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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. melissar

    melissar Guest

    Jenna, I don't know much about Tourettes but I can only imagine what you and your family are going through. I will be keeping you all in my thoughts and prayers.
     
  2. Jennannshear

    Jennannshear Registered

    Thank you for all this support.. its amazing. Well we drove over three hours to get there and then were there for a few hours and drove back over three hours.. my joints have taken such a beating.. it was horrible but life happens, right? So the app went as well as it possibly could be.. she has Tourette's and I learned sooooo much just be talking to professionals.. they gave me so many things to read.. was a little overwhelming at first but I am ok. She actually admitted some kids were not so nice about her tics and that broke my heart.. well its Yankee game time and its a family time ordeal : ) Thanks again for allowing me to come on here and talk about "other" issues. :hehe:
     
  3. debatat

    debatat Moderator

    Hi Jenna, I am glad the appt was so useful. I bet you are exhausted after all that travel. I hope the info you have been given will help you and your daughter to cope with and adapt to life with tourettes. Hope you are both ok.

    Big hugs
     
  4. MDaisy

    MDaisy Registered

    I wasn't going to post here but you all have been so kind to me I figured I should return the kindness.

    I've raised two special needs children. One born with mild cerebral palsy and another who is on the autistic spectrum. As with all medical conditions, there will be a lot of changes in diagnoses etc.

    Always document whatever you receive. This will help you get the appropriate education and assistance needed based on your child's medical condition. In the US all children are guaranteed a Free and Appropriate Education (FAPE) and implementing an Individual Educational Plan (IEP) is part of this process. A Behavior Modification Plan (BMP) is also part of this process.

    Be sure to have a report from the doctor (s) stating your child's medical condition. This will help implement the IEP process for a school age child. There are similar plans for preschool children that are administered usually through the school district or Regional Center.

    I do not know a whole lot about TS but I do know there are medications, therapies and things that can be done to assist your child.

    Personally, we found getting a mature student "buddy" to help our daughters through their school day was a big help. The buddy fit in as they were the same age of our daughter's peers.

    For hope I used to work with a reporter who was diagnosed with TS. He was able to research, review and write interviews with the best of them.
     
  5. Jennannshear

    Jennannshear Registered

    Thanks for sharing your own personal experience but for all your advice. Its been difficult these past few days.. I have hit a wall today. I emailed the teacher to make her aware that a student was picking on my daughter.. I kept her home yesterday for many reasons.. Lack of sleep, pain and you name it.. I waited for the teacher to send a response to my email.. I checked many times. I sent her to school this morning.. Feeling unease.. I had hoped that the teacher would have sent an email stating she would take care of it.. But that email did not come.. I thought “maybe she just did not get it yet” SO I waited until lunch and emailed again.. Checking in on how she was doing and then asked if she received the prior email.. She responded quickly.. Said she was doing good and yes she received the email. I cried.. How hard is it respond with a little more emotion?
     
  6. debatat

    debatat Moderator

    Jenna, I can understand your anxiety. The teacher should know you would be worrying and respond quickly to reassure you. I hope your daughter did have a good day at school.

    Thinking of you!!
     
  7. MDaisy

    MDaisy Registered

    I noticed you lived in the US so I know a bit more about disability laws etc.

    You need to set up an IEP evaluation and start the IEP process. The IEP is a binding contract that the school must comply with.

    Be sure to have a report from your doctor (s) document her diagnosis and their recommendations. For example my daughter with cerebral palsy received a formal typed report stating she must have computer access and learn computer skills. This was documented in 1990 just as computers were beginning to be used in the classroom. Thanks to this recommendation the teachers had to comply with the doctor's recommendations. It took some pushing but we were able to finally get her an Alpha Smart which the school district paid for. Later she received computer access when more computers became available.

    Back to the IEP and the BMP, once those things are established then the school and its staff will use it to teach your daughter. You can call and IEP meeting any time you feel your daughter's needs are not being addressed.

    I'll try to find some of the special ed links after Thanksgiving. You can leave me a personal message and I will reply.

    Finally, my newest DX is a fatty liver. I've gone back to eating a low fat diet and will try to lose some more weight. I am the skinniest of my sisters (I have a sister who weighs about 300 pounds) so I don't know how I managed to develop the fatty liver. I do not drink and I have lost close to 30 pounds during the past five years.

