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Trying to get my head around this


Lorie
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Hi I'm Lorie and the mom of Baker who is 5. The last 5 months he has been pulling at his eyelids. At first he'd pull his upper lids. Not the lashes but the lids. Not knowing what this was I constantly told him to stop. Then he transitioned to pulling down on the lower lids. Mostly at the corner but when it's really bad he will use both hands to pull down on both lids. I took him to the doc thinking he needed an eye exam. With is 5 minutes she said this is a tic. Ignore it and hope it goes away...and by the way he may have ADHD. I can't tell you how mad I was. Talk about a gut punch. So I freaked out and started researching non stop and also started really watching Baker to see, when, how, and why he was doing this.

 

I have read many of the posts and so many family seem so similar to us. Thinking back some of the signs have been here for a while. Since age two or so he's had some (mild) sensory issues. Food textures really bother him, tags in shirts, hates underware, tight sleeves, won't wear socks. I've just let it go thinking...pick your battles right? And I know a lot of other kids have these issues too. He was a sick little guy with several strep and viral infections. We battled yeast infections while in diapers and once he had strep on his bottom..... finally after taking the tonsils out I have a strong healthy child. He started sleeping great behaving great and doing all the normal kids stuff.

 

At age 4 he had a little throat clearing thing that lasted for a couple of months but dissapeared, but shortly after that the eye pulling thing started. He now will also do a little eye roll as if he's got something in his eye. This really only happens while in the car. Other than the above he is really doing great. No problems in school, sits fine for story time is writing his name and is popular with all the children. So I thikn the ADHD comment was a bit off base at least for now. In fact his teacher say he never does the eye pulling thing at school. They have never noticed anything abnormal. This weekend we went to an arcade and it was one of the scariest things I've seen. Baker began pulling so hard at both eyes, pulling at his shirt and almost in a daze. Getting his attention was nearly impossible. He was aggitated and not himself. We left and he went back to normal, a few pulls here and there. So I experimented two more times this week. Once with the Leapster and once with a PBS cartoon calleou. Both times he began pulling and could not stop, it was constant, and both times when I turned off the screen is slowed down. So I know TV is a trigger. By the way in the last 5 months he has watched a ton of TV. I know bad mommy but it's been winter and we all got hooked. It was a babysitter for me while I got house work and such done.

 

So we are screen free this week to see if it makes a difference. I have also taken him off of Gluten, egg and dairy. He's taking Source of life Omega and also multi-vit. I'm also giving calcium lactate and magnesium. But I need a better form. I need a kids one. I don't have the dose right and it tastes awful so tomorrow I'll hit the Natures Market. So far day three and no change, infact today was bad. He was moody and pulled at his eyes at least once every minute or two.

 

Where I am confused is that his tic does not sound like anything I've heard of. He acts like his eyes are just bugging him like crazy, but he does not really seem bothered. He will pull at the eye with his hand, finger, two fingers, two eyes two fingers. It's not always the same. Is this a tic? i just wonder if it's some type of eye muscle twitch we can't see. He has told me if feels like a wiggle or drums in his eyes....but who knows, this kid has a crazy immagination. I do know if he hears me talking about it he will do it more...ugh.

 

We see the regular doc again on May 12th....I need to give him a little talking to! I've made an appointment for a Naturopathic on the 18th. I've also made an appoinment with a childrens opthimologist (sp?) to rule out any eye condition.

 

If there is anything else I'm missing I'd love to hear from you. I have never been so confused and overwhelmed. I figured we'd just start somewhere and take it day by day.

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Lori,

 

Sorry you have to be here, but welcome. I just wanted to share that I have seen vidoe of kids doing what you are describing. My youngest son has done a little of that (oldest has never had any eye rolling, pulling). He said that he felt like he "needed to air his eyes out." I think he may have a feeling of dry eyes at times. His earliest symptoms were eye tics and gasping at the end of sentences along with "loss of ability/desire" to eat foods he had always eaten regularly. He still has an extremely limited diet. Tics are minimal, fairly infrequent bouts would not be noticable to anyone except someone very familiar with ticcy kids.

 

I'm glad that you found this forum while your son is so young. You have a real advantage there.

Have you been able to correlate increase in symptoms with seasonal allergies (if he has any that you know of) viral or bacterial illness, vaccination, diet, anything other than screens?

 

Sounds like you're off to a good start!

