Tics and neurofibromatosis. Any Connection?

[Guest Liz]

My 9 year old son has a grimacing facial tic. He had an eye blinking problem several years ago and also a lip licking habit last year which has all evolved into this grimacing tic. We've had several deaths in the family recently so I assumed it was insecurity until he had a physical this week and the doctor found Cafe' Au Lait birthmarks on his leg which the Doctor says along with the tic could be Neurofibromatosis. Has anyone ever heard of this or can anyone be of any help. I was reading some of your other posts and will try a vitamin supplement for him. The family doc is sending us to a neurologist. It is a bit unerving in itself. Any advice would be welcome. Thanks. Liz

[Claire]

Hi Liz,

 

I had never heard of it so I just did a quick search and this is what I found:

http://www.wrongdiagnosis.com/n/neurofibro..._1/symptoms.htm

 

List of symptoms of Neurofibromatosis-1: The list of symptoms mentioned in various sources for Neurofibromatosis-1 includes:

 

Many symptoms are those from the tumor complications

Neurofibromas

Skin abnormalities

Brown skin spots ************[asterisks are mine]

Freckle-like spots

Cafe au lait spots

Soft painless skin lumps

Multiple skin lumps ranging from a few to thousands

Bone symptoms

Bone abnormalities

Bone deformities

Nerve symptoms ***[maybe this is why he worries about the tic]

Epilepsy

Progressive vision loss

Hearing disturbances

Balance disorders

Sensation disorders

Paresthesias

Spinal tumors

Brain tumors

CNS tumors

Tumors

Symptoms of Neurofibromatosis-1: In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or chil with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. 1

 

 

They don't mention tics, but they mention tumors on nerves, which I guess he thinks could cause tics.

 

Anyway, it sounds like your doctor is being super cautious. Tics are common in kids (about 20% get them at some point). But you know, I think he is smart to rule out the 'worst case scenario'. My son's GP wanted to do a CTScan when he had tics from computer to rule out a tumor. I read later that tumors are rare with tics. However, I think he is good to be cautious if the cafe au lait spots merit a further look.

 

Good luck and I will say a prayer that it all works well out for your son and that your mind is put to rest quickly. Please keep us posted. If it is 'just tics', we have plenty of ideas that can help. M

 

Claire

[Claire]

Liz,

 

I think you just sent me an email, which I would be happy to answer, but you need to register at the forum for me to respond.

 

I can give you some response here--really this is best as others will chime in and you will get better feedback that way. My own recommendation? Call one of the MDs on the list provided on this forum, and explain your situation and your doctor's comment on possible Neurofibromatosis.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

I say MD specifically because of your concerns that there may be a more complicated condition. They will instruct you --possibly even over the phone--as to whether you should indeed get a screening from the neurologist first. Or you could go to the neurologist first before consulting with them on the tics. I would probably want to rule out neurofibrmoatosis first (assuming this is a simple thing to do), and then I would go to the doctors on the list.

 

Most of us on this board are avoiding using drugs for tics and have had successes with other methods. But this cafe-au-lait birthmark combination, though it may well be coincidental, puts this a bit out of my level of understanding.

 

Supplementation isn't as simple as adding some vitamins and it solves the problem--in my opinion. There is trial and error on what works best. From my other posts, you can see that I recommend testing if you have the funds. The tests are commonly urine, stool, blood and possibly hair. My son's DAN doctor didn't even need him to come to the appointments after the first one, and the urine and stool tests were done from home.

 

Claire

[Liz]

Thankyou Claire. You have been helpful. I hope to get a grip on this tic before he makes it a part of his life. Do you think he could have any control over it at all. I've tried to reward him if he will try and control it. I wonder if thats just more pressure. HHhmm. Thanks. Liz

[Chemar]

Hi Liz

 

just a very important tip.....

trying to control tics that are being caused by something neurological is NOT a good idea for any length of time.....

 

it can actually lead to an intensification of the tic or some even more alarming reactions!

 

your son may try to please you, or get his reward, but the tension it will cause him internally and emotionally is really just not worth it.

 

whatever is causing the tic...it is probably NOT something your son can help, and it would honestly be better to just let it be rather than to cause him addtional stress in knowing that it needs to be controlled for you.

 

I do hope you find answers soon so that you can start whatever treatment will be helpful

 

all the best to you

Cheri

[Claire]

Hi Liz,

 

Chemar is correct, it is well accepted that parents aren't supposed to ask kids to control the tics. It raises their stress from trying not to release the tics, and they generally fail anyway) --other than for short periods.

 

Usually the process of going through supplements will take time and certainly they won't apply if there is some other major medical issue underlying your son's issue. But if you want to try some fast things for the tics only that don't require a doctor while you wait for the neurologist (not promising they are easy), here they are:

 

1. Pyroluria test in case that is an underlying issue. $40 for the test. http://brain.hastypastry.net/forums/showth...ead.php?t=10944

and/or

2. Have him stop all screen viewing for a week (bribe him or go camping!). No TV/computer/gameboy/big screen movies. This is a big tic trigger for several of our kids. If this turns out to be a trigger for your child, let us know and we will have lots of suggestions (or read the threads here on this).

 

Others will say do food elimination diets or food allergy tests, or remove artificial colors, flavors etc... and I agree--we also do all of those things and more, but these 2 might let you feel that you are taking action and possibly see results right away. I would say to try Bonnie Grimwald's supplements, but I hesitate to suggest any supplements until you rule out the more serious issue.

