Worried, confused and need help

[John]

Thanks guys

 

Great support as always.

[GErl]

Hi John,

 

I can't really tell you anything more about supplements and such things, the people here are much more knowledgeable than I am. I found that in addition to the supplements, a change in diet helped my son a whole lot (he's ten and got diagnosed a year ago, although he has had mild tics since about 7 or 8), we took out sugar, wheat and yeast (we see a lot of difference if he comes home from a friends birthday party having eaten candy and pizza).

 

Anyway, what I was going to talk about was how we dealt with school. The months before he got diagnosed had been really hard on him, his tics were quite bad, some of them quite painful for him, and he got really socially insecure and had problems at school, he complained no-one wanted to play with him and his grades went down. After the diagnosis was in place we started on the advice we found here and in Sheila's book (a real treasure, that book) and things got a lot better. He has a wonderful teacher, and one day she sat down with the whole class and just talked about tourette and explained it to them, my son got to answer questions and describe his experience and after that everything got better. They actually sat down in a group and had a quiet chat, it was not like she had him stand in front of the class or anything like that (which would have been horrible). So, if you think his teacher is responsive to something like that you can discuss this with her/him and see how it goes. Hiding it only makes things worse, I think.

 

Hope this helps. And living in Iceland I can understand the feeling of isolation.

 

Gudmundur

[John]

Hi John,

 

I can't really tell you anything more about supplements and such things, the people here are much more knowledgeable than I am. I found that in addition to the supplements, a change in diet helped my son a whole lot (he's ten and got diagnosed a year ago, although he has had mild tics since about 7 or 8), we took out sugar, wheat and yeast (we see a lot of difference if he comes home from a friends birthday party having eaten candy and pizza).

 

Anyway, what I was going to talk about was how we dealt with school. The months before he got diagnosed had been really hard on him, his tics were quite bad, some of them quite painful for him, and he got really socially insecure and had problems at school, he complained no-one wanted to play with him and his grades went down. After the diagnosis was in place we started on the advice we found here and in Sheila's book (a real treasure, that book) and things got a lot better. He has a wonderful teacher, and one day she sat down with the whole class and just talked about tourette and explained it to them, my son got to answer questions and describe his experience and after that everything got better. They actually sat down in a group and had a quiet chat, it was not like she had him stand in front of the class or anything like that (which would have been horrible). So, if you think his teacher is responsive to something like that you can discuss this with her/him and see how it goes. Hiding it only makes things worse, I think.

 

Hope this helps. And living in Iceland I can understand the feeling of isolation.

 

Gudmundur

 

Thanks GErl

 

We actually spoke to the teacher this morning. Connor has a dentist appointment next wek and we have asked the teacher to explain to the class that Connor has a type of allergy that makes his eyes do what they do, and that he has no control over it.

 

Connor preferred it that he wasnt there. The plan is that once everyone knows about it and that it is out in the open then the kids will just accept it and move on. If any kid teases him or bullys him about it then he knows he can go to the teacher for full support.

 

As we havent had a dx yet we were reluctant to call it Touretts as unfortunately over here people do not know much about the condition, and tghose that hjave heard of it think that all cases are the severe swearing type.

 

Any way thanks as allways..

 

J

[John]

We want to try Peter Gilhams Natural Calm but I found that there is more then 1 Natural Clam in his range.

 

There is Natural Clam Magnessium etc etc.

 

Which is the correct one we should use?

 

Cheers

 

John

[Cum Passus]

John,

 

My son is 13 so we use the plain Mag supplement. (no other stuff added) I squeeze a little lemon in it. I think if my son was 8 I might use the Kids calm. I think you would be fine with either one. The mag dose in the Natural calm is 615mg for 3 teaspoons. I do not know the (mg) for the kids calm. I think the others are just flavored, but have same 615mg dose.

 

Good Luck

C.P.

[vicki linn]

I know exactly what you mean. one step ahead and things look great and then all of the sudden more tics two steps backwards. if your son has been sick that will for sure make the tics worse. do you know if you son has yeast/fungus problems? do you or your wife? sometimes this is passed to babies and they get gut dysbiosis and the results can be all kinds of health issues. i believe my yeast and fungus was passed to my kids and that is one of the reasons we are having tics and other challenges.

 

i know what you mean by good day/bad day it is hard to not let your day be based on your childs tics and emotional status for that day. i am trying hard to not let that be the basis for my day.....

 

take care and MAKE it a great day!

 

vicki~

 

 

 

We had a bad day yesterday.

 

Connor came home from school early as he was sick (headache etc). He was a bit upset as 3 of his "friends" were looking and whispering about him. His Eye Tic is bad and has been for the past week. The supplements although gave a good responce now dont seem to be making a difference.

 

Is it possible that his sickness might somehow negate the suppliments? He had a vomiting bug and now a viral infection.

 

When I spoke to the GP I found him to be very unsmypathetic. I explained that we really did not want to go down the drup route but would prefer to use herbal treatment. I said that we really did not know what to do. He was quite abrupt and told me that we new what we were doing as we had "ruled out treatment with drugs".

