Worried, confused and need help

[John]

Hi everyone

 

My name is John and I am making enquiries on behalf of my son Connor who is 8 yrs old.

 

I am sorry if this topic sounds all to familiar but this is all new to us.

 

2 weeks ago my son started rolling his eyes up into his head. We did evreything we shouldnt have done, ie have a go at him as we just thought it was a habit he had got into. Since then we have spoken to him and he tells us that he really feels a need to do it. Other times he doesnt seem to realise he is doing it. He also whistles a lot.

 

Having done some research on the internet everything points to TS. Neither me or my wife can remember us having it as kids and pretty sure we dont stiull have a mild form now, as we know it is hereditry.

 

Could it be anything else?

 

What should we do now?

 

I have started to notice people that see him do this give him funny looks. It is breaking our heart to watch a previously happy go lucky kid suffer like this. I know that we should count ourselves lucky that he doesnt suffer acute symptoms but it is making us so depressed knowing what he will have to face and endure if we cant help him.

 

If anyone can give us any help, advice or a starting point on what we should do we would be very grateful. We live on the West Coast of Ireland and resources are minimal to say the least.

 

Still we will do what needs to be done to help our beautiful boy.

 

Thank you ever so much for reading this.

 

God Bless

 

John

[Chemar]

Hi John and welcome

 

the best advice I can give you at this point is to start reading thru back threads here

 

I realise that you have limited resources where you live (beautiful place tho ) and so the best you can do is to start with what is doable....careful attention to avoidance of artificial foods and other known tic triggers ( see the article here http://www.latitudes.org/articles/finding_triggers.htm ) and maybe try to order Sheila's book so that you have a reference at hand ( http://www.latitudes.org/book.html )

 

In addition to avoiding artificial foods that can trigger tics, supplementing with a good multivitamin/multimineral and adding extra magnesium is a big plus

 

I have documented the things that helped my own son here

http://www.latitudes.org/forums/index.php?showtopic=687

 

and other members have also posted threads about what they have found to be most beneficial

 

John.........PLEASE dont allow despondency over this to consume you. As so many of us can testify...whether this is Tourette Syndrome or some other tic disorder....there is MUCH reason for you to feel hopeful

 

most tic disorders, including TS, decline once the teenage years are over and in the meantime, inplementing things that can help can alleviate many of the symptoms

 

My husband and our youngest son have TS, and I can assure you that they live full and happy lives!

 

I know others will also be along soon to add their welcomes and experiences and I hope we can all help you to feel encouraaged and have much hope

 

Cheri

[Sydsmom]

Hi John,

 

I dont' have anything more to add other than hang in there and trust that things will get better as you journey through all this. The foods for us were a starting point and a great starting point. There's such great info here. Take each piece one at a time and try not to get overwhelmed and do everything all at once. As I told another mom, I remember crying so much at first and now we hardly notice my daughter's tics. Some days aren't good ones but they go away and bring really good days.

 

Goodluck to you and God bless and lead you too.

 

Lisa

[Guest]

Hi John & Welcome

 

In addition to what's already been said, I just wanted to say that TS/tics aren't always hereditary. Many kids are diagnosed with TS, but no one can find a link to TS in the family. Whether it's hereditary or not, natural treatments work for many.

 

I hope you learn lots here and figure out what's beneficial for your son.

 

Carolyn

[John]

Thank you all for reading and replying.

 

I bought some Multi vitamin/Multi Mineral tablets from the health store.

 

Re the magnessium they have 2.5mg per tablet. Should I still use the liquid Calcium Magnesium that I bought.

 

I also got some EPA Fish Oil Concentrate (should I have?)

 

Thanks again for all your help. This is a grat web site and proving to be a grat help to us.

