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In a quandary - my daughter just started tic-cing


shydee75

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Hello,

 

I've been following Latitudes for the past 2 weeks and it has given me some hope.

 

My beautiful 6 year old suddenly showed signs of ticcing in January this year. She has a head nod, hand jerks, eye twitching and she jumps. We went to a neurosurgeon who simply advised us to wait it out. I mean, how can I sit back and do nothing? So, I did some research which led me to this wonderful site and I managed to find a doctor who believes in allergy testing, mineral deficiency etc. Mind you, I'm from Singapore and most doctors don't subscribe to this over here. Finding organic food which tastes decent is pretty difficult as well.

 

Anyway, I've taken my kid off milk and gluten for the past two weeks and her jumping seems to have lessened somewhat. But, just yesterday, I gave her some Silk Soy milk, some organic raisins, some Earth's Best organic apple, peach & banana juice and her head nods appear to have started again. Her hand jerks are also more pronounced. I've been giving her ChildLife's Liquid calcium/magnesium and ChildLife's Multivitamins and Minerals for the past week. I've also started Nordic Natural's Children's DHA. Not sure if I'm doing it right though.

 

Our doc recommended the Magnesium and DHA. He hasn't done any tests yet. I'm hoping to get the test done next week and the results will only be out in 3 weeks. Any ideas on what I should do in the meantime?

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Hi and welcome

 

2 things stand out...the soy, to which some are allergic and the DHA as many seem to tic more when they take the fishoil form of omega 3

 

my son uses soy with no problems but if he takes fish oil he has a major tic wax. for this reason we use flaxseed oil for his source of omega 3 and he can eat fresh Alaskan (never farmed!!) salmon without problem

 

also, we do have some kids represented who seem to react to certain fruits negatively...my son isnt one of them but many follow Feingold diet becasue of this

 

we learned in the beginning to only add one supplement at a time and wait a few days as that way it gives a more clear picture of what may be working well and what not

 

do be encouraged tho that most tic disorders in young kids seem to resolve quickly

 

it's great that you are working on diet etc as nomatter the root cause of the tics, it is always a good idea to clean up diet and supplement deficiencies

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Hello Shydee75, welcome,

I would encourage you to lay off the fruity stuff for a bit and see what happens. My son seems to go in a waxing mode when I give too much fruit, I have seen this several times, so it seems. They contain "salicylates" which is one of the things that seems to be a problem for some kids and is the premise of the Feingold diet. You can read about it here: http://www.enzymestuff.com/conditionsensitivities.htm#10

 

I'd be interested to know if the tics especially the head nods seem to calm after a week to 10 days off the fruits, that means raisins, apples, bananas and peaches. Pears are low in salicylates (and actually so are bananas, but they have "phenols" which could be a problem too, they seem to be for my son when he has too many in one week.) so stick with the low ones if you want to give some fruit or veg. I've also seen blueberries seem to be a culprit at different intervals, for us it is an accumulation, so I basically keep fruit out for now. I know fruit seems healthy, but really it is alot of sugar, albeit natural fructose type sugar, but sugar nonetheless.

 

Faith

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Hi.

 

I agree that the fish oil could be a problem. As you'll see on here it has really helped some and been bad for others.

 

I started my son on it during a bad time hoping that he'd be one of the lucky ones. Still can't be sure, but it didn't seem to help him. The tics kept going when they would normally have stopped.

 

Lyn.

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Hello,

 

Thanks for your concern and helpful suggestions. I will try them out.

 

Just yesterday, my daughter started having hiccups. It's just something that happened out of the blue. She had two bouts of hiccups today as well. I've read that this could be vocal tics. Don't know if I'm hyper-ventilating. Sigh!

