F.E.A.S.T's Around The Dinner Table forum

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joanne34
Not sure how to deal with everything at the moment.  When we first started  addressing the anorexia (Nov last year)  our daughter, as expected,  got very upset and her release seemed to be scratching her arms/legs with her fingernails when agitated.   That seemed to calm down along with the upset.  About 4 months later she would slap herself across the face when agitated.  This week I noticed a plaster on her thigh.   She had cut the skin with scissors, actually snipped it....not stabbed herself with them. As she had been hiding it, I didn't see the wound until about 5 days after the event.  she had tried to keep it clean, put antiseptic cream on etc.  I spoke to her about the dangers infection if she did something like that.    Today when out with her I noticed bruising on the side of her face, just to the side of the cheekbone/eyesocket.   I asked her about it and she admitted she'd done it to herself and she has been punching herself in the side of the head.

Tonight I just feel like it is the straw that has broken the camel's back.  I've been trying to cope with everything associated with treating someone with anorexia....the upset, the worry, the constant lies, the exercise compulsion, the trying to hide/get rid of food, the hatred at times projected towards us with no good reason and now I feel I just don't know what to do!!    Obviously we've taken precautions now regarding sharp objects but I can't lock away her hands!!   I spoke to her about the dangers of what she's doing in that she may try to do it harder each time and could fracture her cheek bone/eye socket and various other things.  I didn't get mad but I did get upset.......partly because I just feel beaten by all of this right now.   I know I have to dust myself off and pick myself up but it is just so hard and I just can't see how things will get better.  

I hate this disease.

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Enn

I am sorry for what is happening at this time. Please ensure that your team knows.
If you ever feel she is a threat to herself or others please take her to the hospital immediately.

Some parents have found that to substitute a less noxious coping tool can help. By that I mean , giving her ice to hold and tell her if she feels so upset she wishes to hurt herself to tell you and you can get ice. Or make a few ice baggies and keep in the freezer for her when she needs. Fidget spinners, my older d has these funky brackets that can twist in many ways. There is also an elastic toy they can pull at. I have read here that a parent gave the child markers  to draw on themselves. How about a punching bag ? Or a ball to throw, or a quiet dark room, a sensory box? You can make a box with different items, something soft, hard, cold or warm, something nice to touch or something prickly...
She has to get the emotions out and using tools like those above may help. 

The professionals you are dealing with should be made aware of this and hopefully can support you all with other therapeutic options , and ideas. 

 

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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Enn
Ps does she let you know when she feels like doing this? Is she comfortable telling you so that you can come up with ways she can express her emotions? When my older d non ED feels overwhelmed and wishes to self harm, I have given and bag of ice, or got the cat. Edited to add her cat really soothes her.  But she does come to me sometimes for that support. The ice helps her sometimes , not every time . It is awful, so awful!! I agree with you wholeheartedly.
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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LaraB

I know this must be so upsetting for you. I am so sorry. My D went through phase of hitting her legs till they bruised and banging her head against the wall about 4 months into refeeding. She was ashamed and did not want people outside the family to know but telling the team helped to stop this as she was embarrassed that they knew. This probably sounds really awful of me but I remember telling her I would tell her teacher as well if she hit her head again as it was so serious, people needed to know. 

I remember someone else on the forum got her D a punch bag. I considered this but was worried about the exertion. 

sending a hug. This must be so distressing for you all. Xx

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Foodsupport_AUS
Seeing our children do more damage to their bodies is heartbreaking. Self harm can be part of suicidal ideation so it is important to have a good assessment done of her risk of more serious injury or harm, however it is also in eating disorders often a reflection of the internal turmoil they are experiencing. My daughter self harmed frequently when ill from more minor things such as extensive scratching  to cutting and banging her head on brick walls till she split her scalp. 
There is some discussions on self injury in the Hall of Fame which you may find helpful, and Lauren Mulheim addresses it in When your teen has an eating disorder.

Things I found helpful were firstly addressing it matter of factly - she was doing this to herself because she felt so bad, not to hurt me. 
I made sure that she did not have access to things or tools that she could harm herself with or accelerate the harm with - knives, medicines, cleaning products, toys like jump ropes, pins, pencil sharpeners and scissors were all removed from easy access and only used under supervision.
We discussed (with her psychiatrist) other things she could do that were less injurious when she had these urges - using a red marker on a ruler, which could be used to "cut" , holding ice cubes, elastic bands on the wrist. Some other techniques include things like shredding magazines, scribbling on paper - hard. 
We learned DBT techniques as well - this blog explains them. https://www.healthyplace.com/blogs/speakingoutaboutselfinjury/2019/6/distress-tolerance-learn-a-dbt-skill-that-curbs-self-harm
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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bfiz
oh god I know how you feel.  My daughter has been self harming for about 8 months.  It started with pinching her thighs until they were black and blue.  Then she started hitting her head against the wall and eventually moved onto slapping her face and scratching it.  She is 13.  I have really struggled with it, but found that if we almost ignore it (I know totally distressing and hard) that it calms down.  She still scratches her face but it is one scratch a night - every night.  So far better than the 8 or ten scratches that made her face look like hamburger meat. she made a point of showing us the harm, so this seems very different to your daughter.  We did buy her a punching bag but she didn't use it.  I find just keeping her busy and occupied makes the self harm less.  It's such an impossible disease and I sympathise with you, but I do think there is a ray of hope as our daughter has maintained her weight for about 4 months and does laugh now...there are more and more glimpses of the happy and beautiful child I know.  I find that going out for a walk with her helps.  It's the small stuff that matters.  Thinking of you and wishing you well.  It will improve, I'm sure of it - hang in there.
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melstevUK
Hi Joanne34,

