My daughter has tourette's syndrome . . | Lupus Forums at The Lupus Site
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My daughter has tourette's syndrome . .

Discussion in 'Chit Chat' started by Jennannshear, Oct 19, 2009.

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  1. Jennannshear

    Jennannshear Registered

    In 2007 we went through some major changes. My daughter had spinal cord surgery, my son had follicular lymphoma and had surgery.. I had a TVH.. Five surgeries with in six months.. And in between there was much heart ache and much struggling but we made it through.. Its been two years and we’re still picking up the pieces. Of course I struggle with my Lupus and my son is cancer free.. My daughter’s spinal cord surgery went well.. Much better than we expected - two years later and we are just getting back on our feet.. My husband and I were watching tv and we both looked at our daughter who is now 10.. And we looked back at one another in silence.. Our daughter was just diagnosed with Tourette’s Syndrome.. .. I hold back my tears because I refuse for my child to think there is something wrong with her. I refuse for her to see that she is different in any way. We love her.. I searched for answers.. I was seeking out any boards with other parents who were going through this very same or similar experience. I found you all and thought, “there has to be something out there some where..” but sadly I have spent two days seeking out support groups and have not found ANY.. BUT I needed to vent, I needed to cry, to release. Yes she is healthy, no its not going to kill her.. But to watch her, breaks my heart.. So I figured I would write in this forum.. I guess I just need to hear its all going to be ok.. Of course my kids are sick right now and I have a cold and I am not myself .. Emotionally and physically I am drained and when that happens I feel like the world is crashing down around me.. I am sure come tomorrow I will be ok again.
  2. Katharine

    Katharine Registered

  3. Katharine

    Katharine Registered

  4. debatat

    debatat Moderator

    Hi Jenna, :hug: I am so sorry that you have been so much in such a short space of time. It is an awful lot to deal with. I hope the groups that Katherine has given you will be of benefit. Can I just ask is it only tourettes syndrome she has or does she have other symptoms?
    I hope you are managing to get some rest, even though your children are poorly.

    Take care

    Deb x
  5. Jennannshear

    Jennannshear Registered

    Thank you guys.. all of you. How in the world did you find forums?! I had searched and searched.. either way it will help.. so again thank you so much!
    Sammi clicks her neck constantly.. add that on top of her scoliosis and cervical ribs and you have discomfort and pain.. she also twitches her hands.. they turn inwards and move fast.. she makes noises continiously and she smells everything.. everything.. these are all symptoms of her TS. Samantha also has neurogenic bladder and anxiety0panic disorder at bed time.. although that is getting better. Last year she suffered through out school and the school made it worse.. to the point where I was not able to close my eyes with out her panic coming on.. so this year, its a new and better school so the anxiety is much easier now.. She is feeling better flu wise now then she was this morning.. I hope its passing : ) Its time to make dinner but I am going to venture onto those sites after dinner and the yankees game. THANKS again.
  6. keebler

    keebler Moderator


    I know it just breaks a parent's heart to have anything wrong with their children.:hug: You want them to have nothing wrong with them and experience life to the fullest.

    My husband and I went threw all that with our daughter who had CP.
    Candii enjoyed life to the fullest maybe not like we would have but her way. She loved hard and forgave easy.

    You are such special parents to have this angel.:hug:

  7. KarolH

    KarolH Registered

    Boy Jen you and your family have sure had a lot to deal with. I had no idea your daughter was sick nor did I know your son had cancer. I am thankful that your son is doing well now and sure hope that with age your daughter will improve but I must say I dont know anything about Toruette's syndrome either.

    I am glad that you came here to post this and get it out. Keeping this inside must have you crazy, we all need someone to talk to. Do you have a support system at home to help you cope with all of this? A support group and forum is an awesome idea and so happy Katharine could provide a link or two for you.

