Help me help my DD.

[Pattyla]

I'll try to put it all here. Not sure how clear I'll be.

DD was a terrific NB. Really a dream baby. She slept and ate and was just normal. (not like her big sister who screamed when she wasn't attached to the boob and was easily overstimulated by nearly everything.) At 2 weeks she had thrush that took some work to get rid of but we apparently were sucessful.

Then when she was 6 months old I had two mercury fillings replaced using the safe protocol. Within 24 hours she was a different baby. Suddenly she had allergies. She was up screaming at all hours of the night. Etc.

So here we are today. We are doing chelation but that is an extremely slow process, esp because she catches every bug she comes within a mile of. We need to survive the moments while I work on the big picture.

Her list of sensitivities is long. She has GERD and is on a PPI. I have tried lots of things to treat her gerd without it and finally put her back on it in desperation to get her some relief. Even on the PPI she has pain although not as bad. I assume she also has EE. She has very loose stools with lots of undigested foods. Sometimes her stool is mucusy but I don't know all the triggers for that. She throws up durring or after meals sometimes. The last two mornings she has drunk a lot of water durring breakfast and then kinda hunched over and thrown it back up. She always asks to nurse right after a meal and will not be put off. I'm beginning to think it is because her tummy hurts after eating.
I recently put her on the PPI again and now she has full body yeast. So for the third time I am giving her diflucan for a month. It was all over her body and in her mouth, very bad on her bottom. Athletes foot on her feet. The whole 9 yards. For the first time I am also taking diflucan while she does.
A few weeks ago she had an ana reaction to eating some Cod. We are going to the allergist on Tuesday if she doesn't get hand, foot, and mouth from her sister.

I want ideas on how to bring her relief now. Is there anything that works on EE?

Her list (and therefore my list) of off limits foods is all grains, dairy, soy, stone fruit, grapes, coconut, egg, fish, chocolate, almonds, berries.

Thanks for any ideas.

[mamafish9]

Phew Patty - what a journey you are on. I wanted to ask about the chelation you are doing - what chelation agent, how long between doses, how long between rounds? And how old is your DD now?

[tanyalynn]

As I said in the Chat thread, I know very little about EE. My first thought, though, based on the metals and the gut was a diet like SCD. Have you considered it? In terms of digesting food better, have you tried digestive enzymes?

Are you giving nutritional supps now? Are you taking any, yourself?

DS used to be sick Oct-Jan almost constantly. I don't know how I could've chelated him through that, for various reasons we skipped those seasons for two years, and now he's not nearly as sick as he used to be and I'm finally making good progress with the kids. My HCP is an acupuncturist, and I think she could've helped with that somewhat, TCM has an explanation for why people get more colds in the fall/early winter and acupuncture can help strengthen those areas. But I didn't actually try it, so I can't say "it worked great for us!"

[Pattyla]

Went to bed last night after posting.

Now some answers.

Chelation- We are doing DMSA per Andy Cutler's protocol. Rounds last 3 days and then 4 days off is the plan but so far every other week is the reality.

I take a handful of sups at every meal. DD is getting brainchild II vitamins and mega minerals. Brainchild zinc. Dolomite. molybedenum, biotin, probiotics and digestive enzymes. I think that is everyting at the moment. I'm constantly tweaking it. Oh and sambucus and either OOO or Theives on her feet at night. She seems to respond well to the OOO. Theives is something new I'm trying.

I did SCD with her big sister for a year. Both of us. But she could have diary and eggs. and after 9 months I started cheating with sugar and chocolate. I'm not sure I could survive it w/o dairy and eggs. I'm already starving most of the time.

I do consider getting the gaps book though...

[mamafish9]

Sounds like you're doing a lot of things right! How much DMSA - I'm wondering if backing off on the dose a bit might help with the yeast issues.

And I feel for you - we've been doing rounds while DS cuts his two year molars, and it is not fun!!!

