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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

Adlih64 Show full post »
Torie
In the US, the commonest  brand of the lactase drops / capsules is Lactaid.  (Not sure if that is available internationally or not, but I'm sure something is.)  If you can get her to drink whole milk instead of soy, that will help get the calories up a bit.  For milk, you can use the drops or the capsules.  For cheese, you would need to use the capsules.  Best of luck. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
melstevUK
I am so relieved that finally you have got that referral. Thank goodness one doctor was able to override your d. 
Well done. You have s lot more fighting to do but this was an extremely important first hurdle to get over. 
Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
Kali

Hi Adlih64,

I'm so glad you got the referral and hope that things will move forward now.
Just wanted to send a note about lactose intolerance. My d. started complaining about it at one point and then wanted to drink almond milk. Nope. I am lactose intolerant and so is my dad and my son so I'm very familiar with how to manage it. It usually runs in families so if there is no one else in your family who is lactose intolerant I might question whether it is the eating disorder trying to get out of drinking milk. I went out and bought her a carton of Lactaid Milk; they make a full fat milk which tastes just like regular milk and has the same amount of calories and added calcium as well. So now she drinks that. I would imagine that there is some sort of equivalent lactose free milk product in the UK. The best hard cheese I have found which tastes like cows cheese but does not contain lactose is called Manchego and it is from Spain and yummy. Any cheese which is not made from cows milk won't contain much lactose, so sheep and goat cheeses don't cause symptoms (for me at least). As Torie notes there are also pills that you can take and chewables; I mostly use those if we are somewhere and I can't resist something tempting which I know has milk in it. For yogurt, try Greek Yogurt or Kefir, those I find to be more tolerable. Butter does not give me any reaction as most of the lactose is removed while processing. Bottled pasta sauces sometimes do contain cheese and I do avoid those and just buy the ones with tomatoes and other veggies. 

Let me stress that there is no need at all to reduce calories in any way due to lactose intolerance.

Here is an article about different foods and lactose intolerance.

https://www.healthline.com/nutrition/dairy-foods-low-in-lactose#section4

Hope this helps. 

warmly,

Kali

 

Food=Love
Quote
ValentinaGermania
Adlih64 wrote:
She is only drinking water and black coffee at the minute lots of water which I think is to quell her hunger.  I will certainly try the smoothies open to and thankful for suggestions.  One of the food groups to go was dairy though which she used to love but now insists she’s intolerant so will be difficult.  I have replaced with soya with limited success in small amounts.  


As long as diary intolerance is not tested and proofed it is not real. A lot of AN patients say they have a lactose intolerance to avoid diary.
Until she is tested you can give her diary and stop discussion with these tablets but another idea is to offer a heavy soya cream "milk"shake that has even more calories then a normal one instead and see if she really goes for the soya one (which she would do if she really believes she has that intolerance) or if she would then go for the smaller diary milkshake (if she only wants to avoid these calories she will do that).

A good rule I learned here was to serve no no-calory-drinks with the meals. So water and tea were o.k. between the meals but for meals and snacks we always served juice or lemonade or milkshakes. Mine drank cola light and I just changed the filling to normal cola and she did not recognise it. As long as the bottles says no calories she could drink it...
Keep feeding. There is light at the end of the tunnel.
Quote
Adlih64
Thanks
Yes, I don’t believe for a minute that she is lactose intolerant it only became an issue since the summer when eating disorder began.  She has been vegetarian for four years and wanted to become vegan.  I was against it being so restrictive so am sure that the intolerance is just another way out of it.  I will look into all the ideas described above, thank you very much. 
Quote
ValentinaGermania
This can be tested at the doctor quite easy. If she is not, serve diary. No excuses. This is the most common way down the rabbit hole - vegetarian, vegan, lactose intolerant, gluten intolerant - she is intolerant against ALL food....
Keep feeding. There is light at the end of the tunnel.
Quote
Scaredmom2019
my D thought she was lactose sensitive as well. Took her to a GI doctor, they did tests and she is NOT. It is ED restricting probably. She now must eat all lactose products I serve. 
Quote
Torie
Adlih64 wrote:
I don’t believe for a minute that she is lactose intolerant 

Makes sense.  Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
Adlih64
Hi,

Attempts at increased feeding is not progressing and can’t get anything more than the one meal although on Sunday she had some bread with soup which was the first in months.  I called CAMHS to chase up appointment and was initially told they would consider referral today and if accepting give an appointment within two weeks.  The same worker called back shortly after and gave us an appointment for Monday morning which has given me some hope.  However, his tone has unsettled me in that he was asking if she is now in agreement and what her weight is.  I don’t know her weight as she won’t tell me and was asked what does she think will happen here.  I have spoken to my daughter and been clear that she will have to engage (seems a bit more accepting) but I’m worried that she will be dismissed quickly if not engaging on Monday due to these questions and previous reaction from GPS.  Can anyone tell me what to expect at first appointment?
Thanks
Quote
mid73
Our first CAMHS appointment was 3 years ago when my daughter was 14. From what I remember. They weighed my daughter, checked her BP and pulse( orthostatic) . They spent a lot of time talking to us. Explained the severity of the condition and the need to start increasing food intake right away. They also recommended part of refeeding should include at least a pint of milk a day. We were given the option of FBT or individual therapy, with a strong emphasis on FBT being the treatment with the best evidence of efficacy.