 

Kind Regards

 

John

[Chemar]

Hi John

 

yes...2.5mg magnesium is low and a child of 8 with tics can have at least 250-400mg depending on weight

Do make sure that his calcium intake is upped as well, whether via foods or via additional supplement...it is generally advised that the daily calcium intake should be approx double that of the daily magnesium intake

 

re the fishoil.....introduce that about a week after you have started on the other supplements and then watch carefully as some people with Tourette's find that fishoil makes them tic more (even tho they can eat fish ok) Some do fine on it and hopefully Conner will too, as it is by far the best source of Omega 3 EFAs

 

If you find that he tics more within 3 days of taking the fishoil, switch to flaxseed oil with is also rich in omega 3

[John]

Thanks Chemar

 

Will try that

[Cum Passus]

John,

 

Welcome... it is a great feeling to know we as parents can do something for our kids, they are so worth fighting for. Take it slow, last year I was so upset I had to start and stop supplements because I was going so fast. It only upset me more to think nothing would help. I remember the first day I started to feel relief from the stress was when I thanked God for the tourettes. It took me 11 months to get to the point when I could really and truly thank Him for something that caused me so much pain. My son had the vocal so bad he was screaming, he still was a happy kid. I really thank my husband for that, where I was crying and feeling sorry for him/myself/our family, my husband took him to the park played catch helped coach is baseball team. They work out together, box and lift weights. Those things really helped my son know he is normal and loved. He has alot of friends and is really funny. God Bless you and your family I'll add Connor to our prayers, all I ask the Father for my son I also ask for my cyber friends.

 

C.P.

[John]

Hi John

 

yes...2.5mg magnesium is low and a child of 8 with tics can have at least 250-400mg depending on weight

Do make sure that his calcium intake is upped as well, whether via foods or via additional supplement...it is generally advised that the daily calcium intake should be approx double that of the daily magnesium intake

 

re the fishoil.....introduce that about a week after you have started on the other supplements and then watch carefully as some people with Tourette's find that fishoil makes them tic more (even tho they can eat fish ok) Some do fine on it and hopefully Conner will too, as it is by far the best source of Omega 3 EFAs

 

If you find that he tics more within 3 days of taking the fishoil, switch to flaxseed oil with is also rich in omega 3

 

 

Chemar

 

Sorry to be a pain but can I just check with you of what I am giving him to make sure it is ok.

 

1) A multi-Vitamin/Multi Mineral Formula Tablet.

 

2) 2 X Sml of Calcium Magnesium, zinc, Vit D liquid. Of which per 2x 5ml dosage contains :

 

Calcium 300mg

 

Magnesium 150mg

 

Zinc 6mg

 

I just got worried when you made sure to give him double the calcium intake.

 

Is this ok.

 

We are going to start with this then see how it goes for a week. The week after we are going to take the playstation away. After that we will look at his diet etc and start to rule out certain triggers.

 

Should I see our DR to get the ball rolling for allergys etc?

 

Sorry to be so direct but it is true about info overload on these threads.

 

Thabnk you all for your help.

 

John

[Chemar]

sounds good John as that liquid has the 2:1 ratio

 

I assume the multivit/min has no artificial colouring or artificial flavouring?

 

there is likely also calcium as well as the magnesium in the multi, but overall the 2:1 ratio should be adhered too without being too intense about it it is an approximation rather than having to be exact to the last mg/ml

 

remember the key is ONE DAY AT A TIME and keep focussed on that light at the end of the tunnel

[John]

Hi everyone.

 

Just to let you all know that we are 3 days into the extra vitamins programme and we have seen a remarkable improvement. Its still there but not as much. Its improved by at least 50%

 

We are not getting too excited just yet, as we realise that it can wax and wain.

 

Kids at school have started to ask him why he does it. I know this gets to him as the first guy that asked him he replied to mind his own business, the other guy he just ignored.

 

I told him tio answer them with "I just do it" and leave it at that. I expalined the more he got evasive about it the probability was they they might ask moere questions or possible tease him. What do you guys think? Am I right in that?