I assume you have told your d that the self harm is an expression of inner turmoil and suffering.  Have you had an open discussion about looking at practical things she can do?  I wonder when the urge is strong if she could sit down and calm her breathing, to anchor herself and wait for the urge to pass or at least become less strong. 
Scribbling hard with a pen sounds good to me. I am wondering if she could just write down about what she wants to do and try and get the feelings externalised on paper. 

Telling the team is a must although the standard response I have always heard is to ignore the behaviour and just help clean the wounds. That doesn't seem a solution to me but clearly it is working for bfiz above. 

So sorry for what you are going through. It must be utterly distressing to witness. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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joanne34
Thanks everyone.  I'll speak to her about the ice idea.   She does have a journal which I'm pretty sure she writes in fairly regularly.   One other thing that has changed is her nervous tic.  It is now very much focused around the mouth where when agitated she is opening her mouth and sticking her tongue out in a wide/forceful manner.   This is new as her tics prior to that were body twitches/throwing head back/rolling eyes.   When out yesterday she brought up intrusive thoughts.   This rang alarm bells as she is on sertraline.  I asked her today if the intrusive thoughts started recently after she went on medication - she said no.  When I asked her if they'd got worse since being on medication she just shrugged her shoulders and said I don't know.   Still feeling defeated, sad and angry about everything but will push on regardless. I'll be emailing her psychiatrist in the usual update on  Monday and she has an appointment on Fri so some issues may be addressed then. Thanks again for all of your responses.
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joanne34
I've also made the decision to get a referral to a neurologist.  I am really concerned about how acute her tics have become, hey are really bad..   I am also concerned the sertraline is making them worse.   If anyone has gone down the neurology route due to the appearance of tics and you have any advice, it would be good to hear.  
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Enn

I think that is a very appropriate thing to do. 

Just a thought, had your d had an antecedent strep throat prior to ED? I just had a thought about PANDAS. I will post a link in a few minutes.

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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Enn

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340640/#!po=0.925926

@atdt31_US had a thread about PANDAS/PANS that was very detailed. You may wish to look it up. Just a thought.

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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joanne34
Hiya, I've seen this before.   I've read so many studies/articles related to this illness.  I don't remember her having a throat infection.  In fact I can't remember the last time she had to have antibiotics.  She did get bitten by a tick years ago but there were no signs of lyme disease. If we get a referral and nothing is found....at least we know we've checked.
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Enn
I hope you don’t mind , I also thought of Tourette’s syndrome. Of course we are not doctors, just putting it out there as a hypothesis to test, and not necessarily and ED thing.
https://ghr.nlm.nih.gov/condition/tourette-syndrome#diagnosis
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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atdt31_US

Read and/or watch YouTube videos about pans/pandas where the experts put on seminars For parents and even other providers. Look for most recent. If you search this forum you will find links I have posted to some good conferences and speakers. For 2020 searching also try putting in BGE ( basal ganglia encephalitis) which is starting to trend as the new umbrella term for pans and pandas and their similar syndromes. Still very much in toddlerhood if not infancy in research of this, but great strides have been made in the last several years and that research is finally starting to be published. 



If you wanted to post other symptoms that preceded the Ed and/or first recognition of tics, I might be able to point you to some resources to help see if p/p/bge looks likely ... couple things as you proceed:  Lots of neurologists are very skeptical of p/p (we had two tell us either my d did not fit or that p/p has been disproven), so one doctor saying “not pandas” may not in fact rule out pandas; a throat infection is not the only trigger for p/p/bge (and Lyme can also cause similar symptoms); there are some very low risk things a family can try in order to help rule p/p/bge in or out —- I don’t give meds without a doctor so I am NOT saying to do this on your own; but studies show that if the tics are from an encephalitic process, they abate with a properly chosen med (antibiotics; nsaids; steroids) versus tics from Tourette’s do not. So although very hard to distinguish clinically they can respond differently to treatment and that can help pint to underlying cause. 


if you watch the YouTube stuff by Swedo and Kovacevic (my two favorites for introduction) and feel like it explains a lot of what you have seen, post back and maybe some of us here can pint you where to look for more research or doctor in your region. Check out Pandas Network as a good, trusted website with tons of info too.

