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Update and some Questions on my son whos eyes were rolling side to sid


Newtothis

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It has been 3 weeks since my son first started having really bad side to side eye rolls. This is an update and I have questions for you all. This site has been very helpful for us and we are very thankful for finding this site. My original post is http://www.latitudes.org/forums/index.php?showtopic=2866

 

Anyway, he had slowed down dramatically (the eye rolls) after altering his diet, cutting back to whole foods. Having him take good multiple vitamin, an adrenal stress vitamin with lots of B's and some adrenal polypeptide fractions and betane, l-tyrosine (whatever all that does I don't know) Grape seed extract, magnesium, CLA, and Omega 3 pills. In addition we did a RAST allergy test through his pediatrician. Everything came back fine. However, we feel as though carbs, like wheat bread and breads in general, seem to make his eyes roll or tic more. So, we have cut them out for now the best we can. Lots of change in his diet has been hard on him. After all, it is Christmas time, the time of all the yummy simple carbs. His school teacher noticed a difference in him. She said he seemed like a happier boy, loving school again.

 

We also cut his computer time down to 10 mins in the morning, and 20 mins at night, with very little TV. Much better than his habit before (baby steps). It is hard to try and redirect his energy and focus on other things, but we are trying. In addition, we have been having him nap, which he hates, but is now getting used to it at 2:00 pm, for at least 30 mins. This seems to really refresh him.

 

OK, so today, Christmas.... for us lots of video games, and plenty of excitement. By @ 4 o'clock his eyes were rolling pretty good and in fact at about 8 o'clock they seemed to roll up for the first time that I had seen (like a mini seizure). His diet today was very good, no simple sugars, no carbs, all the vitamins. But, lots of visual stimulation, the whole day.

 

My questions are: Is this a good indicator that TV is the main trigger? Or the stress of focussing on the games themselves? Could it be the diet, too?

 

Also, we meet the pediatric neurologist in 2 days, what are some good questions to ask? For sure I want to ask about TS, but also about things such as Absence Seizures, some form of hypoxia (low oxygen levels), vitamin deficiency's (which has not been tested for), metal levels in his body, EEG's and biofeedback. I would very much appreciate some good feedback on what to ask. Thank you very much for all your help once again. -Matt

 

P.S. Have any of you used a D.A.N. doctor?

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Hi Matt

yes, photosensitivity can be a major tic trigger, but so is excitement or stress of any kind

 

it is hard to advise on questions as there are so many and because sadly most conventional docs, including neuros, tend to scorn what is so clearly evident from all the anecdotal evidence here and on other self help forums...........that tics can be triggered by so many external and internal factors. I would be sure to compile a list of things that YOU have questions on, and based on what you have read on the board here about various triggers and ailments that can increase tics

 

 

Most of us here have used either Integrative, environmental or DAN doctors, along with naturopaths and homeopaths

 

I hope your appt goes well and that you have an enlightened neuro.

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Matt,

First of all, congrats on all your success. I am very happy for you that you have found some things that are working well.

I just want to jot down two thoughts that occurred to me when I read your post.

 

In addition we did a RAST allergy test through his pediatrician. Everything came back fine. However, we feel as though carbs, like wheat bread and breads in general, seem to make his eyes roll or tic more. So, we have cut them out for now the best we can. Lots of change in his diet has been hard on him. After all, it is Christmas time, the time of all the yummy simple carbs. His school teacher noticed a difference in him. She said he seemed like a happier boy, loving school again.

 

We also cut his computer time down to 10 mins in the morning, and 20 mins at night, with very little TV. Much better than his habit before (baby steps). It is hard to try and redirect his energy and focus on other things, but we are trying. In addition, we have been having him nap, which he hates, but is now getting used to it at 2:00 pm, for at least 30 mins. This seems to really refresh him.

