Son Has Undiagnosed Tic/body Spasms - Needing Advice/support

It definitely could be Tourette's. My husband, son, and I all 3 have this disorder, and we all have tics. While it is true in some cases that TS is comorbid with other disorders such as OCD and ADD, it is not always the case. Sometimes it really is just the tics, though for most doctors to diagnose it, a child has to show symptoms of both vocal and physical tics. You say your son does a lot of throat clearing and sniffing - these could be vocal tics. My father does this, and has blamed it on allergies his whole life, but I believe he has TS as well.
If it is TS, and I would just keep insisting on testing from doctors and neurologists, trust me when I say it's not the end of the world for your child. My husband and I are both happy, successful people. He was medicated as a child b/c his tics were far more severe. They do interfere with daily life, but only as far as you allow it. My husband has chosen to not tell people at all that he has this, and I've seen people look at him strangely when he's showing a lot of tics. I am for full disclosure. When I meet someone new, I let them know that if I'm "twitchy" or if I make weird noises, it's TS. I believe the more people know about it, the better for all of us. Most people's experience with TS is what they see on TV - barking and shouting obscenities. This is actually pretty rare. TS is very common, and most of the time, you'd never know someone has it.
As far as telling other kids, if you get a diagnosis, I would leave it up to your son on how to explain it. I alway said, "I have Tourette's. Sometimes I twitch." And never make a big deal out of it. Most kids will just say "Okay" and move on. Everyone has some quirk. Also, the more attention we give to the tics, the worse they get. So ignoring them is the best way to help him. What has helped for me is finding something active to do. My tics are less severe when I'm calm, so I do a lot of relaxing activities, like knitting.
Anyway, I know this became really long, but as you can see, TS is something that I have dealt with for 25 years and will touch my life forever. If you want any more information on what it is like living with this disorder, feel free to PM me. And like the others said, just keep insisting on a diagnosis for your son.

Can you see a physical therapist without a referral?
Even if you have to take him to a private clinic? One visit out of pocket might be worth it for peace of mind for you and / or a call to the neurologist....
PT's wind up treating these types of things and generally can figure out what it is and how to deal with it... yes, they usually work on the dr's orders, but they might be able to help your son at least cope until he sees the neurologist. The other thing is that if it is something serious, a call from another medical practitioner often speeds things up tremendously. Good luck!!!!

M.,

Look up Dr. Mark Steinberg at www.marksteinberg.com. Our daughter has ADD and has done neurofeedback. It has helped her tremendously. Tics/Tourette's are listed as something that is helped by neurofeedback. It is the only program we have done with our daughter that has been covered by our insurance. Hope this helps. J.

Hello! I know this entire experience is very scary. My daughter was diagnosed with Tourette's syndrome when she was 2 years old and it started with excessive blinking. I thought she has something in her eye! We were referred to a neurologist who confirmed the diagnosis. What threw us as also was that our daughter did not have OCD or any other disorders associated with Tourette's. However, it can be inherited from people in the family who do have OCD (her uncle). The side effects of the medications the neurologist talked about were too severe and we opted for not taking them (they are really for children who have compulsive loud voices they can't control, swearing, etc). My daughter's tics changed over the years. Sometimes they were in her diaphram and it looked liks she was constantly hiccuping. The sad thing was that they hurt her! Sometimes it was excessive shrugging of her shoulders. I noticed that seasonally they would get worse. In the spring, for whatever reason, they would flare. Sometimes they were compounding tics-two or more motions at the same time. If she was tired, they would also get worse. We got books for her on the subject and when the kids in her class asked about it, she told them it was her tic. They had no idea what this was, seemed satisfied, and never asked for anything further. We were told she would outgrow this and I never believed it. However, she is 13 today, and I just noticed that it has been months since I've seen or heard a tic. I think they might be a thing of the past. This daughter was my first-born, HIGHLY intelligent, very articulate, an A student, and I was convinced this was going to ruin her life. It didn't. Please try not to worry too much.