One more thing - it might be worth upping her vitD. That seems to have really helped us fend off sickness this year, and the brainchild vites don't have a lot (what I'm doing for DS is taking fermented CLO - I put it in capsules, can't stand the taste), so he gets a lot through my breastmilk. But you could give it to your DD directly as well. I'm looking at supping DS directly now that he is nursing less, and I'm aiming to give him about 1000mg a day (and he eats lots of fish so gets more that way).

[tanyalynn]

Cutler says to use DMSA every other weekend, 3 days on, 11 off. Sounds like that's what you're doing anyway, so I just mention it to lose the guilt of not moving faster (I had/have a lot of that guilt). ALA only can be 3 on, 4 off, though I haven't gotten into that schedule with the kids yet (and DS is on both DMSA and ALA right now).

Okay, this is going to sound depressing, and it's not meant to be, it's just to throw out ideas. DS was born in April, so by October he was 6 mos old, EBF at that point, and he started getting colds and had 4-5 healthy days in the Oct-Jan timeframe. Cycles of colds the rest of the time with occasional gastro bugs and croup once to break the monotony. Next October, he was 18 mos old, and it was a repeat of the previous year. Still nursing, but eating a fair amount of solids as well. In between, we cut out gluten and dairy, started a list of supps as long as my arm, and he stopped banging his head on the wall. But it wasn't til the following fall, when he wasn't nursing anymore, that he only got sick about as much as a typical kid (maybe a bit more than average, but totally different than the first year).

I don't know if my nursing him was really good for him. I just don't know. I don't know if I should've weaned him earlier, maybe it just took time for him to get in better balance. It wasn't til after those first three fall/winters that I started the vitamin D (I think we've all been very low, this year I think we are getting into a reasonable range, finally), so it wasn't that (though I am tentatively crediting that for getting us through what I think was the flu in Sept with fairly mild symptoms, very mild for me).

Back to DMSA--it's making DS's gut yeasty and he's not very prone to gut issues, so I can see how it would really be hard on a kid who _is_ prone to gut issues. How much biotin are you giving her? I'm giving the kids 8mg per day, I think it's helping some. Have you considered/tried anti-yeast things like Candex? I know there are others, I'm just forgetting the names (and I don't know if Candex is prescription only or OTC).

eta: just re-read for the diflucan. That sounds like a short-term thing, right? I know there are ways to take anti-fungals all the time, or rotate through them (some folks prefer that method), I've read about some on the autism-mercury list, but don't have experience. But that may be an approach to consider.

SCD without eggs and dairy and almond seems hard--you'd basically be eating a ton of meat, a ton. GAPS is pretty similar, it seems, the intro seems different, but the foods itself seem very similar. You need enough to eat, you just do. It sounds like SCD would be beneficial but if it's not doable now, it's not. Are you taking any digestive enzymes? That may help as well--I mean help DD.

Also, someone responded to the Chelating Mamas thread--are you taking zeolite? mamafish is seeing a lot of mobilization when giving it to her son, it sounds like it really does mobilize. Maybe re-evaluate your supps? I really like modifilan for myself and the kids; it didn't mobilize in me to cause problems for DS when he was nursing, and giving it to the kids directly has rocked. It's my go-to for when they seem bogged down, they're having symptoms (the 1st day after our first few ALA rounds caused irritability, and modifilan and extra vitC made that go completely away), and I use it on an ongoing basis. I give DD 3/day (1, 1, 1 at different times) and DS gets 6 (2, 2, 2) but I've gone as high as 9/day for DS at times.

[Pattyla]

DD was tested for D and was very high almost out of range high so I don't supplement her. I was giving her clo but then she had an apparent ana reaction to cod so now I'm giving salmon oil and waiting to see an allergist.

Tanya- every other weekend? How did I miss that?

I've never noticed anything with zeolite. No reaction. Nothing. I'm not sure it actually does anything. DD is getting arround 5mg of biotin IIRC. We are now doing candex and herbals as well. I'm on diflucan myself and suddenly constipated. I've been having the opposite issue since the middle of my pg so I'm wondering if this has been my issue all along and I just didn't realize it. I was treating a yi that I had no idea I had when I delivered dd. M/W did an internal check to see if she could sweep membranes (she couldn't I was 10 days past dates and still tightly closed) the day before my water broke.