 

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.  Yes, already considered Tourette's but these behaviours started after the anorexia.  She had been restricting for probably a month or two before we found out and then once she started going to the clinic, I'd say the tics gradually appeared a month or so after her first appointment.   She has never shown any of this kind of behaviour prior to all of this happening.  The neurological symptoms appeared from nowhere.  I'll have a look at the PANDAS resources
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Joe
I'm so sorry to hear you're having such a horrible time. I feel you... We had to go down the neurological route briefly,, as our son was so poorly with lots of self harm, everything you've described basically. He even had to have an MRI of his brain. There was absolutely nothing physical. It was all the anorexia. With a lot of weight, things slowly got better... Have you asked CAMHS for a prescription for Fortisip? It's a fortified drink. We added it to everything we could to add in extra calories. This helped with weight gain. As did butter and cream in everything he ate.
The tips the lovely people here have given are what helped most with the self harm: ice, elastic bands, marker pens. CAMHS also told us to allow 5 minutes on the trampoline. This worked very well too, but it'll depend on your d's weight maybe? 
Good luck. You've got this. Sending love and strength. 
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joanne34
Thanks Joe.  I also think it is likely to be the anorexia and also the level of dosage of SSRI seemed to be triggering excessive tics even when happy/calm.  We have reduced the dose of sertraline back down to 50mg from 75mg and that has seemed to have an instant impact as her tics have reduced significantly in nature and frequency.    The self harm has calmed slightly too.   She has two fortisip drinks a day which did initially help with weight gain and she has recently plateaued, hopefully this will pick up again.   The neurological route is a consideration in part to rule out there is definitely something other than the anorexia causing all of the issues we are dealing with at the moment.   We do allow her exercise, within reason, and this does have a positive impact as it seems to reduce the agitation.   However, as she is just under 80% in terms of H:W, we have to be careful this also doesn't get out of control.   Also the fact she is now a teenager also doesn't help in terms of  moodiness etc!!!
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joanne34
Another 'Tourette's like' symptom.  She went to say the word 'why'  and then clearly couldn't stop saying it, almost like a stuck record.  She must have said the word repetitively around 20 times until she was able to stop.   I am so worried.   Her psychiatrist at CEDS has referred her to a paediatrician based on her other tics but now this has really worried me so hopefully the referral comes through soon.  Usually my daughter will brush off these symptoms in the sense of "I don't want to change and if this is what I have to put up with to have anorexia I don't mind".......however, I think this did alarm her and I think she is also not happy with her recent tics which she isn't able to control at all.   My poor girl.
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LaraB

Hi I suggest you feedback to psychiatrist about this new tic too, in case they need to consider the sertraline dosage. I know it must be worrying. Good that there is a referral made to paediatrician to assess further. Sending a hug. 

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joanne34
Thanks Lara, I have done and we have already dropped the sertraline back to 50mg.  I'm hoping we get the referral to paeds soon so any neural issues can be ruled out.  My gut feeling is that it is the anorexia but I wouldn't want to have missed something.   I just hope she is ok.
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atdt31_US
My daughter’s speech was severely impacted by pans/pandas. Completely resolved with antibiotics. Not saying your child has p/p but a lot of what you describe is consistent. 
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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Vicky2019
we had a lot of violent self harm at one point. I tried giving a cushion - this would be thrown at me but at least stopped her banging her head. However it really stopped when we stopped paying it attention. if the banging started we would walk out the room (checking everything was safe) and sit nearby. Our team told us to go to A&E if was bad - this was not much use to be honest. The behaviour settled when it stopped getting a reaction from us. It was very distressing though, I feel your  worry.
If she is doing it in secret then the other strategies may be more effective for our daughter, like everything you have to see what works. 
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Nicstar4
We had cutting start soon after weight restored. It was just so hard to deal with. We kept hiding the razors, and she kept buying more and hiding them.
it went on for about 9 months. It stopped after an alcohol induced cut at Christmas time that was much bigger than intended, and scared her. She later told us that she could not control how she felt with restricting food anymore, and cutting helped her cope with her anxiety. She also exhibited risky behaviour and I did not know what would happen. Things have been more settled since Jan.
i hope that her therapists are able to address, and that she can let you know when it is happening. Hang in there.
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Torie
wrote:
I asked her today if the intrusive thoughts started recently after she went on medication - she said no.  When I asked her if they'd got worse since being on medication she just shrugged her shoulders and said I don't know.   

In my experience, the person LEAST able to assess this type of thing is the sufferer herself.  So weird.  I wonder if it would help to keep a journal of sorts to record how she seems to you.  And of course an evaluation from a competent psych may shed some light on things.  Sound like this particular med may not be a good choice for your d.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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