Diary of putting my family on the RAPH diet

[tigerlilly905]

Jumping in as I think our family is going to have to go the same route... Thanks for this thread, I'm totally feeling overwhelmed ATM.

[tigerlilly905]

I have yet to read back through this entire thread, as my refluxing little man has just recently had a flare up, horrible rash ect. and it's been terrible to deal with - which is why we're almost certain it has to be a Sal's intolerence. He also has mucous poops (either dark orange or green) TBH, past his first week of life, I can't remember him having a "normal" poop.  At first I thought discovering the MSPI solved our problems. That was about 6 weeks ago.  But about 2 weeks ago, Ds2 started to get a small bum rash, that's since intensified drastically, and the past week his reflux symptoms are worse then ever!

We don't medicate his reflux. I feel like medicating it would be just masking the symptom and not treating the cause, esp. if it's intolerence issues. I do give him Colic Calm when he's really bad (a homeopathic gripe water)

I'm completely overwhelmed ATM. DH read over the symptoms of Sal intolerence and it seems to be exactly issues faced within our family. Hypothyroidism (MIL, my mother & myself - DH has symptoms of it but is not medicated for it),  IBS (my mother), endocrine system issues (MIL, DH). Even more recently I realize I've been giving Ds1 Ibuprofen since he's teething molars/k9's, and he's started to do this bizzar thing banging his head multiple times on wall ect. - That was also a symptom of Sal's!!! I couldn't believe it!

I'm sure I'm going to have LOTS of questions.  I am going to be sure it's not gluten or eggs - so I will go completely off of those first. But in the meantime I think we're going to figure out our plan of attack on Sal's., b/c I think we'll have to start that sooner rather than later.

Quick ? - I know for sure Ds2 is MSPI, so on the Sal's diet I will have to be sure to avoid all dairy as well, right? It will still work if I stay away from dairy I'm assuming.

Also, my thyroid medication is essential ATM (although I've been trying to get off of it..) but I know it's got colourant in it. What does one do in that situation.

We eat an all natural/organic diet as it is. I'm assuming we can continue that while doing the RPAH diet... although I'm afraid this will get expensive  Since discovering Ds2's MSPI I've only been eating: water, most fruits/veg, quinoa, brown rice, Oatmeal, eggs, organic meats, olive oil. I take a calcium supplement, fish oil & PNV. That's it. So once I rule out eggs/gluten we'll most likely start the RPAH diet within the next few weeks.

Last question - I did start Ds2 on probiotics (by Klaire labs, dairy, soy, egg, gluent ect free) they are binded with chicory root - is that ok to still give him. I know his intestines are in complete distress and I'm trying to balance it out.

I feel somewhat defeated. DH & I strive to live a healthy organic lifestyle, yet we're still faced with this?! Unbelievable - even "healthy" natural foods are causing issues.  We've mostly managed our lifestyle ourselves, but will most likely start seeing a naturopath now. It's difficult, b/c in Canada w/ DH's benefits, our healthcare/prescription meds are covered. Naturopathic medicine for the most part is not.

Anyways, thanks again for the support, my mind is just spining!

[hrk]

Argh, Sher.  I forgot to come back and mention the honey in that bread.  I am so sorry!  I meant to write.

As for nap, he is still doing about an hour to an hour and a half (but I do 1.5 when I know we are heading out to swim in the evening or have a pretty physical evening and I don't want him to get tired/grumpy).  Night is from 8:30 (ish; he will sometimes not fall asleep until 8:50 if we are running late) to 6-6:30 (6:45 rarely).  No nap makes the day so short, and we love the long evenings right now.  It won't be long before daylight starts to dwindle a bit more...  

As for bread, I did make that bread recipe that I posted quite a ways back from allrecipes.com.  Then I tried the bread maker, but it took too long in my opinion.  Then I started the artisan bread in 5 minutes a day.  My mom had also picked up a gf cookbook for me at a garage sale, but I didn't like the first couple of recipes.  I just can't get the taste for gf, I think.  It will be trial and error, but the artisan bread stuff is quite a bit quicker.  But I had a hard time making sandwich type bread.

Lots of hugs, Rebecca.   

