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krausekl

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Reply with quote  #1 
Hi there. My son is currently in phase 1 of Maudsley and has reached a point about 10% above his EBW. He is not ready for exercise or choices yet and We are plating all of his food. Am feeling very stressed about starting back to school (he is 14 and in middle school) and having to plate his breakfast super early in the am to give him time to eat it, go to school, then prepare before and after lunch snacks and a “cold” lunch that I will be attending - our program requires a parent to eat with the child for lunch, and making sure it all adds up to his required 4000 calories at day’s end all while teaching full time. He is in the partial program now, so on top of this I have to plan for two off days ( get a sub) for two of his days at the clinic, My husband covers the third day. He and I are trying to balance the load, but he is also a full time teacher who coaches after school. OUR stress levels are maxed out, and we both are having trouble working through it without conversational melt downs (neither of us are ver good listeners right now). Son is actually doing very well - upbeat, talking more, nervous but excited about going back to school. Appreciate empathatic replys but would really love suggestions from other parents of ways they balanced the load in phase 1.
Foodsupport_AUS

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Reply with quote  #2 
You have made amazing progress in the few months since you joined us. Cheering you on all the way from Australia. 

It does take a huge toll on the whole family doesn't it? Many parents have taken leave during this phase, because it just takes so much effort to keep everything going. I continued to work but reduced my load substantially to allow all of the stops for meals and preparation. Asking family or close friends for help with non food things can also help. 

It is normal to want to get back to life as normal as soon as possible but having you/your husband there and vigilant will really be helpful as he moves into phase 2, especially as it is often two steps forward, one step back.

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mjkz

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Reply with quote  #3 
Wow.  I can see why you are so overwhelmed.  Can you take a leave of absence until he is at least out of partial?  I agree with Foodsupport.  You have made amazing progress!!!

Short of taking a leave of absence, do you have any family nearby to help?  My sister-in-law was a saint during refeeding and was able to run my daughter around, do shopping for me, etc.  I had to do all meals and snacks but she made food from recipes for me and I froze things in the amounts needed to feed my daughter.  I also resorted to a lot of protein bars, smoothies, etc. as they were fast, easy, and gave some variety.  There are some really good recipes on the forum for muffins that pack up to 1000 or more calories per muffin, granola bar recipes.  They were a life saver and my sister-in-law made them faithfully for us.
krausekl

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Reply with quote  #4 
To add calories: am using coconut oil, olive oil, whole milk yogurts and heavy cream.  protein powders to help balance it a bit.  yes - protein bars as well, and lots of nuts.  Thanks for the tip about the muffins - I will have to check that out.  No family nearby - we are older parents - son was a premie - had him at age 42!  My husband and I worked out a plan to get us through the morning - and I think that will help lots.  Another mom from a facebook group suggested using online meal planning and grocery service - that sounds like a good idea as well. Putting it all in my notes!  Thanks!
juditab

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Reply with quote  #5 
If you are in the States, apply for 504 status with your school. This will give your child protections under the Americans with disabilities act. By law they will be required to give reasonable aid to assist him with impairments that limit a major life activity, like eating. Your school should should have a 504 coordinator.

Being helpful wasn't exactly the first inclination at our daughter's school, but we kept asking for what we needed and eventually a counselor was assigned to supervise her lunch, though any adult would have been ok and we made it clear that we had no expectation of enforcement, just a report of what she didn't eat. Another thing that helped a lot was that she was given a daily pass to go to the nurse's office for a high calorie drink between two classes in the mid morning, with a possibility of adding another mid afternoon.

