Oh, Sarah Jane, I will praying for you and Connor. I am soooo sorry and my mother's gut just feels so deeply for you and your little boy. And I will also be praying for Logan, too, as he probably feels your stress.

I just got on to post a little warning to all. Abigail has had a nasty virus with 104 F fevers. I had been using Fever-All suppositories on her when I noticed how irritated her bottom was, plus a return of some really loose stool (still not sure if it was just the virus causing the loose stool) but anyway I read the label and Fever-All has 'hydrogenated vegetable oil' in it and we all know what that means...Anyway, I guess she can tolerate soy oil from my breastmilk but not directly. I had a pharmacist make us up some out of coconut oil. Didn't try them yet, though, as her fever broke yesterday.

Okay so just to tell you all Connor was diagnosed yesterday with an extremely rare form of Leukemia. We are going to have a very hard battle ahead of us to save his life. I am having a pretty hard time with everything and on top of it Logan is not happy lately. I am not sure if he is reacting to the formula finally or if he is getting teeth or maybe an ear infection? If he happens to be reacting then what is our next step? We are going to be struggling to keep our house with all of the medical bills and that is without Logan having to be on even more expensive formula. Anyone have any ideas on how to get insurance to pay? Or maybe some other type of help...government or foundations?? HELP!

That is so interesting about your daughter, Jill, I wonder if my two year old, Connor, would be less extreme if I were to eliminate dairy from his diet. I keep thinking about it off and on but i think we are now at a point where is has to happen. He was unofficially diagnosed with neurofibromatosis last week after he had surgery to remove what we thought were cysts(now we think they were tumors). It is crazy but after reading more about the disorder I find that lots of the kids that are diagnosed have milk issues too! Also I found out that the dairy can make the tumors grow bc of the estrogen content?? A non dairy diet is supposed to be helpful with this disease and so many others! Why are we all drinking milk!?!?!?! How does the dairy industry have us so convinced it is good for us? I am lost.

Oh and a quick update on Logan(6 months): He has been on Nutramigen AA for a month?? He is doing okay...small rashes and some fussiness and small amounts of mucous every now and then. I think this may just be as good as we get though. I am still waiting on shots and on solids. He is being put on the back burner though while we deal with Connors issues. Will there ever be peace??

Hi Folks: well no family in need has come forward to ask for the Elecare or Alimentum that we have in the formula bank. So now I am opening it up to everyone of you. If need either of these formulas, just send me your address and you will only need to pay for shipping. Please let me know at cbryant@thepicfoundation.org.

thanks,

I am on day 5 of our soy foods trial. Everything seems to be going fine except for Abigail's 'allergic shiners' have returned. Her skin still looks good, poop normal, mood okay. Strangely, the first time I had some soymilk straight up (not cooked in foods like the first time I tried it) my earlobes were itchy. I thought, great...some hidden allergy in me surfacing...but I tried a smaller amount tonight with no appreciable symptoms.

On a different note, my 12 year old finally submitted to a less-than-perfect dairy elimination diet for 10 days. Her extremely bad case of keratosis pilaris looks better, a rash around her nose is clearing, and best of all, her behavior much improved. She re-introduced dairy today and she was hyper, difficult, clumsy, and fought with her siblings all the day long. Now, this girl LOVES dairy. I hope that the differences she's seen help her stay strong with temptations everywhere...

Carrie: He might like trying little lumpy fresh banana (mashed with a fork) at this stage or just mash it real good if he likes things smooth. I had and still have had no luck with the usual starter foods...pears, winter squash, sweet potatoes. But banana, avocado, carrots, green beans, apple have all been good. I sometimes wonder if there was just too much of those "safe" foods in the TED, and now the babes react to them.

I have not tried the Cal Baby sunscreen. I just use whatever my other kids use at this point. I have used the Jason Kids sunscreen with success, although it is hard to rub in.

Stefanie: I would pump at least 24 hours. That has seemed to work ok for us, but also try not to eat a huge amount of straight dairy, like ice cream. If you do I might pump a little longer. Of course my guy is extremely sensitive too though, so 24 may be enough anyway. Never know till you try. I wouldn't do less though.

Ok, third day of winter squash and we have red ring, eczema developing, and terrible reflux leading to sleep disturbance. Should I stop and try something else like pears?

Also, for his first solids, since he's almost 8 months, is it ok to do stage 2? What's the difference? Does it matter much at his age?

Jill: do you also use the California baby sunscreen?

Well just checking in... I think beef must be a biggie for us. When I look back, once I started the MSPI diet I was eating a lot more ground beef than normal as I attempted to cook more meals. We have been doing a lot of chicken lately! We have fallen into a routine of bf throughout the day and using formula for the last feeding of the night and at 6AM. We've been doing this for four days is all... so the jury is still out. He still seems to have increased fussiness about 45 min after he eats (formula or bf), but it is less acute and much more manageable. No runny/mucous/bloody stools, no awful rash. I hope we're on the up and up.
Question: I have heard that food can stay in your breast milk from 2 weeks to 12 hours to 4 hours. If I eat something, how long can I wait (if at all) until it is 'out' of my milk? In other words, "cheat" and then "pump and dump"?
Hang in there ladies! What a blessing this board is to me!!

