Our Own Little Thread :) - Page 2

[mamafish9]

Yup, sulfur foods can be a challenge for some (mo does help a lot). Can you get a brand called Allergy Research Group / Nutricology in the UK? They make mo drops that would be really easy to give your LO. Thorne makes mo capsules that are 1000mcg, if you can get those. Alternatives in case you need more mo down the road.

Sulfur and sals go down the same pathway, just slightly different points in the pathway. I'd address the mo/mag/B6 pieces first, it could be that sulfur is causing an issue because you have a bottleneck at the next step in the pathway (that requires mag). So this all may shift some as you add supps in. Just remember it's also a bucket reaction, and try not to each too many sulfurs in one day.

The bad news is, food chemical sensitivities can take a LOT of foods out of your diet (my son reacted to gluten, dairy, corn, soy, apples, potatoes, most starches, and sals at one point). The good news is, if it's a nutrient deficiency underlying the sensitivity, it can often improve quite quickly.

OH, and DO NOT TAKE glutamine + glycine . Bad, bad idea for a little one with lots of food chemical sensitivities, they form glutamate in the body (imagine feeding your son MSG, same basic effect).

[mama9]

Originally Posted by mamafish9

Yup, sulfur foods can be a challenge for some (mo does help a lot). Can you get a brand called Allergy Research Group / Nutricology in the UK? They make mo drops that would be really easy to give your LO. Thorne makes mo capsules that are 1000mcg, if you can get those. Alternatives in case you need more mo down the road.

I just re-checked my order at iHerb and it is indeed the ARG Mo in drops that I ordered . We do have that brand in the UK and I was taking their supps a few months ago for healing my gut. I believe some of those had glutamine in them though!

Sulfur and sals go down the same pathway, just slightly different points in the pathway. I'd address the mo/mag/B6 pieces first, it could be that sulfur is causing an issue because you have a bottleneck at the next step in the pathway (that requires mag). So this all may shift some as you add supps in. Just remember it's also a bucket reaction, and try not to each too many sulfurs in one day.

Thanks for giving me digestible information! I was trying to research yesterday but got so overwhelmed - trying to learn it all at once and not taking in anything!

The bad news is, food chemical sensitivities can take a LOT of foods out of your diet (my son reacted to gluten, dairy, corn, soy, apples, potatoes, most starches, and sals at one point). The good news is, if it's a nutrient deficiency underlying the sensitivity, it can often improve quite quickly.

Yes, I'm already there with the foods being super-limited and I'm the same with the foods you mentioned, with fish, lentils, chickpeas, avocado, nuts and others included (now with sals/sulphur, possibly amines) - but I'm excited because I tried salmon last night and so far he is okay! We missed a bath and had some restlessness through the night. I am keeping my fingers and toes crossed that we can bring fish back. We'll do a bath today and see if he improves some, with no new foods or high sulphur foods to confuse things. His runny poop is still here though and it's been a week.

CAN'T WAIT to start supping!!!!!! May have to start pumping with those new teeth though

(imagine feeding your son MSG, same basic effect).

This is why the elemental formulas are scary for me.

I was reading something about B6:mag ratios being significant for PST. Do you have any tips about this? Also my mineral complex has 200 mcg of copper. Will this reduce the mo in there significantly? - there's 150mcg mo in there (although we'll be supping those drops too);Have you tried No-Phenol and do you think it's worth a shot at some point?
xxxxx

[mamafish9]

Don't worry about mag/B6 ratios - I think the right balance is different for everyone. Don't worry about the copper, it's a really small amount. We tried no-phenol, it didn't do much for my son, but it does help some. I wouldn't give it to a guy as little as yours though.

And yay on eating fish, I hope it does work for you!

[mama9]

Hi mamafish, thanks for your reply. I was thinking to try no-phenol on myself to try to reduce sals in my milk, but not sure if it will make a difference for ds.

We had a rough night where he kept waking up and crying, he looked as if he was having nightmares or something during the night. He was a very unsettled baby and very gassy. I don't know if he's still processing the sulphur from a couple of days ago or if he is just not tolerating the fish. This has me very desperate because I'm on so little foods. On a side-note, I've just been told that we have two weeks to find a place and move out of our apartment so I am super-stressed and I have limited time and energy too.

So gutted that the fish isn't working out...I thought is would just about save things.

Lamb is starting to make me feel unwell and nauseous after eating it and chicken isn't 100% okay for him in large amounts, although I have some to eat today for lack of a doable alternative for protein right now. I'm suspicious of the rice but without it there are no extra calories for my milk. Without sals and no sulphur until we can start on those supps, combined with the other pressures around me, I'm going a bit mental here. I spent last night feeling like a terrible mum - no logic to it - probably need b vits very soon - hurry up DHL and bring me my supps lol.

