I haven't posted here very much but used to read often before returning to work and remembered I got a lot of useful info here irt my kids' health issues and I'm lost again and am wondering what else we should be looking into. I appreciate any suggestions. 
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Brief summary, almost 6 yr old DD started out with what I suspected was MSPI and did okay if I avoided dairy and soy. I took some bad ped advice and thickened feedings and wrecked my supply so I took Dom and supplemented with Alimentum and continued to bf until a year when I wasn't producing any bm even on Dom. She had been growing well until 6 mos when we started solids, she stopped gaining well, started crying a lot, stopped sleeping, etc, but I didn't make the connection at the time. As a toddler she was FTT, had a developmental regression, was suspected of having autism, etc, and improved dramatically when we took her off goat's milk even though it had initially seemed safe. She started talking within two weeks of stopping it and gradually improved in most other areas as well. Recently she has started losing more foods. She was already off dairy, soy, goat's milk, kiwi, and a lot of artificial additives like dyes so we stick with mostly natural/home made foods. In the past few months she has lost wheat, nightshades, and now eggs. She is not gaining weight and has lost a couple lbs now, she was 37.5lbs and is now 35lbs. She has been vomiting more again, generally she wakes up and throws up a couple times and then feels okay after but it is not "normal" vomit a lot of those times (tmi warning! it is often brown and smells so bad I've had her check and make sure she didn't have a bm while vomiting, the whole house smells after) and will happen a couple weeks apart for a day and then nothing for a month or two and then a couple more days a couple weeks apart, etc. She has also started to complain about her heart hurting, from what I can tell it's "heartburn" so now she's asking all the time why she has heartburn. She is also *constantly* hungry and will ask what she's having for her next meal/snack while eating one. Her behaviour has improved dramatically as we've figured out some of the food stuff, she is a little less picky and anxious which is good b/c with the restrictions pickiness is not an option and the anxiety causes a lot of behavioural stuff (esp with control issues). She is still getting red cheeks and eczema on her hands that gets to the point of bleeding occasionally and only mildly elsewhere. She had bladder issues but she's been pt'd so long now that I am not sure if she still does, she would have the frequent small pees that seem to be related somehow to allergies (I wish I'd known, we've seen a urologist, nephrologist, had two vcug's, etc, for that with constant blood in her urine which is apparently most likely caused by irritation from food allergies).
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ODS turned 2 in early Feb. I was lucky with him that I knew what I was dealing with right away, he started vomiting mucous from birth which we thought was from his quick birth but it never stopped and soon he was having mucous in his bm's as well. By 1 month he had dry patches of eczema and I'd already eliminated dairy and soy and was starting wheat. By 8 mos when he had only gained 2lbs since 2 mos he was admitted and switched to Neocate. He had been gaining a little and then losing it for a month or so by then and I'd avoided everything I could think of and even ate nothing but potatoes, pears, and chicken at one point since I'd had that recommended but it didn't help. He couldn't tolerate any solids. He had been scoped at 7 mos and the GI dr said the slides were normal, he had been sure ODS would have an EGID but left it as multiple food protein sensitivity and suggested we wait 4 mos on Neocate before trying solids if it went well. Steroids were mentioned but only if nothing else worked. When he was switched to Neocate ODS had lost so much fat that when he stood against the edge of the bath his legs that had been chubby as a newborn sagged in folds toward the floor. We started solids at a year and it took a few mos to get him to willingly eat much, he had a few foods from 15-18 mos when he started losing foods again. He had off and on diarrhea, started refluxing more again, more eczema, waking in the night screaming, was miserable. By 22 mos he had lost most of his foods again, at 23 mos he was getting just Neocate and rice but still had symptoms so just after his second birthday he was back to just Neocate. We tried switching to E028 Splash and he doesn't seem to tolerate that so we're trying to transition to Neocate Jr now but this is day two of two scoops/cup and already he has eczema and is mucous in his bm's so it's not going well. He's also saying "oww" and grabbing his lower belly a lot. When we saw the GI dr recently recommended immunology testing so we've asked the allergist about that and will be talking about it in May I guess. His main symptoms before stopping foods again were diarrhea, reflux, eczema, stomach pains, food refusal, red ring, dark circles, and frequently peeing a couple drips at a time every couple of minutes (while desperately wanting to pt and I won't let him take his diaper off b/c when he has diarrhea it seems to strike him from nowhere).
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BDS is 7 months old now and is not as as severe as ODS was as a bad but is worse than DD was. We have been trying solids for two mos now and he loves eating but vomits even more and has all the other signs as well. I haven't found a food I am sure he is tolerating at all and have given up for right now on that. He cries a lot and I wish I could make him feel better.
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So is there anything they're missing I should be asking about? DD was seen by genetics/metabolics who spent barely any time with us and then said they thought she was fine but would take some blood to be sure so I may ask for a second opinion and have all three kids seen if there's anything there that should be considered. Our family dr is very frustrated with the lack of answers as well and is referring the kids for a second opinion in a bigger city hoping maybe a fresh pair of eyes will be able to figure it out. An official diagnosis with some sort of expectations would be nice, right now we have nothing but strange looks and comments about our kids' diets. It would be so much easier even if I could say they have "____" instead of trying to explain why they can't have almost everything.
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Thanks for reading and even just reassurance that I'm not alone with this. A lot of days I'm feeling like I must be crazy, I must be wrong about some of this stuff or it's something else altogether b/c that's what I'm always hearing. Recently ODS had a GI bug that landed him in the ER on IV's and my mom decided to tell me it's b/c he's not getting solids and therefore has nothing to fight it off b/c he NEEDS food, I guess I needed the guilt? 
I just want them to feel better. I hate seeing DD so sad as she loses foods and isn't feeling well or when ODS is begging for food and can't have any. I wish the dr's could spend a couple days with them and see that, maybe they'd try a little harder to figure it out!