PS-Keep this OUT of the schools! Your son will be labeled and this will go into his permanent record. I was whispered this early on from her neurologist. If I felt that the tics were really obvious one year, I would let the teacher know casually. That was it! Also-make sure your son gets good sleep and lots of exercise. I made sure my daughter had lots of rest time so she could have her tics and not worry about hiding them. Children can supress them but they then compound later in the day.

i would take him to the nuerologist without an appt. and sit there until they saw him. All the while letting them know how bad he is and he can't wait. I would also call his pediatrician and have him force your son in with the nuerologist. Don't sit and wait, push for your son to get seen. Good luck. (Could it be the medication?)Also if he gets worse take him to the ER and make sure it is not a form of a siezure. some to the things you described sounds like a seizure

Hi M.,

Do not stress to start off with. It may be tourettes.

I am a wellness coach and can share some ideas with you if you are interested.

Let me know.

N. Marie

Rett Syndrome Reversal Summary:

http://www.youtube.com/watch?v=RyAvKGmAElQ&feature=re...

Love, G.. :0)
http://stemcellforautism.blogspot.com/

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport

I know the frustrations of having to wait to see a neurologist. My son was 4 weeks old when he was having some muscle spasms after he would wake from sleep. I kept telling the doctors I thought it was seizures, but since they would only happen out of sleep it was hard for doctors to catch them. I ended up going to the ER. My gut told me that this couldn't wait. Luckily, I went, it was seizures and he was medicated and is now 3 and doing great! Your sons symptoms are different than my sons but my advice would be if you think he's getting worse....listen to what your gut says and take him to the ER if you need to. Unfortunately, you have to be persistant in these cases to be heard and seen. Good Luck!

Who is your medical provider? We are with Kaiser, and when my son went through his undiagnosed medical nightmare, I discovered that you need to be extremely insistent, but you can get results that way. I ended up going into the waiting area and freaking out at the people there, but that's what I needed to do to get my son seen -- and it worked. You need to be VERY pushy, don't let them make you wait for two weeks while you and your child suffer.

What do you tell the other kids? I don't know, just say he's moving a lot these days. A kindergartener doesn't need a lot of explanation. The response you gave was fine. Don't assume the kids will be cruel.

And I completely agree with Kim B. Do not take No for an answer.

Have you considered that it might be Tourette's Syndrome?
http://en.wikipedia.org/wiki/Tourette_syndrome

A friend of mine has it and the symtoms sound familiar. Her husband has it and her son has it. They all have their own particular tics. They have learned to live with them and if this is what is happening to your son then he will too. =)
Things like plenty of sleep and excersize will help, if that is what it is.
As a mother of an Autistic child I can definitely empathize! I would not suggest informing the whole class but I would suggest that the teacher be well informed. I would ask her to keep an eye on him, when there is an issue have her talk to both children and explain to the other child that your son cannot help his tics, to be kind and maybe even help him. Also help your son come up with certain things to say..."Oh, that's just God jerkin my chain again!" "Wow, that spider crawled into my sock!" Or on the serious note..."I can't help it, it is just the way I am...let's play with blocks!"
Kids make fun of things they fear or don't understand. In having the teacher quietly explain it or your son making light of it, his condition no longer is "weird" just different.
Please let us know how it goes! And M., my mom always said the squeaky wheel gets the oil, which means MAKE NOISE! Don't be afraid to call until they get sick of hearing your voice. Be willing to be on hold for 3 hours if need be. The best advocate your son has is YOU. =) Good luck.
H.

