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Newly Diagnosed Tic Disorder (7 1/2 year old girl)


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Hi all. My daughter turns 8 in May and was a week ago diagnosed as having a tic disorder. I have read through a lot of the infomation in these threads, and am hoping that you will all welcome me (and my girl) into your group. We live in Sydney and she is in Year 3 at school.

 

I'll give you the background. A couple of years ago, she was blinking all the time. Like others I've read about on here, she had her eyes tested and was prescribed glasses - they didn't help. I also remember her 'stretching her mouth' regularly. These (now I know they are tics) went away over time. When school broke up for the school holidays in December last year, my sister and I both noticed a head tic (quick shake of her head) for the 1st time. This was late December, but watching the DVD of her dancing concert, held in late November, she did it twice during one of her dances too. It was not noticeable to others, and happened sporadically, until 3 weeks ago, when 2 of her friends' mothers noticed before school 2 days in a row (they thought she was going to have a fit). I took her to my GP on the Sunday, to get her swine flu vaccine and also pointed out her head tic. The GP thought it was OCD, so referred her to a paediatrician. There is a history of OCD in my family (myself and my sister have had OCD for years, for me, as long as I can remember, but worsened for us both when our Mum was dying of cancer almost 20 years ago).

 

From that day, her tics have worsened dramatically. The head tic was joined first by a hand shake (like when you have wet hands and you are shaking them dry). The shoulder shrug appeared several days later (I noticed it while she was playing t-ball), and now the head shake has gone, but the hand shake has turned into a single-hand 'flap' (best way I can describe it is that sometimes it's like she's going to take off, she's flapping it that hard). She also gets quite a sore hand from this. ((Please excuse what may seem like my use of excess humour - I don't find this at all funny, it's just my way of coping)).

 

At the same time as the GP appt, her father (who lives in Broome, on the other side of Australia) told her that he could not visit her in Sydney in May, that she would have to fly up to Brisbane to visit him instead. This would have meant flying on her own (already known to cause anxiety in her, as well as missing Mothers Day and my birthday - something she cares about. After a couple of days, we straightened this out, and she's not going, but this didn't help her symptoms at all. Coupled with this was that she was separated from her best friend at school, both are in different classes now. So, I see stress as being a massive trigger here.

 

Anyway, we saw the paed last week. He observed her, took the family history (that I knew at the time), and ordered a blood test. I found out that night that her father has always had a facial tic, and I knew her cousin on her dad's side does too. So there's a genetic link. Plus I found out that her grandmother on the same side has a thyroid issue, and her aunty. I thought that was it, that the thyroid was a major contributor - no, got the blood test results over the phone today, it was all clear. The paed has written a letter to her teacher asking for more info - She has never had any learning difficulties, and is very social, but I see a short attention span, the inability to sit still at home, major mood swings and difficulty in controlling her temper. problem is the teacher she had for the first 6 weeks of this year left yesterday to teach elsewhere for the rest of this term (may be why my girl was tic'ing so much last night). She also asks a LOT of questions. Not sure if she repeats things sometimes b/c it's a tic or whether she needs more clarification?? She also has a large appetite and has been putting on weight steadily for the last year or 2. She keeps active with 3 dance classes a week, t-ball and athletics, and is now learning the guitar at school (keeps her hands busy?).

 

So, I'm playing the waiting game now until we go back to the paed on the 18th March. I figure all I can do for now is educate her as best as I can, by advising her on what to say if it's noticed by other kids at school (only one has asked about a shoulder shrug so far). The paed said to ignore the tics for now, but I feel bad in admitting that I do get embarassed sometimes, when we are in public for example, and her hand(s) is flapping away madly. Of course I understand that I need to be the grown-up about this, but I want to help her, we hold hands a lot, so I sometimes take her hand like I want to hold it, when really I'm trying to help her control the tic. I have also seen her kind of hold her hand down at times, as if she can feel it and knows it's going to happen again?

 

I'm sorry this is so long. It's great to have a forum such as this one to put my thoughts down 'on paper'. If anybody has any advice, tips, or comments, I'm open to it all. Because this 2 week wait before we go back to the paed is going to be very long. Thanks in advance.