I even wanted to give up bfing which is so not my style. My DH persuaded me to keep going, that I'm so close to getting to the bottom of this and that all of the hard work over the past 7 months is paying off and that once we try the supps (combined with our growing awareness of sals, etc) we will probably get even closer. Also, he has improved massively. It's just that I get swayed with every reaction that he has, especially if I am stressed, tired and on limited foods iykwim.

Honestly, at this stage, I'm thinking to the have odd fish here and there - just not too much and too close together. It may get better with time and nutritional support via supp and hopefully more added foods. I may even include the odd egg, again, just spaced out - it's like I'm juggling sals/amine/sulphur buckets right now but I need to keep up my supply.

Okay, I'll go fry up some chicken
xxx

[mamafish9]

Oy, I hear you. Hard enough without having to move too .

With your son reacting to so much, I'd try adding foods back on a rotation diet - only eat anything once every 4 days. So eggs once every 4 days, fish once every four days. Pick 4 different grains (so rice only once every four days, rotate with other things). 4 different veggies. That way his body doesn't have time to build up a reaction to anything. Works really well for some people.

[mama9]

You know, I was thinking the same thing (about rotation) on my way back from the supermarket this afternoon. I've never done a rotation before with foods but it makes sense at this stage, especially that DS builds up reactions to foods I eat a lot of and too often. Thanks so much for the tip on that.

When you say 'once' every four days, do you mean for example on Monday, have some rice for only 'one' meal and not at any other meal on that same day - then again on Friday? Or would it work if I ate rice at more than one meal on any given day?

I tried a little coconut oil today. I don't know about DS but I felt AWFUL! My throat instantly turned to sandpaper and I started to sneeze. I felt so heavy and out of it and now I have a headache. Never ever thought I would be sensitive to coconut oil. I wonder if I would react the same with coconut milk or the meat. I guess I'm finding out about myself.

[mamafish9]

Oh no, sorry you reacted to the coconut oil!

For a rotation, I'd eat it any meals you want during the day (but try not to go crazy with any single food - so add enough foods into the rotation for that day you can have some variety). Some people have success with this by adding in foods they don't normally eat (so their little ones haven't built up a reaction). So add some new green veggies, or beans, or less common meats, or whatever.

[mama9]

Originally Posted by mamafish9

Oh no, sorry you reacted to the coconut oil!

For a rotation, I'd eat it any meals you want during the day (but try not to go crazy with any single food - so add enough foods into the rotation for that day you can have some variety). Some people have success with this by adding in foods they don't normally eat (so their little ones haven't built up a reaction). So add some new green veggies, or beans, or less common meats, or whatever.

Okay, I love the thought of new foods!! lol!!! I went to the supermarket and picked up some mango, butternut squash, parsnips, beef, turkey. I even have some avocado which I will go very slowly with. I will need to order some alternative grains online. I am looking forward to eating new foods.

DS was horrific last night - he had a poop attack, filled over 7 diapers in 3 hours, with lots of crying. But today he is so very happy, his skin is great. The stubborn sandpaper rashes he's had for a while have all completely vanished overnight without a trace?!?! Could the coconut oil been a friend or an enemy?

He is just left with a burn like rash on his butt from all of the pooping last night but it's drying up and healing.

[mamafish9]

Don't know, but you shouldn't eat coconut again .

See how he is for the next few days. And enjoy trying some new foods!

ETA: Above, you talk about trying no-fenol to reduce sals in your milk. It doesn't seem to work that way - no-fenol actually digests cellulose, which seems to free up the sals, and make it easier for some people to handle them. But your liver can only process sals at a certain speed, even better digested/available, so they still get into your milk.

[mama9]

Originally Posted by mamafish9

Don't know, but you shouldn't eat coconut again .

See how he is for the next few days. And enjoy trying some new foods!

I tried avocado and beef - wish us luck!

ETA: Above, you talk about trying no-fenol to reduce sals in your milk. It doesn't seem to work that way - no-fenol actually digests cellulose, which seems to free up the sals, and make it easier for some people to handle them. But your liver can only process sals at a certain speed, even better digested/available, so they still get into your milk.

Okay, thanks mamafish. Still waiting for our supps - iHerb have moved warehouses this week so deliveries are running a tad late.

