Diary of putting my family on the RAPH diet

[sherry lynn]

Things are ok. We are hanging in there. I don't want to get my hopes up, but things seemed better today.

Sleep has gone off since we started though. The very first day we were on it, that night/morning he had an EW and we haven't been able to get back on track yet.

Emory is loving life, and loving this diet  

[EloysH]

yay Emory!

Jean it wasn't scientific enough for me to try     and my naturopath personally doesn't recommend it or do it.  I trust her opinnion, she just sticks with foods, supplements and herbs - the nutritional holistic side of things.

[hrk]

Sounds like good advice, Eloys.  That is exactly what I mean about finding a good naturopath; they ARE out there.  :-)

[hrk]

Hoping things are going well, Sher!  Great news that Emory likes it.  I hope Lyle is adjusting, too.

Here is another random suggestion with regards to our cooking strategy.  I have found that I really have to do quite a bit of cooking once a day right now.  I am lucky enough to be able to do quite a bit at nap, or H is willing to help after nap (if it needs a bit of prep).  Or we come in an hr before dinner, and I prep like mad while he plays next door in the playroom.  I cook a good sized dinner, so that dh has some to take to work the next day.  And I usually try to make enough for Heath and I to have lunches the next day as well.  If there isn't much for leftovers, I do something easy like sandwiches. 

XXXXXXXXXXXXXXXXXXXX

[hrk]

I was also thinking about rice crispies or rice chex to make rice crumbs.  I don't have a box to check the ingredients of either, but it was an idea.  Maybe an organic variety in the specialty aisle will be ok.  Also was thinking that the panko type bread crumbs may have a gluten free variety (you will have to escape any other preservatives/additives, I know).

http://www.b2bworld.com.au/hp/webcontent18.htm
This site sells orthoplex children's formula, but you can see there is a hefty shipping charge.  Perhaps a trip to The Vitamin Shoppe, if you have one.  We have one right next door to Trader Joes.  I wonder if they can get any of them?  Maybe they are marketed under another name here, but how would anyone know.

I don't see any suggestions made by RPAH about what to avoid in the supplements, or what makes those particular supplements ok to use, iykwim.  If they said exactly what to look for, that would be helpful.  I looked through most of the list, and everything has au in the address.  Some may ship overseas, but it looks pretty pricey.  

Perhaps a post to the usa group would stir up an option.  

I think you are 11 days in.  Over a third of the way until you can start some trials!  You all can do it!!!!  Can you feel the peptalk?  

[hrk]

So, I see in the far right corner a list of what to avoid.  I wonder if you head to the vitamin shoppe with the list of things to avoid, perhaps you will come up with something.  

Hi Sher!  I think you are checking out the thread.  I thought I should post what to avoid, in case others are looking but don't have the info.

Avoid products (multivitamins) containing:
megadoses, PABA, colors, flavors, herbs, bioflavonoids, rutin, kelp, or hesperidin

[hrk]

I stopped at the vitamin shoppe with the list.  I found one that was a partial match, but it had strawberries/grapes/other fruits as natural flavoring.  It also had some herbs.  No real solution there.  :-(

[sherry lynn]

I wrote a huge log post out yesterday, and Emory erased it
I just hopped on her after getting done with work and he just woke

I was planning on letting him take a little extra nap today because both nights have been really short for him, so of course he decided to wake anyways. Sigh.

We just went ahead and did our best and bought some vitamins. We can't go with out them much longer. We ordered from vitacost on line. They had a no preservatives, etc. label on them. There are some natural flavors. When we get them I'll look closer at the label. I may regret it, but I did my best.

Things are not going well at all here. Lyle has lost 5 pounds in ten days. My mother's instinct was that he would not just start eating other things once he's favorites when away and I was right
On top of that Gluten Free does not go well with a boy with texture issues. The last two times I made pancakes the centers did not come out right. They were way way to spongy.

So DH went to the store last night and bought a good prepacked mix and they turned out pretty good this morning. He wouldn't even bite it. Just kept crying too yucky etc....

Well, Emory keeps fussing, usually he will just lay there.

