Diary of putting my family on the RAPH diet

[hrk]

Interesting about the eczema, Sher.  I will say that I finally got the potassium hydroxide from my local source.  We made the laundry soap, which has caster, coconut, and jojoba oils.  H's skin is clearing up quite a bit already.  I wonder if it is the olive oil for him; I know it is high sals (but so is coconut and possibly the jojoba).  Have you had any change in products lately?  How about your sunscreen, since it has gotten warmer?

Cleure has a toothpaste that is flavor free, if you are searching for something that is going to be dye/flavor free.  We use this one..  http://www.cleure.com/Toothpaste-p/den01.htm  They also have salicylate free skincare products, too.  Not that you have to use them now, but if you find they are super sensitive, you may think about it down the road.  

[charmie]

Sherry you're so brave taking on this project.  I know you can do it!!  No advice from me.  But loads and loads of support xxx

[sherry lynn]

Thanks guys. Today was a rough day. So much to be done, so little time.
Thanks for all the support. I have a ton of stuff to respond to so I will do my best to get on tomorrow during quite time. There was no quite time today because Emory fell asleep in the car, so I just let Lyle watch a movie next to the kitchen while I cleaned and cooked away

[deb]

I'm following along so I can learn.

[hrk]

Dropping off more hugs.  Hope today goes well.  XXXXXXXX 

[sherry lynn]

Deb - (in Oz) it is so complicated to know. It's the same way with Lyle. He also has Oral sensitivity (which is common in LO's with speech delay/issues) But, I'm inclined to believe that some of it IS behavioral/control. But I don't and never really have made a big deal of him trying or not trying foods. But, he seems to sleep grab a hold of that little bit of control that he can. I was also wondering if maybe you are a responder as well. (Like Chris is here) The reason I say that is because I remember you talking about sugar being an issue. So, I was wondering if it's actually maybe the additives/preservatives in the things you eat with sugar instead. That might help you with that issue to figure that out.

Elo -
Lyle has NEVER eaten mashed potato. Even back when he was a good (great) eater. That was my first clue that something might be off. LOL. What kid doesn't eat mashed potatoes.

He really only eats/drinks about 7-10 things. That might seem like it's an exaggeration. But, I promise you it's not. It's so bad that he is working on it with his speech therapist

I can't find ANY safe rice crumbs. I have looked. So I guess I will have to sacrifice some of my homemade bread to make crumbs??
I also can not find rice bran. And the worst one, I can not find ANY safe butter substitute. They all have something they shouldn't have in them.

I just have to throw this out there. I HATE onions (all kinds, even leeks and shallots). Therefore, I am really suffering.

Are you talking about the failsafe booklet that we can print off line. I did print that out. I have it. I also have the larger cookbook that you can buy.

I was thinking that maybe you could send out what ever info would be helpful soon? Just because it will take about 3 weeks to get here, won't it? Please let me pay you for some shipping (at least) this time

The only chicken he will eat is Mc Donald's chicken nuggets     -(which I think cause a major reaction).
The only home sources of protein are yogurt, milk, bacon

Deb (in Maryland) Do you know where we would find gee here in the states. I think you've learned a lot from following other posts. But, feel free to ask any questions.

Jean - I found a tooth paste at the health store that said mint-free, so I bought it (for an arm and a leg) but then I got home and it has licorice which is also high. Sigh. We've been using it anyways.

[hrk]

Ditto on the mashed potatoes, here.  :-)  I can get him to try about everything else.  (At least one bite.)

I think chicken can be dry, so chicken issues maybe a texture/low tone issue for us.  Plus sometimes he is really chewing it for a bit; no longer 30 mintues, though!  More like just a couple.  He will take a bite or two, and I call that a good enough just getting that bit in there to try.  Inch by inch, you know?   I have boiled it in water, cooked in oil, baked, etc.  Is there any form he will tolerate more?

I think using your bread for crumb is a good idea, until you find another source. 

Hugs for the onions!  :-(

Did I remember that someone said cashews are ok?  I know the natural food store has a chashew spread, or maybe make your own?

See how the toothpaste goes.  It is likely better than the other stuff.  :-)

I couldn't find any butter substitute that was soy/dairy free, when we did the soy/dairy-free trial.  It was either or...  I went to oils ( safflower/sunflower) for cooking.  Is there a natural food store nearby where you could ask?   