 

Can I just add that we reallyu appreciate the advice and help that all you "old hands" give. Long may you continue to help new people like us. We really feel so much better about the whole thing.

 

Thank you

[Chemar]

Hi John

how great that you are already seeing an improvement!

 

re the other kids........in the early days before we had the TS diagnosis, our doc advised my son simply to say: "I cant help doing this, it is like an allergy" As he got older, and with the dx, he chose to elaborate and told them it was Tourette tics, that he had no control over them, that they werent serious etc etc........it is amazing how cool kids are when they are given an explanation! yes, there will always be some insensitive kids who tease and even adults who stare etc but best to advise him to learn to ignore them! It is THEY who have a problem....not him

[Cum Passus]

John,

 

My son exploded with tics last year at 12, it was also his first year of public school. At first his friends thought he had the hic-ups all the time. He just let the them think that. Now this year at 13 he doesn't mind telling his friends what he has. The kids in our town are so very nice. I think what really helps my son is he knows he is a good athlete, A/B student and a nice guy. I think the kids feel good about themselves when they know they are good at something. (music, sports,ect) I do think because my son showed symptoms late, this has made him deal with it the best he knows how. I couldn't hold him in those early days because he didn't need that.

I needed it, but my little man did not. I never thought my son would handle this so well, he has suprised us. I'm sure your son will do the same, He'll just know what is right for that moment.

 

C.P.

[kim]

John,

 

I wanted to add, that our experience has also been that some explaination to other kids is best.

 

In the age group that your son is dealing with, the allergy explaination, worked very well for my son also.

 

The key, is really how your son is able to express a level of comfort with it. If the other kids sense that they can "bug" him, I think they tend to be relentless. I think it's the same with any type of "difference," at that age. For instance, if a child wears glasses, and being called 4 eyes, really gets a reaction out of the child, that's great fun for some kids. I see that happen everyday. It happens to overweight children all of the time.

 

If your son appears relaxed and gives a simple explanation, with a tone of confidence, I bet he will have very little trouble.

 

I think your instinct about some explanation, was right on.

 

I also wanted to share, that your son might very well not have the level of tics at school, that he does at home. I was stunned, when I finally started talking to teachers about my sons tics (I wanted to know, if it was affecting anything as far as school work, attention, if they were being picked on etc.) and I got very puzzeled looks, more than once. The teacher was totally unaware that there was a tic syndrome. With what I was seeing at home, that was incredible to me.

 

I'm so glad to hear of your son's improvement too. Keep reading and learning thou! I always found I could focus much better, when I wasn't upset, about a tic that was causing a lot of emotion!

 

Kim

[faith]

Hi,

re: the fish oil

Can someone please help. We had my son on flax oil for about 10 months now, and was one of the first things I added (along with magnesium, B6 and taurine) and I thought he did very well. His tic at the time did diminish, and so I stayed on that. Right before school a small throaty gasp started and then about two months later some eye blinking. Even during this we stayed on the flax. But around End of November we started a fish oil by nordic naturals given by the DAN doctor (along with nu-thera multi).

My question or thing I want to figure out: I know some people say they don't tolerate the fish oil. I assume you mean with more ticcing? It's hard to figure out because he already had the tics going, but even as I started it, I would stop for a few days to a week just to see, but I don't know. Is that long enough to tell. If someone is already ticcing, how do you know if the fish oil (or anything new) is causing a problem. Would there be a new tick or just that one getting worse. It was hard to tell.

 

So now that the bottle is finished I'm going to switch to a flax/borage by Now brand. Just curious if anyone has any input.

Also, in the mineral kit we were given by our naturopath, it includes copper and manganese, both of which I am always leary about since some say its not good for tics (I asked her about it and she said to take it if the test indicates he needs it (the test is a taste test, if it tastes like nothing or just okay taste, then that's supposed to indicate you need it). Any thoughts?

 

Thanks

Faith