First Visit with Neurologist

[lkaanda]

After a couple years of wondering we finally called to make an appointment with a neurologist to see if our 6 year old son has tourettes. Most of his syptoms have been mild but they seem to be changing lately and coming a little more often. The first available appt. is in February 2005, so I am trying to do as much research as I can in the mean time. I was wondering if anyone who has been to the neurologist could give me an idea of what the first visit is like and what tests they may do that day. I would appreciate any help you can give me. Thank you.

[Chemar]

Hi and welcome

 

That is a very long wait for a neurologist!

 

I know there are very good neuros around and that they are usually very accurate in diagnosis.

there are no single tests that they preform...rather they diagnose by observation and questioning.

 

A good developmental pediatrician is often an excellent alternative to a neurol;ogist, as long as you dont suspect seizures.

 

My real caution with regards to neuros would be to avoid their suggestion to medicate immediately. There are so many excellent alternatives available.

 

I apologise for the shortness of this reply, but I am in an exceedingly busy phase with my oldest son leaving for his freshman year at a distant college next week and so am dashing in and out continuously.

 

I hope others who have seen neurologists will add their experiences here.

Also, have you had a look at the sticky thread at the top of this forum on finding medical help? Those doctors take a more natural approach and there may well be specialists in yopur area that you could visit ahead of time who can begin to set you on the right path to helping your child.

 

all the best, and please stay in touch. It is so very important to have a support group where you can vent, and learn and share.

[Gina]

ikaanda,

 

It is good to see the Neurologist but from my experience there really wasn't anything that they told me that I didn't already know. Basically they said your son has tourettes and we can medicate if you want to.

 

I left there kind of feeling like it was a waste of my time. I knew from the beginning that I was not going to take the route of medicating. I still to this day don't know why I felt that way. I was not against medicating in the past for other issues nor had I ever tried vit/herbs etc. to help anything else. I guess it was just instinct. But my son was finally officially diagnosed. Which in an odd way was a good thing. There were no tests done at all. There isn't a TS test for diagnosis that I have heard of. The Dr. observed and talked to my son and us and that was it. That was 3 years ago and I have not had him back since.

 

Your lucky you found this site first, get as much info as you can befor your apt. and talk to the Dr. about what you have heard about and see what he thinks. He might be able to refer you to someone that has the same views as you. Or he will look at you like your wierd but, either way you can find out if this Dr. will work for you and your son.

[Claire]

Hi Ikaanda,

 

Most of us on this board had better luck with doctors dealing with underlying health than with neurologist. As Gina said, I was told that the neurologist would ask questions and observe--there are no tests to run, unless as Chemar says, epileptic seizures are an issue. Then they say you can medicate or not.

 

If you are looking for help assessing where your child fits on the tic spectrum while you wait for your appointment, here is an article I recently found:

http://www.latitudes.org/forums/index.php?...p?showtopic=743

 

I posted another one on a thread with more info--if you will look in our archives here.

 

As Chemar and Gina alluded to, I strongly recommend using your waiting time to go to one of the doctors at the thread at the top of the forum. They deal with diagnostic tests to see if something can be done to alleviate the tics (e.g. elevated metals/mercury, yeast issues, food sensitivities).

 

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

 

Your child is so young that you can more easily make diet changes now than later, should foods (e.g. wheat, milk, corn, soy...) be a trigger. For many artificial colors/flavors trigger tics. For some, TV/Computers/gameboys trigger tics and eliminating them for a week will let you know if this is true for your child.

 

Unfortunately, neurologists don't seem to look at it from this angle. They tend more to diagnose and medicate. So I encourage you to read these threads and ask questions and take full advantage of these 6 months. Based on some of the successes, it seems that the diagnosis could well be affected and more accurate (more likely if you don't have TS running in your family).

 

Claire

[Guest Guest_lkaanda]

Chemar, Gina, and Claire,

 

Thank you so much for replying so quickly to my question. You all gave me helpful information and much to think about. It sounds like you are all very knowledgable and have done your research on this. I figured the neurologist visit would be just about what you said. Should I still go just to be sure or am I wasting my time? Fortunatly seizures are not an issue with our son.

 

I too do not want to medicate our son. His first sign started when he was younger about 3 years of age. We call it hopping where he sort of paces back and forth and bends at the waist while doing it. We learned over time he has no control over it. He does not do it all the time, mostly at home, but has never stoppped completely. Over the last couple years he had a couple other ticks that seemed to only last a couple days at a time, grimacing, sniffing or rasing his eyebrows. His latest one is a breathing sound he makes as if he is pronouncing how the letter h sounds. This one has been going on for a few days now which is what got us thinking about it again, especially with school starting. We are very nrevous about kids making fun of him, since his 2 year old sister was mimicing him the other night.

 

I did read about the idea of tv, computer and games having and effect and I do believe it seems to get him more excited and makes the hopping and breathing come on a little more. I also thought it said in one of the articles that computer games and sports could do the opposite. I guess it depends on each child.

 

How do you get started if you want to see if it is food or allergies that is causing the trouble? Once school starts next week I am going to try keeping him away from the tv, computer and gameboy which will be hard for him and see if there are any changes. Do you think I should say anything to his kindergarten teacher about what is going on or see how it goes? He went through 2 years of preschool and the teacher either did not see anything or never metnioned it. I think when he is busy at school and playing with his friends he does not have time for hopping around, but I think the breathing sounds will still be there, although he does have long breaks where he does not do either.

