My dd - need a plan, update - 22 months - Page 2

[mamafish9]

Apples are still a big problem for my son - and they cause him to cry out, pinch his tummy, get gas, and have a really bad night's sleep. Apples are also a "filler" ingredient in a lot of process fruit snacks. Salicylates could definitely be an issue, but I'd try taking out apples, and dealing with the potential corn/gluten/dairy contamination issues (sorry, I'm no help on those, trace stuff wasn't a problem for us).

However, if trace contamination is an issue for your DD, then there are other potential issues:

1) Kitchen utensils - frying pans, toasters, knives can pick up traces of gluten or corn or whatever and pass it on to the next food. I'd imagine this might be a particular issue at her daycare/preschool. Some kids are sensitive enough that even plates washed in a dishwasher can pick up trace gluten (not saying you have that sensitive a child, just trying to give you a sense of how crazy this can get).

2) Supps. Probiotics are usually grown on dairy, vitamin D is often in soybean oil (should say on the bottle), CLO often contains soy derived synthetic vitamins (won't say). A bottle that says "corn free" only means almost detectible levels of corn protein - it could still have other corn derived ingredients.

3) Playdough, other art supplies. There is often gluten or corn in playdough, tempura paints, etc. Easy enough for traces to move from hand to mouth.

[deminc]

I'm so sorry to hear about your little girl. It's tough, we all know.

Originally Posted by JacquelineR

I think all of us have, at some point, been using a product then checked it again and had an "Oh no!" moment.

Yup, definitely that! I think I only really got the hang of it after 2 months and many hours poring over this forum and pacing up and down the supermarket aisles. I would be very impressed if the daycare can actually swing it even with their good intentions. Heck, even my mum made some mistakes and she's HYPER-vigilant.

DS2 used to pass a lot of bad gas and had that kind of poo you described (or didn't want to fully described ) He's 3 now, we tried many things,including a really strict diet, and he's much better now. From daily diarrheao before he turned one until we took out eggs, he had diarrheao once or twice a week until middle of this year when we embarked on the diet 100%. Since then, he has been ok, toilet wise. He's still not completely healed but I think the food journalling and diet has helped us greatly.

I don't think everyone will agree with this, but I would like to throw out that particular food items aside, ds2 cannot take too much high-fibre food in one day - probably due to his weak stomach. His sleep will be more disturbed with gassy tummy and the poo will be unformed the next day (sorry!). So for e.g., he might not be able to cope with brown rice, peas, and raisins all on the same day (depending on quantity). We increase his calorie intake with flaxseed oil, and olive oil.

hth, somehow.

[rileyscoutmom]

Okay, I am not going to lie . . . this whole gluten, dairy, soy and corn issue is making me cry. And I am actually 100% sure about those 4. I can't believe how much it is all in.

And, the thing is, previous food journalling has been enough to make it clear that there may be *a lot* that she is reacting to. Don't you guys ever feel overwhelmed and wonder, what can they eat?

And I think, honestly . . . how many of you do this and work? Because I can't see the daycare going along with much more eliminations. Apparently there are state guidelines they have to follow and at some point they will need a doctor to fill out a form. I don't even know what to do about that. Does anyone have any experience with that?

Karen

eta: don't worry JR, you're not hurting my feelings. all info is good info. and I know you love me - and I love ya back.

eta: her poop is always unformed, either stringy like pumpkin or mucousy, and usually full of undigested bits. And smells fouler than anything you could imagine. We have to take it immediately outside to the trash - it can not be left in the house.

[mamafish9]

Oh yeah, totally get that feeling.

I work from home, this is part of the reason why. DS isn't even sensitive to trace stuff, and I still shudder to think of sending him to school.

Can you take a week or two off work, and try a really strict version of your current diet, where you make very, very sure you're eliminating trace amounts, cross contamination, etc. See how that does for her? If it works, then you know the issue is trace amounts/x-con in her normal world, and you can decide what to do about it. If that doesn't solve the problem, then you'll know she's still eating foods she reacts to.

[lil_miss_understood]

Originally Posted by mamafish9

Oh yeah, totally get that feeling.

I work from home, this is part of the reason why. DS isn't even sensitive to trace stuff, and I still shudder to think of sending him to school.

Can you take a week or two off work, and try a really strict version of your current diet, where you make very, very sure you're eliminating trace amounts, cross contamination, etc. See how that does for her? If it works, then you know the issue is trace amounts/x-con in her normal world, and you can decide what to do about it. If that doesn't solve the problem, then you'll know she's still eating foods she reacts to.

Karen. I don't have experience with daycare, but I think ASusan and a few others do. I'm a SAHM and I feel overwhelmed sometimes by it too. It's getting better, more good days than bad now, but at first it was atrocious, and the only "biggies" we avoid are wheat/gluten, dairy, nuts/peanuts and limited soy.
Also... Um. Are you using regular table salt? Or sea salt? I ask because they often use gluten or corn as an agent to prevent caking in the normal table salts. So, it really is possible that she's not reacting to as much as it appears she is, but is reacting to corn or gluten contamination.
I remember when we first started on DS1's dietary changes and I thought I was missing a food to which he was reacting because every once in a while, he'd just start reacting to *something* but I couldn't figure out for the life of me WHAT it was. It turned out that he reacts to distilled white vinegar (it's derived from corn or wheat).