I have to run for now.  XXXXXXXXXXXXXXXXX

[sherry lynn]

Hey Jean - this article recommends the book you talk about nourishing traditions, it's a good article about the juice industry in America: http://www.foodrenegade.com/secret-ingredient-your-orange-juice/

[sherry lynn]

Rebecca - the whole point of the RPAH diet is to work on ruling out egg, gluten etc.
So if you start on the strict diet, which it sounds like you need to. Then go you egg, gluten, egg, soy, milk free (and also low natural chemicals: salysilates, glutamates, amines) sorry about the spellings. Then one at a time you add the stuff in.
The most expensive part is when you have to buy gluten free. At least in the states, gluten free stuff is very expensive. There was a cost for stocking up on the basic stuff that the diet requires. But, now I think it's maybe just a little more expensive then our diet before this. Since we were trying to eat healthy anyways. So what I'm saying is you don't have to rule the other stuff out before you start it. Starting the diet will help you rule everything out with a more systematic and complete way.

[tigerlilly905]

Thank you for the advice Sherry lynn, I REALLY appreciate it. How long did you find it took to notice a difference as far as symptoms went when first starting the diet? I'm assuming your body will have to detox first and it depends on the severely of the intolerence?  Could I see a faster improvement in Ds2's symptoms since he's so young? So far I've been egg/gluten free for 4 days (in addition to keeping dairy/soy out of our diet which we have done for over 6 weeks now) His symptoms are still worse then ever since this most recent reflux flare/rash ect. I haven't gone on a low/mod Sal's diet yet though. I will have to stalk up on the foods tomorrow. 

I looked up the Chicory root that is used in Ds2's probiotics as a binding agent - it was in the "extremely high" Sals category So we've stopped those. What brand probiotic do you ladies use that is compatible with a low Sal's diet and is also dairy/soy/gluten/egg free?

Since I am tandem nursing I am a bit worried about my supply. Is anyone else here still Bf'ing while doing the RPAH diet? Did you notice a difference?

I actually just read that article about jucing not too long ago - facinating stuff, isn't it? Funny you posted it Sherry lynn.

Also, do you find your naturopaths are well versed in this sort of thing? I'm hesitant that they won't know what I'm talking about.

[sherry lynn]

Eloys and Kirry are much better to answer those questions because there LOs were young when they first started the diet and they were breast feeding.

It can take the body a while to heal sometimes and I do know that it takes AT LEAST two weeks to hit base line when you start the diet it takes even longer for some.

Going low sals is one of the hardest parts because it really limits fruit and veg choices.

[hrk]

Super interesting article, Sher!  THanks for posting it.  :-)  How is everything going?  When is your family arriving?  :-)  I hope the extra hands will helpful.  XXXXXXXXX

Rebecca, I agree that it can be hard to see exactly what is happening with reflux meds.  I think each parent has to do what they feel is right, and reserve your right to change your mind down the road.  It can be overwhelming.  I wouldn't stop your meds without talking to your dr.  Can you get a referral to a dietician or allergist?

H wasn't medicated until 5 months.  Things were just to erradic and his discomfort was so high (despite being on hypoallergenic formula even before using meds for the reflux).  It can be so dog gone hard to figure it out, so hang in there.

Perhaps some others over in crc have mentioned that reflux can be due in part to immature anatomy of the lower esophageal sphincter.  Some research suggests that it doesn't completely mature until 18 months.  If that is a factor, it still may skew your results, as it can intermitantly relax allowing tummy contents in to the esophagus (or even higher causing other issues).  We have a low tone issue that may have been a factor in H having a weaker lower esophageal sphincter, and it took an occupational therapist to notice the external signs of his low tone rather than the dr or gi.  And the thought is that the low tone may have been an internal factor as well.  My thought in adding that is just to mention that food intollerance/allergy could certainly play a factor, but there may be other contributing factors in to the mix.  And there could be other possible anatomy issues that can be a factor as well, unless they have been ruled out.

Lots of hugs for all the moms here going through this.  XXXXXXXXXXX  You truly are superheros for your LOs.  This is a challenging road to be on. 


 



 

[EloysH]

Hey Rebecca,

I started the diet when Ds1 was 3 months  old.  I was on it till he was 13 months. It took us 6 weeks to get to baseline, for babies the dietician and allegist I saw who are well versed inthis diet say to allow 4 weeks for baseline.  My supply was not affected, they say the quality of your milk isn't affected.Although I noticed after expressing that it was less fatty.  Not much i could do about it though except try to eat as much fresh salmon as the diet allows - (moderate amine) and eat more of the allowed oils, unfortunately none of the oils are what I class as heatlhy oils    The diet really is a last resort to sort out chemical food intolerance, it is not an ideal diet.

[tigerlilly905]

Thank you for all the wonderful info and support ladies. I've really needed it.

