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Kevin,

Just wanted to add that my son got a few tests done back when we did the Neuroscience neuro test and they determined he was dehydrated and needed a better electrolyte balance, etc. It was good to see that b/c he is out on court about 20 hrs a week and when it's hot here in Phoenix it can really create problems.

 

Bonnie, I'd like to get those tests done. Do you know what they were called so I know what to ask for?

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Kevin, this is the company that does the testing

https://www.neurorelief.com/index.php?optio...9&Itemid=74

 

that test as well as many other helpful bits of info are all found on the sticky thread at the top of this forum

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

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Since your son is complaining about joint pain, have you considered Lyme Disease? It may be a long shot since the gymnastics could certainly explain the aches and pains, but it might be worth checking into since Lyme can cause joint pain AND neurological issues, including motor tics. I read on this board about Lyme disease causing motor tics and remembered 2 tick bites my son had 6 months prior to his motor tics starting. I had him tested and sure enough, he was positive. Many people with Lyme don't even remember being bit by a tick.

 

Not to take back my own thread or anything. :angry:

Well, this week has been very progressive.

We kicked milk and almost all dairy starting on Sunday (for those following along, It's Saturday now). We also started him on 1/2 tsp of Natural Calm and 3mg Melatonin nightly. He's now been on Tenex 1mg for 10 days.

 

Over the past week his cough is nearly gone. Monday was SUCH a good day (before starting the suppliments). Tuesday, not so much. Then Wed through today got progressively better in every way.

 

HOWEVER! (Why is there always a 'however'!??)

 

Over the past several months he's progressively been complaining more and more about pain in his joints- knees and elbows. He stretches them all the time.

Since he doesn't drink a lot (no matter how much we force him) we keep telling him that he's likely a little dehydrated.

Now he's adding in his neck aches and kinda doing a full body stretch/shrug thing (Oye...).

 

To recap- he's a competitive gymnast. He's in the gym 13 hours a week. They stretch the ###### out of him. He's practically a contortionist. We're not convinced that his problem is a tic yet. It can SO easily be related to his activity.

 

Anyway, I'm thinking a CBC is in order. You can easily determine the level of hydration (plus some other things like nutrient deficiencies) from it.

 

Anybody have any other thoughts?

 

Honestly, I'm just excited that the cough/throat clearing seems to be fading away! Not getting my hopes up yet.

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My son used to be up late due to his tics until we started Melatonin! It works like a charm, better than Tenex to put him to sleep. I give him drops, about .75 mg, about 20-30 minutes before bed (he is 5 yo, about 50 lbs.). He goes right to bed without an arguement and goes right to sleep. My husband and I wonder how we survived the nights before melatonin!

 

Best of luck!

Stephanie

Hi all,

I've been trying to absorb all I'm reading and it's all starting to go in one ear and out the other.

My 8 yo son's tic has been progressively worsening for the better part of a year. His tic manifests itself mostly as a series of coughs/throat clears so naturally we initially thought it was something medical. We tried so many things (adenoid removal, reflux, etc) until we decided to see a pedi neurologist about 6 weeks ago. Well, she immediately diagnosed it as a chronic tic and put him on clonidine. We weren't happy about it but she instilled a lot of confidence in us that it would work.

 

Well, after a few weeks we met with her again and decided to switch to the patch. Within one day he had a pretty bad reaction to the patch and ended up in Childrens Hospital - Boston for 2 days. It was horrifying. Because of this we ended up switching neurologists to the Dr's at Childrens. They switched him to Tenex and within a couple days I started reading up on alternatives which led me here.

 

Now, when he started the Clonidine he wasn't THAT bad but progressively got worse and then better but never gone. Then when he came off the clonidine, the tic came back with a vengeance. It was almost debilitating.

 

After switching to Tenex, he is no longer the zombie he was when on clonidine. He's also taking it at night instead of in the morning.

 

What we're noticing now that we're trying to find the triggers is that his tic's are much worse during moments (however brief) of downtime. If his mind is taken up doing something that he gets immersed in like games or playing then his tic almost disappears completely.

Naturally this means that bedtime is a major challenge. He lays in bed and coughs sometimes for a couple hours or more. It's rough.

 

We give him the Tenex within an hour of going to bed but it doesn't seem to have the sleepy affect that clonidine does (which we're happy about).

 

Getting him to sleep at night is about as big a deal to us as trying to keep him from becoming a disturbance at school. We plan on starting dietary changes this week. I'm about half-way through Sheila Rogers book and will start as soon as I get to the section about how to.

