Desperate for Healing

[christamom]

DD is 20 months and has had visibly bloody stools for over a year. She is only 19 pound and not gaining weight, despite eating well. She's been fussy, colicky, never able to sleep well, gassy, and irritable since about 2 weeks old. We started solids very slowly as she refused to eat. As she began to increase her solids, she became horribly constipated and even daily miralx was no longer helping. We switched pediatricians because her first one said these symptoms were normal. Her second pediatrician put her on miralax and told me to feed her lots of milk and cheese to help her gain weight. That's when it got a lot worse. We now use a magnesium supplement to keep her regular which works wonders, but despite months of elimination diets, she continues to have visible blood in her stool. I know she is allergic to dairy, beef, and bananas. As far as the pediatrician, I was able to convince her after sending in a stool sample, that we needed a referral to a gi specialist, but that appointment is not for another 4 months! My daughter is wasting away, uncomfortable, and not healing. Fortunately, she still loves to nurse and hope that my dedication to breastfeeding has somehow helped her through all of this. Additional info: I assume she has food allergies or protein intolerance based on her gi symptoms. She has no other "typical food allergy symptoms" such as skin rash, swelling, etc. (but she does still have cradle cap-which I know can be a symptom)
Anyway, my concern is that in 4 months at her dr. apptment..after she continues to bleed, they will want to a.) do a scope, which would break my heart to put her throught that. b.) have me stop breastfeeding or c.) tube feed her to get her to gain weight.
So, I thought maybe we should try to fix this ourselves (and believe me we've tried just about everything). I know this would be expensive, but what if she only got neocate formula (a nutritionally complete amino-acid based formula for kids over 1) and breastmilk....and I only drank neocate formula, fortified with duocal (neocate's calorie supplement) for about 2 weeks to a month to get some healing going on. I am at my wits end. I know this would be very hard to do and costly. I am in the process of trying to get some neocate covered by insurance for dd. Any ideas or thoughts as to why this would be a bad idea??? Has any breastfeeding mom ever put herself on an amino-acid based diet??? Remember, as long as I'm getting the calories I need, it is a nutritionally complete food.

[Hedwig_Fly]

I have no advice for you but I couldn't read and not respond. My heart goes out to you, I have tears thinking about what you must be feeling. Many possitive healing vibes to you and your little one.

I can't believe how long it takes to get into the GI speciallist. I truely hope you can get in sooner than 4 months. GRRR doctors make me so mad!

I am sure some wise mamma on this board will have some advice for you.

[kjbrown92]

It's been done, on here.
If you do the Neocate (and looking at your other post, it looks like you're starting). And it works, then add 1 food to your diet (and hers) every 4 days. That should give you enough time for delayed reactions. If symptoms return, take the food back out, wait for her to go back to baseline, then try another food. As you're doing this, keep a very detailed food journal (what you eat, what she eats, symptoms -- sleep, cradle cap, bloody stools, etc.) I have 2 spreadsheets to use as guidelines if you PM me with your email.
It sounds like food intolerances. And any food can be the culprit. At least you've found some of the triggers.

When my DS weaned at 8 months and wouldn't take a bottle of expressed milk, and he was intolerant to milk & soy, I didn't know what I could give him. He finally drank enriched rice milk. When I finally got to see the Pediatric GI 2-3 weeks later, he'd dropped from 75th to 25th percentile. Your DD is older, so even though 4 months is a long time (can't your doctor get you in any earlier?), it won't be horrendous if she's still BFing.

Did you ever go off soy? A lot of kids with milk intolerance can't do soy either.

The GI specialist I went to didn't scope either of my kids (2 different doctors, both affiliated with Children's Hospitals). Actually DS had a upper GI so they could check for a structural deformity, but he just drank their spiked formula while I stood by his head, and he was fine. The second GI doc (with DD) said why bother scoping when she was sure she'd find lesions and she wouldn't want to put a child through that (DD was 14 months at the time). We did an elimination diet and found the triggers.

Good for you to not listening to the doctor that told you it was normal (DS's first ped. said it was normal to vomit bile at every feeding at 2 weeks old too -- he's no longer our pediatrician either). And for trying to figure out your DD's issues. Everyone needs a champion, and you are her's.

[christamom]

Thank you so much mamas for your responses. You have no idea how much I need some support. Sometimes it all just gets too overwhelming.