 

Heidi

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Heidi

 

Welcome! Don't know if I could provide you with much info but here is what I have learned since September from this awesome forum. All the things you mention below are tics. My son has had the eye blinking, stretching of his mouth, and shoulder shrugs. I husband has had the hand flapping when he was young. Son has not had this one yet. Stress and excitment are triggers for him and seems to be pretty common among many as from what I have read here. My son has environmetal allergies which defiantly bring on his tics. This fall was the worst I have ever seen him. He is 7 1/2 and it seems that that is the age when it comes on greater. My husbands started at the same age. Anyway, I got him tested for food allergies/sensitivities (IgG) because of reading on this site that those can be triggers. Let me tell you I would have never suspected any food allery os sensitivity but he came up with 28 sesitivities!! Also has several actual allergies to milk, eggs etc. I have taken everything out of his diet. He is not ticcing much now or at least they are not as noticible or excessive. I will take this anyday!! It definately helped his stuffiness. About OCD, yes my son has it. That seems to be more of the problem these days. OCD is tricky! I always assumed it was the typical hand watching, counting or things like that. You need to read Faith's postings. She helped me realize that my sons irritation and jumpiness and many other actions are due to his OCD. He worries alot! I got this good book on Amazon " What To Do When Your Brain Gets Stuck". It's a childrens guide book. We have been reading it together and he has been opening up to me about all the things he worries about and telling me that it is so hard not to think about the bad thoughs. Anyway, please keep reading this site. It did wonders in my journey. I know its hard and scary but the more you know the better you will be able to help her out. There are many smart, helpful and very knowledgable parents here that are all going through the same thing.

 

Mar

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Welcome Heidi,

 

Have you tried epsom salts soak for her hands? Have her take a bath for 20/30 min. in 2 cups epsom salts and very warm water.

 

You could make a hand cream for her with the epsom salt too. Just add some salts to a small amount of warm water then add the salt water to a hand cream of your choice and mix it up well. Put the cream on her hands and she will be getting the mag. from the salts for a while. this could help calm them. This worked for my son's neck tic he had.

 

This is a great way for you to relax too so take those baths yourself :)

 

Glad you are part of the family,

CP

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Thanks CSP and Mar, for your welcome, and responses. I haven't tried anyting yet, as I have only just begun learning about tic disorders, so everything you've said has been helpful. I will try the epsom salt bath and cream on my girl's hands, and let you know if this helps. I will also ask her paed about allergy testing, something I hadn't considered before.

 

Mar, she worries ALL the time, about many different things, though she is usually (extremely) open about what's going on in her mind, but I will certainly look into the book that you've mentioned. Something we can read together would be great, as she loves her Mummy time!

 

What I find interesting is how tics seem to 'come on' or intensify around this age. Can somebody maybe point me towards an article, or give me your thoughts, on why this might be?

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heidi, hello,

I see that you are noting that your daughter has had some tics before and they went away for a while? I'm not sure from your post, do you say that she DID have the flu shot, or didn't wind up getting it? how long ago was that? sometimes that could stir things up for a bit.

 

hang in there, it may take a bit to get a handle on some of this.

 

Faith

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Hi Faith.

 

My daughter had the swine flu shot the same day I took her to the GP to discuss her head tic (3 or 4 weeks ago). Perhaps it's a coincidence that from that day (or perhaps 1 or 2 after, it's hard to pinpoint), she developed more tics, with a greater frequency? I don't know. The last shot she had before that was before she started school, so just over 3 years ago, and while I don't recall any tics at that time, I guess it can't be ruled out. She has to go back to the doctor in a week's time for the 2nd dose of swine flu - do you think this is this sometihng I now should avoid?

 

The tics she had before (past couple of years) that I didn't recognise at the time as tics were blinking and stretching her mouth - all things that we thought had become a habit. They did go away, and were nowhere near as frequent as what she is experiencing now.

 

My way of handling this is to pull together all the information I can find - and then bombard her paed with it all. He's highly experienced in this field, and for her 2nd appt, I'd like to go in as well prepared as possible. Every couple of days it tends to take over my thoughts, but I am working on that. Thanks guys.

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So just to make sure I got it right, she has had tics before the flu shot, and you were at the docs to discuss a head tic? was it as frequent as the tics are now? I hate to say, but if there is an increase in frequency or intensity that you had not see before, or a new tic, it could very well be a reaction to the shot. this is just my opinion, and of course could be coincidence, but there are many here who feel their child's tics ramped up big time after a vaccine and/or flu shot. not familiar with swine flu shot tho, is that one considered a live one? Is that how it is given, in two doses? really, I am not a fan of vaccines, not in general, but in kids who are confirmed ticcers.

