Oh gosh - hoping someone can help me

[supereen]

Hi all - my name is Eileen, I have a 5-year old son Peter who has recently started having these facial spasms. Took him to his pediatrician who has said he THINKS it looks like Tourettes, however, he needs to be seen and evaluated by a neurologist. My appoinment is on October 13th, and I am sure you can all guess that I am going out of my mind now with the waiting. DOES he have Tourettes??? THAT is the question my husband and I need answered. The fact that we have to sit and watch my son go thru this without knowing for sure what it is is exremely upsetting and frustrating.

 

My question is this: can what he be doing be classified as a Tourette's tic?? I always think of tics as something like your eye throbbing, or a twitch. What Peter is doing is kinda hard to explain. His neck thrusts out, his right eye kinda opens wider, and his mouth opens and quivers. It lasts for about 3 seconds. It happens approx. once every 8 minutes, more frequently when he is tired, hungry or has to have a bowel movement. To us, it looks almost like palsy, but I'm not a doctor and I have no clue.

 

On top of all this, his Kindergarten teacher has given us alot of reasons to think he has Asperger's Syndrome. Upon researching it on the internet, everything we have read describes Pete and his personality to a tee. Can the Tourettes tics, if thats what they are, be related in some way to Asperger's??

 

I am at my wits end - I don't know if I should be keeping him home from school or not until he gets tested, I am so frustrated, sad, hysterical, you name it!, that ANY info, advice, ANYTHING, would be so appreciated!!! Thanks!!!!

[Andy]

Hi, tics can be a secondary issue with Aspergers. I am not a doctor and I do not know your son but what I can tell you is take everything one step at a time. If your son is warm in an affectionate manner or if your son displays a sense of humor then I would say forget about Aspergers. There are other reasons to forget about the Aspergers label as well but those are the two most common behaviors that I see in kids whose parents are told to consider Aspergers but are not. As for school, that is a decision that you have to make. However, if the kindergarten teacher has control of the classroom and does not make your son's behaviors an issue, then usually at that age in a well controlled structured environment, the kids may look but will not make it an issue. My oldest son is 5 years old and we placed him in pre-school at age 3 when he was ticing for we felt that we did not want him to think of the tics as an issue that would interfere with his life. Right now we do not have the tics beat but we do have them under control. Most children go thru a ticing phase however for some children the ticing is more then that. You may want to read about all the positive stories people have on this site and the treatments that they use.. This might help relieve your worry a bit for if what you think is, is..then there are measures that you can do for it. For us everything we do was done after having lab tests under a neurologists care. It is all natural with no drugs and no side affects for our son and it works. However, our current doctor was the fifth doctor and second neurologist that we saw on this matter. So it took awhile before we got to where we are today with treatments.

[Guest Diane]

Hi Eileen

 

I am not a medical expert on TS, but I have lived for seventeen years with a husband and two sons who have TS, and I have done a tremendous amount of research on the subject. I also have a neighbour whose son has Asberger's syndrome. I hope I can give you a little information to make you feel better.

 

One of our son's doctor's is the area "expert" on TS and conditions within the TS spectrum, which include autism (and Asberger's syndrome). I used to ask him all the time "is this a tic? Is that a tic?" whenever my sons would do something repeatedly. He finally looked at me and said that any "meaningless" movement done repetitively, is a tic. I would venture to say that almost 100% of the population has a tic of some kind or another! However, just because you have a tic, does not mean you have Tourette's syndrome. To have TS they must have one or more motor tics AND I believe at least one vocal tic for an extended period of time (I believe it's a year). This "definition" is not cast in stone to make an evaluation of TS, but that's generally what they go by.

 

Your son may have a tic that is transient (meaning that it will eventually go away).

Honestly, Eileen, I was traumatized when I first saw my sons' tics, but when I went in the school to help out, I lost count of the number of children I saw with tics! It is very common. And what Andy says is true - the younger they are, the less they seem to notice other children's tics. That was certainly true in my children's case. It is often harder for the parent to watch than for the children.

 

Secondly, if your son does have Asbergers, based on what I've seen of my neighbour's son, you really would not know too much that there is something "different" about him other than he is mildly withdrawn, and quite shy. He will not look us in the eye when we talk to him. Sometimes he is in his own world. But all the kids on our street don't notice a thing! It is the mildest of the autistic conditions.

I understand your fears, believe me, I do! But I wouldn't say your son has TS from this episode he's displayed, and even if he does have it, there's things you can do

[supereen]

Thank you for the response. He has had the tics everyday - yesterday he started also shaking his head, like "no" alot. It seems he has them most when tired, hungry, has to go to the bathroom, or stressed. The sight of the school bus the other morning had him "ticing" like crazy. This waiting for the neurologist appt is the hard part. I can't stand not knowing for sure what is wrong.

 

I have also been reading the OASIS Asperger book and it sounds alot like Pete. I have been keeping a notebook of all the things I am observing about him.

[Guest Diane]

I have a few suggestions for you. I know how agonizing not knowing is. First I would put aside, for the moment, whether or not your son has Asberger's. I suspect your most immediate concern is dealing with these tics that have surfaced. As regards to your neurologist appointment, you can call them and state that the situation has worsened, and could you been seen earlier or put on a cancellation list. I do this from time to time. The squeaky wheel gets the grease, as they say.

