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joanne34
Hi, just wondering if anyone has experienced his.  Our daughter has anorexia and since having the condition (so this definitely appeared after we started treating the anorexia) she has experienced tics which started as a twitch in her neck but have just kept changing and getting more pronounced for example we have now also seen vocal tics and also whole body needing to jump in the air tics and clapping tics etc.   Her tics now look more like "Tourette's syndrome'.  However, she has never experienced or demonstrated any of this behaviour prior to the ED. 

We are taking her off the SSRI (gradually) to double check the medication isn't responsible for the exacerbation of the tics.  We also have further medical appointments to investigate this further.

Our daughter had no neurological issues prior to being diagnosed and treated for her ED.

I'm just wondering if anyone has experienced this and if over time it just went away.  When she is calm and occupied mentally or physically the tics are held at bay.   They only really arise when she is tired or when agitated e.g. prior to meals.

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Foodsupport_AUS
I didn't have these issues with my D. I am pleased to hear that you are getting things evaluated. My understanding of Tourette's is that things also become more pronounced when stressed upset, so not sure that the timing really helps. I  hope you can get an answer soon. Good thinking on stopping any newer medications in case they have a role. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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atdt31_US
How old is she?

How long ago did anorexia begin?  How long ago did you notice it?  What do you recall about what immediately preceded when you noticed eating restriction -- was she ill, with strep or a sinus infection etc.  

When did the tics start and how have they evolved?

Are there any other "symptoms" you have noticed, even if they seem like nothing or "coincidental."  For example; clingy to you or her room or your house; regressing in any way like baby talk or playing with toys from years ago; if you have her do handwriting or draw the face of a clock, does it look like you would expect; are you seeing any ocd like actions; is there any change in frequency or urgency in urination; is there a spike in anxiety or panic or fear in her eyes (huge pupils); joint or stomach pain that is new and marked; is there any rash at all or redness along the toenails like an ingrown toenail type look and pain;  etc.  

Unlikely, but a syndrome under the umbrella Basal Ganglia Encephalitis (BGE) can present, in any order, with both anorexia and tics.  You can search this forum for my posts and I have linked to some useful youtube videos where some of the Pans/Pandas experts discuss how this can present .... or post back if you want and I can try to link them here ... I just don't want this to be a red herring if you feel like it is not a possibility.  

Can she handle ibuprofen?  Sometimes a week or two of 24/7 ibuprofen can show a marked decrease in symptoms if BGE is causing the symptoms ... tics from inflammation of the basal ganglia will often markedly lessen with anti-inflammatories (or antibiotics or steroids) whereas studies have shown tics from Tourette's will not abate with that sort of treatment.  BUT please don't start any meds without a doctor's approval.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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joanne34
Thanks for your responses. x
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joanne34
We saw a paediatric consultant and she has agreed to refer her for an mri scan.   She is now fully off the sertraline.  On a positive her mood hasn't dropped and is fairly stable however the tics (both motor and vocal) seem to be getting more frequent......oh and she still doesn't want to recover from anorexia!!  However, her hair is no longer falling out, her toes are no longer blue and she has now gained 5.4kg so she is hopefully recovering very slowly but surely.  I really hope all of this is just another symptom and that she does recover.
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Enn

I am glad you got a specialist consultation. I think that will be very helpful. 
Great about her hair no longer falling out. 

Thanks for the update. I was thinking about you just the other day. 

Sending my best. 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
Great to hear of the weight gain and those other physical symptoms improving. Also good that her mood hasn't dramatically deteriorated off the sertraline. 

As a matter of interest do you think her anxiety has increased since coming off it? Does it in any way correlate to her tics?
Thinking of you. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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joanne34
Thank you both!
She had tapered to a week of 25mg on alternate days and Fri was the last day she had a tablet.  She is now on her second day with no medication.   Yesterday was pretty bad her tics  (motor and vocal) were pretty constant and she was agitated/anxious.    Today she seems better than yesterday, definitely not as agitated - she'll actually quite chirpy and definitely less tics - most notably less vocal tics.   From what I've read it will take around 5 days for the sertraline to leave her system and I've noted the 5th day on the calendar.   
On a different topic her period returned in May (after stopping Aug 2019)  and she had another in June however nothing in July so her agitation could also be hormone linked.  She hasn't lost weight again so that doesn't explain her period stopping again, however I suppose it could be irregular at the mo.  
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mfab12
Hi. 

My D with AN doesn't have any tics but my son without Ed had them quite extreme between the ages of 5-14yrs. It sounds very similar to what he was experiencing. It's very distressing to see them have to do these movements and very exhausting for them. The tics were always worse when he was stressed, anxious, excited .. Basically any mildly strong emotion. I found he was calmer when focused on gaming or engrossed in an activity. You may wish to consider contacting a Tourette's syndrome support group for additional support to help manage them.

My S is now an adult with tics so mild you wouldn't notice if not told for several years. 

I really hope you find the support and hopefully as recovery continues her anxieties and tics decrease. 

Take care
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joanne34
Thank you for your kind words mfab12.  Our daughter didn't have any tics at all before. She is 13 and they only started (v mildly at first) when we began addressing/tackling the anorexia.  She is approaching 80% W:H so still has a way to go in terms of full weight restoration however symptoms such as blue toes, being cold, hair loss, presence of lanugo have gone.  She looks healthier in terms of her pallor and she has just come off the sertraline.  Today we are at the day when the sertraline should have all gone from her body.   She definitely has more motor and vocal tics today and her motor tics are particularly pronounced.  She is definitely calmer when doing an activity such as artwork, computer games etc.   However, whether the drop in sertraline has caused an anxiety spike today, I don't know......most likely though.   We'll just have to see how things go as her body adapts to no SSRI in her body.   On a positive her mood hasn't dropped.   As a parent though, the tics are horrific and if it is the case that if she never had anorexia she possibly wouldn't have the tics......well that is hard to take on.  However, she has got anorexia and she has got tics so we have to deal with it the best we can and we are fortunate as there are families dealing with much worse situations than we are currently facing. 
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