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"sensory" issues?


airbucket

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hi Everyone:

 

Hope you all are doing well. Just a question and a little update here. My son, 8, Dx TS, OCD, mild aspergers - we have been on the yeast/dairy free diet and some new supps (probiotics, yeas cleanse, zinc, b6, inositol and taurine) for about 2-3 weeks now. I am seeing my son APPEAR happier, though I am getting weary of constantly trying to track what may be a trigger, a waxing and waning, a food disturbance etc. I can never seem to pinpoint a "cause", but my son has had more tics the past few weeks then normal. Although since we cleaned up diet and added supps as of a few months ago, he is doing better, he is happier and his OCD is less, but the tics are not good, which is strange? As I said i have no clue if this is just a genetic wax/wane im seeing or maybe one of these supplements is affecting the tics? Or perhaps the yeast cleansing we're doing is making things "worse" before they are better? What i did want to ask you all is in any of your kids have sensory issues, particularly the need to rub on others. I dont think this is a tic because he has had this since he was like 2, and he is fully aware and will ask me if he can rub his head on my face or ask me to put my mouth on his ears or eyes and push hard....he has also recently explained that he needs to do this because he just feels like something is ON him! What the heck!? I wonder if it feels like something is crawling under his skin, the way he rubs so hard, and this stopped for a long time, we are just seeing it now again as of the past few weeks, i have to figure out precisely when it may have started.

 

Has anyone seen this? Also of interest to me is that my son came up with candida allergy, which i understand points to an immune disorder? I have taken some books out of the library on autoimmunity and i am becoming very interested in this topic. It seems for some many conditions that our immune systems have been altered somehow and are failing our bodies. I dont even know if I believe in the boundaries that the Dx's set up of this is "autism" and this is "TS" and so on....it all seems ot be a set of varying symptoms that dont belong in our bodies. Nature created perfect bodies, why are these things happening biologically? I wonder if a hundred years ago the incidence of these disorders was high or low and either way, before industrialization if these disorders were then stricly genetic mishaps whereas now we think of them as potentially environmentally triggered?

 

Lots ot think about. Thanks!

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My daughter feels a need to play with my earlobe between two fingers, but mostly if she's tired. And, strangely similarily to your situation, she wants to put her mouth on my earlobe (almost like sucking it), which I pretty much don't let her do (only sometimes she dives in there and gets it for a few seconds). Not sure what's up with this mouth and earlobe thing, but there you go! Actually, I'm sure it's just that my earlobes are strangely irrisistible... my cat and my sister's cat, when they were young, always wanted to snuggle up and suck on my earlobes (I think they missed their mommies). And my daughter tells me my ears "smell good". Hope I'm not making anyone lose their breakfast!

 

Personally, I feel the need to do things fairly evenly on both sides (it's a mild need), so if it stretch one side, I would feel pretty uncomfortable if I don't stretch the other. I know some kids really need pressure to feel calm, so they go under heavy bean-filled blankets for the pressure they provide.

 

I guess I think that it doesn't sound too strange that your son needs/craves a certain feeling/pressure. Maybe he would really like a beany-blanket.

 

Think of the plus side. You get to be super close and snuggly with him, at his request! In ten years, he won't be letting your lips anywhere near his ear :)

 

Now, about the tic increase question...

My first thought is that you just haven't found the ideal supplementation program for him yet. The more I read and learn and observe about this stuff, the more I see the sense in an orthomolecuar approach. Mind you, in the grand scheme of things, I know very little about it. But it just makes sense to me that some of the pathways in the body (like the methylation pathway) could have even just ONE thing that that doesn't function correctly (like one precursor not being able to be converted to the proper neurotransmitter, or what ever. See, I really don't know this stuff cold.) The breakdown could happen anywhere in the pathway. Genetically, the body could be lacking a coenzyme that is needed, or damage could have been done, or whatever.

 

So, it is very difficult for us to know what is needed. Like, is B6 the best choice for my child, or its precursor... what is it... P5P I think??? Well, the answer depends on where the problem happens to be in the child's body. Some people recommend taking both because it will cover both bases.