 

Secondly, if you feel your son is being ostracized at school because of his tics (I really think that's unlikely at his young age) then I woudn't think there would be any harm in keeping him home now and then, if his symptoms are bad, to let him relax. Clearly going to school stresses him (as it does many young children) and this naturally worsens his tics. But you may find his tics will subside as he gets used to the school environment.

 

Are you a stay-at-home mom? I decided to be for the sake of my children, we were fortunate financially that we could handle it (although barely sometimes). But what I have done since they have started school (it's been 10 yrs now) is bring them home for lunch. They look forward to that break, they can tic in private, relax, and clear their head. They go back in the afternoon literally refreshed. I know not all parents are able to do this, but it has made a HUGE difference.

 

Lastly I would be very careful what I feed him (try and stay away from drinks or anything with food coloring), avoid sweets unless they have no preservatives, and make healthy dinners. Also I try to keep a quiet, stress-free house. And kiss and cuddle him a lot, affection makes such a difference! Good luck

[supereen]

Thank you Diane. Actually, after watching 60 Minutes tonite (where they did a segment on a couple with Aspergers) and reading the comment above that if your child is affectionate, they probablydon't have Aspergers, I am starting to think he DOESN'T have that. Speaking with his teacher, I am starting to also think of focal seizures. I actually witnessed him "zoning out" for 3 minutes tonite in karate and then suddenly "returning to life" and laughing and participating. It was so weird to see. He really does have alot of the symptoms associated with AS, but again, I don't think thats it.

 

He has gotten much better the last 2 days. He still tics, but its certainly not as frequent. A healthy dinner?? LOL!! My little guy eats peanut butter, mac and butter, and goldfish!! I know he needs to eat healthier but he refuses, and I make sure he gets his daily vitamin. I will speak to the doctor about diet when I see her. We actually got a new appt now - Oct 5th with a ped neuro from NYU. Keeping my fingers crossed and concentraing on the tics only.

 

Yes, I am a SAHM (thank goodness) - I wouldn't be able to work knowing he was like this - I think I'd go out of my mind!! They don't have an "at home" lunch thing here. But its a great idea - and if I needed the exception made, the school system here is fabulous and I am sure they'd be accomodating.

 

Thanks so much for all your advice and words of wisdom. They are appreciated more than you know.

[Claire]

The limited diet you describe is classic ASD child (autism spectrum, including tic syndromes, not necessarily autism or aspergers).

 

This means that food sensitivities and vitamin deficiencies are likely. The book "Children with Starving Brains" discusses this. They tend to crave the very foods causing problems.

 

It is not your failure that causes this diet tendency, it is part of the profile. I strongly recommend either reading the book or trying a gluten-free (wheat) and casein-free (milk) diet for a week. I suspect you will notice a major difference.

 

They have a ton of gluten-free breads. The homebaked versions (e.g. Gluten-free pantry) are awesome.

 

Cheese is tougher. But lots of cracker choices.

 

Claire

[Guest Guest_efgh]

Hi all

 

How can anyone say that his/her TS son has aspergers? what are the prime symptoms?

 

thanks.

[supereen]

Claire, THANK YOU. I will head to the library today. As each day passes, I think less and less that its Aspergers. We're heading to the neuro on Tuesday and hopefully some of my questions will have answers. I will be sure to write about his diet in the journal I am keeping.

[Chemar]

Hi I have been cleaning up after our latest Hurricane and havent been on here much.

Dont know if you can get a copy somewhere but last night's 60minutes show on CBS dealt with Aspergers.

[Andy]

Hi Supereen, I am glad that you are seeing more reasons that your son does not have Asperbers then does. First of all, most people have a few characterics that fall on the Autisum Spectrum at one time or another and here's a shocker, no one is normal. Yes we have a norm that tests are based upon but everyone has their own little thing going on. In the last three years I have seen alot of kids mislabed as being Asperbers. Not being a doctor, I would give them copies of research done and suggest that they see another doctor and guess what, no Asperbers. That does not mean something else may not be going on in some cases but it was never as severe as what was first stated. As for this something else, something is going on in a big way. I have been in the field of Special Education for over 20 years and I have never seen so many SLD, ADD kids or kids who tic before. My oldest son is also 5 like yours and we lived in New York City till he started to show signs. So I wonder if there is a link between our children with either an undetected illness or a bad vaccination shot. As for the tics, they sound alot like some of my son's. Most of his tics are under control with a different diet and with supplements and limited T.V. and computer. Less then 2 hrs a week and no longer then 1/2 hr at a time. However, when he is over tired, sick or over excited, the tics will come for he still has basically some sort of damage inside. We also have our son in Karate and yes he sometimes zones out here and there for its late for him but he's out there with all the rest of the kids having fun and feeling good about himself. My wife and I just had our third child this Monday so I am a little bit in the weeds between work and home but if you or your husband find a need to reach out and talk, you could always e-mail me. I'm not offering for I'm such a great guy, I just remember how my wife and I felt before we were able to find solutions to the issues instead of just watching our son live with the issues and it is a world of difference.

