Question

[zinto]

Hi everyone ,

Just ambling along slowly in this journey of trying to treat my 6 yr old sons tics - and I have a few qs I would love your thoughts on :

1) what to do about increased tics from nerves / excitement ?? Anything ?? I don't want to avoid these situations but he is definitely worse when they occur and I just wonder if anyone ever found something that helped with that ??

2) would you say that when someone says ' we tried all the alternatives - nothing worked for us' that basically they have just not exhausted the options ? It's such a puzzle and I can understand anyone saying it all got too hard . I just wonder if you think that the puzzle can be solved if you keep going with alternate options / diet /etc or are there really cases whereby no its just got to be ' lived with ' .

3) my son has had a hair analysis come back and say he washing in copper amongst a few other things and very high in magnesium ( he takes natural calm and has eps salt baths ) so we have eased off the mag- or should we stick with it even if the levels are high ?? She has given him fish oil ( just DHA ) , glutathione and a multivitamin for now and said come back in 6 months. He has been on those now for approx 3 weeks , no change yet. - possibly slight worsening . - vocals have started .

 

3) Our chiro said his head was a bit out of line and has given us a number for the craniosacral therapist . I emailled her and shensaidshe has no experience with the condition but imagines that she would help with him his anxiety , irritability etc . Which may then help tics . Anyone found this ?

Also interersted in acupuncture but not so sure he will handle the needles .

 

Thanks everyone , would your thoughts x

[zinto]

Anyone ??

[911RN]

Hi everyone ,

Just ambling along slowly in this journey of trying to treat my 6 yr old sons tics - and I have a few qs I would love your thoughts on :

1) what to do about increased tics from nerves / excitement ?? Anything ?? I don't want to avoid these situations but he is definitely worse when they occur and I just wonder if anyone ever found something that helped with that ??

2) would you say that when someone says ' we tried all the alternatives - nothing worked for us' that basically they have just not exhausted the options ? It's such a puzzle and I can understand anyone saying it all got too hard . I just wonder if you think that the puzzle can be solved if you keep going with alternate options / diet /etc or are there really cases whereby no its just got to be ' lived with ' .

3) my son has had a hair analysis come back and say he washing in copper amongst a few other things and very high in magnesium ( he takes natural calm and has eps salt baths ) so we have eased off the mag- or should we stick with it even if the levels are high ?? She has given him fish oil ( just DHA ) , glutathione and a multivitamin for now and said come back in 6 months. He has been on those now for approx 3 weeks , no change yet. - possibly slight worsening . - vocals have started .

 

3) Our chiro said his head was a bit out of line and has given us a number for the craniosacral therapist . I emailled her and shensaidshe has no experience with the condition but imagines that she would help with him his anxiety , irritability etc . Which may then help tics . Anyone found this ?

Also interersted in acupuncture but not so sure he will handle the needles .

 

Thanks everyone , would your thoughts x

1) My son's tics are worsened when he is nervous, anxious etc. In a new situation. I have really never done anything about it. I have not found anything that really helped with it. His tics bother me more than they bother him...that is a good place to start and assess. I would prepare myself more for the increase and how I would respond than worry about him.

2)I have gotten to the point where we just live with his tics. He is 13- he has had tics of some sense since he was 4. They wax and wane. Seasonally they worsen in Spring/Fall. And, worsen after any illness. Yet he is not diagnosed TS. Has been under care of 3 different Neuros (since he was 8) and nobody has ever thought he was TS or diagnosed him with same. He is more Anxiety and Complex Tic Disorder. He has more vocals now than motor but can have both. He takes low dose SSRI, fish oil, MV but I don't do any special diets or anything extreme in the way of supplements--no Epsom salts, Mag etc. I have limited his caffeine over the years but even Neuro said that the effect is only short term on tics so, if he has an occasional glass of "real" Pepsi---so be it, may tic a little more for an hour or so then he diminishes back to baseline. I have used combo of Inositol/Choline (400/400 mg)caps in the past and it did help to diminish vocal tics. I was not high dose either. He was 8 at the time and I gave him 1 tab daily then increased to twice a day and it worked to diminish tics.

