Where do I start?

[cidermill]

Hello. I have been reading old and new threads for a few days. The honesty, advice and shared experiences in these threads are just amazing. My daughter just turned 8 and developed sudden facial motor tics and most recently a vocal tic, albeit infrequent. It's scaring me to death and I find my every waking moment has been spent watching her and then, when I see a tic, I get so upset I feel physically sick. It's been about a month. I know she feels my worry and I know I have to ignore the tics. It's so hard for me to do. I so badly want to "fix" her, but I know I can't.

 

Reading some of the posts here has given me some hope that maybe I can help lessene the tics through diet and supplements. Can anyone tell me what I should do first? Should I take her to an alternative med dr? There is one near our home in central NJ. Where/how do I have her tested for food allergies/sensitivities? I read about wheat, dairy, yeast, mercury, and msg as possible offenders. Are there more? I have switched to more natural foods about 3 months ago -- strangely enough, just before the tics started. She does complain of a "gloppy feeling" in her throat quite often, so maybe she does have an allergy? I have outdoor allergies which are very bad right now.

 

In short, can someone point me in the right direction of what I should have her tested for? Which specific tests should I be looking into? What should I be eliminating off the bat (besides HFCS, artificial everythings, & preservatives)? Is there a specific "kind" of Dr. I should see? My ped told me neuro, but that seems like they'll want to medicate and I don't want to. What about other kinds of therapies/treatments? Lastly, I'm afraid I see some of it starting in my 5 year old son. Should I have him tested at the same time anyway? I'll try anything that might help my babies.

 

Thanks you, in advance, for any guidance you can provide.

Christy

[dut]

Hi - I'm not a parent of a child with fulltime time tics, although our dd has had some of these as part of her PANDAS dx, intermittently. I usually post on the PANDAS forum part of this site but lurk here sometimes too.

 

When I read your post about your younger child starting too, I wondered if both of your children started to exhibit signs within the same time-frame and if so, if you had considered an infectious trigger and a possible PANDAS/PITANDS diagnosis.

 

There's heaps of info on the PANDAS forum too if you want to explore an infectious trigger as a possible cause..

 

good luck in finding help for your children....

[CSP]

Welcome Christy,

 

I know all too well that sick feeling us parents go through. My son is the one with TS and for a change he has caused me the sick feeling. My non-TS DD has, but only because I sent her off to college yesterday, and miss her sooo much. So if I'm brief that is why, I can't seem to focus today.

 

I would first start with a clean diet. Get rid of any junk, and I would have her tested for allergies first so you can get those out of her diet or out of the house as much as you can. Has lyme been ruled out? If not ask your ped to have that test done ASAP.You should see a neuro so he can check if the brain activity is normal. Take it slow because too much can overwhelm you. Start giving the epsom salts baths and research the supplement that have helped the children here and start out with one at a time to see if it has helped. Chemar has a great post on what helped her son with supplements.

 

Hope Chemar posts soon, she is so good at adding things I have forgotten.

 

God Bless,

CP

[Cj60]

Hi Christy,

 

I think several of the posters here are in a similar situation. My son is also 8, and has manifested lots of the classic tics recently, too. Here's what I've done so far.

1) Read read read online and gotten Sheila's book on natural approaches to tics/ts;

2) Eliminated dairy and as many junk items (HFCS, artificial flavorings, preservatives, etc.) as possible. This has been the hardest part of the whole thing. Non stop reading of labels. My son broke down a little last night when I told him sugarless gum was no longer an acceptable food. Not that he even chews it more than a couple of times a month. It's just that he sees things that he has always eaten (and his little sister still eats) taken away from him, and is feeling a little vicitmized.

3) Began supplementing with mg (kids calm - every morning), a natural multi vit (every morning), and flaxseed oil (a few times a week because I tend to forget by the end of the day, since I don't want to overwhelm him with too many supps in the morning);

4) Taken my son to a ped. neur. Not a good experience;

5) Taken my son to an enviromental dr. A good experience. I feel hopeful with this, since he, unlike the p.n., actually did something: scheduled allergy tests, one of which we have done (3 more to go, my poor son's arms!). It confirmed our suspicion of dairy, which we had already recently eliminated from his diet. He also recommended a couple of new supplements: a probiotic, which I laid off of fairly quickly since I'm not yet confident about all of this and got nervous when I sensed an increase in tics a few evenings after I started it. He provided us with another supplement, too, about which I've posted but which I have yet to administer to my son. He also ordered a urine analysis. We have a follow up appt. in around 5 weeks. Hopefully by then we'll hear about the urine test, and have more to go on than we do now.