    The fatty liver DX still does not explain why my vision went wonky. It could explain my leukopenia/neutropenia espisodes.
     
  8. Jennannshear

    Jennannshear Registered

    Hi, thanks.. Sammi has a 504 plan and we are meeting again to further discuss it on the 4th of Dec. I am taking her advocate with me.. This should be interesting. Today my family is getting together for the holidays.. I will not be there bc my daughters tourettes is getting bad.. every night for about a week it is progressing.. UGH my poor girl and I AM EXHAUSTED bc I am not getting sleep due to the night routines and ocd-anxiety as well as the tics causing her pain.. The doc upped my steroids again but still no relief.. I felt better but its not to the point where I feel good.. I have to wonder if its the demand of being the sole parent who cares for her needs...
     
  9. debatat

    debatat Moderator

    Hi Jenna, do you not get any help with your daughter? It must be exhausting caring for her through the night and day. Is her anxiety increasing due to your family getting together? I know how hard it is to care for a child with these difficulties, you must make sure you get enough rest and have some time for yourself. I know this is easier said than done.

    Thinking of you
     
  10. Jennannshear

    Jennannshear Registered

    Hi - nope.. I am on my own for the most part. My daughter has motor and vocal tics.. her anxiety triggers easily and the ocd is mild at best during the day and moderate at bed time.. her routine is tight and if something goes differently then her expected norm all heck brakes loose. My husband, who has tried many times to be that parent, comes up short because she only wants me.. I am the only one she "needs" .. her pychologist tells me that I have to walk away from her eventually because she needs to cope with out me.. which I agree with and I also look forward to BUT when your child is screaming out of panic and her body is jerking, heart racing and you see and hear the fear how do you turn away? I just can't do it.. Two years ago she has spinal cord surgery, I had a hysterectomy and my son has follicular lymphnode removed.. everything changed then.. and she became dependant on me to pull her through emotional and physical termoil.. she did not learn to self sooth.. I have friends and family but most of them just send "well wishes" and even if they offered to "help" I am not sure what they can do for Sammi .. Ahhh.. :worried: some times I am ok, I do what I need to do for my children and family but then there are days I feel beaten and worn to the core.. and yet I still have to get up every day after a dreadful night and do what needs to be done regaurdless.. Maybe if I wasn't worried or did not have my own health issues then this would be easier. My husband wants to help and lord knows he tries but it just is not working. I am going to go to a few conferences soon and maybe meet other people who have suggestions.. Right now I am just overwhelmed.. ya know.;)
     
  11. debatat

    debatat Moderator

    Jenna, it must seem so very overwhelming. It will improve for your daughter. In time things change, they gain confidence, learn and develop coping strategies. I know that must seem a long way off now, but it will come. I find the physchologists advice interesting and difficult for you I am sure. As a mom it is natural for us to want to be 'there' for our children.

    I hope the conferences help you. Have you tried any natural methods of calming her? Lavender oil and chamomile are calming. You can get natural bush essence remedies that are excellent for calming distraught children. Homeopaths and reflexologists can also produce good results. It is a matter of finding what works for her. Just a suggestion.

    Thinking of you.
     
  12. Jennannshear

    Jennannshear Registered

    Hi, thanks.. Yes we have a local all natural store here.. Last year she was full blown insomniac and nothing helped.. So they wanted to sedate her.. Long story short we tried Calm’s forte and even though the nights were hard, she was getting a good handful - hours of sleep.. She still uses that and also drinks Cham tea.. She does hot baths and heat-massage at bed time to help sooth her.. I have had many people tell me to give her medications to slow the tics down.. But its nothing that is guaranteed to work and others have said it caused other issues.. So I am trying to ride out this “phase” we are in… wish us luck. Like you said, this is not forever and I look forward to a day when I can look back and say
    “boy am I glad that’s over with” .. Some days I feel so BLAH and others I think I am selfish to complain.. Right now I sort of feel guilty for complaining.. Others have it way worse.. That I know.. Count my blessings keep coming to mind and so I will go lay next to my son .. Do that and take a nap!
     