I'm thinking about gaps more. I want my baby healthy.

DD has watery/mucus filled diahrea today. Otherwise is acting fine. I'm not sure what to think. Food? Tummy bug? something else? Her big sister is getting over hand foot and mouth and can finally eat w/o crying today. It's loads of fun here.

[tanyalynn]

for bad days...

really high on D without supplementing? Or did you supp a lot and then stop? Um, I _think_ parathyroid function can be involved in that (or is that something you already looked into, I think I'm remembering something along those lines...)

need to run...

[mamafish9]

Originally Posted by TanyaLopez

Okay, this is going to sound depressing, and it's not meant to be, it's just to throw out ideas. DS was born in April, so by October he was 6 mos old, EBF at that point, and he started getting colds and had 4-5 healthy days in the Oct-Jan timeframe. Cycles of colds the rest of the time with occasional gastro bugs and croup once to break the monotony. Next October, he was 18 mos old, and it was a repeat of the previous year. Still nursing, but eating a fair amount of solids as well. In between, we cut out gluten and dairy, started a list of supps as long as my arm, and he stopped banging his head on the wall. But it wasn't til the following fall, when he wasn't nursing anymore, that he only got sick about as much as a typical kid (maybe a bit more than average, but totally different than the first year).

Tanya, that's EXACTLY the pattern we have seen (with DS born in March) - except this year he's not getting sick - and he's still nursing plenty. I think some kids just need to get a lot of bugs first...?

OP, zeolite is working great for us - we actually use it on a Cutler-like every 4 hours protocol because of how much it mobilizes (I did pee tests to see if I was getting results, but I can also see it in DS' increased need for some supps and his symptoms). It definitely doesn't work for everyone though.

Tanya, I need to check out modifilan now that DS will swallow capsules - the day we come off rounds is definitely toughest on him (and therefore us!). I up his C those days, but a "mop up" agent would be awesome.

[tanyalynn]

Mamafish, I'm glad your DS isn't getting sick like that this year. Like I said, I don't know why the change happened when it did, was supp-ing zinc but didn't change it in the relevant timeframe, D was later, I can see lots of nutrients that were off but nothing I can see changing in a timeframe that could account for it. Likely I'll never know.

Kids seem low-level sick today, had to end abruptly, not sure where I was....

For now I'd vote stomach bug. Right now, now that I'm chelating them more regularly, DS is getting more stomach upset with his illnesses. He didn't seem prone to it before, but his gut's gotten more out of whack and regular illnesses that I don't think would've upset his stomach are doing so now, so even an illness that doesn't seem GI related (say for the rest of the family) maybe it will be now. But I don't have a solution for this, I'm trying to keep the kids happy enough and healthy enough that we can continue, cause chelating is our path outta this. But I don't have a lot of good ideas on getting you guys to "good enough."

[Pattyla]

My older dd was constantly sick the second and third year but then we started her on minerals (and zeolite and other stuff) and she got much better. Pretty normal imo. She is still nursing and was nursing a ton at that time.

I like nursing. I think children under 3 deserve breastmilk (unless they self wean). I don't feel right about weaning my ydd when I have let her sister nurse till nearly 6. Plus it is the only thing that soothes her on a bad night. It is a significant portion on her daily nutrition that I have no idea how to replace it with her food restrictions. I'm really angry at life right now. I'm feeling cheated. The burden of managing all this makes me fantasize about putting dd in school and yet I want to home school her. I want to full term breast feed my children and yet I do wonder if I am serving up poisions with my milk. We're going to the GI on Friday and I'll probably ask for/agree to a scope even though I don't think the procedure is a good idea. I just need to know what is going on with dd and how to help her right now.

Tanya- what is that supplement you keep referencing? Modifilan?