Eventually, my daughter's ED started pushing the limits with the councelor and she began throwing out her food so we have ended up supervising the lunch by ourselves anyway, but it did work well for a few months.
juditab

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Reply with quote  #6 
Here is a website about 504.
https://www2.ed.gov/about/offices/list/ocr/docs/hq5269.html

The 504 has helped with more than the eating. The ED has had a very severe effect on my daughter's ability to concentrate and she is allowed to turn work in late.
Kali

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Reply with quote  #7 
Hi Krauskl,

Yes, I would agree that looking into and setting up a 504 could be helpful. In order to set one up you would most likely need a dr. note outlining the diagnosis. (It may vary from state to state, I'm not sure, but we needed that; I had one for my non-ed child at one point due to an injury) Then I spoke with both the assistant principal and school nurse, and accommodations were set up. You should have the opportunity to request any specific accommodations you might think could be helpful: lunchtime supervision, maybe in the nurse's office later on in his recovery when you no longer are coming to have lunch with him, additional time to turn in tests/homework if necessary, and being excused from gym/phys ed. Being bused back and forth from school if exercise is an issue and you don't already live within a busing zone. Being able to look at the health curriculum to determine what messages are being sent about food and if there is "healthy food" talk which in reality is about not gaining too much weight, having him excused from those classes as well. And if for some reason as you move forward, your son is not able to attend school the school is obliged to send a tutor home for him so he can keep up. At least it is in our state. Again it may differ depending on where you are. I know it is a federal law but am not sure how much of it the states administer or decide upon.

Not sure if you are eligible for some family leave or can afford that but could that be a possibility since you are feeling stressed?

warmly, 

Kali

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juditab

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Reply with quote  #8 
The meal times really drag out don't they. Our therapist had us put a timer on the table and tell our d that if she didn't finish the meal in a reasonable amount of time, she would be served extra food or an extra high calorie drink. This strategy worked pretty well at shortening the time we spent at the table.
krausekl

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Reply with quote  #9 
Quote:
Originally Posted by mjkz
 really good recipes on the forum for muffins that pack up to 1000 or more calories per muffin, granola bar recipes.  They were a life saver and my sister-in-law made them faithfully for us.


Could you direct me to a link or spot on the site where I can find the recipe for the muffins?  Thanks!
tina72

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Reply with quote  #10 
Smoothies are something you can give him for school and it looks healthy and is really "in" (I can say this for Germany). You can say you need that for vitamins for example. You can blend tons of fruits and add canola oil and then put portions into the freezer. Just get them out in the evening and shake them well before filling into a bottle.
We did the transition to school in two steps: first she was only there for morning classes and we took her home for lunch. Then when that worked we took her back for afternoon classes. We did not allow to eat in school because it would not be supervised in our case. So if possible try to get the schedule down a bit and try to do lunch at home. School is not the most important at the moment. If needed as incentive, that is o.k., if it makes too much stress, get that down. They do not miss that much and they can get that stuff later. A healthy brain learns more quickly. My d was often too tired to follow the lessons.
Tina72
mjkz

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Reply with quote  #11 
Here is the high calorie meals/snacks thread.  Quite lengthy but the muffin recipe is on page 1.
http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?highlight=high+calorie&pid=1302741439#gsc.tab=0
Torie

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Reply with quote  #12 
Quote:
Originally Posted by tina72
Smoothies are something you can give him for school and it looks healthy and is really "in" (I can say this for Germany). You can say you need that for vitamins for example. You can blend tons of fruits and add canola oil and then put portions into the freezer. Just get them out in the evening and shake them well before filling into a bottle.


I agree that smoothies are great, but I'm a little worried that the oil might separate out by the time lunch rolls around.  So I would give this a test run out of sight of your kid. xx

-Torie

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tina72

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Reply with quote  #13 
Yes, Torie, it seperates a bit but you don´t see that it is oil.
It does seperate in the fridge as well when you keep it in for some hours.
I told my d that she needs to shake it well before drinking because the vitamins and the fruit meat needs to be mixed up again and that was it.
They don´t even expect that there can be oil in it and therefor that was no problem. But be careful he doesn´t see you producing them [wink]
Tina72
krausekl

