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can't get a handle on tics


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Even though we have had our son tested for environmental as well as food allergies and found out that he is allergic to nearly everything, we are still what seems like miles away from helping him with his tics. We have kept him away from his major allergic things or we have done what I think is the best we can but still, good is not good enough. I really feel as though something else should be addressed, but what? We are giving him his maintainance shots and food allergy shots like advised but still he tics. How long does these shots take to start having any effect on his allergies? He is having bad eye blinking, eye rolling, and head bobbing episodes and it is about to kill me. Can anyone advise something further on looking into something else. He will start the 5th grade Aug. 8th and I am really concerned. Should we require that he be tested for nutrient deficiencies, and possibily heavy metals? How are these test run and what are the test called?

The spots in his legs that bother him every night are no better eather, he says it is one spot in both calves of his legs that drive him crazy at night. It sort of sounds to me like a nerve ending bothering him. We speed antwhere from 2 to 4 hours a night rubbing and massaging his legs, which leaves us with very little sleep, something has to give. We go back to our doctor Aug. 7th and I need to know what to ask for or insist on having done. Thanks for your input ahead of time.

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Hi mblack,

 

Could i ask if your son is looking like he is starting puberty? My son started with major tics at 12 he is a slow grower, and when he was 12 he was the size of a 10 yr old. we tried everthing and nothing seemed to help. So I really feel for you. Your son's hormones may be taking over, which in our case seemed to me he slowed down with the major tics, once his body when through some changes.

 

I wish I had more to help. God love you for sacrificing your sleep to make him more comforable.

 

C.P.

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Hi mblack,

sorry you are so stressed about all this. I totally understand and have been there too. I really think you will get a handle on this, you've done so much work already, please don't give up.

 

I've read your previous posts about the food allergies. Are these true food "allergies" or food intolerances or sensitivities? Because I havn't heard of food sensitivities being treated by shots, only true food allergies, so I'd be interested to know what kind of test this was. Have you eliminated at least the foods that showed the most allergic response? Was it that type of test? For instance, does it state "high", "moderate" and "mild" or something like that? I see it is a long list, and that may be why your son is having multiple tics at one time, I'm thinking there are several things there that are a real problem for him. Perhaps you could eliminate four things at a time for two weeks, see where you stand, and if no improvement, try four other things for two weeks, and so on until you seem to see an improvement.

 

Have you at least seen a little improvement, or at least a decline, such as how frequent he does the tics, or the intensity of it? That could be a clue that your are on the right track, I would think. I have noticed when we eliminated the "high" intolerances (for us it was corn, yeast and flax) after about two weeks I saw a decline and little by little the tic got less and less until it was about 90% gone. Now we are still dealing with a vocal, but that is not as prominent as once was, but are still working on that. Have you taken some of the suggestions that Caryn posted? she covered a lot of good points. I know this can be terribly difficult, but something you have to cover, just to be sure. I think by eating the cleanest diet he can, can only be a good thing in the long run.

 

Have you done any bloodwork on him, maybe the environmental doctor could do a complete bloodwork on him just to see if anything else is lurking. As far as heavy metals, we have done the urine challenge test, but this is only done by a DAN doctor, naturopath, or maybe the environmental doctor--you will have to inquire about that.........Yes, there may be something you are missing, be it some food ingredient that is his nemesis, or some other culprit, but you will have to dig in and find it, and I'm sure that you will. I know this is hard and will take a little time. We are all here to help, so keep asking and answering, I know things will get better soon.

 

God Bless

Faith

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Hi

sorry to hear of the frustration you are experiencing

 

Do you have a dx of Tourette Syndrome for your child? sorry if this has already been mentioned. If this is Tourette, then it really will be a lot less stressful to realize that people with TS tic. Period. We can do a lot to minimise the severity and frequency of TS tics, but there is not yet a "cure" as such for TS tics

 

If you do not have a TS dx then there may well be other triggers or issues (eg heavy metals, candida, pyroluria etc that need attention.

 

I am assuming PANDAS/PITANDS is ruled out

 

again, forgive me if I am mentioning things you have already posted on....I have been dealing with a family bereavement and a heavy workload and so have not been as attentive as usual

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Did all of these tics just begin at once? If so, have you had the strep test-Aso titers done? Have you done any supplements? If so, make sure it is the right magnesium (absorbable). We went through this in Feb-April. It was horrible. I started him on supplements only to figure out later it was not the right magnesium. As soon as I began Kids Calm it improved-after 4 days of increased symptoms. I do think my son went through a small growth spurt as I look at him now. He is only 8 1/2 though. I remember wondering if he would ever stop and most days he is fine. Hang in there.

