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-   -   Need some support from gut-healing mamas (http://www.mothering.com/forum/45-women-s-health/1122096-need-some-support-gut-healing-mamas.html)

~Shanna~ 08-09-2009 03:46 PM

My DS (2 1/2) has been on the GAPS/SCD diet for about 5 1/2 months now. His symptoms are primarily eczema, but symptoms of runny nose, mild autistic behavior, disrupted sleep, headaches, diarrhea and diaper rash usually accompany. His diet, even within the GAPS/SCD framework, is incredibly limited. He has about 20 foods that he tolerates.

Periodically throughout the diet, he will start to react and I have no idea why. The latest jag has gone on for over a week. Typically when this happens, I pull everything that I even suspect could be a problem, wash all toys, surfaces and sippy cups thoroughly, and pray. Usually, it starts to disappear after this freakout of mine, and I'm left not knowing what the problem was. This happens so sporadically that my theory is that he is so sensitive that some minor variance in cross-contamination or in preparation (not coring the apple well enough, a trace of food protein left on a dish, etc.) is responsible. My husband is starting to make noises that we're crazy for thinking it's food related.

I know that I'm on the right track, but am sure that I haven't cast my net wide enough. I am exhausted from this. I'm 30 weeks pregnant and have been dealing with this my entire pregnancy, in addition to the 18 months that I was on the SCD diet for my own gut issues. The amount of time that I spend on food preparation, plus all of the vigilance and worrying in social settings, etc....I'm constantly staring at my son's cheeks, trying to determine if he's a)getting a rash or if b)the one that I suspect is coming on is getting worse. Seeing him rash up sends me into a despair when I'm working so darn hard. I've never seen a stretch last as long as this one, and I have nothing left to change. I'm starting to genuinely feel crazy. It's making me into a crazy parent, where I panic and scold him for drinking his bath water.

I need some help, advice or something. Dh has convinced me to take him to a conventional doctor just to see if there a)they'll even take us seriously when his symptoms are not GI and b) if they have any suggestions that aren't surgical or insane (like steroids). I'm so confused about why this is working only marginally for us, yet I can see what it would be like if we stopped trying to address it with food. There is no doubt in my mind of how bad it would get if we just fed him "whatever". I just can't believe I'm seeing such limited relief when we're so careful....

kjbrown92 08-09-2009 04:07 PM

You may get more responses over in "Allergies".
I don't think you are crazy for thinking it's food, but of course it's because I'm constantly watching my kids for "signs" as well.
Have you kept a food journal for any of this journey? It was amazingly helpful for me. Taking pictures of rashes helped as well (whether going to the doctor or just for my journaling). There was a definite cause and effect to show DH (if the need arose). It took me 2 months to figure out that almonds were a problem for DS (stomachache) and while I was poring over the journal, I finally made the connection and wondered what took me so long.

What foods are on his safe list now?

~Shanna~ 08-09-2009 04:44 PM

Quote:
Originally Posted by kjbrown92 View Post
You may get more responses over in "Allergies".
I don't think you are crazy for thinking it's food, but of course it's because I'm constantly watching my kids for "signs" as well.
Have you kept a food journal for any of this journey? It was amazingly helpful for me. Taking pictures of rashes helped as well (whether going to the doctor or just for my journaling). There was a definite cause and effect to show DH (if the need arose). It took me 2 months to figure out that almonds were a problem for DS (stomachache) and while I was poring over the journal, I finally made the connection and wondered what took me so long.

What foods are on his safe list now?
I have kept a journal, but since we have stopped introducing new foods, it's of limited use - I'm certain that what is causing the problem is something I don't know to add (in cases of cross-contamination, for example). He eats teh same foods almost every day, so it's maddening when he reacts some days and not others. Dh is mostly supportive, but he's exhausted from this, as I am .

His safe foods, with my uncertainties in (): beef (rxn to beef we get from local farmer?), fish, natural chicken, cooked carrots, peeled and cored apples, cooked onions, mushrooms, cooked garlic, bananas, olive oil, natural pork, cod liver oil, peas (?), peeled green peppers (?).....I think there may be more, but I'm exhausted from trying new things. And he reacts so often inexplicably that I'm uncertain when I rule out a new food as causing a rxn, when it might have happened anyway. We recently pulled out grapes because I was sure that the seed "remnants" in the seedless varieties were causing the unexplained rxns. But I thought that when I pulled PlayDoh (for playing, not eating) and the ground beef from a local farmer (suspected cross contamination).

TzippityDoulah 08-27-2009 08:06 PM

HAve you thought about it possibly being a environmental allergen? they can have very similar effects as the food allergens.

we go to a Applied Kneisiologist/Chiropractor and he's helped us figure out some stuff. for instance he helped us realize our new (older) home has a radon problem. no medical doctor would have thought of testing us for that one!

((hugs)) I feel for you. we're on the same boat in a lot of ways except I have 3 kids. I am JUST going to start the GAPS diet tomorrow. not looking fwd to the introduction diet honesttly... oh well. I'm already gf/cf and TF!

tanyalynn 08-27-2009 08:54 PM

I'd say come over to Allergies. We've been having some really fascinating discussions on how food allergies (intolerances, not IgE) overlap with liver function and detoxification (the inherent kind our body does). I've seen my son's reactions to foods get better or worse based on how his detoxification is going. And specific nutrients are needed, and with such a limited diet, your son may be really low unless you've got a hypoallergenic multi available.