Greetings M.: Having 5 children and one of those with a disability and my husband being an amputee. I am also very active with special needs childen. I wanted to answer part of your question.
Children are curious and ask a lot of questions. I don't think they are trying to be mean but just want an answerfor something that they see as different and do not understand. I think that you ought to let the teacher handle it as she/he sounds like the teacher gave a great answer when it came up. When you put to much of yourself and your fears into things it gets hard on the child/person who has the problem. I know that for our son we made sure he knew that the way he is is just fine with us and we are grateful for him. He thinks and acts differently than others and he is shy on top of it. But no matter what is said outside the home he has always known that the people that count are his family and what others say is out of fear-could this happen to me?, out of ignorance or acting stupid because something is different and they don't like that. That is typical for young children.
If on the other hand a child is being mean then the teacher is the perfect one to do something about it.
This may I pray be something that can work itself out and not be serious and life long. Take Care of yourself, Nana G

It sounds like the referral to the neurologist is a good move, although if these "episodes" are already getting worse before they can get you in, I would take him to the emergency room.

What you are describing could be a tic like you have suggested, but it also might be a mild form of a seizure. I've known kids where their seizures would be just staring for a time or having some slight movement.

Without a diagnosis, its hard to say if what he has is life threatening. Personally, I would take him to the emergency room and make them diagnose him -- they may find that it could have waited, but then again it may be something they need to treat right away. Either way, its making your child uncomfortable, so they need to be able to treat him for it.

First of all, I think you are on the right track! Keep making the daily calls to the doctor. Having your son seen by a neurologist is important!
I have 2 kids of my own, worked with kids who have had varying forms of movement disorders and TS. Also have a niece who developed a "tic" symptom involving her facial muscles around the same age as your son. She was taken to the doctor who told us that this sometimes comes up around this age and will disappear. The thought was that it may be anxiety related but maybe not. It was recommended to be as neutral as possible. Try not to bring to much attention to it (this could cause more anxiety). If it is necessary to talk about it be as "matter of fact" as possible. This was hard because my neice has 2 older siblings who love their sister very much but would sometimes giggle or make comments about the funny faces their sister made. We dealt with that by giving them as much info. as possible and also a way of talking about it away from their sister.
The "tic" symptoms moved around and changed a little (went from moving her lips in a funny way to raising and blinking her eyes), and would vary in intensity and frequency over a few years. However, I am happy to say she is now symptom free and absolutely beautiful.
Again, you are on the right track! Just wanted to let you know my story... Best Wishes

I second the recommendation of going to the ER. I had to do that all the time when we were outside of Kaiser because it would take too long to get in for appts. on critical matters. If this came on suddenly, you never know what it could be and I've learned that often there is a small window to correct things. At the very least, going to the ER, you will get bumped up with your appt. with the specialist. I was having complications from eye surgery and couldn't get a referral to an ophthalmologist, so I went to the ER and miraculously I could get the essential appt. ASAP.

Good luck!

Hi Misty, how is your son, did you find anything?

I would seriously bump this up a few levels in urgency. He needs to see a neurologist TODAY who needs to do an MRI this week. Something may be going on that may be reversable now, but may not be reversable if you wait.

Call the neurologist's office and classify this as an emergency. Tell them the spasms have become noticibly worse, and you need to bring him in today. Tell them you want the neurologist to call your insurance and do an immediate request for an MRI approval. If the doctor's office says they won't, tell them you're going to ask them to sign a letter stating that they refused to do it. If the insurance refuses to approve, tell them your only recourse is to go to the emergency room for an MRI.

It may be nothing. But what if it's not? You need to know immediately.

M.,
Our son has ADD and a processing disorder. WE do not tell anyone unless they ask, because kids can be so cruel and unrelenting. I would only address things as they come up, but keep his teacher informed. The school will be no help in a diagnosis with thier psychology dept. They are not allowed to make one. They only do testing that tells you what his brain function is like, meaning what his scores are so far as his IQ. I neurologist is your best bet. I am assuming you are waiting for a referral to come thru? Call and ask the primary cares office if they made the call yet for it. That might be where the hang up is. I wish you luck, and hope that all goes well. DOn't be surprised if you don't get a diagnosis on the first appt. Lots of times they want to do testing first, before a final decision is made.
W. M.