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Hi,

 

I am sorry to hear about your sons tic. My daughter is having alot of the Eyes rolling. Since she was sick 3 weeks ago they have really increased! :( I am HOPING they get better before school starts. She was having almost NONE all last year.

 

Kids Calm.....I have a question....I bought her the natural calm, is that the same thing??

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Hi hermom33,

 

I can't remember how old your daughter is? The Kids Calm has flavor and some have other vitamins in it. The Natural Calm has more mgs of Mag. I give my son the Natural Calm, but that is because he is 13 1/2yo. If your daughter is young you might want to do the kids calm, so you she is getting the right amount of mag for a child.

 

God Bless,

C.P.

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Hi hermom33,

 

I can't remember how old your daughter is? The Kids Calm has flavor and some have other vitamins in it. The Natural Calm has more mgs of Mag. I give my son the Natural Calm, but that is because he is 13 1/2yo. If your daughter is young you might want to do the kids calm, so you she is getting the right amount of mag for a child.

 

God Bless,

C.P.

 

 

 

Hi C.P

She is 10, VERY thin. What do you think?

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Hi hermom33,

 

I would do the kids calm for her to start, if you see an improvement after a few days keep her on the Kids calm. Since you already have the Natural Calm, you could try it if you don't see any results with the Kids Calm. We saw results almost the day after we started. I think most parents have noticed an improvement pretty quickly.

 

I also have a 10 yo daughter and I have given her the Natural Calm only a 1/2 teaspoon tho. She does not have a dx of TS. So I can't tell you if it is doing anything for her.

 

God Bless,

C.P.

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Hi hermom33,

 

I would do the kids calm for her to start, if you see an improvement after a few days keep her on the Kids calm. Since you already have the Natural Calm, you could try it if you don't see any results with the Kids Calm. We saw results almost the day after we started. I think most parents have noticed an improvement pretty quickly.

 

I also have a 10 yo daughter and I have given her the Natural Calm only a 1/2 teaspoon tho. She does not have a dx of TS. So I can't tell you if it is doing anything for her.

 

God Bless,

C.P.

Hi Cum Passes- Is your daughter still doing a few things you were worried about? I just continue to ask because your story is similiar to mine and I am now worried about my daughter having tics when she is older. I just like to see how things are going-dont want to intrude.

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Hi mblack,

 

Could i ask if your son is looking like he is starting puberty? My son started with major tics at 12 he is a slow grower, and when he was 12 he was the size of a 10 yr old. we tried everthing and nothing seemed to help. So I really feel for you. Your son's hormones may be taking over, which in our case seemed to me he slowed down with the major tics, once his body when through some changes.

 

I wish I had more to help. God love you for sacrificing your sleep to make him more comforable.

 

C.P.

 

Hi Cum Passus, sorry so long before a reply but no my child is not into puberty yet.

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Hi mblack,

sorry you are so stressed about all this. I totally understand and have been there too. I really think you will get a handle on this, you've done so much work already, please don't give up.

 

I've read your previous posts about the food allergies. Are these true food "allergies" or food intolerances or sensitivities? Because I havn't heard of food sensitivities being treated by shots, only true food allergies, so I'd be interested to know what kind of test this was. Have you eliminated at least the foods that showed the most allergic response? Was it that type of test? For instance, does it state "high", "moderate" and "mild" or something like that? I see it is a long list, and that may be why your son is having multiple tics at one time, I'm thinking there are several things there that are a real problem for him. Perhaps you could eliminate four things at a time for two weeks, see where you stand, and if no improvement, try four other things for two weeks, and so on until you seem to see an improvement.

 

Have you at least seen a little improvement, or at least a decline, such as how frequent he does the tics, or the intensity of it? That could be a clue that your are on the right track, I would think. I have noticed when we eliminated the "high" intolerances (for us it was corn, yeast and flax) after about two weeks I saw a decline and little by little the tic got less and less until it was about 90% gone. Now we are still dealing with a vocal, but that is not as prominent as once was, but are still working on that. Have you taken some of the suggestions that Caryn posted? she covered a lot of good points. I know this can be terribly difficult, but something you have to cover, just to be sure. I think by eating the cleanest diet he can, can only be a good thing in the long run.

