heidispidi
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Posts posted by heidispidi
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Just a quick update on how my daughter is going.
There was a 7 MONTH wait to get into the child psych recommended by our paed. October was the earliest we could get in. I've since been provided with the names of 2 other 'good' child psychs in our area, who I will chase up this week. Her tics aren't bothering me so much (unsure whether they have lessened due to the magnesium supplement she's taking, or whether I'm just noticing them less b/c it's so common?). I seem to notice it mostly when she's excited right now. It's still that one hand that is her biggest/most common tic.
Early next month, her father will *possibly* be able to fly down from Brisbane to Sydney to visit her for A DAY. If you remember, this is instead of her flying up on her own to visit him, missing my b'day and Mothers Day - pretty much, IMO, the cause for her tic explosion 2 months ago (unless it was the swine flu vaccine which she got the same day, we have NOT gone back for the 2nd jab). Will this 1 day visit do more harm than good??? Hey, 1 day out of 365 is better than her not seeing him at all, right??? (He and I get along just fine, except for the lack of visit time they have).
Her temper/mood swings are the main reason I'm taking her to the child psych. I really feel that I most need to work on her anxiety/worrying/stress etc, if we are to have any hope of getting her tics under control. She is absolutely fine at school, behaviour-wise, but the minute I pick her up most days after work, she usually explodes. Her teacher suggested that maybe she is just on ultra-good behaviour while at school b/c she knows she has to be, then the second she doesn't 'have' to hold it in, she lets rip - at me, b/c I'm there. Sucks for me, but my getting angry with her won't (and doesn't) help.
I'll fill you all in on how we progress, maybe a monthly update, if I have nothing to say sooner. Take care, all.
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Hi Kevin. Like you, I posted here the 1st time about 2 months ago, absolutely bewildered and unsure where to begin with regards to my daughter's tics. She turns 8 next month, and her tics strated out as a mild head shake (we thought it was just a habit) before they 'exploded' into hand shaking and shoulder shrugging in February. Like your son, she's very active, with 3 (now 4) dance classes a week, and competitive t-ball and athletics on 2 other days each week. Also, while she's never been dx as having ADD or anything, I have a feeling there's someting there.
How is your son's behaviour? Does he have mood swings or sudden outbursts of temper? My girl does, and the only thing the paed said to us at our last appt was that yes, she has a tic disorder, but it could be a mild case of TS, due to the behaviour issues. The behaviour is ONLY with me and my hisband, not at school (where she is of course happy, bright, bubbly, polite, helpful...!).
Paed told us we could do one of 3 things - nothing, medicate, or see a child psych. I've chosen the psych route, as she needs to deal with her anxiety and near-constant worrying about things. I have her on a magnesium compound, but have not tried any diet-elimination yet. The way I see it, there have been improvements, as in she's not ticing as much as before - or is it that I am becoming immune to her tics, b/c they occur so frequently? But her temper is terrible, and that's why I'm going the route I am.
I hope you find the right way to go for your son. I know how stressed you must be, it is all so overwhelming. Everyone on here gave me great advice, as they have with you. I'm more replying, I guess, to say that I understand, and am here for you.
Heidi
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Well, got no answers from the paed. His 3 options were to either:
(1) medicate
(2) child psychologist
(3) do nothing
I've gone for option (2), as there is no way I want to medicate my otherwise well-functioning daughter.
Hopefully the psychologist can help Jaymi work through her anxiety issues. Before her appt yesterday, I broke the news to her that I would be taking her to Disneyland in January (a big thing seeing as we live in Sydney!). She started off all excited, then started to worry, within a few hours. What if we don't actually go? What if Disneyland isn't as much fun as we expect? What if the (17 hour) flight is too long and boring? Not the 'normal' reaction for a 7 year old, I don't think.
Let's hope the psychologist doesn't have TOO long a waiting list.
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Hang in there, DC. We're both in a similar position, playing the waiting game is tough. I'm not a patient person at the best of times, but where my child is concerned, I want answers, and I want them now. I"m sure you've been through far too much of that already, with your other child.
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I did look into the PANDAS info. While she hasn't been tested for anything yet, I can see there are several factors that suggest this could be the case. She had sudden onset, adventitious movements, behavioural regression (in the form of massive temper tantrums/mood swings/aggressiveness) and, of course, tics. I wouldn't call her hyperactive, but she has always been unable to sit still for long.
A journal is a good idea, I did that between making the 1st appt with the paed, and the appt itself (a 10 day period). Makes for interesting reading. Our GP thought she had OCD, which made sense to me as my sister and I have suffered from OCD for years (nothing physical, it's all playing with letters and numbers in our heads, seems it was our way of coping when 1st our mother, then our father, passed away from cancer 4 years apart). However the paed said it was a tic disorder, and I don't see any OCD behaviours in her.
What are your thoughts on PANDAS?
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Our 2nd paediatrician appt is this Thursday and I would like to be as prepared as possible. From the 1st appt, he told us to ignore the tics, he ordered a blood test to check her thyroid (which was fine), and he wrote a note to her teacher asking for some input.
Here are the things I would like to discuss with him, but can you think of what I may have missed, which would be good to ask regarding my daughter's tic disorder?
* Blood test results - nothing showed up in the initial testing, so what else should we be testing for?
* If this is genetic, as her father and cousin have had what I would deem minor tics during their lives, why are her tics so much worse than theirs?
* Will it go away???
* Does she require medication?
* Should she be seeing a child psychologist? (in my opinion, yes)
* Should she have the 2nd half of the swine flu vaccination? (in my opinion, no)
* Are her terrible temper and extreme mood swings related to the tic disorder?
* Should I be removing certain foods from her diet now, or waiting until testing is done for sensitivities? Is the doctor PLANNING to test for sensitivities?
* Would it have been the swine flu vaccine OR the stress she was under from her father that triggered this increase in severity in the tics?
TIA for your input. This wait to get back to the paed has been so hard on me. I found myself in tears on and off all day at work on Thursday, so took Friday off to help me relax. Which was fine for the weekend but here I am, Monday morning, at work, feeling exactly the same as Thursday. If I'm feeling this bad, I wonder what my girl is going through?
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Hi DC, and welcome.
I am only very new to this as well, as it's coming on 4 weeks now since my daughter's tics went from the odd head shake (like your son) to near-constant shoulder shrugging, hand shaking etc. While I do not know what the underlying cause for her tics is, I do know that stress/anxiety/nervousness and excitement all contribute to the frequency of her tics.
I just want to say hang in there, as the wait until your appt in April may be the longest period of your life. We go back to see me daughter's paediatrician this Thursday, and this 3 week wait has been the longest, hardest time of my life. The people I have met through these boards have been a calming influence, so if I can help you in any way, please let me know. It helps so much to put your thoughts down on here.
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Thanks Cheri. I will check out the info in your link in the morning, it's been a long day.
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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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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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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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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
Overwhelmed...
in Tourette Syndrome and Tics
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Hey Kevin. I'm sorry that things are progressing further. You do sound kind of positive though, which is a good thing. Is he affected by tics while competing, or does this require concentration that takes over his tics, even for the length of his routine? I've seen with my daughter that even during her dances, she tics - but this perhaps is more noticeable for me than anyone else?