Doctors, More Questions and 18 months of crap

[rileyscoutmom]

So, the ped is actually kind of on board now that something is going on with the 18 month old. Yeah for that. Although what is the question.

What we have going on:
Reflux in the evening and night so bad she gags, coughs and wakes up a freaking lot.
Eating barely.
Drinks all. day. long. like she is living in the desert or something
Went from the 90th percentile to the 20th in the last 9 months
Frequent rashes (I took pics, yeah me!)
Cranky and tired all day long because she doesn't sleep and is miserable
Horrible bms - loose, stringy, lots of indigested food, gritty/sandy texture, foul foul smell
The red ring
Sometimes when she takes a drink she starts screaming, it obviously is painful
Everytime we go to the doctor, she has fluid in her ears
Ezcema still behind the ears
Cradle cap still

So, we saw a gi specialist who took stool samples - all negative of course
So, we saw an allergist who did skin tests - all negative of course. He made it very clear that he was done with us even as she had a rash all over her chest and tummy that very day. He said it must be a gi issue. Nice.

They want to do a blood test for celiac disease. The ped wants the gi to do a scope for Celiac and EGID. The gi does not want to do a scope.

They put her back on prevacid which is expensive and pointless.

Can she still have food issues without testing positive for allergies?
What is the other type of allergy testing some people do - is she likely to test negative for that too?

Anyone have any thoughts on any of this?

Karen

[JaneS]

Oh mama!

Stool samples tested for what? Parasites and that sort of thing?

She could be "intolerant" meaning a couple things... IgG allergies are not usually tested by mainstream allergists but so many people have found them to be significant. I assume she was only tested for IgE?

Another type would be salicylate or other food chemical (amines, oxalates, histamines) intolerance, which is not immune system driven but part of the detox pathways and nutrients available to detox the food chemicals. This would not show up on allergy testing at all.

www.plantpoisonsandrottenstuff.com
www.fedupwithfoodadditives.info

see the "Salicylates/Amines/Histamines Tribe" thread, in this forum I believe.

I wouldn't do a scope, I would do the www.enterolab.com tests instead. But wait on what the blood tests say for celiac, I would do those.

What does she eat/drink?

[kjbrown92]

I'd say she has a whole host of food intolerances. Have you cut out the top 4 (dairy, gluten, soy, corn)? When you do that, it makes it so you can't rely on processed foods, and you'll know every ingredient. If you're still BFing, you have to cut them out too. Keep a food journal.

One of my DD2's intolerance symptoms was drinking a TON (tested for diabetes twice; upwards of 120 oz. per day).

There's IgG testing, and there's ALCAT (tests for inflammatory response to food). There's also patch testing (which I think is for intolerances, though maybe that's IgG too). Some people do muscle testing and pendulum testing too. Don't give up! You're on the right track.

[rileyscoutmom]

I know the stool samples were for parasites, bacteria and I think blood. They did a skin prick test so I think that is Ige.

She drinks just water or coconut milk. I was letting her drink grape juice but that was making the reflux horribly worse, which I did not even know was possible she has it so bad. She doesn't do dairy. I don't know if she gets traces of it in places - but no milk, yogurt or cheese for her.

I am doing the celiac blood test. I'll look into the entrolab test, thanks for the info.

We have tried to be really good about the no gluten, dariy, soy or corn. Because of her issues we don't do a lot of processed foods at all. Especially since I have spent the last year and half learning about all the crap in our food and gmos and all that stuff. Scary stuff what is in our food and how it is affecting us. And it *is* obviously affecting her. It's miserable for us all. And it kind of sucks that everyone (doctors) are going yep, something is going on and then just throw their hands up in the air.

I know (or I guess I think) that she is really yeasty too. She frequently gets a yeasty rash in the diaper region.

Everything I keep reading seems to suggest that the rashes, ezcema and cradle cap are food related. And reflux too. She clearly has food issues. Just clearly. But it is so hard figuring out what.

Karen

[JaneS]

Coconut is very high in salicylates. So is grape juice. Or a coconut allergy is certainly possible. What about foods she eats?

Hang in there, you'll figure it out!!

