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Hi Fixit

 

sorry if I misunderstood...what you had said was

would he need trypohan...or malanin or seretoin...or all.....

 

so I thought you were considering giving melatonin and the other serotonin boosters like tryptophan?? when you said "or all"

 

one just has to be careful on the serotonin system as a little too much can be enough to cause that spiking.

Some people on SSRI medications sometimes take things like 5HTP or tryptophan or st johns wort, samE, phenylalanine etc without realizing that they all work together and can cause a dangerous excess of serotonin, called spiking

 

a naturopath can advise on which would be best to take with melatonin, as that really is the best for sleep issues. The others like 5htp are usually suggested as well when OCD, depression etc is also a problem, but again with the many serotonin boosting natural options, a naturopath or integrative physician are best at recommending which combinations and dose.

 

we found when my son was on 50 miligrams nightly 5HTP for the OCD he could only tolerate a tiny amount of melatonin (300-600 MICROgrams) whereas many people take 1-3 MILIgrams of melatonin (I cannot even handle 1 without having major grogginess next day :) )

Edited by Chemar
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we found when my son was on 50 miligrams nightly 5HTP for the OCD he could only tolerate a tiny amount of melatonin (300-600 MICROgrams) whereas many people take 1-3 MILIgrams of melatonin (I cannot even handle 1 without having major grogginess next day :lol: )

 

So at one point you were giving your son 5thp and melatonin?

 

If my ds has some ocd stuff going on...it is minimal, i think....when his symptoms slowed down on the augmentin.(to about a tic every 5 minutes as opposed to 6-10 tics per minute)...it seemed to me, that sometimes his vocals and other compulsions, things were location based, or time of day, or other things....

but i didn't have that many days to observe, as the way things roll for me , my ds is allergic to aug...

I don't know where to go from here...the aug was sooooo promising

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yes, my son took the very low dose melatonin for a short while while he was still on 5HTP, and when he had a problem falling asleep. The doctor was the one who prescribed it so I felt safe combining. Best to check with the naturopath I think

 

what was the augmentin for? does your son have a PANDAS dx now?

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Not to take back my own thread or anything. ^_^

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.

Edited by KevinInMA
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(Sorry, I'm doing it again, painting stuff with my PANDAS brush).

 

Hi, I usually read the PANDAS board but lurk here too, and when I read that your son was having joint pain, I just wondered if you had considered an infectious etiology for your son's tics such as strep.... just a thought..

 

Good luck.

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Chemar - we had a marvelous American chiro in the uk that worked miracles for me but I have yet to find one that I rate, since we have moved here. Would you mind explaining why you only use NUCCA ones.. do you feel they are better? Better for folks with tics or better for upper body issues in general?

 

Thanks :-)

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Hi Kevin. Like you, I posted here the 1st time about 2 months ago, absolutely bewildered and unsure where to begin with regards to my daughter's tics. She turns 8 next month, and her tics strated out as a mild head shake (we thought it was just a habit) before they 'exploded' into hand shaking and shoulder shrugging in February. Like your son, she's very active, with 3 (now 4) dance classes a week, and competitive t-ball and athletics on 2 other days each week. Also, while she's never been dx as having ADD or anything, I have a feeling there's someting there.

 

How is your son's behaviour? Does he have mood swings or sudden outbursts of temper? My girl does, and the only thing the paed said to us at our last appt was that yes, she has a tic disorder, but it could be a mild case of TS, due to the behaviour issues. The behaviour is ONLY with me and my hisband, not at school (where she is of course happy, bright, bubbly, polite, helpful...!).

 

Paed told us we could do one of 3 things - nothing, medicate, or see a child psych. I've chosen the psych route, as she needs to deal with her anxiety and near-constant worrying about things. I have her on a magnesium compound, but have not tried any diet-elimination yet. The way I see it, there have been improvements, as in she's not ticing as much as before - or is it that I am becoming immune to her tics, b/c they occur so frequently? But her temper is terrible, and that's why I'm going the route I am.

 

I hope you find the right way to go for your son. I know how stressed you must be, it is all so overwhelming. Everyone on here gave me great advice, as they have with you. I'm more replying, I guess, to say that I understand, and am here for you.

 

Heidi

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Hmm... Hadn't thought of Chiro, Cheri, but that could definitely be a good idea. I'll check out the site. Thanks!

He was tested for PANDAS this week and everything came back negative.

 

Heidi,

Thankfully he does not have mood swings or temper issues. He's a very sweet kid pretty much all the time. I really think this is more related to his being a gymnast but really, you never know. Thanks for your advice.

 

I gave him an epsom bath last night and he didn't complain about it after the bath so maybe we're onto something there. I'll have to think some more about our options. I'm not fully awake yet either. :)

 

Thanks everybody!

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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.