The short, short form: for most food intolerance reactions, several things need to go wrong, starting with digestive difficulties (low stomach acid perhaps? many of us need more zinc for that), and then leaky guts (more or less leaky for each of us, my son and I aren't in really bad shape here), and then when stuff leaks through, it _should_ be filtered out by the liver, but when liver detoxification processes are really slow (due to either high toxic load, which is my son's situation and mine, or low nutrients or both) then the food floats around and causes symptoms. Some folks have gotten whole classes of foods back, things like salicylates, or really tricky foods like corn (with everywhere corn hides).

ASusan 08-28-2009 10:11 AM

Quote:
Originally Posted by HennyPenny View Post
HAve you thought about it possibly being a environmental allergen? they can have very similar effects as the food allergens.
That. We can't figure out all the food stuff in our house because we're also dealing with environmental allergies. (You might not want to hear this, but we've resorted to steroids on occasion. I cannot stand to have him itching in the night.)

And come on over to the allergies discussions.

~Shanna~ 08-28-2009 10:32 PM

Thanks for all of the advice and support. We've had a major shift this week in how we're approaching this. For the past 4 weeks, I feel like I've seen constant reactions, with absolutely NO CLUE what the problem was. I finally called our holistic doctor for a phone consultation - I was in such despair, and truly feeling crazy.

Our doctor.....God bless him. He said what we're doing (chasing the reactions as if they are allergies) is clearly not working and he agreed with my assessment of signs we're seeing that he's not getting what he needs (requesting bones to chew on, harassing me constantly to nurse when he's been weaned for months, not gaining weight in a while). He suggested that we bite the bullet on the reactions, give it a couple of weeks, and go into the full-blown GAPS diet, knowing that many foods in it give him reactions. He also said to go ahead and start the supplements he had prescribed but we'd held off on because we were sure DS wouldn't tolerate them: Nystatin and Lauridicin. What he said that I loved was this: we're clearly not doing what he needs, and DS's smarter than we are. So he recommended that I make a large variety of GAPS-legal foods and just set them out in front of him and see what he goes for. And, he said, make it a party. Let go of anxiety of what will cause a reaction and trust him to go for what he needs. Celebrate a return to food. And get a Rx for cortisone in case the rash gets so bad that he's suffering. I felt enormous anxiety, certain that my nights of sleeping are over. But I also felt enormous relief.

So yesterday I whipped up a stunning array of foods, and he wanted eggs, cheese....and a stick of butter. He had typical constant bowel movements like I expected. But his sleep disruption after 1 day was only to wake up an hour earlier than usual, and for the most part he was pretty chipper today. And I kept waiting for an explosive rash, and all I see even now is a slight redness. Could be it's building up in his system and will get bad, but things would have to get MUCH worse for this to not bee 100 times better than what we were doing. Today he's addicted to a high-calorie smoothie I made for him (soaked Almonds, banana, coconut, coconut oil, honey and cinnamon). We visited his more conventional pediatrician this morning to get the Rx faster and she said he looks great and to keep doing what we're doing.

So I don't want to misrepresent that everything's fine and he's healed, but we're seeing some surprising results with this. I can't help but wonder if trusting his instinct will open up his detox pathways. And I can tolerate a lot of fussiness and sleepless nights when I'm not worried about his nutrition and agonizing over his symptoms. It's been liberating to assume he's going to react and we have to power through it, and then have him not react nearly as we expected. We haven't had to use the cortisone yet, we're relying primarily on homeopathy as our first defense (Sulfur and Carcinosen, and Belladonna when he gets rashy and inconsolable), as well as trusting in alll of the probiotic foods that are open to him now.

I've felt more relaxed than I have in 6 months. And it brings me to tears to see my little boy is still the adventurous eater that he hasn't been allowed to be for the past 6 months. I hope we're turning a corner here.

And yes, the surprising nature of his reactions today and yesterday makes me wonder if nystatin works really fast, or if there is possibly an environmental trigger involved. Time will hopefully tell.

FairyRae 10-10-2009 12:12 AM



Quote:
So he recommended that I make a large variety of GAPS-legal foods and just set them out in front of him and see what he goes for. And, he said, make it a party. Let go of anxiety of what will cause a reaction and trust him to go for what he needs. Celebrate a return to food.
Quote:
I can't help but wonder if trusting his instinct will open up his detox pathways.
Shanna, I'm REALLY interested to hear how all of this is going for you. Your doctor's *trust your ds* strategy is just so fascinating to me and I'd LOVE to hear what's going on w/ you all now. (I've found myself in the chasing reactions boat lately and I'm JUST starting to learn about GAPS which is how I found your post...)

~Shanna~ 10-10-2009 12:32 AM

It's going really well, though in the interest of full disclosure, I have to emphasize that DS is also taking Nystatin (antifungal). I feel really confident about going to that step, knowing that our last method wasn't working and seeing how much better he's doing now. He has a healthy appetite, and doesn't show any of the deficiency signs I was worried about (asking for bones to chew on was really startling to me). The only strange thing is that we recently introduced raisins and the cascade began: diarrhea, rash, poor sleep, behavior issues. Can't figure that one out, as they are GAPS legal and I tolerated the same brand fine when I was on GAPS a couple of years ago (sulfites sensitivity maybe?) - our policy had been to ignore reactions and go full blown with GAPS and use the cortisone etc. to make him comfortable, but he's adjusted so well to the rest of the GAPS diet that this rxn to raisins was noticeable. But I'm committed to not going back to chasing individual foods around. It just didn't work for us.

FairyRae 10-10-2009 01:23 AM

Thanks so much for the update! Just wondering, when you started out, did you do the complete intro?

Thanks again!!! Glad to hear he's doing well!


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