January 25, 2017, 01:54 PM
I am a mom to two amazing kids, aged 4 & 7. In the last month my beautiful, sweet, easy going daughter has exploded in tics and OCD behavior. We had her tested for PANDAS and all that fun stuff and everything came back normal. We have a history of tics and tourettes in the family so I am fairly certain she has Tourettes.
I am absolutely destroyed over this. She is already aware of her movements and I can tell she's frustrated with the tics. Mostly motor tics, but a few voal ones like sniffing.
I feel as if I can't bear to get out of bed each morning. I cry and think about this all day. I believe that I have tourettes and OCD but I have lived a relatively normal life and didn't have any social problems.I had lots of tics and OCD growing up. But, school is a great memory for me and I really enjoyed junior high and high school. I encountered no teasing. I am happily married, live a good life, and before this, I was a happy, bubbly, confident person. My husband and I both have great friends and are active members of our community. I did well in school and am now a successful accountant and am pursuing my second degree! So what I am saying is that I am living proof that Tourettes is in no way a death sentence. I felt as if I had put Tourettes on the back burner of my life until now.
But.....I just can't seem to shake this feeling of complete dread and pain. My daughter has so many tics, and they are constant, and I am terrified that this means she will have a severe case of Tourettes. Can anyone help ease my dread? My husband thinks I am overreacting a bit and tranfering my fears onto her. Which he is probably right. But I am terrified of social ridicule and her not having a good childhood.
We have met with a neurologist who is refering us to a Psychiatrist/Pediatrician in order to see if we can start her on something to help with these frequent tics.
Did anyone else have horrible depression and anxiety after a diagnosis? Can anyone give me any shred of hope? I have never been so shaken and pushed down as I am now. I feel as I can't bear to continue, I am so scared for my sweet little girl.
Also now I'm worried for my son. He turns 8 in July. No tics so far. What are the chances he developes it at this late age? I read the onest is generally b/w 5-6. I'm hoping he's in the clear. Praying, more like it.
January 25, 2017, 03:14 PM
Re: Help Me
I feel your pain. Honestly I did not think they would start that early. It is not going to be easy I will tell you. Support will help, if you care to vent feel free. I myself passed it on to my son, long time ago but we managed.
January 25, 2017, 03:36 PM
Re: Help Me
hey i private messaged you.
January 25, 2017, 03:54 PM
Re: Help Me
Sorry to hear about your distress and I hope we can help you with information and support.
Are you aware there are two excellent Tourette Canada support Chapters in Alberta...Edmonton and Calgary?
Is it convenient for you to contact one of them for some local support?
That's absolutely correct. Why do you think this is weighing so heavily on you with regard to your daughter?
January 25, 2017, 04:32 PM
Re: Help Me
Thanks, I will have a look at them. I'm not sure why this news is so devastating to me. I just can't get past it and every second of every day I feel the weight of it and just can't move past it. I am so worried that she will have a horrible childhood. I truly don't know how to cope with this.
January 25, 2017, 07:26 PM
Re: Help Me
I understand the distress you might feel, but you said yourself,
Originally Posted by Momof2
How does one achieve quality of life despite a Tourette diagnosis?
Living an ordinary life with a Tourette diagnosis means learning some skills, that you, no doubt must be familiar with...negotiation and self advocacy
Your daughters are probably too young to advocate and negotiate for themselves right now, but Mom can help. You can take the lead, as your daughter's beat advocate, in dealing with school, teachers, family, friends and playmates.
Advocate by making people aware that your daughter's symptoms are involuntary and are the result of a neurological disorder. Symptoms are not due to a behavioural deficiency, and if there are any special accommodations your daughter needs at school, you would be there to advocate and negotiate for her special needs.
Your daughter(s) would learn these important life skills from Mom's example so they can become independent young women as they grow and become students and eventually career women.
As you well know, Tourette does not affect our intelligence, personality, cognition, creativity, ability to love or ability to achieve. People with Tourette can achieve anything they desire in life, depending only on their skills, abilities and hard work.
The news may seem overwhelming right now, but by using your own experience, and projecting that experience into a world with more awareness of people who are differently abled, your daughter(s) will be just fine.
You may find this excerpt from A Family's Guide to Tourette Syndrome
How do other members of the family respond to your daughter's symptoms?
Have any treatment options been proposed?
January 27, 2017, 02:13 AM
Re: Help Me
Hi momof2, you mentioned that you have OCD yourself. What I have seen in my family is that my son and I will amplify each other's distress at times. I have seen this in other families that feature TS and OCD too. So, if it's any consolation, you're not alone.
What happens to me sometimes is that I get overwhelmed with a feeling of worry about my son, and frustration at not being able to protect him better from certain intolerant teachers.
I've been reading and watching youtube videos recently about treatment for OCD, and based on what I've been learning, I've come up with the idea of identifying my worst-case scenarios, which I suspect are fueling my anxiety about my son.
When, as parents, we have strong reactions, such as what you're experiencing now, we can simultaneously realize that they are to some extent irrational... but that makes them no less real, and no less impairing. My son sometimes has irrational thoughts, too. It's easier for me to look at the situation objectively when I look at his, than when I look at mine. Here's an example: about two years ago when he was 11, he said to me one evening, after a very fun day, "Mama, I know this isn't true, but I feel like I'm never going to have fun again after today." And there was nothing I could do to make that feeling go away....
There have been two periods when I have had some brief panic episodes in the middle of the night. Each time, something in me managed to step forward and take care of ME for a change, and call for an appointment with my doctor, who adjusted my medications.
Here's how I look at it. When you get on an airplane with your children, the stewardess instructs you, in the event of a problem with the oxygen in the cabin, it is very important that you put your own mask on first, before putting the masks on your children.
Similarly -- if I'm having trouble functioning because of distress about my son's ability to make his way in the world, I'm not going to do him much good!
There's something a bit paradoxical about the reaction I get sometimes when my husband tries to reassure me, and inside, I am thinking, "Well, if you can't muster up a little bit of panic about the situation [whatever it is], then I guess I'm going to have to panic enough for both of us!"
I had another thought. I seem to go around and around about things the most when they hit me by surprise. For example, just when I thought my son was having less trouble in school, I suddenly got an email from the principal saying that my son had been calling out to classmates from across the room in some of his classes. I emailed back, asking which classes, and back comes a list... of five classes! In other words, almost every single one! And I felt like, if I had just seen it coming, I would have had an easier time being more detached.
So, I wonder if the suddenness of your daughter's recent explosion of tics and OCD might have something to do with how overwhelmed you've been feeling.
Last edited by aparente001; January 27, 2017 at 02:27 AM.
February 16, 2017, 02:26 AM
Re: Help Me
Hey, momof2, how's it going? The forum went down just when your daughter was going through a tic and OCD storm. The forum's back up now. I hope you see this and let us know how your daughter is doing, and how you are doing. Parental anxiety can be overwhelming at times....
February 21, 2017, 04:32 PM
Re: Help Me
Hi mum of 2. My son is 9 he has tics,vocal and physical. He has not yet been officially diagnosed. I just wanted to reply to your post to say that your feeling of despair is quite normal and it will pass. As parents we tend to blame ourselves feel guilty and despair as to why our child,was it me etc. This forum is great and very supportive. I'm from the UK and this has been the best line of help and advice about tourettes. Stay strong. Big British hugs xxx