 

I suppose I should of said that we wanted choices. Still I suppose we have to start with geting a diagnoses. Does any one have any contacts for Dr's in Ireland?

 

Any way like I said were trying to keep a brave face on for Connor but inside were having a bad one.

 

I ordered Sheila's book last night, hopefully we can get some ideas from it.

 

Take care all

[John]

Hi John

 

as someone who saw the awful results of allowing a doctor to "drug my son up" because I was told it was the only way he could live a full life I want to again encourage you NOT to go this route, especially as by all the examples you have given here, your child has very mild and not injurious tics

 

anyway, because of your location and so not being certain what testing will be available, here is a basic list of what I personally feel is most important (I am sure others will also give their input as I may well miss some things)

 

1. PANDAS & PITANDS

 

2.CANDIDA albicans (aka "yeast overgrowth" )

 

3. Heavy metals

 

4. Food and Environmental allergies

 

5.Pyroluria

 

6.vitamin, mineral, amino acid and neurotransmitter levels

 

I realise not all of these may be familiar to your doc and so if you need more info on any of them, just ask or use the search here as we have many threads related to it.

 

sorry to have to be so brief but I have a heavy workload today

all the best

Cheri

 

Are most of these tests done by taking a blood sample? Will it take long to get results?

 

Thanks

 

J

[Chemar]

Hi John

some are blood and some are urine and it usually takes about a week to get the results

 

 

there are also hair analysis tests and some stool tests that can give some of the results

[John]

Hi John

some are blood and some are urine and it usually takes about a week to get the results

 

 

there are also hair analysis tests and some stool tests that can give some of the results

 

 

Thanks Chemar

[John]

Hi All its been a while.

 

Well this week we finally went to see the Pead to get the official dx. I was dreading going, not because of the dx but because I was going to run into a very high thick brick wall of his ignorance to tic causes, triggers and treatments.

 

It went exactly as I thought it would that TS was nothing to do with allergies etc. I gave him a list of testing that I wanted doing and (I suppose I should be grateful) he agreed to do some of them, but unfortunately he couldn't do all. Not that he was unwilling but quite simply if he was to send to the lab with the reason why he wanted the test done then it would be refused!!

 

I treid to explain that I wasn't a desperate parent that had been looking up the internet desperately looking for a thgread of hope but explained about the experienced here etc. He shrugged it all off saying it had not been mediacley proven etc.

 

I was in with him for 25 mins trying to convince him to do the testing, eventually I won (thank god). He saw and spoke to Connor for about 5 mins. The only good thing he said was that he would not want to medicate my son unless it was really effecting his life, which thank god it isnt.

 

He gets a little bit of ribbing at school but if it wasn't his eye rolling it would be something else, kids after all said and done will be kids. To be honest we dont mention it he doesnt, most of his friends dont so we will take that and move on. We had a great week in the Canary Islands 2 weks ago, his ticcing stayed about the same, lots of sun and swimming, I my wife and I needed the holiday badly. His TS had begun to dominate our lives, its all we seemed to talk and worry about, during the week we hardly mentioned it and it remains the case now.

 

I know its easy for me to say this but don't let it dominate your lives.

 

Take care

 

J

[Chemar]

Hi John

 

amazing isnt it how doctors shut their minds so often to anything that isnt in their own particular frame of knowledge

 

thank goodness he at least agreed to run some tests for you

 

I am so glad to hear too that you have got the tics into perspective with the rest of life so true how we can let them become our only focus and forget all the great stuff that is still going on

 

keep us posted on test results and progress

Cheri

[Guest]

Hi John

 

Glad you got your doctor to run some of the tests for you. To a certain point he's correct as many of these test will likely be denied insurance coverage if coded as Tourette Syndrome, tics, etc. As an essential suggestion, don't code things as Tourette Syndrome or tics. Instead code things depending on the test as things like headaches, constipation, etc. Sounds like you might need to teach your doctor this hint. We haven't coded anything as Tourette Syndrome for a long long time and things have been covered.

[John]

Just recieved a call from one of the Peads staff.

 

The test for Strep has come back positive and they have prescribed antibiotics for this. Any ideas as to what we need to do now (apart from giving him the antibio's)

 

To be honest I would love to be there when he reads the results, I hope it may challenge his thinking in regard to Tic's and thier causes, as he did not want to run any tests to begin with.

 

As always your help and advice is greatly appreciated.

 

J

[faith]

Hi John,

When you say the test for strep came back positive, do you mean the throat culture or the blood test for the strep titres? Why did the doctor agree to that test--was your son sick at time of the visit? And he prescribed antibiotics for what--the strep throat? or the high strep titres? I just wonder because if it is not going to be a longterm antibiotic treatment, things could go awry again when antibiotics are done.

 

Also, previous to this, had any of the supplements you were giving seem to bring about any improvement up till now?

 

Thanking you for your reply and update

Faith

[kim]

Way to go John!

 

As Faith asked, I'm curious whether this was a throat swab or titer levels too.

 

If your son is going to start an antibiotic, I would start probiotics too, if he's not already taking them. Also, be sure to check the antibiotic to make certain any supplements (calcium or magnesium are the two I have seen most frequently) taken too closely, won't interfere with it's effectiveness.