 

OK, so today, Christmas.... for us lots of video games, and plenty of excitement. By @ 4 o'clock his eyes were rolling pretty good and in fact at about 8 o'clock they seemed to roll up for the first time that I had seen (like a mini seizure). His diet today was very good, no simple sugars, no carbs, all the vitamins. But, lots of visual stimulation, the whole day. -Matt

1. I want to quickly mention that the rast testing has typically not been as useful for some of us as a white blood cell delayed intolerance test such as the Alcat. Just keep this in the back of your mind if you feel that food seems to be a trigger after all.

2. We believe that gluten intolerance played a big role in our son's ticcing and that a Gluten free diet has really helped his recovery. I want to throw this out there as you mentioned taking the breads out of his diet. Being gluten free takes it to a higher level as gluten is hidden in many foods as fillers. (I did some research and learned that gluten intolerance can cause neurological damage.)

3. Screen sensitivity may be due to pyroluria (but not necessarily). In our case our son tested positive for pyroluria and with vitamin treatment and gluten free diet his symptoms lessened to the point that light sensitivity is not an issue anymore. This is not the 'cure' for every case. Some parents have used other methods and not all kids with tics suffer from pyroluria (a specific vitamin/mineral deficiency that requires zinc and B6 supps.) In our case we believe that the zinc/B6 deficiency was directly related to the high amounts of gluten in our son's diet prior to and during the initial waxing period of his symptoms. Dr. Woody McGinnis, who I have been in contact with, has been writing a book on mauve factor (pyroluria) and has learned that there is a very strong gut/brain connection. Any person suffering from pyroluria needs to look at diet, specifically gluten intolerance, but not limited to just that.

4. For some kids excitement alone can cause tics. In our case it appears to be diet related. With the gluten free diet and treatment for pyroluria we have not seen any screen sensitivity. He had a gluten free holiday and did not suffer any increase in tics even though he had received several very 'highly stimulating' gifts and spent a good deal of time playing a new electronic game.

 

Hope this gives you something to grasp at. You may or may not find it useful.

Caryn

http://healthy-family.org

P.S. I second Chemar's comment on the neuro. We did not get any satisfaction there. Ours said diet does not play a role and that tics are transient and will go away on their own if we ignored them. If not, we were told to come back in six months for a prescription. Thanks, but no thanks. We got so much more help for our son right here on latitudes and also from a few very friendly celiac forums and helpful docs we met through Pfeiffer Center and via the internet.

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Hi Matt,

 

My son now 14, started out with the eye rolling tic. He was around 8 or 9, it did come and go so I didn't know they were tics. When he turned 12 every thing went haywire, and the eye tics were bad. However, when we changed his diet the eye tics were the first tics to go away. (I think it took about 4 months) The only eye tic we see now is he will look up, but that hardly ever happends anymore. We also noticed an arm tic went away with the diet. That one only comes back if he watches TV, and that too does not happen very much.

 

I do feel the diet has helped so much that he is able to enjoy the TV now with few tics.

 

Good luck with the diet I believe in it.

 

CP

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Thank you for your reply. You are the first person I have come in contact with for the eye rolling tic. I am very glad to hear it went well. I went to the ped neurologists today and that visit went well I will be posting how that went on a new topic soon. May I ask how was your sons behavior and diet before the tics came on. In retrospect we think we saw small signs that something was different but did not put anything together until the very scary at first, eye rolls came.

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Matt,

 

Our son was a very good boy, and never had any behavior problems. His diet was what most kids eat, but maybe a bit better because I am a stay at home mom. Our son had no signs of tics at all before the age 8 or 9. He had no vocal tics except for a kissing sound. Now the vocals are the tics we can not get rid of, and are the most bothersome. Those exploded after he had shots shortly after his 12th b-day.

 

Just a little side note that might keep your hopes up. When my son was 9 a little boy down the street (about 5yo) had this eye rolling tic at the same time my son had it. This boy (now 9yo) has no tics at all.

 

I'm glad to hear your Dr visit went well.

 

God Bless

C.P.

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Hi Cum Passes, I am sorry to beat a dead horse as I know I have asked you about diet before yet, a few more questions. What are your diet basics- did you have allergy testing done and eliminate or just clean up the diet? Did you go to an alternative Dr. ever? Is your son still on supplements? What about digestive enzymes? Thanks in advance for all the questions. My mind is just so packed with info these days I have to sort it all out. Glad to hear he is stable and to see you checking in. When I first started on this board and would read I would think- where did these parents go? Did they find success and then stop or give up? I have to say to the newbies out there, I now believe they find success.