 

That's just one, not so clearly stated, example. But hopefully you see what I mean. Testing and tweaking might make all the difference in finding the missing link. Good luck!

Calicat

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Testing and tweaking might make all the difference in finding the missing link. Good luck!

Calicat

 

I so agree with that Calicat!

 

I know that my son simply could not take some of the supps that others do well on...it had a very negative effect on him. (example here is B complex, and niacin in any form as a supplement?? )

 

altho I havent delved into the deeper reasons why as so many of you have, I know it must be rooted in his biochemistry somewhere. testing and tweaking was the way we finally were able to come up with what works best for him, and tho I dont always understand the whys, I sure am thankful for the results :)

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My daughter feels a need to play with my earlobe between two fingers, but mostly if she's tired. And, strangely similarily to your situation, she wants to put her mouth on my earlobe (almost like sucking it), which I pretty much don't let her do (only sometimes she dives in there and gets it for a few seconds). Not sure what's up with this mouth and earlobe thing, but there you go! Actually, I'm sure it's just that my earlobes are strangely irrisistible... my cat and my sister's cat, when they were young, always wanted to snuggle up and suck on my earlobes (I think they missed their mommies). And my daughter tells me my ears "smell good". Hope I'm not making anyone lose their breakfast!

 

 

:):)

 

 

 

Faith :)

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airbucket,

I think you mentioned he was doing pretty good before? Was this tic increase since you started the yeast program and the other things that last doctor recommended? I am thinking maybe the aggressive yeast treatment could be stirring things up a little.? What are you using for that? Maybe you could reduce the dose a bit? Did you start all those things at once? Is the tic increase really noticeable, or just more than you think you are used to?

 

Faith

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hi Faith:

 

thank you for your comments and reading my post.

 

The increase is noticeable, even his teacher mentioned it. The increase is as of approximately 2 weeks ago. The newest things have been Zinc Supreme (zinc, b6, taurine), Taurine 500 mg, and Yeast Cleanse which is caprylic acid, grapefruit seed, tea tree and pau d'arco. I have been giving only 1 cap a day although the bottle says to give 3, and he is on yeast free diet as of about 2 weeks now. The priobiotics he has been on since the beginning of Jan, as well as the inositol. I did read that with the yeast detoxing there could be a "die off" period where things get worse, but what would that have to do with tics and this sensory stuff?

 

the sensory stuff is awful - it's something he has always done, but we had not seen it for ages, years even. It is a forceful pushing of his head and a specific need to have his ears touched or to touch his ears to parts of my face. Yet when i try to give him deep pressure he hates it. We went through OT for years with a sensory program and it never helped this stuff. I just didnt think i would see it again.

 

To be honest, I am truly tired of trying to figure out the why's of the tics. Maybe this is just a waxing nothing to do with anything? My son seems the same no matter what, one day is good, the next is not. Maybe there are some kids who just dont have issues with foods and chemicals and stuff. I still could not tell you what one single tic trigger is because the tics are so erratic! They come for a day, go away for 2 months, come back for a week, go away for 3 days, come back - there is no pattern. The only trigger i could possibly mention is the car! No matter what, he tics in the car.

 

I have read a lot about candida and candida allergy lately, but nothing mentions tics as a side effect. The most related side effect it talks about is "irritability". Of course we have only been doing this for about 2 weeks and only been on a healthy diet with vitamins for about a month. However, the amount of tics lately is significantly increased and i do wonder if the Yeast Cleanse or the Zinc Supreme has to do with it. And we have not done a nutrient test yet to determine what if any he is deficient in, so we are not sure if he needs what he is being given, other than the multi vitamin. I just dont know if my son is one who has triggers for his tics, or if they are a solely neurological or brain product.

 

I suppose a little patience on my part wouldnt hurt. :)

 

I am reading what I think is a really great book, "Allergy Free - Reverse underlying causes of allergies with clinically proven alternative therapies" By Konrad Kail ND. Very interesting stuff.