 

Maybe someone else here could comment on if you should get the next dose?

 

 

Faith

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Yep, she had tics before she got the swine flu shot. But at that time it was only the head tic. Within a couple of days, the hand tic and shoulder shrugging began. That said, she also had highly emotional stuff come up at the same time from her dad, which had her extremely upset and anxious.

 

Like so many others, I've blindly followed what we're advised with regards to vaccinations, but I will make sure we do not go back for the 2nd dose (that's how it's done, here at least) before we discuss with the paed. I can't tell you whether it's a live shot or not. What I'm annoyed about, though, is I saw the GP and we 1st discussed her head tic, before he gave her the flu vaccine, all in the same visit. Wouldn't a good doctor have put off the flu shot until we'd visited the paed re her tic? Can't revisit the past, I know, but frustrating none the less.

 

Heidi

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welcome Heidi

 

I will catch up tomorrow and see if I can offer any helpful info for you, but just wanted to say Hi

 

I have a link in my signature that documents what has been helpful for my son

 

we have a lot of past posts linking vaccinations as causing tic increase, so do start searching for those(the search link is top right of the page)

 

hope you find the answers you need to help your child

you will find a lot of support here too ^_^

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Heidi,

 

My son had small tics, if any, before he had 2 shots, 6weeks later he exploded with screaming that lasted a year. I really really vote no on the flu shots 2nd dose.

 

I watch videos of my son at his 11th b-day and he has no tics at all. BAM... 12th b-day 6 weeks after shots a totally different child. Makes me cry every time I watch those videos.

 

CP

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Heidi,

 

My son had small tics, if any, before he had 2 shots, 6weeks later he exploded with screaming that lasted a year. I really really vote no on the flu shots 2nd dose.

 

I watch videos of my son at his 11th b-day and he has no tics at all. BAM... 12th b-day 6 weeks after shots a totally different child. Makes me cry every time I watch those videos.

 

CP

Hey CP, which shots were they? I know that ds is due for a tetanus/pertussis and I have been debating getting this for him. I would think that tetanus is a pretty important vaccination. I know we have sworn off all flu or chicken pox vaccines for him for now.

 

Heidi,

welcome to the boards. I think the epsom salts would be a nice thing to try for a while or supplementation with magnesium. Even if they don't seem to help the tics, the magnesium is something that many of us lack in our systems these days as the food we eat doesn't supply as much magnesium as our bodies need. And, I would think that just re-assessing her diet would be a great place to start. Cutting out the junk, food colorings and additives, MSG, etc. I know that a few on here feel that MSG triggers tics and I know that Cheri's son is triggered by chlorine. My son is more triggered by allergies and stress(both good and bad). And, yes, stress is a huge factor in the frequency of tics for our kids! Some of us even think the cycle of the moon can exacerbate tics and OCD! I know, it's a lot to think about, LOL! Hang in there and arm yourself with as much information as you can. We truly do become our children's advocates and we're working hard here to help them through these challenges.

 

Bonnie

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hi bonnie, how are things going?

 

while you are wondering about the Dtap, (I think thats the one cp's son had), I don't want that one either and we are coming up for it. My son recently had some immunity bloodwork done and on the panel it check for diptheria and tetanus, and apparently he still shows enough immunity to it. that just leaves the pertussis, that one wasn't on it. I wonder if they will accept this as proof of immunity? I don't think this is a ususal test, but we were doing somethe on checking antibodies for something else and that was a part of it. Really i was going to try and claim rel exemption, I have the forms, but even if they accepted it, it still leaves the pertussis. would anyone think just having the pertussis alone could be promlematic? don't even know if they give it alone anyway. but interesting that he showed enough immunity. I'm thinking if that is the case for some kids, maybe that is why the vaccine causes some problems in kids with tics, maybe boosts too much of an antibody response. don't know.

 

Faith

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Yep! That's the one, and also meningococcal vaccine. Now mind you my oldest dd also had these same shots on the same day. She has no tics but you remember the trubble I had with her. I did not notice any spike in her fears but that could have been because I was wrapped up in my son's screaming.

 

CP

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Has anyone not vaccinated at all? Just curious as my son has tics at age 9 and we opted to not get him vaccinated as a child and have filled out the form for "philosophical reasons," and he's in public school unvaccinated. My husband and I now wonder what would have happen had we had him vaccinated and how much worse things could have been. We had planned to get him vaccinated for chicken pox if he didn't get that by age 12. What do we do now?

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