Child with Possible Tourette Syndrome

Just so you know this is a genetic disorder. I have a sorority sister that has it along with her 2 brothers. Her mom is the one that got the Americans with Disabilities Act passed. So if you have any more kids they could have it too. There is medication that she can take to help keep the tics under control, but they will more then likely just be less not go away totally.

Hi, I am a teacher of first and second grade with a degree in special education. And I'm a mom! First, you should definatly tell your daughter's teacher. She/he will need to know what is going on and you may need to educate him/her about TS. You want to be sure that she is not getting into trouble for things she cannot control and that the adults at the school are willing to find ways to help your daughter.

If her symptoms are affecting her social relationships at school, then it should be addressed with the whole class. You may want to be there so you can help explain it to the kids. Kids can be mean, but they can also be extremely open and understanding and accepting if the adults give them the chance. Keeping it hidden is not going to work because it's not hidden anyways. Have a condition that has a name and that other people are known to have and have dealt with is much better than people just deciding your daughter is "weird". You should definately talk with her closest friends and their families.

Your daughter is young so she cannot advocate for herself, but she will need to learn how. It's great that she talks to you and has been open to you about how she feels. Let her know it's okay and it's going to be okay. Everyone, everyone has things they struggle with and have to work on. For some kids it is really really hard to learn to read. For other kids it's really really hard to sit still. For other kids it's really really hard to run and jump and play sports. We all have strengths and struggles. This is her struggle, but it is just one little thing about her. It does not define who she is as a person. Make sure her teacher sees it this way too!

I wouldn't tell her that you are going to handle it for her because she is going to have to be an active participant in dealing with this. And you can't fix it for her. Tell her you are going to work together and help her.

Seek out support groups.

Finally, look at Mel Levine's books. He writes about kids with learning differences, but his ideas and approach could work for any kinds of children's (and adult's) struggles. He is an amazing advocate for kids.

Good luck! It is going to be okay!

Dianne

Hi A.,

I hope I can help! My mother has Tourette's Syndrome, so I have grown up with the condition. (I am now 30 and 5 months pregnant with my first child.) Two things I wanted to mention to you: First, it is really important to get her diagnosed and treated as soon as possible. There is medication and behaviorial therapy that can help her with her symptoms, and give her the self-confidence she really needs in school and social activities. (For severe cases neuro-surgery might be an option as well). Don't try to hide it from her. She apparently is aware that she is different from her classmates. Instead of making her worry about what's wrong, explain to her what Tourette's is, and what you as family, are going to do together to make her feel better. Knowing what is going on will certainly help her self-esteem. Understand that if it is actually Tourette's, your child will not grow out of it. It is a neurological condition that is permanent. However; there is certainly treatment that can lessen the symptoms significantly. When you receive an official diagnosis, you should certainly let her teachers know. They can help explain to other students that your daughter isn't weird or dangerous, that she has a condition that makes her a little different, but just as smart and special as other students. You also don't want her to get in trouble for movements or vocalizations that she cannot control. Second: Tourette's doesn't have to be a devastating diagnosis. Many people with Tourette's are living normal, full lives. It doesn't affect intelligence at all; it just hampers control of muscle and sometimes verbal function. My mother, who started showing symptoms at 6 years old is married with children, and went to college (where she met my dad) and then to graduate school. She just retired after 30+ years in education. Unfortunately, she wasn't diagnosed until she was in her 30's, so she suffered needlessly without treatment or support. She has always said that if she knew as a child what her condition was, she would have felt much less anxiety, and would have known how to explain it to others who asked questions. She now takes 1 pill daily for tics, and is relatively tic free. I hope this helps a little. Please see a specialist, or let me know if I can answer any questions about having a family member with the condition. Best of luck!!

Hi A.,

There is a fabulous neurologist that is doing some cutting edge work with brain balancing therapy. I would highly recommend that you attend one of his lectures to find out if he can help your daughter. My son (5 1/2) it only a third of the way through his program and has made outstanding improvements. Since you mentioned that your husband works in the city - I'm assuming it's NYC. Dr. Melillo has 2 centers in NY - Rockville Ctr - ###-###-#### and Ronkonkoma - ###-###-####. Good Luck, and let me know how it turns out.