 

Thank you for all your responses. Every bit of info or a new perspective helps. Thank you!!!

 

airbucket,

I think you mentioned he was doing pretty good before? Was this tic increase since you started the yeast program and the other things that last doctor recommended? I am thinking maybe the aggressive yeast treatment could be stirring things up a little.? What are you using for that? Maybe you could reduce the dose a bit? Did you start all those things at once? Is the tic increase really noticeable, or just more than you think you are used to?

 

Faith

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Airbucket,

With this yeast die off, I think the premise is that it releases toxins back through the gut walls, something like that.

 

I'm real curious why he would all of a sudden have those sensory issues that seem to have been gone for a while?

 

I'm not one to believe that every little tic is the result of exactly one thing, just that many of these things (yeast, allergies, food intolerances, chemical sensitivity, nutritional deficiencies, assault of vaccines, etc. etc. etc.) somehow do have some role in the big scheme of things. What they all have in common is they interfere with the strength of the immune system, and so while we may not be able to figure the "one thing" it could be, well, I do think its worth covering all the bases in an attempt to manage the havoc al lthese things could cause, and in our kids, well, we know what that havoc is. I wish I could explain that better, but........

 

As far as being in the car, and he always tics, that is probably just because he is sitting idle at that point, we can't rule that out. I know for myself, when I am settling in a comfortable position say leaning back in bed to watch tv, or even positioning myself behind the wheel to drive, I do let out my little compulsions and movements that I have before I settle down and get comfortable and "feel right". I don't necessarily believe there is something in the air that is causing this, its just because, as I said, its an idle time, a time to settle down, and that may be when you are seeing the tics come out more, when they are trying to transition to an idle state, sitting, watching tv., etc.

 

BUT, that doesn't mean that all we try to do to lessen it will not eventually lessen that urge or tendency. I believe we can manage the tics and behaviors to at least a milder state, and I like to use the word "manage" because that is what I think all the different protocol and interventions do. So if something is flairing and the symptoms are increased, then maybe something is going on, something is getting messed up. There are not real clear cut answers, but we are all learning as much as we can to try what we can to get our kids systems to work as optimally as we can.

 

I don't know if that alll makes any sense, but I hope you get what I mean.

 

If you want, I guess you could take something out that you might suspect, like the zinc or the yeast cleanse and see what happens?

 

Don't know if I helped at all, but I really think it will come together, but it does take a little time.

 

Blessings

Faith

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airbucket,

 

During my 15 yr old sons recent headshaking flair, he had the same head pressure need. It made me think of the autistic kids that will head bang. I had never seen pressure seeking behavior related to that tic. He is also hates it if you rub his leg, back etc. It seems like surface areas are ultra sensitive, but deep pressure is necessary. He can't explain it either. My youngest son has never had any of the pressure seeking stuff. Oldest, only with tic flairs.

 

I have a friend with a 7 year old daughter. She is totally addicted to milk, has reddish purple circles under her eyes, and always had to have her mom's elbow in the back seat with her, in the car. I mean she literally had to drive with her arm sticking in the back seat. She said she hardly went anywhere unless one of the other kids could go, so her daughter could hold someone's elbow in the back seat. This child has no tics.

 

Something that Carolyn N's recent posts on sulfur got me thinking about was hormones and the bodies ability to handle them or their byproducts (not sure if byproducts is exactly the word I'm looking for?). If tic fluctuations are related to hormones at certain points, it would be a difficult thing to "see" any pattern with.

 

This page has some studies relating to hormones and tics. If you search hormones/autism/tics, there are many articles listed.

 

https://answers.google.com/answers/threadview?id=323923

 

Doesn't sound like your son is alone with these behaviors!

 

Also, I'm wondering how much vit B and zinc that you're giving?

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Faith,

 

That was an excellent explanation, very clear. Dont underestimate your talent for explaining things!

 

I get it and I agree, as in, I think its true, but I am left wondering of course. The missing piece is this "thing" which cant be controlled even at the most controlled time, the healthiest times, in other words, even at our kids' best biologically, they still may a tic/have OCD, etc. It doesnt entirely go away. Is this the part that doesnt respond, the brain chemicals? Or a physical abberation in the brain? Is it a gene problem? Will that question ever be answered?

