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positive update on ds


mommyfor4

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Hi everyone, ds started a new multi two weeks ago as his other had sucralose and sorbitol and we wanted to eliminate all artificial sweetners.(I have to say it was really hard to find one without artificial sweetners even though they were clean of all other things). We have seen such a drastic drop in his tics, we have even experienced moments of silence, this is a child who always has some form of vocal tic even when doing well. The tics are not gone but are so much milder and he has definite tic free time periods. My husband and I just stand there in awe asking "do you hear that?"..."quiet". I don't think we've had this in at least three years if not longer! I also have noticed since dietary changes etc. he has been sick less and if gets sick it is sooo much milder. He was always prone to chronic bronchitis and pneumonia, been two years since any serious coughing fits (breathless,choking and throwing up). He was our two second cough kid, coughing ALL night with most colds. But this is the biggest change we have seen, since eliminating wheat and dairy etc. Feeling so positive and praying that we are onto something here! Oh, and we have gone completely organic on all fruits and veggies as well. We had tried before but were not super diligent. He is definately sensitive to chemicals, pesticides the works. Back to school today so interested to see how he is after. Sorry for rambling, just feeling like something good is happening here!

On the not so amazing side-The strange thing is as his tics are decreasing, his night time mood has changed, he is sad, and self deprecating, apologizing for behaviours that we did not even notice, and although we assure him that we are amazed by and proud of him he has spent most evening crying. Coincidence-or tied to the multi? I am fairly sure it is not an outside issue , friends etc. Any ideas?

 

Megan

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Hi Megan

 

glad to hear of tic improvement since eliminating those artificial sweeteners from the other multi...and yes, could you post the brand you are using now.

That will also help in seeing if anything in it could be triggering the depressive sounding symptoms you are seeing at bedtime

 

When my son's tics started it was accompanied by a period of deep depression and then OCD increase. I know this has been reported with other kids before, during or after tic onset, whether TS or other tic disorders. It is also something I see mentioned by some the PANDAS & PITAND parents so it seems there may be multiple potential triggers

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He is taking Progressive MultiVitamins for kids, Natural SummerBerry Flavour Chewables. one in am another in evening

This is not his first nighttime anxiety but it seems so much bigger right now. He is great up until bed and then it's like the black cloud descends on him. He is pretty articulate and verbal so at least he is not suffering in silence but it is breaking my heart. He is having fears of losing me, and being bad and ungrateful. I have to say he is none of these things, in fact he is a dream son!

I do need to note we have had some great losses over the past two years. His grandfather 2 yrs ago, his 23 year old cousin (1yr) and his great grandmother(1yr), but he has seemed to handle these quite well up to date.

 

Thanks again for any advice. Megan

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It looks like a good multi, albeit with a lot more than a regular multi would have re all the foodstuff elements added, but unless your child has any allergies to those foods, then should be fine.

 

the non medicinal ingredients tho are ones my son would not take, as citric acid and fructose (both usually corn derived) plus malic acid of unknown source, are things he avoids, and we are always suspicious of "natural" flavors nowadays since learning companies use this when in fact these are not the real deal, just more "naturally" made (but can still contain not allowed stuff)

 

I have put in a call to the company to ask about those other ingredients and will post back if I get a return call

 

http://www.progressi...ins-ingredients

 

that does not mean there is a problem for your child with those.

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It looks like a good multi, albeit with a lot more than a regular multi would have re all the foodstuff elements added, but unless your child has any allergies to those foods, then should be fine.

 

the non medicinal ingredients tho are ones my son would not take, as citric acid and fructose (both usually corn derived) plus malic acid of unknown source, are things he avoids, and we are always suspicious of "natural" flavors nowadays since learning companies use this when in fact these are not the real deal, just more "naturally" made

 

I have put in a call to the company to ask about those other ingredients and will post back if I get a return call

 

http://www.progressi...ins-ingredients

 

that does not mean there is a problem for your child with those.

Just brainstorming here:

Would any of the non medicinals be of concern regarding mood and anxiety? Same with foodstuffs? I know artificials effect his mood but have never seen this in any food other than sugars.Thus far he doesn't seem to have sensitivity with corn but I couldn't swear to it 100%.