So we are now on day 3 of eating low/moderate Sals. It seems almost impossible, but I think we're turing a corner already!?! Ds2's rash is almost completely gone, his reflux symtoms are gone, and we had our first bright yellow, seedy mustard poop since I can remember!!!! Is it possible he only has a mild intolerence to Sals? I'm hoping he will be able to grow out of it, but the Diet isn't all that bad really. It's just changing what we used to do. Especially since we always used to eat very rich antioxident foods (such as avocado and olive oil ect)

I was able to do a full grocery shop to fill the kitchen with low/mod sal foods (and of course I"m still dairy,soy,egg, gluten free too at this point). I'm doing as you suggested, Eloise. Eating mostly all low Sal foods, and one meal/day eating moderate Sals. (I loved the idea of fresh Salmon btw - I was worried where I would get my good fats from!)

I'm also finding I have more energy.  I've also lost 4 lbs in 3 days, without even trying. I suppose the Sal intolerence does run in our family.  The toxins must just gradually build up in our systems and manifest themselves in other health problems (like my hypothyrodism)... this journey is so facinating. This may sound bizzar, but I'm almost happy that Ds2 was having some problems, or we may never have even considered Salicylates as being an issue for us.

I'm now wondering how I'm going to tackle solids with Ds2 down the road. What did you do Eloise? I'm thinking I will have to only introduce low Sal foods for the first little while with him and go from there?  What are your boys able to eat now? - should I make another post about this? (LOL - I get off topic easily sometimes)

Also, what do you ladies eat for breakfast? I'm finding that the most difficult meal of the day, especially since I'm still not eating eggs yet. I did get some Quinoa flour and made Quinoa pancakes this morning. They were pretty good, but I can't see myself eating them everyday.

[sherry lynn]

We are eating eggs yet either. So I also find breakfast hard. But, I've been less hungry in the morning. So that helps.

I usually grab a handful of raw cashews to eat with my coffee. Then a little while later I have some puffed rice with rice milk.

So glad to hear things are improving. And like you GF pancakes/waffles. Or maybe a slice of GF bread with homemade pear jam.

[huntersmummyinoz]

how's it all going sherry?? passed/failed any more challenges yet??

[sherry lynn]

We are on sals right now. However, he is finishing up teething, which seems to bother him. The last corners of all the molars are coming in. I've got a head cold, or bad allergies, so I figure that's upsetting him too.
He was up a good bit of the night, night before last (seriously like half the night) I thought he had an ear infection, but he seems better (no real fever or anything) so keeping an eye on it.
So I think we will be keeping at this one for a little while. Is it ok to do it longer than 7 days if we are unsure?

[Gypsymom]

For breakfast, I ate Bob's Red Mill (US/Can brand) of "rice cereal" every day for months. It is grainy hot cereal and you make it up like cream of wheat or something. I even ate it for dessert/snack at night a lot too. If you can find 'safe' baby food, you might take to eating that too!

Good luck, Rebecca. It took ridiculous amounts of elimination for us, but we did get a "healthy baby" back. I started when DS2 was just 3 weeks old and now he is nearly 15months (and I'm still BFing!). Mostly, just hugs. It is so hard, especially when you are just sorting things out. One treat I still eat is DF margarine, mixed with sugar into a paste and spread on a rice cake. 

[tigerlilly905]

Thanks for the breakfast suggestions. I found a tapioca/rice bread today that was actually pretty decent too.

WOW Shannon - you started when your son was 3 weeks! Amazing. How did you pin-point it to a Sals intolerence that young? Yay for still bf'ing!! How long did it take for you to see an improvement in Ds2's symptoms? Was he getting mucous poops for a long time? Did your first ever show signs of this intolerence? I would love to hear your story Shannon...

We ended up with some really mucousy diapers again today I felt a little discouraged, but I guess his little body is still healing too, right?  On the plus side, his reflux symptoms are still gone and he still seems much more comfortable, so that's good

I went to a ND today and it was terrible. I was so dissapointed. She had no clue about Sals, or any intolerences in babies for that matter. Then I tried to talk to her about probiotics since I'm desperately trying to find some that will be compatible for Ds2. The first ones she gave me to look at had milk in them!! argh, and I told her Ds2 was MSPI! The second, she said had nothing but probiotics in them. I asked to look at the bottle and they had FOS in them.  I'm not comfortable giving that to Ds2 either.  So after a short while we politely told her we didn't think she was a good fit for our family. I was really discouraged this afternoon. We do have another consultation with a different Naturopath on Monday. He comes recommended by a friend, so here's hoping he's a better fit for our situation.

This really is full of ups and downs, isn't it?