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determineddad

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Reply with quote  #1 
Hello all, I really don't want to be here and I'm sorry that I have to meet all you people as I know you really don't want to meet me but you all are very helpful as I read all of these posts.
My story:

When my d was 18 months old she got a swab test and couldn't stand the gag reflex. A few more times until she was 5 then got up in the middle of the night out of asleep panicking that she doesn't want that swab test anymore. Fast forward to about 6 years old and she must have had a wet burp which triggered fears of choking or vomiting and that was the first time she stopped eating. I called her pediatrician who was completely useless so i felt completely alone. Not knowing at all about the Maudsley approach, but I did just that - phase one. Only because I couldn't see her crash again so I sat next to her almost every meal until she ate somewhat normal again. All the while her anxiety would spiked because of the lack of nutrition but we had no idea and no one to turn to. At this point, I did get her somewhat back to a phase 2 ALL BY MYSELF.  That was February 2014 and then the summer hit which was the worst because she stopped eating again after getting nauseous on a ride at the Jersey Shore. With the same pediatrician we made more mistakes by taking her to a swallowing specialist who really didn't know anything about arfid. Nurse’s practitioner gave her Pepcid, thinking it was reflux because of all of the ‘heart-burn’ like symptoms.  This was probably related to eating less food.  Tried for a few days, but nothing was working so we headed home from vacation to hospital. So at hospital we had barium swallow test and endo which made everything worse. We came home from the hospital and everything was out of control with her separation anxiety and fears and phobias. What I thought was pstd now looks like starved brain according to what I read here. It took several months to refeed again and d to see a therapist. First therapist was a joke as she just wanted her payment. Then we found someone who did work my d using cbt.  He did help using CBT. More mistakes though, as we restored weight and some therapy, she was great for a few years BUT WE never finished step 3. Fast forward to about 4 months ago, my other D vomited in the middle of the where they share a room. Then a few weeks later my son vomited next to her at the table. All the while she would eat a little bit less and a little bit less because of her phobia. Then a few weeks after that she gets a cold with tons of post nasal drip and really nervous about her gag reflex causing her to eat less. All the while keeping contact with her pediatrician and trying to get in with her therapist because we see she is teetering. Then the icing on the cake - which I knew it was going to be mistake but with two other kids it was a difficult decision. Drove to Disney and walked the parks for 4 days which she lost a tiny bit more putting her over the top or below depending how you look at it. Started seeing all the signs like last time with the start of the malnourished brain and bad behavior and bad decision-making and fear of eating. Currently she's out of school and I am trying to refeed at home and having no success at an outpatient program because everybody is terrified of her weight which in the height of her eating and everything being fine she was only 42 LB because that is her constitution. Her paternal grandmother was only 80 lb at 18 years old so this is just how she is built and no one understands that and is afraid to work with her outpatient. Her therapist and most are starting to agree now that inpatient would be far more traumatizing especially with separation anxiety. So refeeding at home and her behavior is horrendous in the morning so my questions:

A - refeeding is worse this time as she simply stops eating and doesn't like the same foods anymore. Mornings are rough as the first meal because she kicks screams punches and slaps me, which is Awesome by the way. Every meal, after she eats it she's back to her somewhat normal self and you could talk to her. What are others experiences with mornings and getting that first meal in?

B - perhaps being completely hopeful but it seems as though my D has a fear or phobia which triggers her to eat less which then leads to her not being able do you think straight which means her anxiety and phobia Spike. Her therapist doesn't think it's a true eating disorder and he actually wrote books on eating disorders. He thinks it's somewhat behavioral and I think it's food-related or lack of it actually. I think it is a touch of ARFID, but only after she loses the weight or her phobia is triggered does it get worse. Any thoughts? By the way my heart goes out to you parents that are dealing with anorexia or bulimia.

C – I know all the tricks with food and which have the most calories but this time around, she doesn’t want anything with calories so I truly have to hide them.  I hope that she will like these foods again.  Any experience with this as well?

D - I have two other children and they don't seem to react too much to her behavior except the normal sister brother thing where they think she's acting like a baby. How did you all deal with other siblings in the house while refeeding and behavior is terrible. Do you think there's an impact to other siblings watching this?  How have your other children reacted?

Other important info: My daughter is tiny, but so are both parents.  She is shy and extremely brilliant.  According to therapist, she is on the gifted side and also too aware of her surroundings which leads to her anxiety.  Normally, when fed, she is sweet, thoughtful and kind.  She always puts her siblings first.  She loves comp cheer, sports and the beach. 

Thank you for reading this longwinded note.. very grateful for your thoughts and time....
tina72

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Reply with quote  #2 
Hi determineddad,
nice to have a dad around here again, although I am also sorry that you must be here. I appreciate to meet you here because I know that if you found your way here you can help your d better. A very warm welcome from Germany.