    Let us know if there is anything we can do to help you in any way. Gentle hugs to you my friend for better days ahead.:wink2:
  8. Jennannshear

    Jennannshear Registered

    Thank you all.. I mean that. I do not normally share my experiences with others.. I find that some people are put off by it all, and some look at me like I have three heads.. sadly it is because those people around me are not "experienced" with the less then finer things in life.. My husband is great.. but he works works works and when he gets home he does play with the kids bc it helps him feel better.. if I complain too much it puts him into distress.. My family, Lord knows I love them are far too into their messes to try to help clean up mine LOL and they do care but can not handle stress so they stray away mostly. His family is NON EXHISTANT .. they are worthless for lack of better words and even though they litterally (sp?) live 15 minutes away our children only see them on holidays.. thats all So with that all said, I normally do not have a great support system.. but I do talk to God or who ever listens in the spirit world from time to time.. usually outside where poor unexpecting people walk by and then cross the street to get away from me LOL I did go on those sites.. one of which was GREAT .. although I have to speak with anyone, we did (my daughter and I) read some amazing stories from other kids her age who go through the SAME thing as she does.. I held back the tears and she smiled.
  9. Jennannshear

    Jennannshear Registered

    When you say CP do you mean Cerebral Palsy? Thank you for sharring with me.. I appreciate it. Its amazing because I look on this site and for months now I post and read other post because Lupus takes up so much of who I am and then I read this or my own post about TS and I think.. " yeah lupus does take up so much of my life, but its not always about lupus.. I am more then lupus.. lupus is just an annoying part of my life.." We all have so much we go through.. My heart is with you too!
  10. KarolH

    KarolH Registered


    When I used to work I worked with severely mentally ill adults and unfortunately when people do not understand something or are not knowledgeable about they turn and run, mostly out of fear. Of course you get those who will stop and stare, not to be rude but simply because it is something different then what they see in their daily lives.

    As for your husbands family being almost non existent, I get it.:lol::lol::lol:
    Your not alone as my husbands family is the same way. Chucks mom was already passed when we met and Chucks dad, who we buried last year spent the first 5 years of our marriage calling me "Katie", my husbands ex wife's name, until I went crazy on him and then he never forgot my name after that.:rotfl:

    You really do have a lot to deal with. Raising kids is hard work, now throw a disability into the mix and it is a whole new ball game. I am hopeful your friends at least give you a break with baby sitting so you and your husband can get out or at least are there when you need to talk and vent. I am also happy that the forum you have found may provide some support and insight from other moms dealing with the same thing.

    Keep your chin up and take each day as it comes. It is a gift we are given.:wink2:
  11. debatat

    debatat Moderator

    Jenna, you really do have your hands full. Sometimes family or friends don't understand. Our children are precious to us always, sometimes more so because of difficulties. Lupus is a big part of our lives, but we all have other things to deal with as well. Keep going, you are doing so well.

    Deb x
  12. keebler

    keebler Moderator

    Hi Jenna,

    Yes, Candii had cerebral palsy. She was total care, wheelchair bound.

    That is so true, lupus is just an annoying part of our lives. Our lives are focused around our family not lupus.

    Take care and I hope everyone in your family get well soon!

  13. elle-co

    elle-co Registered


    You are doing a fantastic job and your daughter is so lucky to have you. I hope things become easier for you soon.

    Elle x
  14. ROSJAC

    ROSJAC Registered

    JENNA, Just came across your post. When my grandson was 2 or 3 he would blink his eyes all the time. We blamed it on too many video games. An eye doctor recommended we take him to a specialist in Indianapolis. That doctor said he could not find anything serious, but thought Chris should wear sun glasses and tint car windows. He still continued blinking. Then at around 5, he started making sounds like a chipmonk( we thought it was cute, not realizing he could not help himself from making the noise.) When he started school he would constantly tap his pencil and make throaty noises(the teachers would discipline him for this) Finally our family Dr. suggested he see a nero.. He had tests and was DX. with Tourettes. He was put on medication but still had to work hard at holding in the sounds. He did not want his teachers to know and when he was in the fifth grade the teacher punished him for his noises and made him stand in front of the class.and he began to cry. We told him we could no longer keep his secret and had to explain to his teachers that he could not help himself. Chris just turned 18 and entered college this fall. He out grew the tourettes and we are so very grateful. I pray your daughter will do the same. Never give up hope Best wishes , Rosie
    wolf1 likes this.
  15. Barbs21