As far as getting to the GI doctor sooner, we are on a cancellation waiting list if something opens up. Also, our pediatrician could have them get us in sooner if she tells them it's urgent, but she was hestant to even give the referral. She said that I was just seeing undigested food particles. Anyway, If I switch pediatricians, I lose my spot for the gi referral. I've given up on doctors!!

We've been extremely careful about food labels and been completely off of dairy and soy for a little over 2 months. we are also avoiding beans, banana, egg, and nuts.

All I need to do now is find some neocate on ebay!

[*mama moose*]

I know its hard to see your baby suffering, but I'd suggest a TED before a formula only diet. Its possible, yeah, but even when I tried drinking it to make up holes in my diet it sucked. Plus it is pretty hard to drink all of your calories needed (one reason why a lot of older "formula only" kids are tube fed), especially as a nursing mom.
Have you cut gluten? Thats a BIG one, seriously, huge. The other one I see/hear a lot is corn, which is in literally everything
If you do decide to go formula only I'll of course support you, but I just want to throw out a suggestion for a TED if you haven't tried it yet, its MUCH less gross tasting, and easier to eat a larger number of calories (plus you are eating solid foods as opposed to a liquid diet...)

[mtn.mama]

I don't know if you've heard about crystal testing... here is a link to an old thread about it. It is our biggest tool in getting/keeping my daughter on track. Really, I can't say enough good about it, nor can I imagine where we'd be without it. http://www.mothering.com/discussions...t=crystal+test

As far as the GI doc, try not to get worried about what he might want to do investigatively until you find out after the consult. Our appt turned out very differently than I expected. He left the decision to scope in my hands (though he recommended it and reflux meds), he never disparaged my decision to breastfeed and the blooddraws on my LO were practically pain/worry free.

Now, if you want to get in to see him sooner, then I recommend calling the office and sending them in writing details about your childs bloody stools and discomfort and slowed growth. Go over your pedi's head (and find a new one). Tell them you need to get in NOW, that waiting 4 months is not acceptable and is putting your daughter's health and wellbeing at stake. Be insistent. Call everyday if you can manage.

Hope this helps, reach out to us here for support, and GOOD LUCK!

Lisa

[glorified_rice]

[k9sarchik]

Have you done an elimination diet yourself? She could be reacting to what you eat in your breastmilk.
If you are not digesting food well yourself then you need to heal your gut as well.
This is my recommendations for you:

Stop eating Dairy, Wheat, Soy, Corn. Keep your diet simple with minimal spices also. Also don't eat the foods that you know your DD is allergic to.
Also take fish oil supplements because fish oil reduces inflammation.
You should also take probiotics and digestive enzymes.
I think you can also try some blue-green algae since it a nutritionally complete food mixed in some juice.

For your DD, I would also find her some probiotics and some children's digestive enzymes. I think you are already keeping her diet simple, but maybe even adjust it more, like remove corn and wheat and increase rice.

If you don't see a change in 2 weeks to a month then I'd recommend seeing a Naturopath, Homeopath, Bioset practitioner, or any other alternative practitioner that deals with healing digestive systems. Your regular Dr.'s may not find anything.

[changingseasons]

I was the one who did an elemental diet (for myself, DD was still EBF)... and it didn't work for us. I thought it was working- DD seemed to be healing up at first, and then after 2 weeks ended up having delayed reactions to the formula. I think that she was originally healing up because there was still something in my diet that was bothering her, so by stopping all foods she got a break from it.

So besides the fact that drinking a nasty, chemical, over-processed formula SUCKS, it might not even work. I would also suggest doing a very strict TED before going the formula route. Start with just a few foods (but lots of them, so that you get enough calories)- like turkey, rice, zucchini, and sea salt. Try that for a week or so and see if symptoms improve. If they do, then you can slowly start adding foods back in, one a week.

You just never know what foods could be a problem. Something as simple as stevia will give DD blood in her stools... which just proves, it really can be anything.

Check out my blog (link in sig) for our story, and more info about elimination diets and stuff.

mama. We've been though our share of doctors too, and haven't found one yet that knows anything about this stuff. I finally found a decent ped after almost a year of searching- she still isn't much help with the food allergies, but at least she respects the research that I've done and the decisions that I'm making.