[deditus]

Sounds about like my dd (except she had severe constipation, but her poop was like a mass of undigested food held together by mucous). Multiple peds had no clue, nor family doc so I finally demanded a referral to a gi (who I LOVED). He was very thorough in ruling things out (things he and I thought the peds should have done right off the bat) - tested her thyroid, celiac, RAST, liver panel, CBC, lead, stool sample, etc. All fine, except her TSH was a little high. In the mean time, we discussed elimination diets. Basically I brought it up to him. I think he doesn't suggest it because either 1. People know nothing about nutrition and wouldn't adequately feed their child. Like why there have to be warnings on soy and rice milk that it is not adequate as infant formula. OR 2. People will just be like "no way, that's too hard". So, he was supportive but didn't bring the idea up to me.
Anyway, my dd is gluten, dairy, soy, and egg intolerant. I had to figure this all out through elimination diet. We also avoid corn except fresh, local, in season organic sweet corn. After each removal she improved a little, but figuring them ALL out and adding some supps have improved everything so I think she is almost like a normal kid now. We needed to use digestive enzymes for about a year and half, we used chewables, first Houston, then Klaire Labs. She also NEEDS magnesium glycinate every day, 200mg (constipation, irritablity, photophobia, anxiety). Zinc, 5-10mg (stomach acid, skin repair). 1/4 of a Thorne Basic B Complex (detox). I try to get FCL (a, d, omega 3) into her, especially in the winter. Probiotics, high bifidus seems to help almost every intolerant kid. We used Kirkman Labs Bifidus and Klaire Labs Infant powder. She needs something more but I haven't been able to get through the die-off yet. We did biotin for a while, that really helped with the yeastie beasties while I figured everything out. I want to mention that my dd was reacting to high sals foods and high histamine foods also, until I emptied her bucket by removing her main intolerances and got her absorbing nutrients again. She doesn't react to them now at all. You can really do a lot and honestly, I think the tests are a waste of money. Oh, and one more note, dd and I trialed eggs recently (this is the only intolerance I knowingly have had on and off my whole life), and my reaction was reflux. In the past, my symptoms were always stomach aches. So symptoms change and morph and are different for every one.

[tanyalynn]

Hi Karen,

Based on stuff you've written about your health before, I'd try to rule in/out heavy metals--did you do that already? If you haven't already done it, I'd do the Hair Elements test from Doctor's Data, ideally on her, but maybe both of you (you're not nursing, are you?).

Do you notice anything changed around 9 mos? That seems like an age when kids could switch from mostly breastmilk/formula to a high proportion of calories from solids.

We're going to experiment with some digestive enzymes here, I think DD would benefit, DH will likely benefit, and DS and I could use the extra support. For us, we're doing it to stabilize our digestion, either improve absorption or reduce stress due to whacked out bacteria/yeast mixes, and then continue making progress getting the metals out. Once that's done, then I expect we can discontinue them--so it's a useful tool, but I'm not seeing as necessary forever.

Have you followed mamafish's Yasko thread? I want to try the glandulars first with the kids (before the dig. enzymes, but probably experiment with me and DH first to see how we react and understand them a bit more), then decide if they need the digestive enzymes--my understanding is that there's overlap in how they work, but the glandulars are weaker.

So that may help in the short term, and then looking into big root cause issues--because with your health the way it was/is, it seems you've got something significant. And if/when you can, you may want to do some of this with your older DD as well. My firstborn is definitely healthier than my secondborn, and excellent genes from DH are clearly part of it, but I was more worn down, healthwise, when #2 came along and that was part of DS's issues.

Oh, re: testing, our stuff is just intolerances, and they go up/down based on nutrition/detox pathway progress. Seems like there are a couple ways for things to go with intolerances. Kathy's kids have lots, and once she identified them, it sounds like things were pretty stable. I wonder, though if some kids could have lots and lots of intolerances, but with more nutrients, overall reactions would decrease and the foods would be tolerated. DS reacts more when he gets more soy, or soy and chocolate, or soy + chocolate + cashew (within a short time period, not one dish--ewww)... each plays a part in filling his intolerance bucket. Some kids don't seem to have any tolerance at all, but some do, and focusing on improving that (dig enzymes could help there, in terms of increasing nutrients absorbed) could help.

[rileyscoutmom]

Hi Tanya,

We did a hair test but it really has been a while and we did the wrong one so I should probably do that again. You are right, I'm not breastfeeding. Never could. And I am just now starting to realize how unhealthy I have been over the years . . . I myself have always had problems with nausea and vomiting, and anemia, and chronic strep throat and season allergies always totally kick by butt. We won't even go into the reproductive stuff. That is depressing.

The thing about the foods is really a big wall for me. DD goes to a great daycare and they have really worked with me on the foods but they need the doctor to file paperwork saying that she can't have those foods, which is obviously not going to happen now. But I don't want them giving them to her becuase those are foods that I have clearly identified with the rashes. They actually make healthy food and serve it family style but they get some type of funding for the food which is why they need the paperwork. I have been putting the paperwork off for months now. But it looks like we are moving to Texas at the end of July (not Cali anymore) so I can probably keep them at bay for that long.

