see what else you can find.

 

Carolyn

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I will talk to my doctor about this but i hope it will not cost much money b/c i am a single mom raising 3 kids :wacko: and fund are tight!

today has been a bad day i am getting so down i am thinking now what i did wrong. his teacher said he really noticed him ticing today that makes me so sad i could just sit and cry i am so overwhelmed with all this! i just dont know what to do next!

everyone i have talked to keeps telling me to leave it be he will outgrow it well he has only became worse with time.

i dont want to put him on any meds , but i dont want him to go through this either! i am truely at a loss. i even yelled at him tonight something i do not do! b/c he spilled Milk at dinner! i need to take a long bath and relax and do what i do every night PRAY!!!

ok once agian i am rambling on!

Ann :blink:

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Hi Anna1970,

 

I know right now it is hard to understand what life may be for you and your son. I wish there was a magic sentence I could type to make it all better and easy to cope with. We are all learning every day and we all started where you are today. It does get easier over time and you will become more at peace with everything. I found it usefull that every time I found myself losing it per se, I would just go to the bathroom and try to regroup myself. If you can find your thing that will allow you a few minutes to regroup you may be able to keep from snapping at him. I wish you the best and I know you are a strong women, you can do this with the rest of us!

 

 

No regrets and no sorrows!

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Tsmommy

Thank you so much for the words of encouragement they were much needed!

I was just up and looking at my son while he is sleeping and i see how see and at peace he is i am so glad he dont have tic's while he is sleeping...all i have to really do is think about when he was born i almost lost him.. Thank God i have him even if he has tic's i still have him and he is the most lovable kid you will come across that is why i get so upset when he is up set but i guess i have to think he is human like everyone else!

i am so happy i have found this group and i will learn to cope with this..... i think my son is doing better then i am!

well once again Thanks!

Ann

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Ann,

 

It is going to get better. Once you find the triggers you will not be so keyed up about it. It is always darkest in the beginning. The first thing you can do is just limit the artificial stuff. Keep fresh fruits and veggies available and steer away from prepackaged foods. Avoid luncheon meats unless they are all natural (Hormel has a line). Get a simple menu going for the week and stick to it. You can do this cheaply if you are organized enough (Make a roast chicken one night, and then strip the carcass to make chicken salad the next day, etc...) Read all labels and watch out for anything you can't pronounce. Avoid fast food places too. Get some good all natural vitamins, especially B6, and also get some magnesium. See if he improves. If he is still ticcing pretty badly then you can go a little bit further.

If funds are tight you may want to experiment with an elimination diet. This takes time to do, but may help you pinpoint triggers. The three most common cerebral food allergens are:

milk

eggs

wheat

corn

(This is according to Sheila Rogers book) You could just start with one at a time, and look for a decrease in symptoms. The experts suggest you eliminate all and then reintroduce one at a time until symptoms come back. You may find that overwhelming to do (I did), especially if you are a single mom and are working. Kids with tic disorders generally have multiple allergens. In our case we did not have any environmental ones, just food ones. But the experiences here run the gamut. We did a lot of eliminations and trial and error before we decided to go ahead and pay for the allergy testing. (A couple hundred dollars).

Even if you don't get involved in a strict elimination diet (it's hard, especially when you haven't gotten to the store) then you could greatly reduce a possible food allergen for a day or two and then give a larger than normal helping of that allergen (say wheat) and wait to see if there is a dramatic increase in tics. We had an experience like this that tipped us off in the beginning. Our suspicions proved true when we got the testing back.

Skin rashes are common side effects of wheat intolerance. Many celiacs I am in contact with have discussed the connections. I am not sure about the dx you mentioned, but you may want to google that.

 

Caryn

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Caryn

i will be talking to my doctor about sending him for allergy testing

i do not have to pay for this (i live in Canada) so i will ask but oh my it took 3 of us for his flu shot it will take ten of us for this :wacko:

i will do what you siad first by taking all the stuff you said away and see where this goes

thanks

Ann

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Ann,

 

I am so very sorry for what you and your son are going through. I know it seems so unfair. I remember when my son was five and suddenly started having horrible OCD symptoms, I would cry every night wondering what I did wrong to put this on my son. I didn't have this board then and didn't even know about PANDAS. It was a very dark time. I can feel the great love you have for your son in your writing. Right now you need to just draw on that and stay strong. You have gotten great advice already and you will get so much knowledge here. With that knowledge you will get more strength. Your son will get better. As he gets older and is able to swallow tablets, you will be able to get him to take supplements such a calcium / magnesium which is very helpful for tics, and slowly add others that will be helpful. With his young age, I think it is appropriate to look at dietary changes, allergies, and cleaning up the enviornment. You can always try epsom salt baths, those are very simple and give some temporary relief of tics. Most children his age will take a kids multivitamin. Make sure he is getting one that is dye free. It sounds like you are doing everything you can. Make sure you take care of yourself also and give him lots of love and hugs.

 

Peace and Grace - Dedee

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