I am wondering as I type if maybe he is coming down with something and the anxiety has replaced his tics as an early warning signal. Will watch what transpires as his sister does have a cold.

If he has been clear of pesticides etc. have you ever heard of symptoms as the body cleanses. He has also said he has a headache at night but I put it to the crying. Could his body be showing signs of detox?

Took him off Natural Calm at the same time because of Mag. in multi, dont know if that would be relevant.

Again thanks....

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Just a thought, does the multi specify that is it Gluten free? As we are embarking on a gluten free diet, I just read that natural flavor could include gluten.

I'm sorry, I put the bottle away already, but I'm almost positive it does not specify gluten free, but the fact that he has not started his "gluten/wheat tic" is a good sign. I will keep an eye for it though in the multi and other food sources, I was not aware of that and we have had him gluten free for some years! Thanks for the heads up....

 

Megan

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yes, artificial ingredients can trigger the mood changes.

 

you may want to continue the Natural Calm as the multi does not have enough in as needed for keeping tics down (300-500 mg is optimum)

 

and yes, ailing can spike tics as well as change mood.

 

keep us posted

 

if he likes things like cantaloupe, that is naturally high in inositol and so can help with depression, OCD/anxiety etc. Limes are also high in inositol

 

my son drinks lemon balm tea at night now as it relaxes anxiety/OCD and seems to promote good sleep

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That's funny, we just went shopping together and he specifically asked for canteloupe and lime, maybe he knows his body better than I ever suspected :) Thank you and I will keep you updated. I will add the Natural calm back tonight and try the tea as well with his epsom bath. Does your son use loose leaf for tea or a bagged variety?

 

Megan

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Megan, I wish you good luck identifying possible triggers.

 

And thanks very much for your post. This forum is just so incredibly valuable for so many reasons, some obvious and some not so obvious.

 

For example... I was about to recommend the multi that I had been giving to my son. It's called Animal Parade. For some reason, I was under the impression that it was all ok. But when I just googled it, it looks like it has stuff I thought I had eliminated completely from his diet. I don't know how I could have missed this, and am hoping that, when I get home and check the bottle, I'll find magically that I wasn't so careless, that somehow what we have at home isn't what I just googled.

 

I never would have thought about it if you hadn't mentioned the multi's, Megan. It goes to show how careful we have to be about every little thing.

 

And to suggest that it does make a difference what we give our kids:

 

I took my son off his multi for around a week in preparation for a urine analysis we needed to take. We finally got that taken care of late last week. Curiously, we had noticed a very calm few days toward the end of last week. I even mentioned that we might be seeing some benefits from the modifications to our son's diet. Then, without thinking twice, on Saturday I started him right back on the multis, and added a new supp our dr. recommended. Wouldn't you know? The tics increased. I decided last night that that's it: no more multis and no more new supp, cause one of the two was up to no good...

 

Today, I read your message, double check my multi, and voilá, it looks like the multi is a problem.

 

I guess I now have to decide whether or not to give the new supp another shot.

And where to get an acceptable multi...

 

Chris

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Hi Chris, we previously had him on a chewable multi by Quest but as I said we found the artificial sweeteners. I also thought I was being diligent. I am really pleased with the new one by Progressive but as Cheri noted there are some concerns if sensitive to corn. I am waiting to hear what, if any, response she gets. As far as the anxiety it is a wait and see for the cause, but the decrease in tics is amazing us! I will keep updating as time goes but as of now I will continue with the Progressive Kids Chewables. As I noted earlier I am shocked at how hard it is to find a "clean" multi....good luck and please let me know what you find and if you see postive results as well.

Take care,

 

megan

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Hi, Great news about your sons tics!!! Very exciting.

 

My daughter is on spectrum complete by Kirkman. It is also free of sweeteners, additives, colours etc - it is gluten free and cassein free as well. The DAN doctor we saw (she does not have autism) but he is DAN certified recommended it.

 

Your post gave me chills - because my daughter is also in an amazing tic free period. I know we have communicated a lot in the past - so I thought how strange/funny that was. She is also much more attentive and focused (she has inattentive ADHD) BUT so moody and sad in the evenings as well!! She cries at the drop of a hat. She seems fine, but then gets really sad. She talks a lot about her 'worries'. She has left me notes on my pillow at night saying she was having a hard time with friends or school or whatever. I did talk to her doctor about it - and he said it is a huge age thing - when they hit around 9/10 years old - some kids are prone to get more anxious. He also said that perhaps all the vitamins/supplements she is on could be making her much more aware and not so inattentive, and she may be realising things more, noticing that she is not the 'same' and having difficulties with it.