We did another Epsom salt bath tonight and I ordered another couple of kilos of salt which arrived today which is great. This salt was named after a place which I don't live far from (Epsom in Surrey)

[mamafish9]

Originally Posted by mama9

We did another Epsom salt bath tonight and I ordered another couple of kilos of salt which arrived today which is great. This salt was named after a place which I don't live far from (Epsom in Surrey)

Cool! You ship me salts, I'll ship you supps .

[mama9]

Deal LOL!!

Couldn't sleep last night because yet another stranger made a comment about how 'teeny' DS is for his age - even asked me if I have to buy extra small clothes for him. Second stranger this week to comment. When I picked him up to stand on my lap (as this lady was talking to me) DS trousers fell down to his ankles. Never happened before. Also his clothes are seeming a little too big for him recently. He was really tall for his age up until around 4 months old and had to wear clothes for a 6-9 month age range. Now I'm waiting for him to grow big enough to wear his winter coat (6-9 months). It's like he stopped growing at some point. I must get him weighed next week to see if he is on his curve. I don't really care for the whole percentile chart thing but I am starting to notice that he's not growing any bigger.

Also, about giving him solid foods. He loves food but I don't know what to give him at this stage where he reacts to so much. I could re-try some foods, maybe try a little sweet potato, perhaps some salmon, a tiny bit to see if he tolerates it.

I was thinking of putting together custom/homemade supps for him. Perhaps I can trial each one on him one by one, say start with mag (for mo or any other liquid drops I can stick to the liquid format for those), then b vits such as P5P, methyl B12, folate, etc, then C, A, D, etc, then some more minerals such as zinc, etc. I could leave out iron and calcium for now and bring them in super slowly. Eventually I can make him his own multi vit capsules from only the hypoallergenic brands and use the supps he best tolerates. I can research the general amounts for babes his age and take it from there as he'll need a lot more of some (mag for example). I can always change the quantities and ingredients depending on what he is going though, etc.

[mama9]

Runny poop finally showing signs of disappearing...

...and I think I know the culprit (mama-gutology). It could be lamb. I have been eating lamb for ages now, every day and at every meal. It was giving me nightmares! Anyway, I started to cycle the foods and haven't had lamb for two days straight. On the first day off of lamb his poop went from looking like water to a light lotion in consistency. Today it is turning into a more soup-like consistency. He's also doing less in the day time and is back to one big poop a day with a few little bits in between. I highly suspect the lamb and I had a gut feeling that he was getting sensitive to it (me too actually).

So that is one thing that we seem to have puzzled out for now. Of course, with the cycling of foods (rotation), it means I have to grow the balls to re-introduce foods I was afraid to eat. It's a good thing I think otherwise we'll be like this for longer than necessary. I tried foods so far that I was previously afraid to. I trying out these organic gluten-free buckwheat crackers - first thing pre-packaged that I've tried in ages so I pray it will be okay. Can't stand it otherwise!

I believe that I ate way too many sals the other day and that this brought a strong reaction in him because he has two very disturbed nights, gassy, irritable, just terrible. His skin is okay though, but the sandpapery rash that disappeared miraculously came back a little. I went a bit mad on some high sals foods, but I think the main culprit was the reintroduction of olive oil to fry a couple of meals in. I don't know if it would have made a difference if I consumed it cold instead of heated in a pan but even I have a rash under my eye and last night my dreaded hip pains came back with a vengeance.

What I did was make a list of culprits with the most suspicious at the top of the list and I will work down the list, for example, olive oil is at the top and if he is improving, even with the other suspicious foods, then I will assume it's all good with the rest down the list.

So....for fats so far I'm just on goose fat. I am not eating lamb for a little while so there is no lamb fat, no olive oil, no coconut oil. I don't intend to fry with sunflower, canola, etc. I never fry with those oils, even before I was pregnant - only olive oil. I have a feeling that he is not 100% with the goose fat but I don't think it is serious. I would love to rotate it with something though so I will go find me some palm oil to trial.

Supps should be here tomorrow I hope they work out well for us.
xxx

[mama9]

Aaarrrrrgggghhh!!!!!!!

I'm sick and tired of this. I just want to make him feel better.

Something has gone wrong. I now have my little boy in a position where he will not breastfeed unless he first lies face down on the bed and then props himself up with his butt in the air, standing on tip toes with all of his body weight on his head. I don't even know how my boob manages to stay for more than one second but it doesn't last, it slips out, he crawls forward and starts to go nuts and cry because he can't lie still or stay still to feed. He has had over 3 nights where he is crying in the night, rolling around, crawling around in his sleep, trying to feed but can't feed because he is not able to stay still and being half asleep he can't do his head stand thingy and then he just turns away from me.