And for spreads, I only really used applebutter.  I know pear is suggested (but I didn't have a lot of info back then), but I did peel the apples and bake them in the crock with a tad of sugar.  Then I put it in the refrigerator and used that as jam.  Trader joes has the organic apples by bag, and I used those for a reasonable price ($4) instead of paying $8 for the organic applebutter at the grocery store.  I made twice as much for half the price.  An option down the road, perhaps, as that many organic pears was a bit more spendy. 

[deb]

Ghee is often found in Indian groceries, but you can clarify butter by melting it SLOWLY and using the clear stuff on top - the solids sink to the bottom. Here's a recipe, and Google will net you more is you search "Make your own ghee." http://mideastfood.about.com/od/dipsandsauces/r/ghee.htm

[EloysH]

I can't find ANY safe rice crumbs. I have looked. So I guess I will have to sacrifice some of my homemade bread to make crumbs??
I also can not find rice bran. And the worst one, I can not find ANY safe butter substitute. They all have something they shouldn't have in them.

This is where the US failsafe forum can help.  Getting a butter sustitute is pretty essential I would focus all my energy on that.  Crap, I feel like sending you over a truck load of rice crumbs.

Hugs Sher, this is going to hard if he is currently eats 8-10 foods.  Will this diet be cutting out any fo those 8-10 foods?
 

[Deb_in_oz]

what is the deal with the mashed potatoes - mine never ate them either - did i miss some comment or is it the actual potatoes you were discussing or the texture. as awful as everything with alex is she added mashed potatoes into her diet at 7 years old which made a change from all the plain pasta (never oiled or a red sauce or butter - she avoids butter completely actually - only plain or with simple homemade cheese sauce that is just flour butter milk and cheese).

sherry - interesting that you mention the sugar, me possibly having issues of my own etc.  we had friends here this weekend and she talked about how she was diagnosed ceoliac (?sp) last year and it was thought to have resulted from postpartem thyroiditis. i had that after alex was born and have been on meds ever since + my whole body, how i feel, my moods, tummy troubles etc all came afetr i had kids.  as my friend was talking about her physical symptoms etc - dh immediately said - that sounds like you  - i think i might have to look into some testing and information for both alex and myself looking at what COULD be going on and then looking at what we can do (what things can be tested for vs food elimination diet).  i saw at the mall in one of the health food shops there is a woman who comes once a week with a machine to do testing for food sensitivities and allergies.  do you think that is worth doing - a full review etc costs $120 i think and is not covered by insurance. or i could talk to the nutritionist we saw and maybe take the next step through her to examine food sensitivities (that was her next step if we made no progress with the food trying..)

what is a good first step??  (not meaning to hijack - i will go back to listening after this i promise)

[sherry lynn]

Deb - I would def. get tested. I am going to recommend it to my sister as well because she has the thyroid problem as well after her last child. If I remember correctly there does seem to be a link between the two. She told me that she is feeling bloated after eating these days. I know Eloys has had a lot of success with going to a nutritionist. I would bet the nutritionist would recommended testing as well though. The book says that you need to get tested for a celiac disease BEFORE you go gluten free or the test will not be accurate. You aren't hijacking at all This is a learning process for all of us. It also reminds me that I need to go get my thyroid tested, which I've been putting off.
Oh, and you are write, we were talking about simple mashed potatoes. Glad to know we aren't the only ones with LOs who won't eat them.

Ok, I have to write a list of everything we've cooked because it's coming up 

Cashew paste (butter) twice. The stuff at the stores is not safe because it's roasted. So I made my own.
Carob cashew paste
Pear Jam
Pear chutney
Chicken stock
Pear/chive muffins
Bread 2 loaves so far (Lyle ate it today. YEY) That is a huge victory for us.
Blanched green beans
Vanilla Cookies
Golden Syrup (can't find in stores here)
Golden Cake
Pear Juice (Lyle won't drink it     but we are going to try to keep offering it EVERY day)
Honey comb (didn't turn out - too much humidity here I think)
Potato/Leek fritters
Plus a dinner for each night.

    I've been busy.

Elo - the poor people at the healthy food store. They helped me so much. I just couldn't ask them for more help. I spent about 3 hours at the store, and I checked EVERY label, there is no alternative in this town. I think we are going to trial dairy first. Gluten first would be a cost saving measure. This flour is soooo expensive. But, I think for Lyle we will do dairy first.