I think she is also anxious that the tics are going to come back bad. I think she is realising how nice it is to be tic free right now, but I think she is aware now how bothersome it is to have tics.

 

Someone recommended Bach's "Rescue Remedy' to me - for anxious periods. Also Boiron 'Quietude' for before bed in the evenings. I will totally try the cantaloupe and limes too.

Good luck and such great news about your sons tics (or lack of them)! Now to figure out the moody/sad stuff!!

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Hi, Great news about your sons tics!!! Very exciting.

 

My daughter is on spectrum complete by Kirkman. It is also free of sweeteners, additives, colours etc - it is gluten free and cassein free as well. The DAN doctor we saw (she does not have autism) but he is DAN certified recommended it.

 

Your post gave me chills - because my daughter is also in an amazing tic free period. I know we have communicated a lot in the past - so I thought how strange/funny that was. She is also much more attentive and focused (she has inattentive ADHD) BUT so moody and sad in the evenings as well!! She cries at the drop of a hat. She seems fine, but then gets really sad. She talks a lot about her 'worries'. She has left me notes on my pillow at night saying she was having a hard time with friends or school or whatever. I did talk to her doctor about it - and he said it is a huge age thing - when they hit around 9/10 years old - some kids are prone to get more anxious. He also said that perhaps all the vitamins/supplements she is on could be making her much more aware and not so inattentive, and she may be realising things more, noticing that she is not the 'same' and having difficulties with it.

I think she is also anxious that the tics are going to come back bad. I think she is realising how nice it is to be tic free right now, but I think she is aware now how bothersome it is to have tics.

 

Someone recommended Bach's "Rescue Remedy' to me - for anxious periods. Also Boiron 'Quietude' for before bed in the evenings. I will totally try the cantaloupe and limes too.

Good luck and such great news about your sons tics (or lack of them)! Now to figure out the moody/sad stuff!!

I have also heard good things about "Rescue Remedy" but have not yet tried it. Someone also mentioned to me last night the possibility of the moods being part of seasonal shift, the nights getting dark quicker and the cold weather moving in. He had a better night last night, we tried the Natural calm again and epsom bath but he told be after the Natural Calm his tics increased. This bottle was flavoured though lemon/raspberry, we were almost out so my mom picked some up, I'm assuming the flavour is the issue. I'll have to get more unflavoured.

Yes, I have been receiving notes too and even money from him! trying to do some penance for unknown crimes. He is going away with his dad,poppa, uncles and cousin for boys weekend too, so maybe anxious? My husband works shift work so I am their constant and he REALLY loves his mom :wub: Here's to hoping both our kids continue on lesser tics and overcome their anxiety/sadness.

Best wishes, talk soon.

 

Megan

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Bach's Rescue remedy has long been part of our "natural first aid kit" here. It really is an instant calming in a few drops under the tongue. And seems safe for anyone, as long as they can tolerate an alcohol base homeopathic extract of an assortment of flowers :)

 

re the Progressive Multi...good news in that a very nice rep from the company returned my call today and reassured that those natural flavors are truly natural!:lol: so that is good

 

However, for those who have to avoid corn, the fructose is corn derived, and she will be getting back to me re the source of the citric and malic acids.

 

The vit E is Soy derived, so fine unless you have soy sensitivity

 

The lady who called me (and oops sorry I forgot her name *blush*) was really most helpful and forthcoming with info and that which she did not know, she said she would get details and will call back.

 

I also asked about the D-pinitol as I have not heard of that before. She is getting back to me on where it is derived from, but I have done a bit of research and it is in fact a form of INOSITOL! so excellent for those dealing with OCD, and some of the mood issues like depression, anxiety etc

here is some info on it

http://www.nutros.net/nsr-0204s.html

 

here again is the product we are talking about. http://www.progressivenutritional.com/#/kids-multivitamins-overview

and the ingredient list

http://www.progressivenutritional.com/#/kids-multivitamins-ingredients

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