First let me say I am so sorry you and your little boy are going through this. My nephew (who is now 15) has tourettes and was diagnosed probably 4 or so years ago but his mom and dad knew something was wrong for years before that. He blinks a lot and also looks around a lot. Another thing is he looks up and the ceiling like he is rolling his eyes and opens his mouth. He also makes some kind of clicking noise with his mouth although I have never heard it (you have to be right next to him). They put him on medication and had to try a lot of diggeren ones before they found something that worked. He also does have some ocd symptoms but I don't know what they are. I do know that ocd can be hard to see. It is a disorder that sometimes onlu effects the person on the inside. I don't know what to tell you to do til you get a diagnosis but I know my nephew handles his great now. Even when he is having a bad episode he will make a joke about it to lighten the mood and he has become comfortable with himself. As far as his classmates, I think what you're doing is perfect. Only address it when it comes up and try to make it not sound like a big deal so your son doesn't feel worse about it. I wish you the best and hope he will feel better soon

Hi,

Sorry to hear about your son. Having Tics doesn't mean you will have ADHD, OCD and/or ODD. But, having Tics doesn't make your child lack intelligence either.

Children with Tics normally are very bright. Does very well in school and can become very successful in the future.

I would give him a lot of family, friends and community support. Educate everyone around him about his condition. Never let him feel different. Always be there to support him and encourage him to follow his dreams.

Dealing with a child with special needs can be stressful. Have someone to talk to when you feel stressed. You can even talk to him about it as well. But, always make him understand that you love him regardless.

Eventually, he will learn how to control his Tics as he gets older. Sometimes they even disappear through age.

Make sure you follow-up with the neurologist.

If you need more answers and would like to know about clinics that can help you with your child. Visit WWW.WebMD.com. They have resources for your son and you as well.

Hope this helps.

Good luck!!!

Hi Misty,
The 20/20 show on May 22 was about Tourettes. It was very informative, following the lives of a couple of children with severe Tourettes. There is a Tourettes Association. Maybe it would be helpful? I think the channel was CH.10. If you didn't see it, maybe 20/20 has a website that would have some links.
Stress seems to be a real factor with it.My thought also is maybe hormones play a part somewhere. A child that was in the first grade class I volunteer in was diagnosed that year. He had a few problems, and he did blink a lot, but he seemed no different than the other kids.
Good luck with this! You are in my prayers.
M.

Hi, first let me say I'm sorry your family is going through this. We have a similar situation with our 4 year old daughter. Her "tics" or "Typpys" started on April 12th. I agree to some extent with Kim because two weeks is too long. I would try it. We were referred to Sheila Jenkins at CPMC and that office is great! Not sure where you're located but worth checking into. We were told to inform the teachers and otherwise not to make a big deal out of it in front of your son or the other children. He knows whats going on and stress could contribute to his "tics" so chill in front of him. You don't need to tell the other kids in his class anything. You're right kids can be cruel but they can surprise you too. I would leave it alone as long as the teachers and school staff are aware. Just an FYI, we've seen two neurologists in the Dr. Jenkin's office (both great) and docs and peds are hesitant to do MRI's unless it's absolutely necessary because the child typically needs to be sedated for an MRI and eeg. At least this is what we've been told. I can get more specific if you want drop me a private note. Lastly calm down in front of your son. He receptive to what's going on and you need to make him feel as comfortable as possible. I know it's hard! It makes me physically ill but we do what we have to do. Hang in there! Keep me posted.

Hi M.,

This sounds so much like what happened with my son. He also had anxiety, or unreasonable fears, that went along with the tics. We eventually found out that his food sensitivities (not allergies) were part of the problem. Gluten and dairy in particular were huge problems. We worked with a Holistic MD who helped us with his digestive problems, and helped to restore vitamins and minerals he was not absorbing. It took a long time for us to figure all of this out because most conventional docs are not addressing the root cause of tics. I now write about it at Food Sensitivity Journal (.com). I realize this is an old post - I hope he's doing well now.

M..