Today he had a much harder day with it. We went out as a family to have some down time. We went to the state park and went swimming in the river. When we got in the car. He was screaming. PLEASE MOMMY, please can we go to the store and buy some milk. I just stayed calm and talked to him calmly and it past.

Can I do gee before we challenge dairy?

[hrk]

i saw at the mall in one of the health food shops there is a woman who comes once a week with a machine to do testing for food sensitivities and allergies.

Deb, I would wonder about the person's qualifications to making such diagnosis.  If it is something like the bioenergetic screening, I personally would save your money for a nutritionist/allergist..  I will add that it is just my opinion.  We went to a ND (natropathic dr) for H, and I felt it was a hoax after doing some internet research on the device.  You can find out what it is exactly and then do some research.  Based on his test results, the nd sold us a bunch of products to help (uh, $100; I am embarrassed to say, but am saying to maybe help someone else).  They were not able to be returned.  THEN the kicker to the story is that she actually sold me products that have alcohol in them for my son.  Honestly, who would do that and not even mention the content???  WTH!  Never used them and never went back; dh had gone with to the apt too.  And then we saw an internet story about her in the news facing legal action by a woman who was being treated for some mental health issues.  I am glad we didn't continue to see her.  

I personally saw a different naturopath (I wanted to see her before bringing H), and she suggested that I do $1200 worth of testing to look for allergies (out of pocket, as the nd services couldn't be billed through our insurance).  She said "she" needed to do them; and she could only recommend the supplements she sold.  I brought the info to my regular dr, and she said that I have had a lot of those tests already done.  I decided not to go that route, and the dr had also mentioned that she had heard of her patients being referred for chelation therapy (or other therapies she has never even heard of).  She contacted the state, and since then I have seen the FDA has come out with a warning against chelation.  I thought I would mention it, in case that is one of the things that is suggested.  Then you can see the recommendations in your area for any suggested treatment (this or anything else).  http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm229320.htm  

It is hard to know where to turn for help sometimes.  Of course these are my own experiences, and I am sure there are good nd out there.  I think making an apt with your dr and nutritionist is a good idea. If there is a place or a treatment you want to try, perhaps bring that to the apt.    

[hrk]

Sher, you are doing an AMAZING job.  XXXXXXXX  Hugs for the milk meltdown.

Eloys, as for the failsafe forum, this is it for dairy substitutes; pretty slim.  It is from oct. 2010.

Fresh Mozzarella from Wild Oats, packaged in water with expire date
Organic Valley brand milk and cream cheese, butter (DON’T use any from plant 55 1224 may contain corn contamination)
Shedd's Willow Run margarine appears to be Failsafe
Ranchero Cacique Queso Fresco, seen at  Wal-Mart
Marie’s cream cheese in a sausage roll, seen at Wal-Mart
**The only cheeses which are failsafe are fresh white preservative-free cheeses like ricotta, cream cheese and preservative-free cottage cheese if you can find it (Jalna).
Pacific brand rice milk but be sure to check the label

Sher, am I remembering you are doing soy free, too?  I have used a margarine that is by earth balance for my cousin's son that is dairy free.  It is pretty mainstream for vegans, so I bet it would be on the list if it was safe, though.  I think organic valley is a bigger brand name?  I wonder if you can find by calling a bigger store.  If they have it (and some other things you need), then you could make a trip there, perhaps.  An idea that is a pita, I know.   

[Deb_in_oz]

thank you so much Jean!

[huntersmummyinoz]

you're doing GREAT sherry, hang in there!! more hugs for the milk meltdown and well done talking him thru it.

ghee - yep you'd need to do the dairy trial first, but it is meant to be well tolerated even by those with dairy intolerance. what ingredients are you finding in dairy free butter/margerine that isnt suitable?? i know i was avoiding df marg with vegetable oil in it when i first went df/soy free with kingston as it was told to avoid this by gp due to soy oil. however, once i started seeing the dietician who specialises in the rpah diet, she says soy oil and also soy lecitithin/emulsifier are totally fine. they are so highly processed that the protein is broken down so much that it is rarely a problem, even for those who have soy allergies.

oh and hunter HATED mashed potato too! he's only just started eating it in the last couple of months. def a texture issue for him too as he hates mince/meatballs etc too.