 

Her head nods, jumps, hand jerks, facial gramaces are still pronounced. This is really scary and I can't take it. I really wonder how I can help my innocent kid. It really pains me to see her this way. I haven't spoken to her about it but I know that she feels that something is different. When I read to her at night and try to take her little hand into mine, she pushes me away. I think she doesn't want me to feel the spasms in her muscles. I ask her if she has any pain and she says 'No, mum. I'm fine'. And when she prays at night, she never asks anything for herself. It's always innocent things like 'Dear God, please make the world a better place. Teach people not to litter. Teach them to care for others and God, please look after everybody.' When I ask her what she prays for and when she tells me these little things, it pains my heart that she has tics which she can't control. I cry as I write this ....

 

SHD

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Shydee 75,

 

I'm so sorry you're feeling the way you are, but it's a normal reaction. You will get there.

 

You mentioned that you haven't spoken about the tics to your daughter. In my case, talking about it with my son helped I think. At first he didn't know what was going on either and I really believe it added to the tics. The stress of not knowing increased them. Once I spoke to him about them they seemed to decrease. Ofcourse I let him know that he was normal... I didn't realise at the time but he had actually thought he was going to die until I talked with him.

 

Some choose to discuss it and others don't, and I'm sure you'll do what you think is best. In my opinion, if it's something they're unsure of or scared of it helps if we can talk about it with them. The best thing is that our kids know how much their parents still love them and accept them, no matter what. You just never know what is going through a child's mind.

 

We all know what it's like to feel helpless, but you will find some way to help your beautiful daughter.

 

 

I wish you all the best.

 

Lyn.

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MY son started doing that when he was 3 1/2 and doctors thought he was having seizers then they took that out and called it ticks he hasent dont it in a while but its been alomost a 3 years and he starts to do it again.Im scared for him he says he cant stop blicking and its scaring him but i have notice bright light and tv and video game make it worse so i have back off on that but what can u say to a 7 year old that already knows somethings wrong with him sometimes i get down cause how i see it my oldest on has the ticks and i and him worry about it and then his brother which is younger has a heart and lung proublem .So i sometime set back and wounder what have i done but i have gotten older and have thought about it that god put the with me for a reason its hard to see your kids in pain but its even harder to see u crying

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Hi shydee75 (and also Amber 81),

 

I would definitely get a throat culture (to check for strep) on your dd. Do the 48-72 hour culture if the rapid is negative. If your dd is postive for strep she may have PANDAS. Be aware that many PANDAS kids have strep with no symptoms (no sore throat, no fever) other than tics (and/or OCD and/or behavior changes). It may be worthwhile to culture family members (esp. siblings) as well.

 

Be aware that many neurologists do not "believe in PANDAS". Many do not really know much about the disease. It saddens me that most kids with tics (who could have PANDAS) never get a simple throat culture at onset (or when their tics reappear after a quiet period).

 

It would be easiest to get the cultures through your pediatrician. If they question you and laugh about the PANDAS theory put your foot down and demand a culture. (You can even make up a story about strep going around your child's classroom or family members having sore throats...the end justifies the means IMO.)

 

6-7 years is a common age for PANDAS symptoms to manifest for the first time. (Sometimes there are episodes even before that.) Also, we are in the height of strep season, which makes PANDAS a bit more likely.

 

If you have any additional questions about PANDAS you can post on the PANDAS forum.

 

It's possible your child is no longer culturing positive if it's been more than a couple of weeks since the onset of tics. Many will culture positive for months, however, so it is still worth doing. Some people find getting strep titers (ASO, anti-dnase B ) to be helpful if your child is no longer culturing positive and you think PANDAS is still a possibility. Here is some helpful info. on that: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Good luck!

 

Amber81...I would culture your sons as well. The fact that your son's tics are "episodic" (came, went away, now back are back again) is suspicious for PANDAS. (Although PANDAS can also be chronic.)

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  • 2 weeks later...

Hi ,

 

An update since the last time I posted:

 

I went for an allergy test (IgG) for my little kid and she is practically allergic to everything that she has been eating for the last six years. She can't take soy, dairy, gluten, and chicken. She loves fried chicken, cake, ice cream, toufu - sigh! Life is really unfair!