Your case is very special with such an early start but there are a lot of typical AN signs in there, too. Most AN kids have that shy, brilliant and handsome character. Most sufferend from anxiety years before they got sick. Their brain works different from ours: my d explained to me that she cannot decide what is important and what not and so she always thinks everything is important and she is afraid to miss something. Same with experiences, if she for example has to go by bus to xy she thinks about every possibilty to get there and everything that could possibly happen on her way and that makes her so afraid that she thinks she cannot manage to get there by bus at all.

To help her you do not need to know how this special ED is called. You need to know how to help her and that is something you already did. Refeeding. Congratulations for doing that all alone for such a long time!
I am a bit short in time but I will throw in my 2 cents:
A: Normally with AN the evenings are the hardest time. So we try to put most calories in the first meals of the day. Are the evenings better? Can you put most calories in the last meals of the day? Can you use any incentives? Does she want to go to school? Is there a difference if she knows what the meal would be or not? And now my "every time asked question": did you already try smoothies?
B: With AN it is normaly that: Weight loss changes the brain function. The brain starts to get food phobia. First only one food, then more, in the end they even restrict water. In most cases the food phobia went away slowly after weight restoration. Has your d ever been weight restorated in the last years? Was she always underweight most of the time? Did you experience less food phobia with weight restoration?
C: My d restricted nearly everything including water in the last days before IP and she is now 12 months after WR eating nearly 99% of what she has eaten before. So yes, you can work on that what we call "fear food" and yes, she can re-learn to eat that. Hiding calories is the best way because AN will not allow her to eat it if she knows what is in but she can eat it more easily when she does not know. That is why I asked wether you tried smoothies, because we had a big turn around with healthy looking fruit smoothies with oil added.
D: I have no other kids, I am today thankful for that [wink] so no experiences with that, I am sorry.
Hope that helps a bit and others will join in soon.

Tina72

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
Tali97

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Reply with quote  #3 
Hi determineddad,

Have you read Julie O'Toole's book "Give Food a Chance". It has a section on how she deals with food phobias. It might also be helpful to look at her blog on the Kartini Clinic website. 

Some people have had success by feeding their child in bed before they have totally woken up. A milkshake or similar that would be easy to consume. 

One of my son diagnosis was food phobia what we found that helped was the right therapist and medication. 

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18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
teecee

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Reply with quote  #4 
Welcome determineddad
You are so brave. I feel for you and have no experience of what you are going through as my D is RAN.

I think the point raised about concentrating on feeding more towards the end of the day is certainly worth a try. In the early days of refeeding our dietician loaded complex carbs towards the end to ensure my D could get through the night as if you think about it they go without food for the longest period when sleeping. My D was getting more tired and frustrated as hunger/thoughts were keeping her up or waking her regularly.

This worked for us and only now 3 months later and weight restored are we reducing in the evening (supper is just milk or yogurt now). The idea being that main meals are large enough to get her nutrients from.

Good luck. Xx
meadow

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Reply with quote  #5 
Hi Determineddad

I'm glad you're here.  I'm not glad about your situation - of course not - but you've come to the right place for support and advice. I'm a Child Psychologist myself and had far more useful tips here than from our local (pretty specialised) ED team in the UK. 

Our daughter was only eight at diagnosis and I figure from your timeline that yours is a bit older now.  However, maybe some of our experience is useful.  My girl got diagnosed with anorexia in the end, but had quite an ARFID-ish profile.  Her fear wasn't about choking/vomiting but about blocking the toilet (...and us all drowning).  

In relation to your points......

A. Mornings were the worst time for us as well. We worked this by increasing portion size for her snacks, lunch and dinner and leaving breakfast until last.  Our daughter didn't go to school until she'd eaten breakfast BUT we found that she ate better at school, so we focussed on getting her into class.  Breakfasts were increased further down the line, by which time she was psychologically (and physically) improving and was less resistant.  We had tons of physical aggression as well.  It helped us enormously to separate the ED from our beautiful daughter.  We tolerated most of it, but biting I couldn't put up with and a firm No was enough. Some people on this forum have let the police know. I think it's different for everyone. 

B. It absolutely sounds as though the fear/phobia was the trigger and that your daughter's anxiety is contributing hugely.  In my daughter's case it was getting constipated which set it all off.  My belief (based on what I've learned through this journey including through academic research) is that once triggered - by whatever - in people who have a genetic susceptibility to anorexia, when their weight goes too low, their thoughts get distorted, their anxiety goes through the roof, their mood goes downhill.  Lots of people talk about negative energy balance, so you could look this up.  I'm not sure from your post whether your daughter has body image distortion, whether she WANTS to gain weight etc.  With my daughter, with weight restoration she lost all the distorted thoughts and the panic.  It took a while though. 