 

He lost a match miserably on Friday AM at a national ranking tournament b/c he was dehydrated. You could tell; he wasn't moving his feet, his reaction time was slow, and he looked tired. After getting him hydrated during the day and giving him some electrolytes and bananas he won his singles match the next day. My son has been having knee pain but I believe it's tendon related and not related to his water intake. I give him Ultima as a supplement instead of Gatorade for electrolyte balance. They sell it in containers and also in packets which I use when we travel like we did this weekend. You can find the Ultima in most health food stores or online. I personally feel that Gatorade is junk anyway and we try to stay away from HFCS so the Ultima is a great electrolyte supplement.

 

As for the urine tests we got done, he also tested low on some antioxidants so we have him on an antioxidant supplement called Miracle Reds. I'm really thinking of getting him re-tested to see if the supplementation has worked after 2 years, LOL!

 

Bonnie

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Bonnie, that's great info. Thank you so much. I've been looking for an alternative to Gatorade. I'll try to find the Ultima. How is the taste compared to Gatorade?

Can you tell me what tests the dr ordered for your son? It sounds exactly like what I want.

 

Thanks!

-Kevin

 

ps: cough is still with us but maxes out right now at about a 3. I hope I'm not jinxing it by talking about it!

Edited by KevinInMA
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Kevin, as hard as it seems, please don't obsess over the tics! They are going to wax and wane all day long and it will truly drive you crazy. Yesterday my son was ticcing like crazy and today it's only about 50% of what it was yesterday which I find weird b/c it's super windy here today and usually his allergies get those eyes blinking pretty fast.

 

As for the taste of the Ultima, I have to say that I like it but ds just suffers through it. Nothing can truly compare to the wonderful taste of sugar filled HFCS Gatorade I guess.

 

If you are in a bind and want to find something at a regular grocer or at Walmart, you might want to look at Crystal light Pure fitness packets. Here's a list of the ingredients: evaporated cane juice, citric acid, malic acid, maltodextrin, calcium lactate, less than 2% of dried kiwi juice, natural flavor, rebiana(a natural sweetener from the stevia plant), potassium citrate, magnesium oxide, sodium citrate, salt, dried purple carrot extract and dried hibiscus flower extract(for color).

 

Anyway, if you need something in a pinch this is probably a better eletrolyte replacement than Gatorade and I find it to be a bit sweeter and smoother than the Ultima.

 

The Ultima has zero sugar and is sweetened with Stevia but it has vitamins along with the minerals including C, A, B vitamins, and trace minerals such as molybdenum, selenium, and zinc.

 

Also, remember that any time you are changing anything whether they be supplements or diet, make sure you do one thing at a time, write it all down, and then record your results after a week or so. Then you may want to change something else or add something else, but again, make sure you write it all down! You'll realize after about 3-4 weeks that you'll lose track, LOL!

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Kevin, as hard as it seems, please don't obsess over the tics! They are going to wax and wane all day long and it will truly drive you crazy. Yesterday my son was ticcing like crazy and today it's only about 50% of what it was yesterday which I find weird b/c it's super windy here today and usually his allergies get those eyes blinking pretty fast.

 

What if tics are the main concern.....if my kid was 50% better in 1 day i'd want to know what happened...since he was ticcing at about every 10 seconds/alternating tics

 

if we could get down to 1 every 5 minutes, i think i'd be weeping

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Kevin, as hard as it seems, please don't obsess over the tics! They are going to wax and wane all day long and it will truly drive you crazy. Yesterday my son was ticcing like crazy and today it's only about 50% of what it was yesterday which I find weird b/c it's super windy here today and usually his allergies get those eyes blinking pretty fast.

 

What if tics are the main concern.....if my kid was 50% better in 1 day i'd want to know what happened...since he was ticcing at about every 10 seconds/alternating tics

 

if we could get down to 1 every 5 minutes, i think i'd be weeping

Tics are a concern for us. Some days he doesn't go a second without ticcing and today I'm seeing him tic about once every minute to 2 minutes which isn't bad, considering he was ticcing about every 5 seconds yesterday. Other days we see them once every few minutes and other days I hardly see them but they are still there if I stare at him forEVER. My son hasn't had a tic free day in 2 1/2 years. I keep waiting for the day when they will miraculously disappear. But, one thing I've learned is that I'll go crazy if I obsess over the frequency, intensity, and pattern of those darn tics. I was forgetting to enjoy my son and I was neglecting my house and other duties b/c I was so worried about these tics that I spent countless hours researching them. When, in reality, my son wasn't the one as bothered by them as I was. And, I still don't have the answers or a way to get rid of the tics so what makes me think that spending another week on a dead end rabbit trail of information is going to take them away? What I aim for is MINIMIZING the tics, enjoying my child for who he is, and being grateful for his health and for everything else good we have in our lives. I still get frustrated especially when things are going so well for weeks and then a new one comes on and it's crazy intense and I analyze his diet and wonder what I did wrong, but I'm learning that there are some things that are beyond our control. For me, this has been a huge lesson in trusting God and in letting him guide me. OK, I'm totally rambling, LOL! Sorry about that!

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