[rhesp1212]

Most daycares will allow you to send your own food for your child. If yours won't do that, I would consider switching daycares. No dr. note should be needed for sending your child their own lunch and snacks!! If they are providing the food for your daughter, they are not going to be near as strict on her diet. Just sending your own food for her may help eliminate any trace things that she's getting at school

[rileyscoutmom]

I get bonus points because I knew about the salt, right? We use sea salt. Go me. I think I probably learned about it around here though.

So I just got her upper gi and seigmoidoscopy (sp?) path report I requested in the mail. It says a lot of nothing, but it says "chronic gastritis", "rare intrepipheal eosoniphils noted", "blood", "nodules" . . . which the gi specialist said they usually saw with food allergies. There was blood in her stomach and upper intestines (is that the part right after your stomach?). And he said they saw inflammation while they were in there. Despite almost 2 years of GERD, her esophagus apparently looks alright. Go figure.

The daycare that she goes to is the best in the county and is registered with the state which has started this new program called step up to quality. That have to have all these forms on file. And their policy states that no outisde food is allowed - this is because they are a part of some state food program. I do sometimes take food in for her, but they said they were separating things out for her. Like when they make spaghetti, they take meat out for her before mixing the rest with anything.

I do feel like she has been having more good days then she has in the past. It's just - shouldn't it get to a point where the bad days are really really rare? Shouldn't she be able to go a week without a bad day? A month? A series of months? Like, if I knew enough, shouldn't slip ups be rare?

[ASusan]

Hey - our daycare is state licensed, run by Head Start, does the Step Up to Quality program. They have all the USDA guidelines for meals (however much I *don't* agree with those is moot) and want our income information, even though we don't participate in the program because we pay full tuition. I supply all of DS's food. You should be able to as well. It may take a doctor's note, but that shouldn't be that hard to get, just given that GI report you reference. It is a PITA to get a doctor's signature for everything. We have to have our doctor sign that DS isn't to have soap used to wash his hands (unless they are visibly dirty, and then they have to use our soap that we provide), and to put lotion on his hands after washing...dr note. They have a LOT of "i"s to dot and "t"s to cross when the daycare participates in all these programs. (I swear it adds exponentially to the costs.)

Our daycare does feed a gluten free child in another center. (meaning that there are multiple locations served by our daycare and the gluten free child attends one of those, not that they remove the child for feeding, lol.) The dairy free child in my son's room now eats only from home because of all the hidden dairy potential. We recently gave permission for DS to eat raw, freshly prepared fruits and vegetables from the school kitchen, but the rest is up to us.

[kjbrown92]

Originally Posted by JacquelineR

in addition to the dairy concern, I'm curious about the corn status of both the hash brown and sausage.
I hope you don't take any of this as us being hypercritical, Karen. We all know that you're an awesome mom and that you're doing everything you can for Scout. I think all of us have, at some point, been using a product then checked it again and had an "Oh no!" moment.

eta: Doing a quick search, the only corn free sausage I'm finding is Shelton's.

Jones breakfast sausage is what we use - corn, dairy free.

And no, I don't work. Well i work, but it's mostly in the kitchen!

[missnoodlesmom]

I hope you can figure it out and that she feels better soon. HUGS - I've been exactly where you were (with all the health problems and never sleeping). Thankfully we figured out what my son was intolerant to (milk and soy) and he's been healthy ever since.

I took a month off of work when we cut out dairy and soy. I wanted to be able to give him the comfort of his home and Mama's arms where he could heal and I could get a real handle of what he could and couldn't eat. He went back to preschool a different kid! His teachers have been really supportive - I get a list of all the snacks for the upcoming two weeks and I send in replacements as necessary. We pack his lunch and send in beverages for him to drink instead of cows milk like the other kids. We didn't have to get a dr. note but I was prepared to do that. Either way, they are there to provide your child a safe place to be educated and cared for - it would go against those very principles to say that an intolerant child had to eat food that was bad for her. Perhaps if you phrase it in that way they will be more supportive? I think part of the reason that my son's teachers were so supportive was that they saw him go through surgeries and hospitalizations and being sick all the time - they wanted us to find an answer as much as they did! The other day I heard his teacher from last year talking to a parent about how my DS's excema went away after he stopped drinking cows milk - I was secretly smiling inside.

[rileyscoutmom]

So I pick her up from school and they are all "we're so sorry." She apparently grabbed a graham cracker off of another kid's plate and took a couple of bites. I look and she is already breaking into a rash. They were surprised it was happening so fast. Sometimes I just want to scream to the world, "I'm not making this up you know."

I did a search and have visually confirmed that in addition to the eczema, the type of rash she breaks out into is called a "macropapular rash" or however you spell that. More info to stick in my hat.

I got a copy of the pathology report of her endoscope and I guess they didn't give number counts of things and didn't actually do a full colonoscopy - just looked inside her rectum. So the *only* thing they can actually tell from this procedure that is so far costing me out of pocket 1000 is that her esophagus isn't terribly damaged from the 22 months of daily reflux and that there is damage in her stomach. Of course, since she is lying on the bed beside me with her back arched completely over a pillow I was looking for more than that. Like, does she have EGID? Well, they can't say because all though they found eos cells in her inestines they DID NOT COUNT THEM. And apparently they didn't do the proper number of biopsies anyway. And they didn't look at the entirity of her colon. I know nothing more than I knew before - although they did confirm that she has "food allergies". Thanks, I knew that.

So if I go looking for a naturopath or a homeopath . . . what do I look for? What can they help with?