New and a little overwhelmed...

Jessica - posted on 01/14/2009 ( 8 moms have responded )

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My son is 5 and was diagnosed last spring with tourettes. His tics are "mild" enough that he isn't on meds but they are noticable enough that now his 2 year old brother immitates him and people will ask what my 5 year old is doing. They are all facial tics and sometimes can interfere with eating. I'm just kind of lost as to what I should do/where I should go from here??

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Deanna - posted on 02/04/2009

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My youngest likes to copy his brother's tics and even worse set him off with some of his more complex tics. Keep it simple when answering people if they notice your child's tics. Really it is unnecessary to provide more than a "He has TS" remark and go about your business. If it is someone that is closer of course you should give more of an explanation but if it is just a person in the grocery don't worry.

Lindsay - posted on 01/30/2009

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My biggest advice is to ignore them & to "pretend" they don't exist for now. He's a little boy & its a big concept for both he & his little brother to understand for now. My oldest son, E, was diagnosed @ age 5. His little brother will come to understand it and care for him as much as you do. The more emphasis you draw to it, (the tics) the more attention they will require. Meanwhile, find a neurologist & persue some course of treatment

Dana - posted on 01/28/2009

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My son is 8 and was diagnosed 2 yrs ago.  His tics have been quite noticable also but the severity comes and goes. At his worst he had 4 tics at the same time, now he only has 2. I had him on a medication breifly at one time when this was all new to me but it did nothing. Then we found a new doctor that is great and shares the same belief that I do, not to medicate unless it becomes so severe that it interferes with his learning and ability to make and keep friends. The only thing I give Matthew is an omega-3 fish oil supplement made for kids. Other Moms on this site have tried it so I did too. Let me tell you...it works wonders for my son!!!! It works so well that even he notices it. He said to me the other day "look Mom, I don't do this anymore!" (and he moved his head the way he used to do. It use to be so bad he would get headaches everyday).  Keep a positive attitude. I know how lost you feel. I felt lost too. I didn't know of anyone else in our community or school with TS that's why I started this community group. I hope you find the help and support you need! Check out the other conversation links also, there's alot of good advice on here from other Moms going through the same thing as you.  Just remember that your son will pick up clues from you on how to handle this. You are his role model. I've treated my son just as I would my other two kids. He has a positive attitude and it usually doesn't bother him. I also encourage him to talk to me about it when he needs to. Hang in there! Very cute picture by the way!

Jessica - posted on 01/27/2009

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Thank you... we actually go tothe neurologist/tic clinic again (down at Children's) on Feb 13th for another evaluation and discuss the upcoming kindergarten issues. I'll let you all know!!

User - posted on 01/26/2009

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Hi,



First of all forget other people (most people just don't get it)



Get a good childrens neurologist.



My son is almost 18 we have delt with it since age 5.  Age 7 was when we finally got that diag. He has other issues also.



Also litterally with Tourettes you have to take it 1 day at a time, I will pray for you as well as as all others. (my son does take meds for it, for him his did get worse......but not all do) Always here if you have any ?'s ..might not have answers, but I do know the overwelming feeling.



God Bless you and your family

Kimberly - posted on 01/18/2009

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My daughter has alot of little tics that change but most noticeable are the stuttering, the "warping sound" in her throat, and this drumming for lack of a better work that she will do with her fingers---almost in a ringing fashion.  She too will have worse symptoms with excitement, in trouble, tired, or really anything that would stress her --ie colds etc.  I was told that having the IEP will help get the services she needs to keep her on target esp if she is going to have trouble developmentally and that early intervention was key to helping minimize her frustration and ours really in how to deal with all these things.  It certainly can't hurt for you to push to have your son evaluated further.  Honestly, it was left up to me to make all the calls and get all the info put together with the county.  I am not sure if your state or county is different but in our area it is called Early intervention for 4/5yr olds although I think it is Head Start in the county over but really it means the same thing.  Contact the county or even your school district and ask about early intervention options and services and see what is available to you.  Your doctor can help but really I found more info from friends who have disabled kids (not tourettes), from my hospital's social work department, and the county office.  You are your child's best advocate and if you get everything done before he hits school and in place.....just less for you to have to deal with when they go in my opinion.  All they can do is turn you down.  I might have more info after Thurs when we have the IEP eval mtg and are given the IEP plan.  Oh--my child too has been dx with OCD, Developmental delays esp fine motor and social/emotional and maybe Aspbergers but that isn't for sure yet.  It is overwhelming and we are still getting around being called special needs child or disabled and all that labelling.  I also have been told and read that puberty can be a worsening time for tics and also have heard that sometimes much lessen by the time they are in the 20s but really we can't control that and can just help them to deal with things as it comes.  Faith has had much less self-esteem issues that we have started talking more about things and left her tell us how she feels about thing and reassure her that we love her no matter what and that she isn't anything bad.  This age can be so hard to explain what is going on.  Faith knows that her brain tells her throat to get stuck when she stutters and make her warping sounds, etc.  Her speech therapist was really happy with her understanding of her condition and saw a great improvement in her speech from the first eval and her level of comfort. 

Jessica - posted on 01/18/2009

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The problem is, we did have a complete psych and neuro evaluation and we really didn't get far beyond that he has mild tourettes. His tics are all in his face-- opening his mouth repetedly, hard blinking over and over, clearing his throat, and his newest is turning his head and looking out the side of his eyes. They are not too bad on a lazy at-home day but if he is excited, anxious, getting in trouble, or having a lot of fun, they become extremely noticable. I am frustrated because I feel like we were brushd off and told to "ignore them, most yound tourette children stop showing symptoms by 4th grade." The problem is, his uncle had tics as a kid and still has them once in a while and he is 22. I don't even know if they will give him an IEP for next year when he starts kindergarten but he does show some OCD and ADHD symptoms with his diagnosis. Do you think it is worth my while to jump through the hoops to push for more from the docs?

Kimberly - posted on 01/17/2009

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Jessica,



I will get back to you more on this but a quick note.  We too were recently diagnosed with Tourette's on my now 5yr old after complete workup to rule out seizures and possible stroke.  The neuro doc and our peds doc suggested contacting the county and having a complete assessment done and applying for medical assistance.  I am not sure if this is state dependant but due to a loop hole in the write ups---children with disabilities can qualify for medical assistance no matter what the parents' income is.  We had insurance for my children but now have the MA as a 2nd insurance which is picking up what my primary is refusing----ie speech therapy.  It is alot of paperwork and things including mtgs and evals but well worth it.  We have an appt to go over the results with the county and for them to give us a IEP (plan that the therapists,docs, and when she goes to school in the fall to follow).  I can give you more details later then but I really need to get to bed for work in the morning.  I just saw that no one had responded to you and I know how overwhelming it feels going through all this. =)  Start there---contact your doc for recommendations on Neurology and depending on his symptoms----ie my daughter has stuttering moderate to severe as one of her tics...will depend on what therapies if any are needed.  Contact the county ---should be able to find a website for info and if unsure----contact your local hospital as for social work and ask for info on how you can get your child started on both MA and getting complete evaluation with the county for IEP.  That is where I would start.  Hope it helps. Kim=)

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