 

Anyway, the doctor has started her on a host of probiotics and supplements. He is trying to correct her leaky gut. We've been taking them for two days now and I notice that her tics are getting worse. I'm wondering if this is a common reaction. Her supplements are as follows:

 

- Therbiotic Complete (probiotics from Klaire Labs)

- Super Nu-Thera powder (multi-vitamins from Kirkman)

- L Taurine (Kirkman)

- L glutamine (Kirkman)

- Magnesium and Calcium (Child's Life from GNC)

 

Please advise - thanking anyone who can shed light on this in advance.

 

Shy

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Hi,

I am fairly new to this site as well but through my own research and numerous questions answered by these caring people I have learned the following the l-glutamine is a form of MSG and in some children it can worsen tics also the taurine can worsen tics in some children as well/ magnesium,calcium,zinc-b vitamins also important, however I stopped the super b complex my son was getting he still has b vitamins in his multi vitamin--my son was also allergy tested 2 weeks ago and has a bunch of allergies as well I am in the process of tweaking his diet--alot of this is trial and error--we will be testing for PANDAS this week as soon as I get the lab requestions. I feel how upset you are because I feel that way alot as well. I talk to my 9 year old about his tics and I think it does help to talk about it--he is 9 and his started about a year and half ago. Take Care.

 

Deanna

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Thanks for your reply Dee.

 

I called the doctor yesterday and he said that my kid shouldn't be eating pork. She shouldn't be eating salmon either. I'm at my wits end. She can't take chicken, soy-based products, eggs ... Now, the only meat she can take is lamb and some types of fish and even then, he says fish should only be taken twice a week. What exactly can I feed her? She is reallllly hungry. And her tics seem tp have worsened as well. not sure what's causing this new spate of tics. Any suggestions/ideas to help a lost and troubled mum?

 

Thanks for giving me some sanity amidst all this - i really turn to this website whenever I am troubled.

 

Shy

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Hello,

I am having the same problems as well at this point with my son--its so frustrating to know what to do but I think its trial and error--i am really going to fine tune his diet in terms of the corn allergy. I am going to continue with the magnesium, calcium and zinc----I am going to keep reading posts on here to see if I have missed anything--I hope and pray things get better for you hang in there --things have to get better. talk to you soon.

 

Deanna

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Thanks for your reply Dee.

 

I called the doctor yesterday and he said that my kid shouldn't be eating pork. She shouldn't be eating salmon either. I'm at my wits end. She can't take chicken, soy-based products, eggs ... Now, the only meat she can take is lamb and some types of fish and even then, he says fish should only be taken twice a week. What exactly can I feed her? She is reallllly hungry. And her tics seem tp have worsened as well. not sure what's causing this new spate of tics. Any suggestions/ideas to help a lost and troubled mum?

 

Thanks for giving me some sanity amidst all this - i really turn to this website whenever I am troubled.

 

Shy

Hi , I was wondering if you asked the doctor about the l- glutamine and msg? My daughter previous took l-glutamine and I was thinking of putting her back on it. Thank you Maryann

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  • 3 weeks later...
Guest heidi

my daughter has tics...they started when she was 4, she is now 6, and my sister in law first noticed because she was doing some stuff that reminded her of her son, who has since been diagnosed with tourettes. then it really kicked in for my daughter and they were quite bad. I was desperate at first, looking to see if there was anything i could do while i waited to see the doctor and stumbled upon this website. i read about the feingold diet (no art flavors, colors, preservatives, some people avoid salicylate (wrong spelling i know). i joined up and they send you a booklet filled with products that are ok...free from those things i mentioned above, as well as other info. it has controlled her tics almost completely, just that alone. i am in process with allergy testing, etc, but have been slow, because the tics are controlled so well. my nephew is now also on this diet, and has improved.

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