There was no discussion as to whether she accepted the diagnosis or whether she was ready to engage at all as far as I can recall.

We were then seen on a weekly basis. 

I hope that helps. If you go down the FBT route I wish I’d had the book Surviving FBT by Maria Ganci at the start. 
Quote
Adlih64
Thank you mid73 she has such a fear of being weighed but have told her it needs to be done and think she may beginning to realise now that she’s not fit for school just anxious in case she refuses and we’re sent away.  From what I’ve read I’m hoping we can go with fbt but right now seems impossible.  I will order that book, thanks for your advice.  
Quote
ValentinaGermania
If you have the chance ask cahms if it would be possible to do blind weighing because your d is so frightened about it. Backwards on the scale, the numbers covered. This helped a lot to avoid additional stress with weighing in many families.
She will have a medical check and maybe blood work taken. And they want to know what she is eating at the moment. It would help if you could make a list before the appointment what she ate in the last days.
Write down all your questions because you will forget half of them in that situation...🙂
Keep feeding. There is light at the end of the tunnel.
Quote
mid73
Absolutely agree Tina about writing down questions. My d was sent for blood tests too which all came back ok much to my amazement.

FBT didn’t work for us because my daughter would refuse to even speak and just being in the room seemed to make things worse. With hindsight I feel it would have worked better for us if she’d been weighed weekly and had a chat on her own with therapist and then us parents were seen our own to do the FBT. At the end of the day the parents have to do the feeding and need the strategies to deal with the fall out. For us, talking about it with D present just heightened her anxiety. 

I’m sure they won’t turn you away. Check out the junior MARSIPAN guidelines so you can be clear where she sits currently with on that framework. Don’t be afraid to challenge if you feel you’re being fobbed off in any way. Best of Luck X
Quote
ValentinaGermania
My d did also not engage mit the FBT therapist but I would say it worked for us very well because WE were coached by her how to do the refeeding. We also splitted the appointments and went alone to speak with the therapist because it was lost time to send d there...
I would dare to say in phase 1 and 2 FBT is mostly needed for the parents ðŸ˜‚
Keep feeding. There is light at the end of the tunnel.
Quote
melstevUK
Hi Adlih64,

Clearly your d is accepting now that she has to go to the appointment so it doesn't matter if she is in agreement or not. The clinicians should have the expertise to deal with patients who have been dragged along by worried parents. 
I agree that asking for blind weighing initially is the way to go. You should also be offered FBT as you are in Scotland .
Hopefully they will give your d the message loud and clear that she needs to start eating properly again straight away .
Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
Adlih64
Thank you everyone for your support and reassurance.  Blood work came back from gp today and all was normal which I’m also surprised at.  
Quote
Scarlett81
Hi Adlih64,
Our S was first seen in March this year by CAMHS.  They asked me what he thought of his condition, but this was really just to measure whether he was aware of his illness.  The bottom line was that he was so ill it was irrelevant if he engaged or not.

He was weighed, BP done, they asked for a history of when restriction first started. And for this I went right back to the time he first refused chocolate and started requesting healthy snacks.  At the time we thought nothing if it, but now I can see that this was the start of ED.

They spent some time with us on our own, then s on his own and they gave him some crisis numbers and websites he could use.

They agreed the diagnosis there and then, and the dietician gave us a meal plan.  We were expecting to be allocated a therapist, but in our ignorance, didn't realise that we needed to rescue him from critical illness before therapy could begin.

We were then sent home.  And I remember saying "but what do we do?"  And they replied "find a way to make him eat."  And that was it.  No books, tips, guidance... and that's how I found these fab guys on FEAST.

Every CAMHS area is different but it sounds like they are being pro active and saying the right things over the phone.  Get what you can out of CAMHS.  And what you can't get out of CAMHS you will find here.

Wishing you luck, let us know how it goes!
Xxx
Quote
Enn
Adilh64, 
I know it is weird that that labs are normal. 
 But the labs  will be normal with AN. It is BN and purging and laxatives that can cause low potassium. That is why there is no labs test for AN.  The body is marvellous in maintaining homeostasis. Some docs will do labs to see if there is another medical issue that can mimic an eating disorder. That way if they find another diagnosis they can treat that as well. 
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)
Quote

        

WTadmin