He got a rash today (it went today too) and he is acting very strange. He gets very very hyper active and when he is not hyper active he is crying. He doesn't usually cry, not even through the worst of days, it takes a lot for him to be crying, let alone all day/night.

He keeps on grabbing my hair and I mean 'grabbing', pulling out a clump and stuffing it into his mouth. He does it with both hands and goes nuts if he can't eat my hair (is there a mineral problem here??? - zinc??). If he can't get my hair he will bite my face and with 2 new sharp teeth it ain't pretty for me.

If he is not feeding like he needs to do a yoga posture (bless him) he is crawling across the bed and getting very upset because my boob can't travel with him. If not that, he is hitting himself in the head repetitively. I try to shield his head and he will just hit my hand instead. I am SO worried about him.

I'm starting to notice symptoms in myself too. Like, I have been having these mad headaches after meals which have no sort of trend. But I had a day off of rice and no headache. Tonight I brought back rice and I have a headache. I don't know if it is my mineral supps because I brought those in today too. I think it is the rice. Could be the rice (and/or lamb) that brought on that crazy 2 weeks of Ds's runny poop. I don't know. It all seemed related to the teething but I'm confused now.

I'm starting to hate food - how can that be? It's just......hassle...

So, my supps from the States will arrive tomorrow - good.

I'm just mad and I'm feeling over this. I'm exhausted, I'm at my end with it all. I know I've got a lot going on in my personal life but really, I don't know how I'm not loosing my sanity by now. I try, and try, and try, and try...I'm eliminating this and that, trying this and that, and I feel like I am back to square one with no bloody dairy, soy, gluten, corn, and other stuff for months and months, spending too much time trying to research and learn how I can help him...I just feel so mad.

I don't have an alternative to give him right now. I saw how he reacted to coconut oil. It's in the elemental formulas. I'd be terrified to give him that.

I have lost so much weight that it's scary. My hair is still falling out. My teeth are starting to get scars on them. I can't remember when I last had enough calcium and I'm fearing for my own health. I never planned to stay on an ED for more than a few weeks and honestly, since DS was born, life has felt like one f*%@!*g long ED. I would do ANYTHING to make him feel better and I'm trying. I'm just running out of foods/plans/hope?

One more thing to rant about - I'm TIRED of passing by food in the supermarket because that veg may have too much sals/amines/sulpher whatever in it. Got no bloody fats left to use - I swear that the goose fat is a major problem for him and I am positive that palm will be a disaster as he couldn't deal with it when he was a newborn.

I want to scream right now.

[mamafish9]

Sweetie, that sounds awful.

Not tolerating any fats is a red flag for me. I'd take him in to a health care practitioner with experience with mitochondrial issues. They need to be ruled out (lots of kids with mitochondrial issues can't properly digest fat, which leads to fat soluble vitamin & mineral deficiencies, which can cause a big cascade of issues).

When you haven't got enough foods you can eat to stay healthy, it's time to get professional help. Also, it sounds like you are reacting to foods, and it may be complex to untangle your and his reactions - keep that in mind as a possible variable.

[mama9]

Originally Posted by mamafish9

Sweetie, that sounds awful.

Not tolerating any fats is a red flag for me. I'd take him in to a health care practitioner with experience with mitochondrial issues. They need to be ruled out (lots of kids with mitochondrial issues can't properly digest fat, which leads to fat soluble vitamin & mineral deficiencies, which can cause a big cascade of issues).

When you haven't got enough foods you can eat to stay healthy, it's time to get professional help. Also, it sounds like you are reacting to foods, and it may be complex to untangle your and his reactions - keep that in mind as a possible variable.

Thanks so much for your post mamafish. Just waiting for DH to come home...right, I didn't think of it as a fat digestion issue. When I look back at the diary, I've seen problems with olive oil, coconut oil, palm oil, goose fat, and lamb, which is 20% fat (the lamb we were eating). Oily fish is a problem (haven't tried white fish yet). Potato chips were a major problem in the past, I couldn't eat even a few without having DS climb the walls after the very next feed. Avocado is a problem and it's fatty. Egg is a problem and it's fatty. I'm sure there are more but I just can't remember at this moment.

Right, I totally can't continue without enough foods. There is determination, love and hope, etc, but when it boils down to the facts, if I don't have enough foods, I can't win things this way.

My DH says that his daddy instincts tell him that DS will have less issues or just different issues if fed directly and not through my milk because I'm reacting to so much right now.

DS is screaming/growling and trying to do headstands as if his tummy is killing him or something, and I'm not even feeding him. My poor baby.