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Reply with quote  #14 
Quote:
Originally Posted by mjkz
Here is the high calorie meals/snacks thread.  Quite lengthy but the muffin recipe is on page 1.
http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?highlight=high+calorie&pid=1302741439#gsc.tab=0


Thanks, tried to find them, but couldn't, even when I searched several pages deep and looked at the link for high calorie suggestions.  Is there a work around?
mjkz

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Reply with quote  #15 
Let me just make it simple for both of us

Muffin recipe:
Ingredients:

1 stick butter (8 tablespoons)
1.5 cups sugar
2 eggs
2 cups flour
1 teaspoon salt
half teaspoon baking soda
1 cup mashed banana (I use 2 bananas)
half teaspoon vanilla
half cup sour cream
plenty of chopped walnuts or pecans (I don't measure these, but probably put in at least 2 cups)

Mix together the butter and sugar, then the eggs. Mix together the dry ingredients first, then add to the butter/sugar/egg mixture. Next add the banana, sour cream, and vanilla. Last add the nuts.

I put all of this mixture into a non-stick pan that has 4 LARGE muffin tins. That is key. Just make a huge muffin look like the normal size...none of this small cupcake sized muffin business!!! Each of these muffins should have about 1000 or more calories. And they are delicious! My d asks for them now even though she has moved on to less calorically dense breakfasts!

Granola Bars:
MY OTHER RECIPES

5 Ingredient Peanut Butter Granola Bars

Ingredients:

  • 4 cups rolled oats
  • 2 tablespoons chia seeds (these are optional, I just love the texture they give)
  • 1/2 cup unsalted peanuts, chopped
  • 3/4 cup natural peanut butter, melted
  • 1/2 cup brown rice syrup (honey works too!)
    add ins:
    • chocolate chips
    • wheat germ
    • flaxseed
    • dried fruit (I made some with cherries!)
    • other nuts
    • seeds
    • coconut

Directions:

Preheat over to 350.

In a large bowl, combine oats, chia seeds and peanuts. Add brown rice syrup (or honey) and mix to combine. Add melted peanut butter and mix until moistened. This works as a perfect, simple granola bar, but you can also throw in any add-ins at this time. Fold them into the dough. You may need to get in there with your hands and work the granola dough! If dough is still too dry (this can depend on your ingredients) add more peanut butter or syrup (or honey) 1 tablespoon at a time until moistened.

Press dough in a greased (non-stick spray) 9 x 13 baking dish. Bake for 25 minutes.

These would also work as a great no-bake granola bar, but I liked how they came together and the chocolate chips melted as they got warm. If you want to make no-bakes, simply press the dough into the pan and refrigerate for 60 minutes.

another Granola bar recipe:
5 cups of dry ingredients

I included 2 cups of macadamia meal ( got the nuts on special and blended them)
1 cup of crushed up scotch finger biscuits
Half cup of shredded coconut
Half cup chopped dried fruit
1 cup of oats ( so you can call it a muslie bar)
1 tin of condensed milk
Half a cup of melted butter

Mix all the dry ingredients together
Add the melted butter to the condensed milk
Mix the two, pour into slice pan and cook for about 25 - 35 mins in medium oven or until lightly browned on top

You could use any combination of dry ingredients such as almond meal, crushed Oreos, granola ....anything