[supereen]

Andy, thank you so much for that message. Each day that goes by, I am more and more sure he DOESN'T have Aspergers, but it makes it frustrating not knowing WHAT it is. Tuesday is our appointment but I have a feeling that not many of our questions will be answered. Can they possibly diagnose him in one visit??

 

Peter has been doing so great the past 2 days, but this morning he woke up and was ticing like crazy. The neck strain, eye popper one that I haven't seen him do in 3 days is back. He did it once or twice and a couple of the head shakings. This is going to sound really stupid, but this kid hasn't had a BM since Sunday! The last time he had the ticcing like this he also hadn't gone to the bathroom in a while. It seems to get worse as the days progress. Could his problems having a BM have ANYTHING to do with this? Just one more question I have!

 

You said yoou limit the video games, and TV time. Is your son totally attached to these things?? I think Peter would die without his Sony!! Not a healthy obsession I'm sure and I know I also need to cut him off of it. I have also placed an order for an autism/diet book. I see alot of people have success with gluten-free diets and modifying their kids diets. I will have to give this a try. What kind of supplements do you use with your son?

 

You have me curious as to when you said "we lived in NYC until he started showing signs". Was the stress of the city bothering him? Were you living right in Manhattan? I guess all the hustle and bustle could be intimidating to a child. We live in New Jersey, and the only person who heads to NYC is my husband who works there. Anyway....

 

Hope to hear from you!!

 

 

Eileen

[Guest Diane]

Hi Eileen

I think your son's not having a BM in three days is probably diet-related (you said lots of peanut butter, mac and cheese, etc.). That will do it! Both my sons, for years, had problems going regularly. I don't believe it is related to their tics at all. But we had to have them sit on the toilet daily, even if they didn't go, to get them back to a regular routine (this was on the advice of a consulting pediatrician we saw, and it worked). If you need any more info in regards to this, let me know.

 

Secondly, and I don't claim to be an expert on Asberger's at all, but based on my neighbor's son's behaviour (which I have been observing for the past 10 years as he has often played with my kids), I've never seen him display affection, he avoids looking anyone in the eye, he will often play by himself even if there are lots of kids around him playing.

 

I agree with Andy that not only do a great proportion of children have tics, but most adults too! Many many tics are benign and unnoticeable.

 

Regarding his diet, you can buy peant butter from the health food store that is only ground peanuts. My husband who has tics did this. It is delicious. And instead of mac and cheese I make pasta from health food store with crushed tomatoes, olive oil, salt and pepper, some garlic. Maybe a little parmesan. They love it. And if you subsitute the "junk" drinks (full of color and sugar) with natural drinks they get used to it and prefer it. It really makes such a difference, but you have to take the step....I know it's hard...

[Chemar]

Hi Eileen

 

not having a BM regularly causes a build up of toxins and this can increase tics and other problems.

 

If you are able to get your child to take Kefir or natural yoghurt that can be very helpful, along with pure (NOT TAP) water.

[Claire]

I agree with Chemar on the BM's. This is key to getting rid of toxins, which can impact tics.

 

Also, yeast overgrowth can cause constipation, and can worsen tics. Certainly straining at the toilet is stressful.

 

Finally, if your son is a 'Sony addict', then I would not be the least surprised if 'no screens' for a week would bring major improvement. Computer games and the flicker of the CRT screens are a major trigger for many of us.

 

If he is so little, then I personally have no issue with the equipment (TV/Computer/playstation) 'not working' for one week. He will never know. I posted before that 9 of 10 people here who tried no screens for a week saw significant improvement.

 

I personally think that the screens 'addiction' that so many have can worsen any symptoms. In fact, there is a condition called photosensitive epilepsy (though rare), where seizures are triggers by the invisible flicker with screens. If he is zoning out for 3 minutes, then there is the possibility of a mini-seizure (I don't know how probable though).

 

I STRONGLY recommend that you try no screens for a week to assess this--maybe the same week you go gluten free. But actually, I think it is a better first step, e.g. potentially faster results. After the week is up, you will know clearly whether it made a difference. No screens completely eliminated tics for 3 kids I know of (my son, Ronnas friend and a braintalk poster), plus helped others.

 

While this is traumatic and restrictive for an older child, at 5 years old it is much easier--if you trade with book tapes and 'time with mom'.

 

The zoning out is worrisome, since what if it happens when he is climbing and he hurts himself? Thus I think it merits trying this out.

 

Also, if this works, you can experiment with more limited time on smaller screen LCD monitors in well-lit rooms. This works for us.

 

My son also had a limited diet, and is now gluten-free and casein-free (except cheese once a week or so), plus he uses an LCD monitor. He is tic-free also.

 

This is a first step--if you read other threads you will read about healing --Andy touched on this. But I suggest this first step to give you the confidence when you enter the neurologist office--that you know what can help your son. Often neurologists suggest drugs, which mask the problem and have side effects.

 

Claire

 

ps If you do gluten free--rice and potatoes 'fill in the cracks'. Tons of alternative breads and snacks out there for this.