tics are so bad, ready to try fish oil

[nola]

Hello everyone,

 

I've been trying to stay away from the internet for awhile. I've been driving myself a bit bonkers. My son's tics are so severe right now. As I type this, I am listening to him grunt and clear his throat constantly. It happens from the minute he wakes until he falls asleep. Sometimes he does it in his sleep. It is so bad that his voice is hoarse and he can't get a sentence out without the tics interrupting him at least 2-3 times. I'm feeling so helpless. I think we are ready to try the fish oil. Our homeopath recommended the NOrdic Naturals DHA jr. (strawberry flavor). I'm hoping this is a good one. Was it BigAl that mentioned Vit D could possibly cause increased tics? Hoping this works. We are starting out with 1/2 teaspoons a day and slowly increasing to 1 teaspoon. So far, we are continuing with Natural Calm and L-carnitine. Any other suggestions?

 

I need something to work. Kids are starting to ask him questions. I can hear his tics through 2 closed doors and downstairs. Is it supposed to be this bad? I need advice on how I can support him and prepare him to deal with questions and strange looks. I am worried that his schoolmates will begin complaining that they can't concentrate on work. I am worried that his teacher will complain that he can't teach. What do I do? My son doesn't want me to talk to his class. He thinks it's embarrassing. How do you deal with this? Will it always be this bad? Does it get better with age?

 

I always appreciate everyone's feedback.

 

Trying to keep myself afloat,

Nola

[eplank]

Sorry to here your son's tics are so severe. We have found that removing dairy and potatoes from my son's diet, testing revealed intolerances, adding taurine, omega 3 and other vitamins he was deficient in reduced his tics dramatically. He also does not eat any packaged foods. The greatest reduction was when we removed the dairy. After being treated for yeast overgrowth, adding amino acids and acupuncture to his routine his tics are almost non-existant. He has flare ups occasionally but most of the time his family are the only ones to notice the tics now. I hope this helps.

[Cj60]

Nola,

I'd check the ingredients on the strawberry flavored omega 3 sup for artificials

1) I forget whether or not you have had your son tested for intolerances or modified his diet at all?

2) You don't mention a good multi vitamin. There's been a lot posted here about how it is a key element to supplementation for children with ts related tics.

 

We've had good results with these two important steps.

 

Chris

[patty]

nola,

 

sorry to hear about your son's tics. what i have found that works for my son is NAET along w/a comprehensive lifestyle change. i found that my son's tics are allergy induced, so by desentizing the allergent (food or environmental), it eliminated the tic. if you search thru some of my old post, there is more info about NAET.

 

Pat

[mythree]

Hi Nola,

So sorry to hear you and your son are going through such a hard time.

How long has he been on the L-carnatine? We noticed a difference with my daughters vocal tics when we started that supplement. Also, I agree with the others about the good multi-vitamin.

Also, eliminating artificial dye's or colours or preservatives seem to be a big one for my daughter too. We didn't notice any difference when eliminating dairy (mind you - we hardly eat any dairy now - pretty much just a bit of cheese and sometimes yogurt.) We are all still on the rice milk.

 

Good luck and hang in there.

Lisa

[Fixit]

i am usually on pandas board and have done some transistion to lymes....

ds vocals started with biaxin(abx) and a steroid(contra-to lymes)also increases yeast....

 

they have just come back with introduction of lyme protocal...i have several factors going on....but i just wanted to add that l-carnitine works in the digestive area...so with that you may want to support the digestion with probiotics wether or not you are using abxs....

and i have found i need to get to 200billion...not just the 10 you would get from cultrelle...which is a great probi bye the way...

and for panda and autism kids we find it best to stay away from Strepto. therm...so no yogurt for us..it's in all yogurt that i have found....

 

just my bit of info i have to offer..trying to get my ds to remit vocals...but i felt i had to offer some other possibilities as i saw this when i logged on.

 

ps..on the fish oil...stay as balanced as possible with dha and epa or have a higher dha, as epa is stimulatory...the one you mentioned by nordic is pretty balanced

Edited February 15, 2011 by Fixit

[nola]

Thanks you for all your advice and encouragement. I feels so disheartened tonight. My son's tics were so bad last week. Then, it looked like he was getting better on Sunday and Monday. This morning, it was so bad. This evening was horrible. I just don't know what happened. I can't figure out the triggers. Maybe I'm not being totally diligent on the diet. He had milk with cereal today. Could it be that? His throat clearning and grunting is so bad that his throat hurts. He says it's like he tastes blood. I don't know what to do.

 

Should I wait until he gets better to try the fish oil? "FixIt", you mentioned that the Nordic brand was a good one. I'll give it a try. I'm so afraid to do so though. I feel that this is the worst he's ever been. Can it get worse? "Mythree" how much L-carnitine do you suggest? We were only doing one capsule in the morning. I'm not sure how much I can give. Our new homeopath said I shouldn't use it because it's a dietary supplement. I stopped using our multi because I thought maybe it wasn't a good one. It's called Animal Parade. Is that a good one? Any suggestions? We also stopped probiotics because I read on the forum that it could trigger tics, as well. Still doing Natural Calm and Epson baths. Stopped doing vaccination clearing and changed homeopaths. Our new homeopath gave us Zinc Iodocum and Nettles (for antihistamin to mix with honey). I really don't know what I'm doing.