 

Have you done any bloodwork on him, maybe the environmental doctor could do a complete bloodwork on him just to see if anything else is lurking. As far as heavy metals, we have done the urine challenge test, but this is only done by a DAN doctor, naturopath, or maybe the environmental doctor--you will have to inquire about that.........Yes, there may be something you are missing, be it some food ingredient that is his nemesis, or some other culprit, but you will have to dig in and find it, and I'm sure that you will. I know this is hard and will take a little time. We are all here to help, so keep asking and answering, I know things will get better soon.

 

God Bless

Faith

 

 

Hi Faith, thanks for the rsponse and sorry so long for a reply but yes these are food allergies . I think the test were IgG and IgE test, I am not sure. But, we have eliminated all we can, now because it is nearly impossible to eliminate some of the things because they are in everything. We have done what I thought was a good job but do you ever really do a good job. Yes the test stated high, questionable, and none. No we are not going to give up.

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Hi

sorry to hear of the frustration you are experiencing

 

Do you have a dx of Tourette Syndrome for your child? sorry if this has already been mentioned. If this is Tourette, then it really will be a lot less stressful to realize that people with TS tic. Period. We can do a lot to minimise the severity and frequency of TS tics, but there is not yet a "cure" as such for TS tics

 

If you do not have a TS dx then there may well be other triggers or issues (eg heavy metals, candida, pyroluria etc that need attention.

 

I am assuming PANDAS/PITANDS is ruled out

 

again, forgive me if I am mentioning things you have already posted on....I have been dealing with a family bereavement and a heavy workload and so have not been as attentive as usual

 

Hi Chemar, Yes and no on the dx of TS. Yes we were seen by a Pediatric Neurologist and after a 2 second glance at my son he said he has mild TS. But get this all this man was concerned about was asking my son what he wanted to do when he grew up. When my son would reply he would tell him no no no you want to be a DOCTOR like me. He told him that he worked very very little and made lots and lots of money and he could buy all these things with that money. He really made me sick.

 

Now the doctor that did the allergy testing told us no that my child did not have TS, so do I have a dx of TS I really don't know. I really do want him tested for the heavy metals, so what test do I need to ask for? Will a simple blood test be all that is needed? What is pyroluria? I have not heard of that before. No PANDAS/PITANDS have not been ruled out, not even talked about yet. We go back to see the environmental doctor next week for a 3 week check after starting the allergy shots. Do I need to start some of the suppliments myself without the okay from the doctor? What is kids calm? Any and all advice and information is greatly appreciated. Thanks.

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Hi mblack,

 

We started our son on Bontech supplements when he started ticcing in December of 06. Initially the tics got worse for about 1 month than they improved over time. He now tics very minimal. However, we've also seen (and are seeing) an environmental dr. and we did alot of testing - heavy metals, food sensitivities, mineral analysis, urinalysis, and yeast test. We have had a very strict diet for the past 3 months (no artificial anything, no sugars and very little carbs).

 

I would run everything by your dr. - after all thats what we pay them for, and pay them for, and pay them for... :( (that's my line of thinking) and that's what we have done.

 

Also, what was VERY helpful for me was spending alot of time (about 2-3 hours/day everyday) reading past threads and asking questions. People on here are the best in the world. It's amazing how they offer up their time and support for complete strangers like us.

 

God bless, and please keep seeking, asking and knocking.

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Hi bmom,

 

She has not had them like I saw in the spring. The last time I saw her do the tongue thing was the 4th of July right before the fire works. The eye blinking I see but now they look more normal. She said her eyes don't bother her like they did in the spring.

 

She is so different then her brother, much more calm, and she can read for hours. If he sits still he will tic more. His father was the same way as a kid.

 

She has been through a lot with this because she is the only one I still homeschool, so she had to deal with me when things were really bad. I have asked her if she felt they were tics she just had to do, and she said she didn't think they were.

 

I have had to really think back to my oldest daughter and remember she did have habits for about a year. I homeschooled her 5th, 6th, and 7th grades she would tap her pencil on the table a lot, and twirl her hair. She will still twirl her hair but not often at all. My youngest daughter is very much like my oldest daughter. So I'm hoping this is just a kid thing and will pass. I'll keep you all posted about her. I was thinking about sending her to school next year for middle school, but I'm nervous about that now.

 

bmom, how old is your daughter?

 

God Bless,

C.P.

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