 

Does anybody have any initial thoughts on how to counter the tics that seem to be happening when he's idle?

 

I don't even know if I'm asking the right questions. This is all so overwhelming. I'm sorry if I'm not making sense. My head is overloaded. I need someplace to start.

 

Thank you,

-Kevin

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Kevin,

 

Just thought I would chime in quickly--

 

I think joint pain can be indicative of auto immune/ inflammatory response. When his joints ache are they also swollen? The best test would be to see if a ring fits one day and then is too tight the next. If opening a jar is painless one day and then impossible the next-- that sort of thing. Does he complain of headaches, stomach aches? What are his bowel movements like? Are the shaped well, soft and well formed? What color are they? Does it hurt just prior to making a bowel movement? Do they sink or float? Does he commonly have undigested food in his stools? Common abnormalities in the bowel movements can pinpoint digestive problems, which in our case were the crux of our son's neuro issues. We too saw much sleeplessness in the beginning. He would lie awake for up to 2 hours at night just blinking away.

 

I have had problems with inflammation on and off for years myself. We practice a strict diet over here out of necessity. Celiac is rampant in my family. At the time of my son's onset he was eating a lot of dairy and wheat. The recovery process for him was slow and we did do many tests on him before learning that one of his major contributing factors was undiagnosed Celiac disease and later we learned that he also had probable fungal overgrowth issues. Corn is very detrimental to his system and corn syrups used to be major triggers for him neurologically.

 

All the suggestions you have gotten from previous postings are excellent. This is just one more thing to rule out in the event the others test negative. In a younger child (ages 4 and under) a false negative is common for Celiac and usually the doctor and family prefer to use genetic screening and trial diet rather than biopsy. You don't need to test for it either. Many folks just decide to do a trial gluten free diet for six months or so to see if there is an improvement in symptoms. Gluten is not like milk and it takes months, years even, for the antibody levels to drop into the normal level. My son still wasn't in the normal range two years after we started the diet (but he was very close). How is he now, three years after the diet? Symptom free.

 

Things to look for on the CBC that would point to possible need for Celiac testing:

 

anemia (low iron stores)

Low IgA (which would result in a FALSE negative on the Celiac antibody test, so I would do a genetic screen instead if I were you).

Low blood count

 

If you do urinalysis like the OAT test from Great Plains and there is major nutrient deficiency in B vitamins, magnesium, etc.... then I would also look at a Celiac screen. The OAT test will also show you if there is bacterial or fungal issues involved.

 

Caryn

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Thanks Caryn.

When the results come back I'll talk these things over with the Dr's.

 

Until then we have his gymnastics regionals this weekend. Through all of this he's been looking very rough in the gym. Several steps back in some instances. Hoping he pulls it out this weekend so he has something to be extra proud of.

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Okay, as I sit here in a hotel room watching my son playing with his friends, I now can guarantee that these new movements are a tic. The coughing is virtually gone and replaced by a combination of first pressing his chin to the top of his chest with his arms partially out to his side followed by a partial bow. He claims it's all a stretch but it happens pretty constantly and he completes it all with 1-2 seconds. That combined with the fact that he does it more as he gets closer to the timing of his dose is gets much worse.

 

Still, I'd prefer this progression to the loud cough.

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Hey Kevin. I'm sorry that things are progressing further. You do sound kind of positive though, which is a good thing. Is he affected by tics while competing, or does this require concentration that takes over his tics, even for the length of his routine? I've seen with my daughter that even during her dances, she tics - but this perhaps is more noticeable for me than anyone else?

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Well, he did okay yesterday at the meet. He tics in between events but even then not heavily. Never had a problem while competing. He was so stressed over this meet. It's a big one. He slept great the night before in the hotel room but at the meet his coach texted me to ask if everything was all right cuz he seemed REALLY tired. I think it was just the stress of it all.

 

He pulled out a solid performance though. Better than we had expected given the month he had.

 

He just got home from school and was coughing a bit. Not bad though but no where near as seldom as he did over the weekend.

 

Tics are a strange thing but for now the sky is not falling. I have a positive outlook. It helps to have a support community like this. :)

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I keep forgetting to do that. Got to pick up more Epsom.

 

By the way- for anyone that thinks their kids are going to struggle through their childhood because of tics: the kid who won this huge meet (who is always in the top 5 at every meet) has a head twitch motor tic. I've been meaning to approach his parents about it but I could never figure out who they were.

The kid is an amazing gymnast.

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