HI KiminMO: so sorry for your troubles but glad you founds this board. It was a God-send for me. Also take a look at www.thepicfoundation.org. It is an educational website started by some of us moms from this board to group all of our combined knowledge into one place. I agree with Jill about the rotation diet for yourself as well as for your baby when the time comes for solid foods. As far as the mucus/blood stools....the sweet potatoes could be the problem. Some of these kiddos just can't tolerate them. However, it may be more likely that your LO's gut just needs time to heal. Are you taking flax seed oil? That has a healing/anti-inflammatory property to it. That may help you both. In regards to b/f, I would definitely say to stick with it if you can. My dd was a preemie and never really nursed well so I pumped and bottle fed her for 6 mos. It's not preferable but it can be done. I did have a few times when I had to fight to keep my milk supply going. Those were mostly times of stress and lack of sleep. You need tons of fluids and lots of rest. Get a good hospital grade double electric breast pump (can be rented from hospitals or local La Leche Leagues) and pump like crazy. When my supply would get low, I would pump every 2 hours for about 24 hrs (I would go 4 hrs at night) and that will increase your milk supply. Also, I drank mother's milk tea and took fenugreek supplements but I have heard of babies experiencing increased symptoms with the fenugreek. so watch out for that. Just know that you have a ton of support here and you are doing everything you can. You may want to try Neocate or Elecare just to see if your little one can tolerate it so you will have it as a back up. But even the switching between formula and breast milk can cause increased symptoms to an already irritated GI tract. The best advise is rotate your diet and keep a food log. Good luck and hang in there :)

KiminMO: Sorry! I didn't mean to hit send yet...anyway, if you have any specific questions for me, please ask. I also have some articles sent to me by Dr. Jack Newman, which helped me a ton. Email me if you would like them...j2thaxton@att.net.

KiminMO: Your situation sounds alot like mine...I take it your little one is happy & gaining weight? The fact that you don't have visible blood is a pretty good sign. Here is a quick summary of our situation: My baby, now 11 months, had tons and tons of spitup (some might say vomiting) from her first week, liquid poop about 10 times a day, which eventually turned into mucous and blood. She developed eczema at 2 months, I cut out dairy - spitting up improved (but still there), eczema disappeared, poops spaced out but were still liquid/mucous/blood. Short version is I eventually dropped down to eating only lamb, winter squash, sweet potato, and pears. Still mucous and blood but the frequency decreased and she was still gaining weight (and happy, too, which I realize is a BIG help in continuing bf). Saw allergists, GI and all agreed that continuing bf (if I was willing to continue) was good and thought that her problem was probably (mostly) confined to her colon (proctocolitis). I was determined but starving!!! So, I started a rare foods rotation diet...basically eating a different grain, protein, and veggies/fruits on a 7 day rotation. I was able to fairly quickly determine that some foods were no problem, and I could eat them freely, but others, like rice, I could only eat for one meal once a week. It seemed like I would typically see a reaction by the next day (mucous, red ring around anus) for problem foods. Eventually, the blood was not visible, and a few more weeks went by and was not detected by testing, either. At 6 months, we trialed pears, squash and sweet potatoes which all failed (major return of mucous/increased poops/red rash) and decided to let healing continue without solid foods. By 8 months, the mucous was pretty much gone, so we began solids again (BTW, she still failed sweet potatoes and pears as of 11 months...maybe something to do with my TED earlier?) Patch testing at 9 months revealed weak positives to soy, rice, wheat, and peanut, which basically means we try them anyway. So, looking back, the docs that told me that the benefits of bf despite blood/mucous (in the presence of weight gain/content baby) were right. It was very hard and I was willing at one point to drink formula myself but I am soooo glad that we kept going. I never really ever got to the bottom of her sensitivities...I think that the rotation diet just helped us limp along until she began to outgrown them.

I should add that I have no helpful Dr...so I'm completely on my own. We went through this with dc#2 and had NO help from her dr or any specialist we saw. Luckily removing dairy and soy from my diet was all I needed to regulate her. Oh, and she couldn't do egg once she started eating it herself. She is 4 now and starting to tolerate most everything though. Yeah!

Question for you ladies. I am currently on a TED for my DS who is 6 1/2 months. I was already dairy, soy (including oil and lecithin), egg and peanut free since he was about 6 weeks. He was a super happy guy after I cut out the first few things, but continued to have a fair amount of spit up and horrible diapers. Most days he'd have 5-7 liquid stools (they would just soak into the diaper like pee-no substance at all). If anything was there it was mucousy. I tried removing other things in addition (like citrus, chocolate) but couldn't get anything to change. On June 1st I started the TED. Turkey, pears, potatoes and sweet potatoes, rice, and squash. Olive oil, salt pepper and brown sugar were my only additives. The spit up actually got worse and the diapers didn't change. After 2 weeks I eliminated the rice. The spit up got MUCH better. The diapers have gotten slightly better, but not great. They have a little more substance to them....but it is pretty mucousy. I got some home hemoccult tests and did one yesterday-it had one tiny point that may have been +. I'll keep testing to see how they look. I don't think I can cut anymore out...I've lost 6-7 pounds that I didn't really need to lose and my milk supply has started dropping the past week or so. I REALLY want to keep nursing...but don't know what to do. Any suggestions? I'm also wondering if two weeks of Neocate would be enough to heal him up so we can start "new" again? I'm worried about my supply while pumping that long-especially with the current diet but I don't know what else to do! I'd love any opinions! Sorry this is long.

Stefanie - also double check your bread. Some of the breads have whey in them. I learned this the hard way.


Melanie








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Christy, thank you--I know we will end up with extra Neocate when Evan moves on and I've been wondering what to do with it.

Stefanie--Evan also reacted to beef in my diet, although it took several days for his poops to get mucousy. I wonder how common it is to react to beef and milk, and whether he'll stay allergic to it.

Jury is still out on the wheat trial, Evan has had some mucous but no blood and no diarrhea, but he also has a cold this week. We'll try again when he's healthy. The GI said Evan (12 months) is a little old to have mucous as an allergic reaction, has anyone else heard that?