 

Well we have cut out all supplements except the daily vitamin and magnesium, and added melatonin tonite. The melatonin definitely affected him, he was slowed down enough overall to lay down, and he was pretty out of it, but he was also nauseous. He did go right to sleep though. We are going to attempt to track him with a clean slate and finish our testing. Then go from there. I printed your message to remind myself of the bigger picture, thank you!

 

Clara

 

Airbucket,

With this yeast die off, I think the premise is that it releases toxins back through the gut walls, something like that.

 

I'm real curious why he would all of a sudden have those sensory issues that seem to have been gone for a while?

 

I'm not one to believe that every little tic is the result of exactly one thing, just that many of these things (yeast, allergies, food intolerances, chemical sensitivity, nutritional deficiencies, assault of vaccines, etc. etc. etc.) somehow do have some role in the big scheme of things. What they all have in common is they interfere with the strength of the immune system, and so while we may not be able to figure the "one thing" it could be, well, I do think its worth covering all the bases in an attempt to manage the havoc al lthese things could cause, and in our kids, well, we know what that havoc is. I wish I could explain that better, but........

 

As far as being in the car, and he always tics, that is probably just because he is sitting idle at that point, we can't rule that out. I know for myself, when I am settling in a comfortable position say leaning back in bed to watch tv, or even positioning myself behind the wheel to drive, I do let out my little compulsions and movements that I have before I settle down and get comfortable and "feel right". I don't necessarily believe there is something in the air that is causing this, its just because, as I said, its an idle time, a time to settle down, and that may be when you are seeing the tics come out more, when they are trying to transition to an idle state, sitting, watching tv., etc.

 

BUT, that doesn't mean that all we try to do to lessen it will not eventually lessen that urge or tendency. I believe we can manage the tics and behaviors to at least a milder state, and I like to use the word "manage" because that is what I think all the different protocol and interventions do. So if something is flairing and the symptoms are increased, then maybe something is going on, something is getting messed up. There are not real clear cut answers, but we are all learning as much as we can to try what we can to get our kids systems to work as optimally as we can.

 

I don't know if that alll makes any sense, but I hope you get what I mean.

 

If you want, I guess you could take something out that you might suspect, like the zinc or the yeast cleanse and see what happens?

 

Don't know if I helped at all, but I really think it will come together, but it does take a little time.

 

Blessings

Faith

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Kim:

 

Your post really surprised me, I have never heard of another kid doing this, although of course there are. My son also shrinks from certain touching and hugging, and just seems to need his head and ears to be stimulated, and not gently. I am very interested in this article and the point you bring up, thank you. I really want to explore every area of the body's systems, and learn along the way. I am reading about hormones in a book right now, it is eye opening, the complexity of the human body has to be taken into account when treating it. It just amazes me how sensitive the body really is.

 

airbucket,

 

During my 15 yr old sons recent headshaking flair, he had the same head pressure need. It made me think of the autistic kids that will head bang. I had never seen pressure seeking behavior related to that tic. He is also hates it if you rub his leg, back etc. It seems like surface areas are ultra sensitive, but deep pressure is necessary. He can't explain it either. My youngest son has never had any of the pressure seeking stuff. Oldest, only with tic flairs.

 

I have a friend with a 7 year old daughter. She is totally addicted to milk, has reddish purple circles under her eyes, and always had to have her mom's elbow in the back seat with her, in the car. I mean she literally had to drive with her arm sticking in the back seat. She said she hardly went anywhere unless one of the other kids could go, so her daughter could hold someone's elbow in the back seat. This child has no tics.

 

Something that Carolyn N's recent posts on sulfur got me thinking about was hormones and the bodies ability to handle them or their byproducts (not sure if byproducts is exactly the word I'm looking for?). If tic fluctuations are related to hormones at certain points, it would be a difficult thing to "see" any pattern with.