 

I'm afraid that my son isn't getting the right vitamins and nutrients. I'll try to stop all dairy but how does he get his calcium? Can anyone recommend a good cookbook or food program that I can follow? Patty, thank you for your suggestion about NAET. I really don't know what that is. I'll do some research.

 

Is it normal for the tics to be sooo severe? My son hasn't had a break since August. He used to have weeks of tics and then a period of calm. Why is it so bad all of the sudden?

 

My son has been such a trooper. Many of his friends are asking him questions. He mentioned this evening that some are getting a bit annoyed. I wish I could shelter him.

 

Thank you everyone.

[patty]

Nola,

 

i read that you have used homeopathic remedies and now switched to another homeopath. i was intrigued w/homopathic philosphy and have tried it on my son thru our 1st NP. It was the Unda #s (combination remedy) and it made my son's tics worse. I tried it at least 2X and were not happy w/the result. I was later drawn to homeopathy because it helped me w/my anxiety so i started homeopathic school and hope to find out more to help my son. I have completely 1 year and stop 1/3 way thru my 2nd year. Also, i have tried 2 homepaths for 2 years for my personal emotional & physical problems. So i feel pretty comfortable to voice my opinion.

 

IMO, i would stop homeopathic remedies. it is not true that it has no side affects. If something is powerful enough to cure, it has the power to cause harm. It spiked my son's tics and added new ones. As for myself, i have experience worsening of my symptoms when i was not on my exact remedy. In fact, it is very hard to hit the exact remedy, i have tried about 7/8 and still have not found my remedy. I have not tried homeopathic remedy for my son after what i learned from school & as a patient. Mainly because the remedy can cause aggravation and bring up old health issues. My son has a pretty complex health issues, like asthma, allergy, acid reflux, sensory, & mild OCD, and have used chinese medicines, steriod, acupuncture which in homeopathic study, these modalities can be suppressive and creats obstacle to cure. Also, by using the wrong remedy w/high potency, it can make symptoms worse. Homeopathic remedy is energetic and it can go deep w/the wrong potency. i don't think it is the best modality to start with.

 

Pat

[Fixit]

Hi Nola...just checking back...

animal parade is a good one....

my son is 11 soon..he takes a fish oil by nordic ultimate dha eye..for eyes ..very high dha...but i think the one you mentioned is good to at least try...

try 1 skip a day...try it again..and if still good...try to continue daily

remember to try to only start one thing at a time to see if can pinpoint what is going on....

 

i have 2 other panda kids, i in remission...the other almost there...but i watch them closely

the one i mainly post about has had onset since 4/6/09....

 

at worst point my sons tics were a 7 maybe 8 close to being debilitated....almost had a couple of er runs..but the hospital cant do anything!

 

well up till about 2 weeks ago...ds had been at about 2 on the scale for several months...

but we started lymes protocal and all..(*^&^%* has broken loose.

part of that is the gut...there is a thread on the lymes board that talks about the vagus nerve, which lies partially lies in your stomach...so if there is something diagreeable or dibiosis, could createm, agrivate neurologic issues....

 

there is so much that could be varying the conditon...i have figured out some things...but have not gotten to 100% and that is my personal goal...

 

we have had screeches come back and my ears are ringing as we speak...for my ds recent screeches correlate with adding another abx...so i'm thinking something in the abx..or disbisosis(sp).which is very likely the cause....so now we are trying to reconfig abx and trying to straighten out gut...and that will take a long time....

 

i probably wont be checking here much..got my 3 trying to keep well and so tired myself of trying to heal my ds...

I wish you the best...and you can always check out the other forums as they have alot of info on probi's, fish oil and other supplements...

i do think if you can get to a good DAN doc they can run some test to see if some of his urine and other markers are off and can maybe help you in what direction to start.

 

God Bless!

[nola]

Hi everyone,

 

Thank you so much for your advice and suggestions. My son had a pretty good 2 weeks. Before that, his tics were quite severe. His tics seem to be increasing again this week. So...I started the fish oil this evening. I used only 1/2 teaspoon. I was told to eventually increase to 1 teaspoon.

 

Please bare with me as I ask questions about the fish oil. =) For those whose kids are sensitive to fish oil, when did you see increased tics or a reaction? If I see increased tics, should I stop immediately or keep at it for awhile? How long should I give it before I give up and try something else (like flax oil)? Once the kids were off the fish oil, did the tics get better?

 

For those whose kids had success on fish oil, when did you start seeing positive effects?

 

My son had such a good week last week. I'm wondering if I should have given him the fish oil last week so I could get a clearer picture on it's effects. I just wanted him to have a rest from it all. His tics are currently increasing and I'm worried I won't be able to figure out if it's the fish oil or just the nature of the tics. Ugh! This is all such a big puzzle.

 

Nola