Originally Posted by TanyaLopez

Mamafish, I'm glad your DS isn't getting sick like that this year. Like I said, I don't know why the change happened when it did, was supp-ing zinc but didn't change it in the relevant timeframe, D was later, I can see lots of nutrients that were off but nothing I can see changing in a timeframe that could account for it. Likely I'll never know.

Kids seem low-level sick today, had to end abruptly, not sure where I was....

For now I'd vote stomach bug. Right now, now that I'm chelating them more regularly, DS is getting more stomach upset with his illnesses. He didn't seem prone to it before, but his gut's gotten more out of whack and regular illnesses that I don't think would've upset his stomach are doing so now, so even an illness that doesn't seem GI related (say for the rest of the family) maybe it will be now. But I don't have a solution for this, I'm trying to keep the kids happy enough and healthy enough that we can continue, cause chelating is our path outta this. But I don't have a lot of good ideas on getting you guys to "good enough."

[tanyalynn]

for the hard times. This is the hardest thing I've ever dealt with in my life, and the fact that I haven't felt good, and it's gone on for years, can still make some days difficult. I sometimes feel angry, really angry, that I have to work so hard for my kids to be healthy, especially when I know people with much smaller problems who decide not to look into solutions for their kids' problems, solutions that would be much less life-altering than what we're dealing with. I think it's okay to be pissed sometimes, but I try not to let that take over for long stretches. Eventually I try to focus on the things I'm learning, on the bright, shining future I really do think is ahead of us, and if I'm in a really good spot, I relax and enjoy the moment we're in. But I've had a lot of days when I couldn't do that, and don't let yourself feel guilt about that either (or maybe the guilt was just me).

re: modifilan, it's a seaweed extract. My HCP recommended it a while ago and it's turned into something I love. It stopped my post-amalgam-removal headache, and bumping DD up to 6/day for a while (not forever, not in the budget) did two really nice things. First, it started decreasing her vitC need (which had been about 30g/day, BUT I couldn't give her that much, she'd get irritable and feel bad/behave badly). So her vitC need started coming down (it hadn't been before--DS had, DD hadn't), AND I was able to start increasing the amount of vitC I was giving her so I could get her to her new (but decreasing) bowel tolerance. Small stuff, but the really cool thing was that as this was all happening, her tendency to overreact (tantrums, explosions over little things, getting upset and then taking a long, long time to calm down) really decreased. Didn't go all away, but the difference was marked, it was April of last year.

My understanding is that it doesn't mobilize at all (which is my experience with it, with myself and the kids, it just seems to mop up) and by doing so, it provides an alternate way of reducing circulating toxins, bypassing the nutrient pathways that are so bogged down in so many of us. Since liver function is impaired in so many of us, bypassing that for a bit of the toxic load is a nice thing--I guess there are other products that have claimed the same thing, I don't have experience there, but I like how this works for us.

So I've used it in acute situations (headache from amalgam removal, headache about 2 hrs into first dose of DMSA, like that) and as a longer-term aid. It seems to make things go more smoothly, overall, for the kids. I also gave extra to DS when he was irritable on the first day after chelating; that doesn't happen anymore, but back then (which was only ALA), he was really unhappy that first morning, and extra vitC and modifilan stopped that within a half an hour of consumption. I had to dose extra later that morning, say 3 or 4 hours later, but it made a real difference in his happiness level.

I buy in bulk (12 bottles at a time), it's cheaper that way. Price is a factor, I'm not taking any right now, but I've got other things for me that aren't appropriate for kids, so it balances out.

Again, I'm sorry it's a rough time. I hear ya on the anger and frustration and just plain unfairness of all this. It wears on a person, so it's okay to feel like this. I really wasn't trying to cause guilt with my musings on breastfeeding DS. I _really_ wasn't. I had, and to some extent, still have mixed feelings on my decision; I don't know if it was right for us, let alone whether the same decision would be right for someone else. But having to make that decision and think about the issue in that way (regardless of choice)? THAT still angers me.