It is kind of hard sometimes having all this stuff happening and it is not recognized by the mainstream or has a diagnosis. Especially in my family. And sometimes it just seems like I really want that validation, and some kind of answers. And of course, sleep!!!!!!!!

No matterwhat I can not get her to not reflux so she sleeps through the night. And the pooping is a problem. But there are many times a night where she literally gags on the reflux. It is both terrifying and annoying (I mentioned the no sleep, right?) - plus, nobody likes to see their baby in pain.

And it doesn't help that I always feel so alone out here in this wilderness. My dh has been gone for 2 weeks and not 1 single person from my church (my supposed friends) have called to ask how things were or if I wanted to go out. Cause they know that I am so freaking tired and likely to talk about all this stuff with my child. I try to fake it, but there are days where I am so tired that I simply can't. I went to church this morning and I was so upset at being so miserably alone that I left after Sunday school. And, not surprisingly, not a single soul from church has called or texted or emailed to see if everything was okay, although I was on the verge of tears at church. I just thought by now we would have her in a better place - and we don't.

Karen

[franklin907]

It is kind of hard sometimes having all this stuff happening and it is not recognized by the mainstream or has a diagnosis. Especially in my family. And sometimes it just seems like I really want that validation, and some kind of answers. And of course, sleep!!!!!!!!

Karen, I am so sorry to hear what you're going through; it is so challenging when you don't have doctors to validate what you know is going with your child. For us, finding a doctor who practices environmental medicine has been a tremendous help. He is open-minded and believes in yeast overgrowth (this is huge for me). I took my son to our regular doc who gave me a lengthy schpeel on how yeast overgrowth doesn't exist; I left ready to cry. I know it exists and I knew my son had it. This was a year ago. I then found our doctor, who we do have to fly to see, but the trips every two months are so worth it. We are currently doing low-dose allergy (LDA) therapy with him and it's really starting to pay off. Treating him with diflucan and nystatin, though, for the yeast had immediate positive impacts. This was last July and his eczema and severely dry skin began healing a few days later. He also now tolerates more foods, it felt for awhile like he was allergic to everything. So I would encourage you to pursue the yeast overgrowth if you feel strongly about that. Also, look into LDA. Although it has taken 9 months before we have seen really significant impacts, I've talked to other parents who's children could not tolerate anything, but started getting foods back shortly after their first or second shot (we're on shot six). If you want to take a look at my blog, I have more info on LDA, as well as yeast overgrowth, on there. I'm just so sorry you don't have anyone close to you for support, the internet has been so helpful for me in finding other parents going through similar struggles, but we also have our family all living close to us. Hopefully you'll be able to develop a support network where you're moving to, but until then, I would try to develop an online one- I think it could be really helpful. I know it has been for me. Also, the two supplements that have made a big impact for us are probiotics (50-100 billion cfus/per day) and vitamin D (2,000 iu's/day) *we're also in Alaska where the sun hasn't been shining much . In the past, we have tried doing folate (5-MTHF), Brainchild Nutrionials Spectrum Support II Vitamins and Minerals, Molybdenum, B-Complex, and more, but we decided to start over, just using one at a time, because we weren't noticing any differences, except the Vitamin D and Probiotics. Another interesting thing we recently are doing is put our son on Flagyl, which is an antibiotic, but he had clostridium show up in his stool sample. Our doc told us sometimes kids can get too much of this and it can affect them behaviorally, as well as keep them awake during the night. Since we started using it, within one day, his sleep significantly improved and his skin actually started clearing. Hope some of this helpful!

[tanyalynn]

Oh Karen

So many people who've never been through anything like this just really don't understand the toll it takes. The never-ending-ness, the deep-seated tiredness that sets in, the sadness and anger because things aren't right with the kids and we don't know what to do to fix it. They should help, and I'm betting some would help more if they knew what to do, if they really understood the toll this was taking, but they don't really think about it and get distracted. I can look back now and see times when I was younger when someone else had something big going on, and I didn't understand it enough, or understand the difficulty of it enough to step outside my little box and offer help.

We're at a bad time--more families than ever really _need_ support and help, and more families than ever are caught up in what's going on with them, not looking outside to the community, to church groups or other local groups to offer help to those who need it. Which doesn't help you in the slightest at the moment.

It sounds like you can delay the daycare issue til you get down to Texas. Are you going to be working here? I think daycares here have the same regulations wrt dietary restrictions. An unregistered home daycare wouldn't need that, of course, but that's a different situation to have to navigate.

I'm thinking local groups, maybe Holistic Moms, maybe just something local, to help you find people in your new city.

I haven't read enough specifics yet on the Yasko forum about how introducing those pancreas glandulars go, that's one of my next things to do. Seems potentially helpful for your daughter. I'll be praying for you.