Best,
D. T.

Hi A.,
I am a nurse and work from a holistic paradigm. There is a phenomenal man named John Carroll in New York, he has healing abilites and great nutrition resources. His number is ###-###-####. Homeopathy is also an option - constitutional work may be needed for your daughter - there is DR Paul Bahder in Skillman, NJ.
Wishes you the best, C.

Hello, I know nothing about Tourette Syndrome but wanted to let you know that as a child I had a sever learning problem which was not diagn. until I was in the 6th grade. As a yound kid I knew there was something wrong with me and had issues being social because of that. I was not told why I so going through so many tests but once I was told that there was something wrong and there were ways to deal with it my life changed. I was happy because I no longer felt like I was in the dark by myself. Your girl my only be 7 but she probably needs confirmation that it she is not alone and that you are looking at ways to help her once you can figure out what is wrong.

I have a 16 mth old girl with Turners Syndrome and at this point only close family and care givers know. Her Syndrome is not as obvious and we are going to wait until she is old enough to start to understand she is different and then allow her to tell people if she chooses. She had heart surgey the day after she was born so we told these people in case she has to go to the hospital.

Hi ~ My name is L. and you can email me privately if you would like. I am the Mother of 6 amzing children! My 11 year old Zachary has a tic disorder as well. We absolutely love his neurologist! He is amazing. Great with Zach! Zachs tick is most pronounced when his anxiety is up, change in a routine, tired. Most kids so more ticks during those times. At home we do not mention it, not to say we have not had conversations about it, as we most certainly have. We have watched a movie with the family that explains it very well. I believe HBO puts it out? We felt that the more we focused on it the worse he became. I did not bring it up at school right away. I let it happen naturally, as part of conversation. I did not need them to focus on that, instead of just him. We chosse not to medicate as well. Unless it is a very pronounced tick that is highly consistent and truly interfers(sp?), then we did not find it necessary. Most children tend to outgrow this like seizures. There is a great group for resource called the Tourette Syndrome Association. I will have to look for the link, sorry. There is so much to say and I do not wish to overwhelm you. Please feel free to contact me. At ____@____.com Best of luck!!!!
L.

Please make sure you see a very good pediatric neurologist. I had the same experience with my son at the age of 7 (2nd grade). The first doctor I saw told me he had tourettes and walked out of the room. I was so scared. The 2nd doctor my pediatrician recommended was wonderful. It ended up being ADHD and not tourettes. Some of the symptons can be the same. Tourettes is like cancer, you can't have it a little bit. Make sure she has all the symptons and not just some. It might be something else. My son made animal sounds that he couldn't control and some motions with his hands, not signs I thought were associated with ADHD but are. He is now 12 and has outgrown it. A good teacher and good doctor make all the difference. Good luck.

Y.

Dear A.,

We have a 12 year old son with Tourette syndrome. He developed his first tic when he was three years old. I thought he was seizing because his head was jerking rapidly to on side, but he was fully alert. We were told he had a benign childhood tic and it would go away over time. It did. Then at age 6 he started turning his head to one side while he was reading, keeping his eyes focused. We took him to an eye doctor who said everything was fine. When new tics developed we took him to a pediatric neurologist who told us he was on the Tourettes spectrum. Since he didn't have vocal tics at the time he was not diagnosed with Tourettes. At age 8 he all of a sudden started "he he"ing. I kept telling him to stop thinking he had picked up a bad habit. That evening we saw the neurologist at a graduation party for my niece and he said it was a tic, thereby giving him full blown Tourettes. To be diagnosed with actual Tourette syndrome you must waxing and waning and changing vocal and motor tics over time.

I was devastated! It was very hard to accept the fact that your beloved child has a chronic "condition". We of course, did a lot of reading and research on Tourettes.

Since our son himself never seemed to be bothered by the Tics we didn't talk to him about it right away. We simply ignored them. His tics were generally minor enough that most people didn't recognize them as tics and his playmates seemed not to notice them at all. However, having the diagnosis eventually helped me understand things about my son. He has had significant behavior issues since he was tiny, like an explosive personality, rages, extreme tactile sensitivity ect, Once I recognized he had Tourettes I understood these other issue as comorbid conditions, not my poor parenting. This was actually very relieving and we have been able to adapt our parenting style to meet his needs more effectively.