Life with two OT boys is not going well. Lyle has dropped 45 min off of his sleep at night. And I guess nap cutting has caught up with Emory, or maybe because Lyle is so stinking loud in the morning 

[hrk]

5 lbs in 10 days is significant.  :-(  I don't know what to suggest, but I do really think finding some professionals may be helpful.   Is Emory's "good" dr back, so you could ask for some leads (nutritionist/gi/allergist).  Or perhaps the ot would have some more thoughts about other professionals to "enroll" in this task. 

I wonder if hunger is behind the reduced amt of sleep?  Do they want to eat/drink earlier, or seem to be hungry when waking? 

I did see this book (and I mentiond it on Kirry's thread a ways back), but I wonder if it would have any ideas for types of professionals that may be able to shed some light and expertise.  http://www.amazon.com/Food-Chaining-Feeding-Problems-Child%C2%92s/dp/1600940161/ref=sr_1_1?ie=UTF8&qid=1311102804&sr=8-1  One reason some of the parents mentioned they didn't like this book is that it focuses more on kids with some serious eating issues (so not for the general picky eater), but I was thinking it may give you some leads.  Perhaps read the first review on this book; it is by one of the moms in the book and she mentions EE being behind feeding issues for her son.  Perhaps the right professional can help you turn over a few more stones or help you through the ed. 

You are a super mom, sher.  Got to run...time to take H to ot.  XXXXXXXXXXX

[sherry lynn]

The OT is moving. So the SPL is helping us with all this while we wait for the new OT to start. The SPL is great, and he is trying new things with her, etc. It's just really slow going.
We only have one session booked with this OT before she leaves because we would rather save some of our sessions that are covered by insurance for Lyle to have time to bond with the New OT. I like the OT he has now, but I don't love her. She's not proactive (you might even say lazy) but she is good with Lyle and she has helped him come a long way with some of his other sensory issues.
So, we introduced milk back in today. The RAPH says at least two weeks. We are two days shy of that. But, to be honest if he is hungry and OT I don't know how we would even know that he has reached base.
He said a 9 word sentence this morning. He's speech is really doing well. So that gives us something to look at. If his speech drops or he starts drooling more then I think that will be some symptoms to look for regarding milk sensitivity.

Please  give BW vibes that he will pass milk. I really need him to pass milk. That would be more important for us then even gluten.

So far we are pretty sure he reacts to nitrates and propionates

Thanks Jean for your post. I needed it today. *hugs*

[EloysH]

Oh Sherry, I hate that this diet is taking a turn, so Lyle is just not coping with the change of foods, and now has lost weight.  I know weight loss on this diet for adults is common and ok, but for kids I would think that's it's not healthy.  Especially if it is due to just not eating enough as opposed to cutting out the junk.  They say the weight loss for adults is attribured to getting all the packaged foods out of their diet.  

Hugs for his speech getting better.

I have no reference point for those on the diet and with food aversions/texture/taste sensitivities and what that means.  I am wondering if you will get nearly as much bang for you buck with putting him on just additive and preservative free (the simple apporach) and as you are doing very quickly bring back wheat, dairy and other allergins that were exlcuded.  That way he will still have his favourite foods but without the major chemicals.      The experiments conducted in Australian schools - where the major improvements were found on childrens behaviour was through the kids going on the "simple approach" diet.

 So as far as nitrates and propionates and all of that are concerned, really if you are looking for a short cut I would assume sensitivity to all preservatives and addtives and exclude them from his diet for a long time and do food challenges at your leisure. - If it does  not compromise losing some of his staple foods.   Really there is no upside to having these things in your diet except for convenience.  Do you still want the food challenge protocols on how to do them?? 

Dairy challenge is one glass of milk or more every day for 7 days.
Wheat is a bowl of pasta on day 1-3 plus 1 slice of wheat toast without any preservatives or additives for day 4-7.

Nitrates is hard to challenge without confusing amines in the picture.  I think  you need to do the amines challenge first, as nitrates are basically in all high amine foods.

Amines are challenged by eating 2 bannanas a day and 100g chocolate  (if you want) - preservative and additive free.  Between each challenge one needs to let symptoms settle then wait for 3 clear days and start again.  All hard to do when you have a boy struggling to find things to eat!