 

Thank you again for any information and advice it is very much appreciated.

[Claire]

Ikaanda,

 

I see no harm in keeping the appointment with the neurologist at this point. You can decide as you get closer to the appointment if it is warranted or not. I absolutely personally believe that the doctors at the top of this list will help more, but you need to do what you are comfortable with, and since you can't predict 6 months out, I would keep it. Minimally, if your child has Tourette's, having a doctor's note or diagnosis may help you get accommodations and understanding in school. I do think that some chronic tic syndromes can be misdiagnosed though.

 

As you said with the computer games, it is absolutely quite individual, but enough people on this board saw a major difference that I personally think it merits evaluating for a child--especially if you have noticed any correlation. For some kids who don't even tic during the computer games at all due to intense focus on the game, they can still have a cumulative and lingering reaction from it, so the only way to be sure is to do 'no screens'. Another 'easy', non-invasive thing to try is to avoid artificial additives, though you might wish to do this a different week so that you know which one is the bigger trigger.

 

Yes, I would speak with your son's teacher. 1) She is going to need to be patient and understanding if your son 'fidgets', and not criticize or punish him. 2) if you do the no screens for a week, she will need to cooperate. For some, even intermittent exposure is enough to have a lingering impact --e.g. for some kids you need to completely avoid any exposure for the week. Even having the monitor on in the room where the child is watching other kids play on it and/or the child sits facing the computer with a screen saver and 'zones' into it during the day while the teacher talks can have an impact--I am not exaggerating some children's sensivitity. Easy enough for them to turn the screen off (not the computer) when they are not using it, or angle the monitor a little bit.

 

If it is the TV/computer is your child's biggest trigger, in some ways you will be lucky. Your child is so young--they adapt so much more easily at that age to such a change if you modify his viewing habits or introduce LCD monitors and find they are okay. And if no TV does greatly reduce his tics, then you have a greater luxury of time to investigate underlying issues to hopefully 'heal' him before computer becomes a fundamental part of his education environment.

 

If you truly do a no screens week, can please let us know how that goes? Either way, it will help future posters do have a better idea of impact. For example, Heather, efgh, jean, jenniferM, Ronnas (and Laurie in NY and Tessa on Braintalk) noticed a difference, but Carmon saw none. Others like Jeff have found solutions that are totally unrelated (e.g. for Jeff it was the artificial additives that were night and day). We peel the onion one layer at a time--and we each have our own onion!

 

Claire

[Gina]

Ikaanda,

 

I agree with Claire. You should keep your apt. with the Neurologist for the sake of having your son officially diagnosed. I also believe you should inform your sons teacher. When my son was in Kinder he had a throat clearing tic (we did not know at the time that it was TS) and the teacher kept getting annoyed with him and sending him to get a drink of water to help clear his throat. My son was getting annoyed back at the teacher and couldn't figure out why she kept making him drink water when he wasn't thirsty. I believe it is very important for all that are involved to an extreme in your sons life such as teachers, principals, coaches, family members etc. to be aware so they don't address the tics with your son which I think can only make it worse on the child to have to try and explain it. My son is 9 and going in 4th grade and I have addressed it with each of his teachers from first grade on and all of them have appreciated that I informed them of my sons tics and about TS in general.

 

Hang in there,

Gina

[Andy]

Hi, my name is Andy and my son was diagnoised with TS at 4 years of age. My wife and I had noticed tic behavior when he was 2 years of age. The first tics were blinking eyes and bushing his hand across his eye even if no hair was present. Today he is 5 years of age and he exhibits blinking, throat noises, hand waving, stiffing of arms, and sometimes staring out into space. Nightmares are common as well. There is no family history of TS and I wonder if this may have been caused by vaccination shots or perhaps a linging infection. He has been to three Neurologists. The third one was recommended to us from Latitutudes. The first neurologist said he would outgrow it and he just is a smart boy who is overloading his mind, the second started to speak of medicating, the third had him tested for food allegies and he is allergic to gluten, rice, corn, soy, sugar, milk and a few other things. We saw marked improvement in his functioning and behavior when we elimated those foods and foods that contain them. In additon my son was found to have not enough amino acids, minerals and vitamins in his body. Since then we started a doctor supervised supplement system. This agian decreased the frequency and severity of the tics. We also saw limiting TV to 1/2 hr at a time and less then 2hrs a week as being helpful with controling the tics. I researched the drugs that are used for TS and in my view it is a sin to give that strong of treatment that was not designed to treat TS and does not have great results. That was why I walked out of the second neurologists office. The natural treatments that I mention above have made a world of difference for my son. We also added other things, when he had relapses, which asked I would go into detail. The bottom line is my son still has tics but except for the reading tics, no one usually notices. It has taken us 2 years to get to this point it might take you less if you research the past messages on this web page. We are considering having a metals test for my son to try to get to the root cause. Of course, I get nervous just typing this for everything is so nice now. He is even taking Karate. But I suspect a detoxing program may be needed. Best wishes for your son.