After we learned more about Tourettes ourselves, we did talk to our son, and our other three younger children, about it. He already knew he had tics so took the diagnosis in his stride. I think since he already knew he was different, it was good for him to have an explanation as to why and to understand what his body was doing. He is not one who likes to discuss things. We helped him figure out what to say if people asks why he is making a funny movement. We do tell his teachers and let them know what to expect and what to say if other children notice. He does not need any special services. He does not need medication. We made sure he understood this was not something that would shorten his life or make him sick. Also, tics frequently improve in adulthood. Since our son's tics have never been very disruptive our general advise is to just ignore them. We only tell people who we feel need to know because they may notice a tic and worry about it or ask him to stop (which of course he can't do).

For more information go to www.tsa-usa.org. This is the Tourette Syndrome Association's web site and you will find a wealth of information her for both you and your child. You may even be able to find a support group to attend.

I hope this helps a little. You are not alone.

Sincerely,

C.

My nephew was diagnosed with Tourette Syndrome after exhibiting some tics for over a year or more. He mildly exhibited the behavior for a while but then when the family moved to a new town the syndrome became very aggravated and they became more aware of it and had to deal. I know they read a lot of books and consulted a lot of MDs and communicated what was going on to any relevant people within their community. It was very frustrating and tense for a couple years but he through a lot of patience and understanding, he now exhibits hardly any tics and does NOT need to go on medication. It was hard for him with classmates but I think if the teacher is knowledgeable about what is going on they can help the other children understand. That is all I know but I am watching for signs in my son (he's got some repetitive behaviors). You'll be fine - just remember to try have patience and understanding with your daughter because she will pick up on your stress - her feeling of being comfortable and safe with you is more important than what the neighbors/other school kids think :-) ! Good luck!

If you can, I think it's a good idea to put a child with other "like" children when learning in school. When my brother and i grew up, we both went to private schools. My mom had the German measles when he was born, so he had alot of issues; blind in one eye, deaf in one ear, and he looked a little different. For the years he had in school,the ones he remembers as being good, are the ones where my dad sent him to a school with kids who all had some learning disabilities. At the other schools, the kids ravaged him, tripped him in the hallway, and never let up on teasing him. Hope it helps.. Peace, and love.. L.

I am so sorry that your daughter (as well as you) are having to go through this. My best advice is to be honest with your daughter and help her through it, even it has to involve professional help.

My son has a Congenital Heart defect and is significantly smaller, slower and more immature than other children his age and it shows. The other boys in his class make fun of him, tease him and have even pushed him around (once) - he is only 4 1/2.... I have had a very difficult time with this this year and although my son doesn't quite understand it yet I do tell him that he has a special heart and that he can do anything the other children do but at his own pace.

There is no easy way to deal with the emotions of your child but being up front and honest will only leave the door open for her to come to you in the future if she needs to talk.

Good luck!