3) If you have Chiro willing to work on children...can't hurt, may help. Acupuncture might be scary for kids, especially at age 6, might want to see if regular spinal manipulation makes a difference first.

 

There's no easy answers with tics. I have learned that I am more bothered by his tics than he is---good, bad or indifferent. So, yes I have had to make peace with it not that I like it.

 

HTH.

[mar]

Sinto mom. Yes there are ways to help. Tics are a sign that something is not right. Ds was real bad at 7&8 one thing to look in to is diet!!! This is what helped my children! Allergies sensitivities and basically taking out preservatives made a difference cs? I have been on this forum since he was 7 he is now 11 and doing awesome with tics!!!! Nerves and excitement are always there but he has been doing well with the ticking!!! These emotions used to bring on tics but not no more. He is on all stars baseball going into travel and coaches are following him and he is doing awesome. Never give up !!!

[zinto]

Thanks for the feedback guys . We are working on diet in a big way . We have a few supplements but it's hard to know how long to keep them up for or if they are doing any good ?

911r n why haven't they diagnosed TS ? What's the hesitation in relation to ? Interesting .

Has anyone tried the GAPS diet ? I have heard its complicated but very successful for all manner of health problems .

[Chemar]

1. Bach Rescue Remedy is a great standy for calming when tics increase during nervous/excited phases (provided no allergies to the flower extracts ingredients) Also lemon balm, chamomille tea and good old deep breathing techniques. There are also good aromatherapy opils for calmin...we like lavendar and jasmine

 

2. I don't believe anyone can ever say they tried "all" the alternatives as the combinations and treatments are so complex, and individual needs always factor in so that what works for one may not for others! If a child has genetic TS, then there may never be a total remission of tics, nomatter how many good things one does. But from documented experiences by so many people, trying to clean the diet, heal the gut, clean up environment and eliminate as many triggers as possible, as well as investigating an possible additional infection connection really can make things a whole lot better!

 

3. Fish oil has been noted so many times as a potential tic trigger that flaxseed or other omega 3 sources may be a better option, while eating salmon and other omega 3 rich foods. Recent research does again point to taking in a balance of the Omega 3, 6 & 9s rather than this emphasis that some have had on high potency UNNATURAL omega 3 only.

If your child does not need magnesium in supplement form then why give it? remember it is primarily kids with TS who benefit from it and your child may not have TS from what I understand? Supplementing correctly is a very individual need based process...again, what works for some may not for others.

 

4. NUCCA chiropracty helped my son's tics greatly (find a practitioner at http://www.nucca.org) and accupuncture has always been a tremendous benefit to him (not just for the tics, but also the OCD, anxiety, Crohn's etc) He started it aged 10 and with a qualified CLINICAL accupuncture therapist (be careful to choose wisely, usually those recommended by your physician would be a better choice ) The experienced practice of correct needle placement (they are hair thin) means no pain and much gain.

 

 

Hi everyone ,
Just ambling along slowly in this journey of trying to treat my 6 yr old sons tics - and I have a few qs I would love your thoughts on :
1) what to do about increased tics from nerves / excitement ?? Anything ?? I don't want to avoid these situations but he is definitely worse when they occur and I just wonder if anyone ever found something that helped with that ??
2) would you say that when someone says ' we tried all the alternatives - nothing worked for us' that basically they have just not exhausted the options ? It's such a puzzle and I can understand anyone saying it all got too hard . I just wonder if you think that the puzzle can be solved if you keep going with alternate options / diet /etc or are there really cases whereby no its just got to be ' lived with ' .
3) my son has had a hair analysis come back and say he washing in copper amongst a few other things and very high in magnesium ( he takes natural calm and has eps salt baths ) so we have eased off the mag- or should we stick with it even if the levels are high ?? She has given him fish oil ( just DHA ) , glutathione and a multivitamin for now and said come back in 6 months. He has been on those now for approx 3 weeks , no change yet. - possibly slight worsening . - vocals have started .