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Thanks Kim,

 

I've been keeping track of all food this week and anytime I see him tic. Trying to see if there is any link. The last two nights it's been worse during story time. Maybe he's just tired or maybe there is something in his room irritating him. He's had plenty of mild colds this year and a pretty bad intestional virus a couple of months back. I'm going to add a probiotic on a daily basis as well. Today I found a really yummy calcium magnesium source. It's Bluenonnet liquid. A good dose in a smal amount and mixes well with juice. Shelia Rogers book came today so I will pour through it tonight. Funny but I've had an awful eye TWITCh for three days straight. I'm having sympathy for my little guy....a maybe a wee bit of stress too. Anyhow, just so thankful I found this forum and yes that we are dealing with this early. I'm hopfull that we don't see more serious symptoms and we can figure this out.

 

BTW - he's due for his final MMR vaccine next week. And will need it for Kindergarten next year. I'm thinking of holding off for a bit while we get this under control. Why add more to the mix...any thoughts on that?

 

Lorie

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Lorie,

 

I don't want to advise any parent regarding vaccination. However, after doing your research, whatever your decision is, I do feel comfortable saying NEVER vaccinate when your child is sick and NEVER have multiples to "catch up." (And kindergarden doesn't start until September -- so there's plenty of time.)

 

My son's tic disorder surfaced THREE DAYS after his DTaP booster.

 

Oh, and that story-time ticcing -- that's common. A lot of kids tic during stories/tv. My theory is that their bodies are required to settle down and stop moving; so the tics surface.

 

I'd get him some good sunglasses for the car too. Whether he's ticcing or not, sounds like your boy has very sensitive eyes.

 

What state do you live in?

 

ps. Baker is an adorable name. I've never heard it before.

 

Tami

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Hi Lorie,

 

I'm just wondering if your son could be PANDAS (esp. with the hx of strep). Did his behavior temporarily get better after he got his tonsils out? That happens with a lot of PANDAS kids. ....but the improvement doesn't usually seem to last long. It wouldn't hurt to do a throat culture to make sure he isn't carrying strep now (although a negative throat culture doesn't mean 100% there is no strep hiding out elsewhere...eg sinuses).

 

I should also add that there is a mom (Shaesmom) who just posted on the PANDAS forum about eye problems.

 

In addition, lots of PANDAS kids experience sensory problems...tags, socks etc. Mine sure did.

 

Even if you don't think it's PANDAS, it would be a good idea to track illnesses, do throat cultures if symtpoms worsen, and also track response to antibiotics.

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You can get his blood checked to see if he even needs the 2nd MMR. I was NOT aware of this and after 9 shots in one visit my daughters tics also surfaced.

I would and will NEVER vaccinate my child again. I urge you to do all the research you can before making the decision to add the MMR.

Thats the one that alot of people question......

 

Goodluck to you and I hope you find the answers and solutions that work best for your son. Its a long road and extremely frustrating and overwhleming. This board is a godsend.

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Great information from everyone! Thank you SO much!! I will look into PANDAS for sure. Baker is penicillin sensitive as are both my Mom and I. Bad rash!! Baker had this reaction just this year with an ear infection. His ENT that did the tonsils seemed concerned Baker was a carrier for Strep and was eager to get them out. I really didn't ask what that meant. Now I'm really wondering. I need to make a list of possible tests so we can limit the pokes.....

MMR resistance

Panda - strep

Mineral defiencies?

 

I'm thinking maybe an enviornmental doc may be helpful. Surely I can find one here in Seattle. I got through half of the Shelia Rogers book. WOW, very good at helping me understand this.

 

Someone asked about his name. Baker is named after Mt. Baker here in Washington just north or Seattle. So far he's the only Baker we've come across.

 

 

Lorie

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here's some a thread on strep carriers and PANDAS... http://www.latitudes.org/forums/index.php?showtopic=4536

 

re abs...lots of PANDAS kids do well on Azith...my dd is on 250mg/day prophylactially. It gets intracellular strep and is immune-modulating/anti-inflammatory. Good luck and post on the PANDAS forum if you want to know more about strep or PANDAS!

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Lorie,

 

My dd has been complaining that it feels like she has something in her one eye. She comments about it daily and can tell me the exact day that it started. Friday she started complaining that her vision was blurry in that same eye. We plan on making an appt with an Opth. next week.

 

We haven't received an official diagnose of PANDAS but I have contacted Dr. K who stated that it was "VERY likely" and Diana Pohlman felt that it was definitely PANDAS.

 

Sam

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I just remembered something I read....I will try to find it and add a link if I am able to.

Anyway it stated that rubbing or trying to pull at the eye was a sign of Vitamin E deficiency.

Just wondering if you got blood work?

 

Not saying that this is your problem, just wanted to let you know about it.

 

Hopefully things are better now

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