 

This page has some studies relating to hormones and tics. If you search hormones/autism/tics, there are many articles listed.

 

https://answers.google.com/answers/threadview?id=323923

 

Doesn't sound like your son is alone with these behaviors!

 

Also, I'm wondering how much vit B and zinc that you're giving?

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I just wanted to add at OT/PT therapy they use a soft brush and go over the body as a sensory stimulation activity at the beginning of the session. It is often times used with kids who have sensory issues. My son says it feels good.

 

Michele

 

Kim:

 

Your post really surprised me, I have never heard of another kid doing this, although of course there are. My son also shrinks from certain touching and hugging, and just seems to need his head and ears to be stimulated, and not gently. I am very interested in this article and the point you bring up, thank you. I really want to explore every area of the body's systems, and learn along the way. I am reading about hormones in a book right now, it is eye opening, the complexity of the human body has to be taken into account when treating it. It just amazes me how sensitive the body really is.

 

airbucket,

 

During my 15 yr old sons recent headshaking flair, he had the same head pressure need. It made me think of the autistic kids that will head bang. I had never seen pressure seeking behavior related to that tic. He is also hates it if you rub his leg, back etc. It seems like surface areas are ultra sensitive, but deep pressure is necessary. He can't explain it either. My youngest son has never had any of the pressure seeking stuff. Oldest, only with tic flairs.

 

I have a friend with a 7 year old daughter. She is totally addicted to milk, has reddish purple circles under her eyes, and always had to have her mom's elbow in the back seat with her, in the car. I mean she literally had to drive with her arm sticking in the back seat. She said she hardly went anywhere unless one of the other kids could go, so her daughter could hold someone's elbow in the back seat. This child has no tics.

 

Something that Carolyn N's recent posts on sulfur got me thinking about was hormones and the bodies ability to handle them or their byproducts (not sure if byproducts is exactly the word I'm looking for?). If tic fluctuations are related to hormones at certain points, it would be a difficult thing to "see" any pattern with.

 

This page has some studies relating to hormones and tics. If you search hormones/autism/tics, there are many articles listed.

 

https://answers.google.com/answers/threadview?id=323923

 

Doesn't sound like your son is alone with these behaviors!

 

Also, I'm wondering how much vit B and zinc that you're giving?

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Airbucket,

My son (5.5 yrs) also likes to feel pressure on his head. This seems to come and go as often as his tics, but last summer and fall it was pretty consistent. (Right now, he just has a lot of head shaking, but I haven't noticed the banging or need for pressure.) Several months ago, I often found him putting things like books or wooden puzzles against his forehead (banging motions), and he also rubbed his head along the floor while on his hands and knees which landed him in the hospital with staples in the top of his head since he didn't see the corner coming. Poor little guy. He was a head banger as a baby/toddler to the point where he'd often have tiny bruises on his forehead. His dr told me to put a helmet on him. Those were the days when I thought he might have autism, never expecting I'd be dealing with the tics that I am today.

 

I am right there with you in regards to wondering if I will ever find what makes him tic. I think dairy and casein play a large role in some of it as he tested off the charts in his IgG testing, but even with that removed from his diet, he still tics nearly every day, sometimes all day. It is so frustrating. I am wondering if I just need to "let go" and accept that he is going to tic. I read so much here about the successes that people are having and feel that surely I can find out what makes my son tic as well. His triggers come and go and change just like the tics themselves. Lately, he cannot even be in the same room with a tv or computer screen without ticcing constantly. This has never been a problem before. I just don't understand this whole thing... it is such a bizarre "disorder" to try to accept (for me anyway). I think I am struggling with this because my son has both motor and vocal tics that are very noticeable. He is so young and I worry constantly about what his future will be like. One year ago, these worries had never crossed my mind. We had no idea that he was going to start ticcing one day and really never stop. Anyway, I'm sorry to go and on about my own worries, but I just wanted to let you know that I understand your thoughts about trying to find those triggers. I wonder if I ever will find them all?

 

Thoughts and prayers to you and your kiddo.

tlk

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