 
Are you able to get on the FED UP website again - now there is a forum running rather like BW - it is not email groups anymore. Maybe they can point you to US dieticians specialising on the diet?  

((hugs))

[hrk]

I hope the dairy is fine.  That would be huge.  YEAH for the 9 word sentence!!!! Whooohooo!  :-)  Go Lyle Go!!!  I absolutely agree that being ot and hungry is not going to give you any idea if he has reached base.  Ugh.  Things would be literally off the wall here with that combo.

I think a fed up forum sounds much better than the email system!  Hooray for that!!!!

If you pass gluten, TJ has a bread that is sprouted wheatberries (no flour).  It is pretty good, and it is free of proprionates/preservatives.  Have you seen that one there?  I think it says something like "look pa, no flour" on the top of it.  But it isn't the light airy texture, if that is what Lyle likes.

TJ has spelt bread.  I briefly saw that it said it wasn't wheat (I think; don't quote me).  I dont' even know what that is exactly...

Lots more hugs, Sher.  You are really doing a great job!!!!  And I forgot to drop off those very needed vibes!!!  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I came back to add that the book I mentioned is not available through our extended library system.  

[Mom to M&M]

I'm hoping the dairy is fine too and I do like Eloise's idea of focusing on whole foods without chemicals/additives/preservatives.

I believe spelt is a pre-cursor to wheat. Some wheat/gluten sensitive kids can tolerate it, others can't. A friend of mine thought her DS was OK with it but it built up in his system after a few weeks and started causing reactions.

HUGS!

[hrk]

The bread I mentioned does have some soy; I don't think it will work for E.  I think he is soy free, too, right?

Lots of hugs; I hope the boys get some sleep tonight.  Hope the milk is tollerated well, today.  XXXXXXXXXXXXXXX

[sherry lynn]

Elo - Yes, I defiantly still want the protocol. We haven't given up yet. The three of us are still doing this full on. With Lyle, will try to do the others as best as we can. I don't think I would even trial something like nitrates or any other additives/preservatives. I really see no reason. We don't need those in our diet and I am 100% on board with getting rid of those period. When we trial amines I will just do banana and bacon, because those are the only amines that Lyle will eat anyways. I can get nitrate free bacon.

Jean - thanks so much for that book link. It looks fabulous.  I read the whole preview. It seems like the PERFECT book for us.

I am going to write out an e-mail to the SLP right after BW time. She really supported the diet and wanted info on it. Her children are casein and gluten reactors. So besides her training with food issue surrounding speech problems she also has first hand experience on what it means to have a child who is "different" than others. I think Lyle has really found a special place in her heart. They had such a rough start to things when he was only 2years and 3 months old. She has seen more than anybody the journey we have already made, and the journey we still have ahead of us.

No regrets starting this Diet. We've already learned a lot.
We've learned that his feeding issues are not behavioral. I think that was important to learn now because the ILs are coming in a little more than a week. And I can say to them.... how much longer am I supposed to "hold out." I know they and many other people just think if we were stricter parents we wouldn't have these food issues. A little tiny part of me always believed that too. We took away EVERYTHING he ate. So the next road for him is a "food team" of specialists, like the book recommends. For us it will be seeing how Emory does tonight. I'm nervous. He hasn't had any milk products since he was about 8 weeks old (through breast milk).

Elo - quick question. Do we stop the milk trial as soon as we see symptoms. DH is already experience a tight jaw and feeling "scattered" in his thoughts. It's too early to tell with Lyle.

Karen - thanks for answering on the spelt. You are right. We can't have spelt on this diet.

Also, quick note: Lyle had milk for dinner. However, I'm taking Jean's advice from way back. I put 23oz of milk in a mason jar and I told him that's all he could have for the day. When it was gone, that was it. I also watered down the milk so it would last him longer. He is telling me now that he doesn't like oatmeal. I guess he may have eaten too much of it. Our package came in the mail so he had some gluten free pretzels. We also gave him his new vitamins. Which he screamed and cried, kicked and spit out all over me. *sigh*