Another Granola bar:
"Back to School" Homemade Granola Bars

  • 1 cup rolled oats (preferably not instant oats)
  • 1 1/2 cup crispy rice cereal
  • 3 tbsp flour 
  • 1/2 cup pumpkin seeds
  • 1/2 cup roughly chopped pecans
  • 1/2 cup dried unsweetened coconut
  • 1/2 cup dried cranberries or raisins
  • 1/4 cup chocolate chips for the top
  • 1/2 tsp salt
  • 1 tsp cinnamon 
  • 1 tsp vanilla
  • 1/2 cup butter
  • 3/4 cup honey
  • 1/4 cup almond butter or peanut butter
  1. Place the oats, pumpkin seeds, and chopped pecans on a baking sheet and toast for 15 minutes in a 300F oven, stirring once or twice. Leave the oven on.
  2. In a large bowl mix the crispy rice cereal, flour, coconut, cranberries, salt, and cinnamon. Add the toasted oats mixture and mix all together.
  3. In a small saucepan, bring the honey and butter to a gentle boil on low heat. Simmer on low for 5 minutes, stirring often. Remove from heat and add vanilla and almond butter.
  4. Mix into the dry ingredients and incorporate completely.
  5. Line a 9 x 13 inch baking pan (or 8 x 8 inch pan if making half the recipe) with buttered parchment paper. Pour the mixture into the pan. If desired, sprinkle chocolate chips on top. Use buttered hands or an oiled spatula to press mixture firmly into pan.
  6. Bake in 300F oven for 30 minutes, checking at 25 minutes as some ovens bake more quickly than others. Allow the bars to cool in the pan completely before cutting them.
  7. When completely cool, remove the whole thing from pan by pulling the parchment paper at the ends.
  8. Place parchment and bars on a cutting board and cut into slices. The bars will keep for several weeks and for longer in the fridge (or freezer).

I usually cut into 12 which makes each serving approx 300 calories.   I add more chocolate chips than required.  To boost calories more, I I have used almond flour.  Can change up nut variety to your preference.  Can press in more coconut on top.  Can drizzle with chocolate or dip in chocolate after baking.  Can spread peanut butter (or other nut butter) on top when eating.  I make these all the time.  Everyone loves them and they are a healthy snack in DD's eyes.

krausekl

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Reply with quote  #16 
Thank you to everyone who replied with such helpful suggestions!  We are blessed - both my husband and I are teachers, and have excellent connections within our school system.  To those suggesting the 504 - thank you.  My son qualified years ago for special education (LD) in the states, and has lots of support.  The Principal and vice Principal were wonderful.  They set us up with a room to eat in for lunch, and we made it through the first two days.  Thank you for all of the suggestions for high cal foods - still searching for ones that have low volume but pack a punch.  He is also triggered by heavily sweet foods, so I have to be careful not to use too many things that his ED might view as a threat - especially in the school environment at this point.  We are providing challenge foods daily, but at points in his schedule where they are not accompanied by so many other distractions or stressors. It was wonderful to have so many good ideas to peruse, and I DID find a recipe for bars made with muesli that looked like they might work for him.  You are all amazing!

And thank you caregiver - LOL - I found the recipe by googling it - which got me back to the page you had suggested but closer to the recipe - so I found it and copied it, and then you posted it here!  I am copying the other recipes as well - I think I could take out the sweeter items and sub in other things that he'd find palatable.  These will make lunch prep so much easier!
krausekl

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Reply with quote  #17 
Quote:
Originally Posted by tina72
Yes, Torie, it seperates a bit but you don´t see that it is oil.
It does seperate in the fridge as well when you keep it in for some hours.
I told my d that she needs to shake it well before drinking because the vitamins and the fruit meat needs to be mixed up again and that was it.
They don´t even expect that there can be oil in it and therefor that was no problem. But be careful he doesn´t see you producing them [wink]
Tina72


Thanks for the smoothie refs!  I have made many different kinds of smoothies for him in a similar fashion to what you've suggested.  My go to smoothie is greek yogurt, peanut or almond butter, coconut oil (virgin, organic - I melt it in the microwave first) and a scoop or two of protein, with fruit added, it's yummy, and the coconut oil will harden in the smoothie (especially if you freeze the fruit and add it to chill the smoothie) so you don't have to worry about the separation or visual as in the case of other oils that don't harden.

I have to be careful with smoothies, as he tends to have the hot flashes more after these drinks - I think it's the carbs and the metabolic changes as he continues to grow and develop.  He's grown almost an inch!  We are definitely celebrating that!
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