[Pattyla]

GI appointment today. We're trying a new ppi to see if that helps and doesn't provoke yeast. We'll give it a month and if she is still having issues scope. If she has EE upon scope they will want me to put her on an elemental formula. I cried most of the way home.

The other options are h.pylori (unlikely) reflux that is hard to control or that yeast in the esophogus is causing the pain when the ppi is in her system.

[ASusan]

Patty - I'm so sorry. s:

Some of the things that run through your head are thoughts that I share. Am I "poisoning" DS by breastfeeding him? Do *I* have reactions and are his reactions compounded by them? And yet on nights when he's uncomfortable and itchy and arching his back, nursing is the only thing that comforts him. And to not have very much support is so difficult. And we had HFM a year ago. DS case was mild, and I attribute that to breastfeeding.

(ppi?)

[Pattyla]

It's been a couple of weeks since I updated this.

The new med isn't working for dd so I called the GI and they scheduled a scope for Dec 8th. I started gaps that same day (about 10 days ago) and am seeing improvement in dd but I can't seem to progress beyond the intro diet for her.

So it is all boiled meat and veggies for us right now.

I'm not sure if we will do the scope and if we do and she is found to have ee what to do about the formula recommendation. I have no idea how to wean a toddler, much less wean her to something that tastes vile. I'm also not sure if that is the right choice for her.

She is currently off all supplements (as am I). One good thing is that the homeopath I am seeing gave me a remedy for her that seems to be helping. At least short term.

[mamafish9]

If she's doing better on boiled meat and veggies, maybe she just needs to stay there for a while and let her gut heal a bit? And maybe you can get her to a place where the chelation can get back on track, since it sounds like that may be a big piece of the long term key.

[Pattyla]

She is doing better on boiled meat and veggies but I think I'm gonna crack.

I think her molars are on the move too. Makes it hard to tell what the real issue is.

She went to the allergist today and got spt for 45 foods. She tested +1 to carrot, flounder and hazelnuts and +2 to celery. Allergist thought they were probably all false positives. Still avoiding cod since she had a clear ana reaction to that one. (forgot to get an action plan for what to do if another reaction, waiting for a nurse to call me now.)

I'm beginning to think that this diet isn't so great for me. Hard to tell if it is mental or physical but I'm not doing well at all. I had an egg yolk today. We'll see if she reacts to that, not sure if I'll even be able to tell with everything else going on.

[sbgrace]

You are close to the scope. And if she has EE I think you need to know it. I wouldn't change the diet this close to scope. You want to know if she's got damage. You can switch it after scoping.

As far as the formula even older kids somehow manage to switch to it so I think it will somehow work for you. You may find that she feels so much better it's actually easy. If she needs it to be healthy (she very well may based on what you wrote) she needs it as I know you know.

This has to be really hard. I think you're doing the right thing with scoping though. While they are in make sure they test any possibilities (you want a celiac test/bx while they scope if she's getting any gluten, even via breastmilk).

[Pattyla]

I've made peace with doing the scope. Now if i could just convince the hospital staff that forcing my young toddler to go 9 hours without food or drink isn't a good idea I would feel even better about it. So frustrating! Breastmilk absorbs in 90 min or less. A dehydrated toddler is going to be hard to get a vein on (she isn't easy to stick anyhow.) Why does this make any sense? The kicker is that the hospitals own website says bm 3 hours before and clear fluids 2 hours before sedation procedures but the admission staff insisted nothing after midnight.

[Pattyla]

She had her scope today. It went well. Yesterday the hospital finally checked with a Dr and he said bm 4 hours before and clear fluids till 2 hours before. DD did great and hardly seemed to notice that we skipped breakfast and let me easily distract her from her requests to nurse. The Dr didn't see anything but she didn't expect to. She took lots of biopsies and I'll get those results on Friday.
I have been eating one egg yolk a day for several days and although dd has had some odd smelling poops everything else seems normal. I'll give it a few more days and increase to 2 a day and see how she does. I would so love to get eggs back into my diet.