3) Our chiro said his head was a bit out of line and has given us a number for the craniosacral therapist . I emailled her and shensaidshe has no experience with the condition but imagines that she would help with him his anxiety , irritability etc . Which may then help tics . Anyone found this ?
Also interersted in acupuncture but not so sure he will handle the needles .

Thanks everyone , would your thoughts x

[911RN]

Thanks for the feedback guys . We are working on diet in a big way . We have a few supplements but it's hard to know how long to keep them up for or if they are doing any good ?

911r n why haven't they diagnosed TS ? What's the hesitation in relation to ? Interesting .

Has anyone tried the GAPS diet ? I have heard its complicated but very successful for all manner of health problems .

Great question...I even asked the our current neurologist several years ago ...does he have TS and he said No??!! Seems like he gave me a rationale at the time that I have forgotten. Apparently, there is something different (?) about his tics that makes him not TS. He has him diagnosed with Anxiety with complex tic disorder. My son has/had Landau Kleffner Syndrome so I think they feel like his tics are part and parcel to that process and/or a sequela to LKS.

 

My son is very OCD on food choices and selections. He eats the same diet over and over. Not the healthiest option nor the best diet. However, the stress of trying to get him to eat a specialized diet would likely increase his anxiety and then his tics so I have never tried any specialized diets. Mom cop out. His tics are usually repetitive statements from cartoons, TV shows. Phrases of sorts. I think docs feel this is more tied to OCD behavior than actual ticcish behavior. IDK. More conscious than subconscious. Echolalia of sorts. Actually it is Palilalia to be more accurate. More voluntary than involuntary as a stress reliever as he feels compelled to say these phrases and things to reduce stress. I believe he gets a lot a comfort from his tics. As i said earlier--they bother me more than him. His tics have morphed into his OCD behavior. Compulsions more than tics- if that makes sense.

 

Although, he does have some grunting, cough, throat clearing, whooting and peeping type vocal tics that could be viewed as more classic TS involuntary, unconscious tics. Does have some motor tics- some weird hand movements like making a claw (many PANDAS parents report this). He is an antsy kid- lots of "movement"- gross and fine motor movement but not all of it could be actually called tics. He does seem to be bothered if motor tics become bad- does not seem comfortable in his own skin. Thankfully, does not happen often and short lived when it does. He is going through puberty now...hoping he will outgrow some of it as he gets older? He has lessened over the years with tics but he still has waxing and waning with worsening after illness and/or with Spring/Fall allergies.

 

I am holding off on doing any kind of formal therapy like habit reversal or the OCD clinic in Florida until we wean him off Lamictal. He is on a slow 1 year long wean---he is on Lamictal for abnormal EEG associated with LKS. Abnormal EEG risk diminishes with puberty . Has gone from an all time high of 200 mg Lamictal to 75 mg now. We are going down 25 mg every 3 months. Lamictal can actually cause medication induced tics. So, we'll see what happens once he is off it or a lower dosing with tic behavior.

 

I have tried Omega 3,6,9 and Omega 3---did not appreciate much difference in tics on one vs. the other. I keep him on the Omega 3- just one a day just because his diet stinks and I know he needs the fish oil. Does not likely get enough of this important nutrient in his diet.

 

Interestingly, my son has never had any real gut issues--no constipation or diarrhea. Normal BM daily, no issues.

 

Agree with Chemar--find good Chiro or accupuncture for children---may be helpful. I am a big believer in Chiro for myself--have had to have therapy for c spine subluxation, for hips after child birth, sciatica and when I pulled my shoulder out. Although, I never taken my son.