Hi A., my name is David. My wife, A., mentioned your info request to me regarding your daughter and Tourette Syndrome. We've been married for eight years and have three boys. I was diagnosed with Tourette Syndrome when I was around six years of age. The year prior to that, Dr.'s still didn't know much about it, and they initially thought it was Epilepsy. The severity of the disorder can vary greatly, mine was somwhere in the middle. I remember going through school, and activities, and playing with friends, and some of the tics I had definitely drew some attention. Kids can certainly be cruel, I'm sure she will get some comments, and have fun made of it; but the love, understanding, and reassurance she can get at home from you, your husband, and the rest of her family is so important, and will help her cope with it and help her through it. I do remember that puberty can be a turning point for a good number of kids with Tourette. Mine got significantly better. When I was younger, 5-15 yrs old, there was no hiding it, it was very apparent. If you met me now and I hadn't told you, I bet you wouldn't even know I had it. Although from living in the same house and spending so much time together, my wife is still able to pick tics out here and there. Your daughter can hold some of her tics in to a certain degree, and she will most likely do this in places where she feels less than comfortable, such as school where she can be embarrased in front of her peers. This is only temporary at best though, and is actually very tiring. It wouldn't suprise me to know that she may be tired after school, or have episodes of increased severity once she's home from school. Once she's comfortable, and doesn't have to worry about being stared at or mimiced. They tried me on a couple of drugs when I was younger to try to lessen the severity, they only helped minimally. Honestly, i'm not privy to the medications they have for Tourette these days, and haven't been on any myself since I was about twelve. I would definitley inform her school, so if needed, certain steps can be taken so it doesn't interfere with her learning. I had a "hall pass" in high school that was always good so I could step out if i needed a few min to myself. I also had resource room for one period, a few times each week, & it was nice to have a little time in a smaller, more understanding setting without so many eyes on you. These are just a couple examples of the things that were offered to me. Today much more is known about Tourette, and more people are aware of it, so I would imagine her school will be understanding of her situation and be willing to help any way they can. I would suggest the same for her Ballet instructors, it can only help to let them know. You can also get in contact with the Tourette Syndrome Association (if you haven't already), they should be able to to provide you with all the recent information you're looking for. I hope you found some of this useful, and i'm sure i haven't gotten all my thoughts down here. If you would like to talk more about this please feel free to write back anytime, whether it be something specific or general. take care and good luck with everything,
David

Is your daughter chewing or consuming any food item that contains aspartame, splenda, or sucralose? If yes, remove it from her diet immediately, starting with the chewing gum. Aspartame has been proven to cause several seizure like symptoms. Google the word and you'll be amazed at what you find out. The food industry is bombarding us with these dangerous chemicals and many people are not aware since sugar is listed before aspartame in ingredients. You may or may not see positive results but at least your daughter will be safe. God's blessings.

Hi A. -

What a difficult time for your family. I know of a young boy in our church who also has Tourettes. He is now a teen and doing well with friends and school. Im not sure what, but he is on a medication to help control the symptoms.

I would check with your doctor to see what is available, do some research on the various medications and see if that will help.

I would encourage you, yes, first to talk with the school, including the councilor, this will help them be aware and to talk with her. The ballet school, again, I would say yes, to the instructor. You dont want them to think she is acting out, and they can help her at times if they are aware. They legally have to keep all medical information private, so that should not be a concern.

Find a few books at the library that talks about the disease and what symptoms are associated. There should even be ones for kids in a format that they can understand to help them know what is going on with their bodies. Helping her to understand that is happening and that it's not her fault will go a far way toward her self-confidence. Also, any achievement that she overcomes will be such a great reward for her, as she accomplished it and overcame the obsticles others didnt have to, which will make her stronger.

Best of Luck

I will do my best to be brief with my response but please feel free to contact me is you want to talk more...my daughter (now 10) was diagnosed with Tourrettes when she was 8. She was having these sort of "muscle spasms" and she had a cough that I blamed on my ex-husband's smoking. I brought her to many doctor for these spasms (we called them growing pains)and the cough. She had x-rays and a allergy tests - the works. We finally went to a neurologist who watched her for 10 minutes, decided she had tourrette's and wanted to put her on a medication which causes high blood pressure among many other issues. Luckily I got a second opinion and was advised that it MAY be a form of tourettes however there is no true test for it. She said if it isn't affecting her daily activities or school work then we should give it some time to see if it fixes itself. My daughter was in the room when both doctors spoke and she was completely aware of the issue. We gave it time and now, 2 years later, she still has twitches sometimes and she still has this awful cough sometimes but we talk about why they are happening and we find it is very much stress related.
On a side note though the school counselor asked me once if she was ok, apparently there was alot of twitching happenning during this time. I told our exprerience and now in her permanant record that she has tourrette's, even though she most likely doesn't. In my opinion, I wouldn't say anything to school or ballet unless you are sure that it is something that will stay with her permanatly. I tried to be brief, didn't work. Sorry! Good luck and as I mentioned, we could talk more about it if you want. I am in Shelton.
J.