 

I should note my bias: My son's tics went away 100% with no screen viewing and he now only views an LCD monitor. I doubt it is this simple for most kids, but a number of people here have noticed that makes a big difference for their son to varying degrees. (I think most of us have boys!)

 

Of course my #1 recommendations is to find a doctor on the link in my earlier post and #2 is to read the threads. A good doctor is invaluable and knowledge is power.

 

Claire

 

Claire

[Liz]

The screen viewing sounds logical. When he had the blinking problem a few years ago I had read something about screen viewing and siezures so after I had his eyes checked by a Dr. I just had a bright idea and took the computer away from him for awhile. The blinking stopped. My husband thinks it was because we made him aware of his blinking and would try and make him focus on not blinking when he talked to us. He did stop blinking. We thought we helped him focus. Maybe it was more the absence of the computer screen. Making him focus would be considered trying to control his tic. I will lesson up on the trying to focus idea until I get him checked out at the Dr. He has brothers and they all just bought a great computer game so he is back to watching the screen again. I will limit him. I have many kids but I've never had a child with something like this so even though I am a medical professional I am at a loss. I do appreciate all your advice and hope I can ask more. Liz

[Claire]

Hi Liz,

 

I think many of us new to tics tried the focus/control thing. This is often recommended for childhood 'habits' (vs tics). Really it just makes your child feel guilty for something that they cannot help. Perhaps very minor ticcing could be controlled for a time--Jeff here rarely gets them, but says he can control his. I think it is degree, and he is an adult.

 

Given your positive experience with computer removal in the past, I think the odds just went way up that this is a big factor for your son. It is much easier for us with the screen viewing since we only have one child. Initially, my own child would rather have had tics than not watch computer. This was no longer true once we adjusted our lives. I gave up TV watching so that he didn't feel it was rubbed in his face. Unfortunately, I consult and work on the computer all day long--but he can see that it is work.

 

As for limiting, vs eliminating, Unfortunately for our son, the tics from the computer would last for up to a week, so even intermittent viewing kept the tics going on a chronic basis. So if your son is like mine, then it may take complete elimination for a week to see results, versus just limiting computer. So I am not sure that I even recommend imposing a partial restriction versus waiting for when you can do an elimination. We just took advantage of the fact that his monitor was on the blink and didn't replace it for a while.

 

I found that after eliminating computer completely until his tics were, I could add back in computer play using an LCD monitor, with the brightness turned to about 10% (the difference is not noticeable unless you are comparing directly) and he plays in a well-lit room. He also only plays 'static' games--e.g. no flicker or moving patterns. The whole idea is that light flicker causes an abnormal brain reaction in 8% of the 'normal' (meaning non-epileptic) population. No tests have been done (yet!) to see what this means.

 

I have posted before to others that eliminating screens for a week is NOT the same as taking away screens from your child for good. But knowledge is power and I still think that knowing the true impact of screen and game flicker on your child allows you to make better decisions going forward--especially if you plan to see a neurologist--this is very significant information.

 

You might want to read the thread where others tried this out.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=551

 

Heather saw a big difference, but ultimately went back to allowing some TV. She has been trying to correct some of the core underlying immune issues, and her son is less sensitive now and tics less from it. This is my own goal--since they will have normal CRT TV monitors in his middle school and avoidance is no simple without singling him out. Though I still think not watching a TV program in class is less of an issue in middle school than having constant facial tics, if I do have to make a choice for him. I think he finally agrees with me--he is almost 11 and is more socially aware of fitting in now. But that is our own decision.

 

 

 

Claire

[Liz]

You mentioned something about a tic or just a bad habit. Is there an easy way to tell the difference? My sons neurology appt. is two weeks away and I'm so afraid of having him put on meds if he just has a tendency toward Bad habits...such as blinking....licking his lips ....and grimacing now. Can we simply tell the difference?

[Guest Jeff]

Hi Liz, Speaking as one who tics.... I totally agree with Cheri and Claire - Don't try to force or persuade your son to control the tics - that's too much pressure for anyone - and it would be constant. He may be able to not tic for a short period of time (we're talking seconds); however, the urge would still be there, and he would be in a constant, very difficult internal struggle.

Instead, try to find a way to reduce or eliminate what causes him the "urge" to tic. For us it was artificial colors and flavors. Once we eliminated those, our "urge" or "need" to tic reduced dramatically. Other triggers for us are lack of sleep and too much caffeine.

Good luck. Jeff

[Heather]

Hi,

 

I have been very busy lately so haven't posted but always check in to read messages.

 

Liz, when you mentioned the stress with family deaths it brought to mind yeast issues. Stress can cause terrible havoc on the immune system with intestinal yeast overgrowth.

 

As Claire mentioned, TV is also a trigger for us. I would say my son's main triggers are artificial flavours & colours, corn syrup, MSG, TV and stress. We have recently started the Feingold Diet and it seems to be helping tremendously to stick to the Brand names that they recommend. We even went to see Shrek 2 last weekend with some reaction but it was minimal. All his friends had seen it and both my kids kept bugging us so we gave it a try. Claire, for the TV issue you are lucky to only have one child. My daughter is having a hard time with me limiting the TV so much.

 

As Claire mentioned, we are working on the underlying issues such as yeast and heavy metals with supplements right now. I am hoping it is only a matter of time before he will be able to tolerate the foods that he is sensitive to. He is only 7 so I am thankful that we are starting early before the peer pressure and teasing can cause too many problems. I pray that we will be well on that well to healing before that time.

 

Good luck.

 

Heather

[Liz]

Thanks for all your advice. It has been a relief to know others have experianced this and care to share about it. I'll keep in touch. Liz