C. My daughter's range of foods when she was at her most ill was five items: bread, ham, chocolate (she didn't know about calories), Scotch pancakes and one specific type of mint.  It was a nightmare as we couldn't hide calories in any of that.  We shopped around for the highest-cal version of everything, we spiked her drinks with double cream or Fortisip when we could, and we completely banned all exercise. She gradually started to increase her range as she became weight restored, and she is now - 18 months on - eating a COMPLETELY normal range. 

D. Our other daughter was four at the time of refeeding and she acted up massively.  We tried to keep her away from it all.  We called on favours from family and friends as much as we could (not easy as we had just moved to a new city and knew nobody). My husband and I took turns refeeding while the other spent time with the little one.  I gave up my job temporarily btw.

I'm sorry if this is rambling but I'm very, very, very tired!  Please keep us posted. x
toothfairy

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Reply with quote  #6 
Hi there,
I am so sorry for your situation.
I had written a very long reply but my phone went out of power & I lost it so this will be short.
Basically from what you are saying above, I would think that your daughter had emetophobia which has now morphed into anorexia.
Some of the behaviours that you describe are typical of anorexia.
However in my experience no two people present the exact same symptoms of any of these illness.

Now, right now, though, my view is that the label does not matter as she needs to be re-fed as the starting point.
Here are a few links that may interest you.
https://www.mirror-mirror.org/emetophobia.htm

http://emetophobiarecovery.com/eating-disorders/




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Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #7 
The refeeding is usually the first piece in the puzzle.
I would start with LSUYE - Life stops until you eat.
Basically she has to eat before anything happens, no school, no TV, no phone.
She will have to get her weight right up before she will become in any way rational.
Have you seen Eva Musby’s videos?

While you are doing the re-feeding, I would sugguest researching the next step.
I am wondering if it would be worth contacting Dr Peebles in CHOP and Dr Kaye at UCSD as an example for pointers to a treatment team.
Best Wishes

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Food is the medicine. Recovery is possible.
Mamaroo

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Reply with quote  #8 
Hi

It seems you have struggled with this for a very long time, it is really hard when we see our children suffer so much.

Here are my thoughts. Have you tried anti-anxiety medication, even the over the counter ones are quite good? It might just take the edge off and help her to eat.
My d was fearful of all foods and was refed for months on Ensures plus. It contains 200mL of high calorie (300 kcal) nutrients and enough fluids as well. It is very easy to drink and not heavy at all. It comes in 4 flavours. It might be something to consider for your d.  I got my d to drink Ensures by requesting that she only drink as much as she is able, but to eat more than the previous meal. It took days before she was able to finish one. This is a marathon and not a sprint (as you already know). Because she is eating so little I would give her a daily multi vitamin, omega 3 fish oil, calcium as well as a good probiotic.

D - My d has an older sister and we supported her by making time for her. I would take her shopping (grocery shopping, shopping for a magazine or even just window shopping) once a week and my h would take her out on Sunday afternoons for lunch or a movie. It is important to take time away from all of this. 

Wishing you the best of luck!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Kali

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Reply with quote  #9 

Hi Determineddad,

Welcome to ATDT. I hope you will find support here.

If you want to do FBT with your daughter at home it should be done under the guidance of a specially trained fbt therapist. Here is a page which gives a provider list:

http://maudsleyparents.org/providerlist.html

We are not doctors and cannot diagnose your daughter online but you are right to be concerned. 

Quote:
she was only 42 LB because that is her constitution


However, not sure how old your daughter is but this weight sounds very low. Does she have an MD who is specially trained to see patients with eating disorders? If not, it might be a good idea to have her thoroughly examined by one and see what is recommended. If you want to let us know where you are perhaps some parents can make recommendations about that. What is important is that the weight goes on so that she can thrive and flourish.

Quote:
having no success at an outpatient program because everybody is terrified of her weight 

If her weight is so low that treatment providers are afraid of it, she may need to be hospitalized. 

warmly,

Kali


 


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Food=Love
determineddad

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Reply with quote  #10 
Hello All,

Thank you all for the information provided.  I have gone through each reply.  Responses from the top:

Food/time of day - Mornings are the worse.  Evenings are much better.  She knows and loves food.  Still claims that she wants to be a chef.  I know the tendencies for AN is all about food but she is not really obsessed.  She really likes the challenge of putting a dish together.  She would try anything, even mussels.  With this round, she is more restrictive in what she will eat.  Shakes are out - she hates them.  Only focused on some foods right now - mostly carbs which is frustrating - starting taking vitamins though.

Body - no body image issues.  Just asked by psych. in hospital about a word to describe her body - 'happy'.  She is small and knows it.  She is a flyer for cheerleading.  She is extremely confident with performing on stages with many performances under her belt.  Another piece of this puzzle.

Books - I will look up 'Give Food a Chance' and Negative energy balance - thanks

School - She did vomit in school in 1st grade making it very difficult for her to eat in school.  She did not eat at school at all in 2nd grade.  Started acclimate back in 3rd grade and split this year. 

Thanks for all the help so far, it is greatly appreciated.



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