A.,
Anytime you have medical information such as what you are going through with your daughter, I believe that it is important for the school to be aware. I am a 2nd grade teacher and would want to be aware of any changes my students are going through, especially a medical one. From what you wrote, your daughter has expressed her feelings of lonliness. The teacher and school nurse should be aware, if not for any other reason, to give additional support. She may not feel so lonely if she knows she has support in school. You may not always be able to spare her from getting hurt but being open about what is going on with your daughter (based on my classroom experience with primary aged students), can be helpful. I have also learned that the earlier classmates are properly educated about issues, the more understanding, caring, supportive, and helpful they are. Also, as a mom I would want the school to be informed of any medical changes. Hope this helps and best of luck to you and your family.

J. O.

I know of wonderful students who have been diagnosed with Tourette's. They basically are doing fine in school. For some of these students,there have been formal 504 Accommodation meetings with the parents, teachers, school psychologist to discuss any ways that the children can be supported. As devastating as it is, because you are the parents, it does not have to be for her. I would speak with your child's teacher first to ascertain if it is affecting any aspect of her learning, skill acquistion, social relationships, etc. It is much better to be open with the school, and they must hold your conversations, etc. to the strictest of confidences. After that conversation with the teacher the two of you might want to contact the school psychologist. If the Tourette's is adversely affecting her learning, etc. the school might want to look into accommodations for her, i.e. support within the classroom, counseling, extended time for assignments/tests (if there is impact on her skill acquistion)or it is in some way impeding her learning, etc. In order to be informed, find out about the American with Disabilities Act, IDEA and 504 which is a way to accommodate for the children that need it. This is not necessarily a special education issue, but an accommodation issue~only if she needs it and would benefit from it. Is she on medication? If so, the school nurse may need to know. It can be mild and you may just need to watch her, since she is so young.

Hi A., I am a special education teacher with experience with three different cases of children with Tourettes or tic disorders. In my experience, it is best to discuss this with your child and inform all parties involved to help your child start to understand what is going on and to teach understanding to those around her. HBO did a wonderful documentary called "I have Tourettes" if you can't get it, e-mail me and I will send it to you, I show it to teachers so they can understand what the kids are going through, it would be helpful for your daughter to see others going through this. Hope this helps! Bets of Luck, E.

A.,
My godson was diagnosed with the same syndrome. His mom sends him to a....ready? A chiropractor and MOST of his tics as well as some of the sounds he made has disappeared. I don't know the severity of your child but I just wanted to share an option that has worked for him! Good luck and God Bless.

Hi A.,
Have you tried to totally eliminate all the toxic chemicals out of your home? If not, I would start with eliminating bleach. Check the web for toxic connections with Tourette's Syndrome, especially the EPA.
Check out my website: LiveTotalWellness.com/L.
I wish you and your family the best.
L.

A.,

I will talk to my cousin about her son as he has developed the same thing - tics and Tourette. She said he tries so hard to control it all day in school which is torture because it's like not scratching an itch for 7 hours or sneezing when you really have to. She swears by the internet and has done endless research there.

I wish you the best.

L.

I also have a child with a tic disorder. She is 12 and my first born, I have two younger children. When my daughter was young she use to roll her nose fast and blink her eyes a lot, her pediatrician attributed it to allergies. So this went on for years but I have to admit it was worse during allergy season. About a year and a half ago I noticed she was doing other involentary movements, it was driving me nuts. They say don't draw any attention to it but it was breaking my heart since she just started middle school and she was an honor roll student and it was getting hard for her to concentrate. I met with her guidance counselor and her teachers just to make them aware, because it could have been mistaken for her making faces at them or just bad behavior. The meeting went well and believe it or not one of the teachers also had a son with a tic disorder. After being on numerous websites and reading everything I could and changing her diet which was too hard, we decided to have the neurologist put her on a medication. It is only 1mg and believe it or not I think it is helping. They say that alot is brought on by stress and fatigue. I notice that when she is tired or stressed it does come out more but I think the medication is keeping it at bay. We may try to take her off it in the summer when school is out. Good luck!

I know with being in the health field you may find this difficult to digest, but I know of children who have Tourette's and have been completely helped and some symptom from an amazing chiropractor in Totowa. His name is Dr. Mike Fitzgerald and I cannot say enough great things about him. He changed my life and my children's lives and he is unbelievable. Good luck.