  13. MDaisy

    MDaisy Registered


    An IEP is better as it forces school issues to comply with concrete goals. A 504 does not have as much "teeth" requiring compliance. We made the mistake of transitioning to a 504 with our oldest daughter (big mistake) while the other daughter stayed on an IEP until she finished high school.

    See if you can find an advocate well versed in New York special education laws as that will help.

    Have you checked with your doc for meds to help alleviate the tics. I am sure there is something available for her.
     
  14. Jennannshear

    Jennannshear Registered

    Hey.. thanks.. she was declined an IEP but we will go forward again with it on Friday. I have an advocate coming in with me. I am trying to just deep breath through it all.. because these people I have never met and to talk about what we go through makes me cry and I hate to cry in front of people.. I somehow see it as a sign of weakness even though I know its a sign of stregnth.
     
  15. MDaisy

    MDaisy Registered

    I tried to post some links but the board would not allow me to do so. I did find out unless there is a significant disability, children with TS may not qualifiy for an IEP. I didn't know that. My two kids both qualifed for IEPs and one was transitioned to a 504.

    Good luck and let me know how things turn out.
     
  16. Jennannshear

    Jennannshear Registered

    Thank you. Boy last night was the worse I have seen as far as her tics are concerned.. she had a brutal night again.. I am calling her docs.. keeping her home today as she is in lack of sleep mode and her stomach muscles keep contracting and causing her pain.. it hurts to eat and go potty.. poor thing. I look forward to this meeting. Her teacher pulled her otu of class to ask if she was ok bc she did not look so good.. Sammi told the teacher its because she stayed up late watching tv .. when I asked why she did not tell her the truth her response was that she does not want to tell people she has TS or it bothers her.. huh I told her its a good thing she has a mom that sadly understands and that we would work on this together. Thanks again for all the support from this site.. you guys have helped me EMOTIONALLY more then you could possibly realize
     
  17. Jennannshear

    Jennannshear Registered

    Me again

    Its like my own little journal, right.. except public. Sammi has new tics - new vocal tics. She is doing well in school and the school has updated her 504 plan.. We took her out of therapy and began giving her a very small dose of Melatonin before bed and wouldn't you know it, she is sleeping at bed time now.. each night has been getting better.. she still looks frail and thin but she is more alert and I notice her motor tics are handled better. With all the positives from the sleep and school one would think I would feel better but I still mourn and I still cry.. I was hoping once things were in place I would be handeling this better.. I guess for the time being I will just allow the emotions to come and go.. notice them and move on.. surely this will become "normal" to me soon.
     
  18. Katharine

    Katharine Registered

    Hi Jenna :)

    I'm glad to hear that your daughter is getting some good sleep now.

    I think that the acceptance of what is going on is going to take a lot more time and that what you are going through is pretty natural in any type of grieving process. Be kind to yourself and give yourself time - it's not easy :grhug:

    Katharine
     
  19. keebler

    keebler Moderator

    (((Jenna)))

    I don't think that ache will ever go away. I never did for me. It may get softer and easier to handle but you will still have your times.

    When Candii was school age I would look at the class she should of been in. Wondering what she would of done with her life.

    I now look at it that she helped so many people just the way she was. She was always happy, caring and loved to teased. She forgave easily and didn't hold anything against anyone. She helped shaped her brother and sister into the caring, understanding, compassionate young adults they are.

    With everyone getting more sleep everything else will be easier to handle. My heart goes out to you and Sammi :hug:and your hubby and son.

    Love &:grouphug2:
    Lyn
     
  20. Jennannshear

    Jennannshear Registered

    Thank you - Thank you all for your support through all of this. Sammi had her appointment after school. She came home yesterday and said she was bleeding from her rectum.. Not spotting but bleeding. The doctors are going to run some tests today.. Blood work mostly. She cried for about an hour straight last night and just kept saying “I don’t feel good, I don’t like this anymore” - just held her and told her I was proud of her strength and that some day looking back there will a reason for it all and along her path she will have helped so many people.. I told her I look up to her and she makes me want to be a better person.. She just smiled.. Blood shot eyes with bags and pale white skin with a frail frame.. Smiling at me.. It was enough to melt my heart. I just love her so much.. Thanks again for sharing. I greatly appreciate all of it.. Its not something I can easily put into words.. :blush:
     
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