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eye rolling was one of my son's earliest tics, 6 years before he was dx with TS. At the time it was attributed to the fact that he had developed vision problems (myopia and astigmatizm) but later, when his TS dx came at age 10, we realized that many things we had noticed since he was tiny were likely tics, including the eye rolling/blinking/side to side movements

 

however, the need for corrective lenses was exagerating the eye tics and when he got his first glasses aged 4, it really did improve the eye tics significantly

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Now that you mention that Chemar, my son got glasses within 4 weeks of the explosion. I never thought that could have helped too.

 

Bmom, he does see an intergrative dr. We just had the spectracell test done again. We compared it to the first one, and he is no longer deficient in B12 or mag. However, I am still giving it to him. She would really like me to get him off vit and have food give him all his vitamins. I'm not ready to take that leap yet. He takes all the vitamins Cal/mag/zinc vit E/selenium B12, B6, mult, plus inosital now.

 

I tried the 5-HTP for a month, but I can't tell if it made things worse or he was just waxing. All I do know is it didn't help at all. I thought I would try the inosital, because I was not sure if the 5-HTP increased his dopamine too. So far he seems to only have the waxing at night or when he comes in from the cold.

 

I have thought about the digestive enzymes, but have not started that yet.

 

He eats organic fruit/veg. and meat. I have not seen an improvement in tics after taking away wheat or milk, so he still eat those. He does not eat soy,corn, rice, deathly allergic to peanut. He does not eat anything in the legume family. I have only done the IGE not the IGG. I have only taken away the food I noticed an incease in tics after they were consumed. We are thinking about the IGG, but to be honest I'm afraid of the out come and don't want to take any more food away from him. He eats all the time. Thank the good Lord he likes fruit/veggies.

 

I hope all is going well with you.

C.P.

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Newtothis,

I was wondering if you have had your visit with the neuro yet? If so, how did things go there? I don't think they will be open to all the testing you would like, but I'd be interested to know what they thought. Also, am I understanding that this eye roll tic has only been around for past month? Has it subsided yet with the changes you made? ... my son is eight and has had an eye blink/wink and I has had a bout of what I call just like looking up into eyebrows. I don't know what exactly seems to help, but that one (the looking up) did not stay too long. He recently had the eye blink starting again around october/november and does seem to be subsiding (fewer and farther between). Right now I am only giving b12/folic acid, probiotics, and magnesium, along with "trying" to limit junk. Do you give probiotics? When was his last vaccine?

 

He also has a vocal which seems to be waning as well, but I do hear it every now and then.

C.P., I know you indicated your son is also waning on the vocal? But it is not as pronounced as it was last year right? Just some lingering sounds here and there? I am wondering if this is the route it takes, lessens and lessens until something sets off the immune system, such as a vaccine? If we don't further insult the system, hopefully and Godwilling that will not trigger any setbacks? ....

 

Thanks

Faith

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HI YA Faith,

 

The vocals are the only tic that clearly waxes and wanes. The other tics seem to be around for a day then go away for a while. I'm thinking the vocals will never go away altogether. My husbands vocals only come out while he is talking to someone. My husband did seem to remember when he was 16 he dipped (tobacco) he said he thought to himself he would never quit because he noticed how much it helped with the tics.

 

He did quit and he does not tic much, so he is wondering when he really out grew it. He almost feels like the dip helped break the (habit) so to speak. Again hubby has no motor tic what so ever.

 

God Bless

C.P.

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thanks c.p.

but he is not "screaming" anymore like you once described, right?... thanks for reminding me, I was going to ask what your husband's sounds like, as I recall you saying you never knew he had ts except thought he was a little loud? Like sometimes ds will say the first sylable of the word a little more pronounced just to get the sound out I guess. The teacher has noted it was way down in class this last month.

 

:)

Faith

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