    Barbs21 Registered


    Hi Jenna, so sorry to hear about the difficult times you are experiencing. You sound like a very determined and positive person, and I'm sure Samantha is very lucky to have such an amazing mum!!! I worked with sick children, and one particular little boy became like my own child, his family (parents) are amazing people, when J died, I stayed close to them, and they have another daughter with the same condition. When I would say to people about J and others like him, the response was usually, "maybe they would be better off if they werent here " They didnt understand that their quality of life was still good, and they cant see what we see. The grandparents on mothers side are fantastic, but live in Denmark. The other g parents do not understand the situation, and bury their heads in the sand. These people miss out on so much, you and I know this, and so do others who care,and live with, or work with these children/adults. Your daughter will cope, because she has you!!! You will cope because you have her!!! i wish you well, dont olet others deter you from being who you are, I hope you find some help on the websites given. Take care x:)
  16. granny weatherwax

    granny weatherwax Registered

    Hey Jenna

    I am so sorry you and your family have has such a rough road to travel just lately..

    I might be remembering this wrong so forgive me if I am, but there was a spot on the news about two different people with tourettes, one was a teenage boy who has helped himself by rapping, he writes his own stuff too if you have a look at this link...

    The other chap I think was in his 20's or 30's maybe and is a classical pianist (I think his symptoms were mainly ticks) and has no symptoms whilst playing, and has learned to control his tourettes that way. I suppose you have to find your own way of coping but thought these two stories might help you find a light at the end of your tunnel.

  17. Jennannshear

    Jennannshear Registered

    Every one.. thank you~

    Oh boy.. been feeling really good lately.. not fatigued as bad.. wake up feeling good and by mid day I take a nap.. that helps. I have been lightly walking and dancing to music.. taking the days as they come and being thankful every night that I feel this good. BUT the whole time I have carried such a sadness for my daughter. She started ticking her legs (mostly right side) and now her entire arm.. usually one right after the other. She came home the other day crying.. I was doing ok because I knew she was .. until she cried.. I could not stop myself from crying.. I just smiled at her and said "this too shall pass" and we hugged.. As an adult those words can comfort me because I have been through enough to know .. but she is onlu 10 .. luckily she knows me enough to know I would not lie to her. I read all yoru posts and just released my tears.. its something I know that she will grow out of but that I also know will last a little longer and its difficult to watch her. . . luckily she has some wonderful friends who do not seem to even notice the noise or movements.. and for that I am so grateful.. I just wish I could see past them too.. maybe in time right LOL

    I just wanted to add that I did post on a few sites but have not really received any info. I actually searched on one site that was offered and found a newsletter called "that darn tic" and Sam loves it..
  18. Pink Pearl

    Pink Pearl Registered

    Hi Jenn,
    I am very sorry you are battling all this at one time. Sle can be enough, not to add in a child who is battling her own issues, and you are involved there too.

    Since you are in the US, check out the NIH web: Their literature is free in the US so hopefully they will have some good info. They were among the first to publish info on admitting that the brain could be involved in sle. They put out a book on "lupus for nurses" which is one of the best publications out on all the "isms" that sle can cause. Their standard purple & gold lupus booklet is a much better publication than what the LFA puts out. Our local LFA chapter uses that instead of the small LFA booklet as handouts at health fairs, etc. [for the sle pages add gov/niams/ after nih.]

    When I was teaching skiing, I had a student with tourette's. It didn't cause problems to affect his ability to ski. He was a bit embarassed to have to explain it to me, but once I guessed what he had as he was describing it, he relaxed. The "isms" of it didn't scare me off, as he was afraid it might. We dealt with the "now" not the "possible." I had also taught the blind & visually impaired and competed with them on a national level. So, working with tourette's was not any issue for me. The school director queried me about it later, and was a bit concerned for the student that he might be upset about explaining it to me. Not a problem.

    I hope for your daughter that she develops the means to be able to explain it and that people around her don't view it as a serious problem. If the people in charge can move beyond it, then she will be able to follow their lead.

    One of my doctors told me early on in my journey with sle, that "just because you have lupus, does not mean that lupus has to have you." This can also be said for your daughter. Tourettes does not have to define who she is.
  19. Jennannshear

    Jennannshear Registered

    Thank you.. I mean that. Its been a long weekend.. my cough came back and my daughter is not feeling well.. she has her neurologist app in Rochester on the 4th.. wish us luck
  20. debatat

    debatat Moderator

    Jenna, I hope the appt goes well. Let us know how you get on.
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