5) Met with his teacher, school nurse, and guidance councelor. It was a very meaningful visit for me, even though I embarrassingly sobbed through 3/4 of the meeting. (Even dad's break down once in a while:) I was assured that they will take good care of him, and make sure he is successful in school, tics or no tics.

 

I'm pretty sure that the combination I am using now has had a positive effect; that is, tics are less noticeable than they were before we started down this path. But they are still there, especially in the evening when he is winding down. And I've noticed some minor ocd features. So these are the things on top of my list: how to address the moderate pique in the evening hours (we're getting the tea recommended by Chemar, to start), and how best to supp for the minor ocd symptoms.

 

I'm sure your path will be as major a learning experience as ours has been. We're a different family now than we were five weeks ago! And thanks to this site, I'm hopeful.

 

Chris

[mythree]

Hi Christy.

I know exactly how you feel, when you talk about that sick feeling. I can be having a great day and then my daughter starts a new tic, or goes back to an old one and my day comes crashing down. We have been battling these for years, but everything has just gotten worse lately for she is now very aware of them and very upset by them. So now we are doing everything we can. I feel like I have been living in a state of anxiety for years now.

 

1. I took her to a pediatric neurologist - to rule out that there wasn't anything physical going on. She had an MRI done - to make sure that there wasn't something causing the tics. He did mention medication as an option, but we knew we weren't going that route, so I was just happy to have him say she didn't have a tumour or something on her brain.

 

2. We took her to a doctor in the States (I am in Canada) and he is medical doctor but also specialises in natural treatments - he is very well known for his work with autistic kids, ahdhd etc. He did masses of blood tests - and it came back that she was quite low on many vitamins/nutrients. He also did a hair analysis of the toxic metals and minerals etc in her system.

 

3. My daughter also has inattentive ADHD so we are seeing him for that too.

 

She currently takes in the a.m.

Enzymes

1000mg of Vitamin D (she was very deficient - and she has her blood checked regularily)

Vitamin E

Spectrum complete multi - powder form

L- Carnatyn

5mg of natural source lithium (just started today)

Omega 3's

pre-pro biotic

 

P.M

spectrum complete again

Vitamin E

Magnesium glycentate powder

Enzymes

 

We also rub on transdermally Glutathione twice a day

 

As of today we are eliminating dairy. After that trial we are moving on to eliminate all the artifical stuff, HFCS, colours etc. My thinking is to remove one food group at a time - so we really know which one is effecting her. So far with all the supplements I have noticed a huge improvement in her ADHD. Not so much yet in her tics. Her motor tics are much smaller - but they are still there. she still has her vocal tic too.

Good luck. I know how hard this all is.

[cidermill]

Thank you for all of the wonderful replies. My first visit will be to see an alternative therapy/natural Doctor. Do any of you live in/around central NJ so I might bounce the name of a Dr. off you? I'm hoping this doctor can order up the right batch of tests to see if she has any allergies/difficiencies etc. I was going to take her to an allergist, but the practice I'm considering tells me they can do this too. They might want to do more kinds of tests too...who knows?

 

I did have her tested for strep and Lyme, both of which were negative. I really suspected Lyme since my dog was treated for that in June.

 

I'm also wondering if a therapist could help her, in case the tics are caused and/or heightened by anxiety? My mom thinks they are. Who knows. It had been a stressful atmosphere at home just before and at the times her tics began. It's so hard to tell what exactly is going on. I'm sure a neuro would say early TS since her cousin was just diagnosed and her brother is showing some of the early signs that her cousin did, before it escalated. My daughter's tics are slight, her friends haven't noticed, but I sure do. But I'm looking for them. I thought, at the very least, a therapist could help with the sleep issues -- she does not want to sleep alone and has great trouble falling asleep. At this point I just let her fall asleep in my bed. Awful, I know. Are the sleep issues a big part of TS?

 

I sure wish it was something simple like and allergy or food intolerance that was doing this. Does anyone have any direct knowledge/experience that it could be?

[Chemar]

Hi and welcome

 

you have great input so far

 

I am working so cant post long

 

here is a pinned thread with helpful info...in it you will get info on testing etc

http://www.latitudes.org/forums/index.php?showtopic=2459

 

I have a link in my signature that details what we did to help my son. I wrote it in 2003 and updated it recently

 

all the best

[cidermill]

Thank you, soo much, ladies. I have a lot of reading to do. It's overwhelming, but I committed to finding natural ways to help my daughter. I am hoping to see an alternative route doctor (he's a DAN dr.) soon to discuss. I just want to be sure I ask all the right questions and don't forget anything. I want to read up on the tests to make sure I ask for the correct ones...but hopefully he should know which are the best, hopefully. Thanks again. I am really, really trying to be hopeful.