[christamom]

First let me say thankyou to everyone for these great ideas. You have all really given me a lot to think about. I truely appreciate your views and experiences!

THE TED: I had previously tried a total elimination diet and only ate about 5 foods for about a week, still saw blood, changed the combo, still saw blood...gave up..was starved and ate anything I could find that didn't have dairy or soy. It was a frustrating experience because I don't know if I'm picking the right foods and we just weren't getting good results. My thinking is... if we could just get to base-line. That would be huge for us. No blood. No constipation. Just some relief. I will introduce foods SLOWLY, once we get to baseline and stay there atleast a week on the elemental diet. I'm not looking forward to it at all, but I jut really want it to work!!

Previous posters also mentioned gluten-doesn't seem to be a problem, corn-possibly??,

We have tried probiotics and digestive enzymes, but having trouble finding soy and dairy-free probiotics.

Checked out the Crystal Testing...very intruiging, will try when DD is asleep!!

[changingseasons]

Just keep in mind that on the formula diet- you will also be starving. No matter how much you drink. And just as depressed, and frustrated as you might have been on a TED.

I understand your need for baseline though... we're still striving for that here too, after 11 months.

[momma_c]

I just wanted to send you some
And tell you from our experience that I breastfed my son until he was 9 months old when I could no longer handle the pressure of his allergies. At 9 months old we put him on neocate and within 3 days he was completely clear of all of his horrible eczema and irritated belly issues and a much different baby all around. I really believe breastfeeding is the absolute best for a child but nothing I did was helping him which was why I gave in.
He is now about to be 13 months old and is on the Neocate 1+, he has very few foods he can eat and he is 19 lbs, so a bit behind your daughter in age but also not very high in his weight.

fwiw, his allergies are ana to milk and egg. also a bit lower in level are peanuts, soy, beef, banana, and cats. there are several others suspected which we have additional testing for monday.
i am very grateful for neocate, i really wish we could have had the amazing nursing relationship i was expecting for a few years but sadly things have not turned out that way.
i wish you the best of luck with your girl and whatever you decide to do. i hope you get some helpful answers from the dr visit too.

[SuzymomofLaura]

[k9sarchik]

I just looked up Neocate because I am unfamiliar with it. The very 1st ingredient is CORN SYRUP SOLIDS. IMO, the is awful! Not only is the first ingredient sugar but it's from cheap refined corn! This would set your child up for being a sugar junkie or maybe even hypoglycemic or worse!

I'm sorry that you feel the need to go to this, but this is not a hypoallergenic option because corn is not hypoallergenic.

[christamom]

Thank you for your reply k9sarchik. I feel the same way about corn syrup and how it is overly processed crap. Unfortanately, many of the infant formulas on the market contain sugar alternatives including corn syrup solids. The sugar composition of breastmilk is roughly 6.9% and the sugar composition of neocate is approximately 7.8%, so it is a little bit higher, but nothing to get worked up over compared to breastmilk. I do agree with you that some of the ingredients in Neocate are something I wouldn't particularly choose to feed my child, but in this circumstance, if it will help allow healing, I am willing to overlook it. Also, I will be the one probably drinking most of the formula, as DD still nurses about 6 times a day.

here's a link about composition of breastmilk and formulas http://www.medschool.lsuhsc.edu/medi...c_formulas.pdf

[momofmine]

Can you get an allergy test for both you and your DD right away? There are some you can send away for yourself even, that just use a fingerprick. That might at least give you a place to start. What do you mean by blood in the stool? Is it a lot of blood, is it on the wipe or directly on the stool, is it only blood at the end of the stool? You mention she is constipated. Does the pedi think the blood is from being constipated?

[*mama moose*]

k9- I am as big a lactivist as any, but when you have a SICK child, who is NOT thriving on breastmilk, when you have cut out food after food after food and your child is STILL in constant pain, and your child's (and/or your own!) health is at stake, sometimes a formula like Neocate is needed. Yes, I am aware it has corn syrup solids and for some babies that is not tolerated, however, it is so refined that (I think) the stat is 98% of babies can tolerate it, even those who are very sensitive to corn (like mine!!). So yeah, a look at the back of the can makes me feel a little sick, but it is the most hypoallergenic option we have right now in the US, and there are many parents (including some extremely decided mamas right here on this board!!) who are feeding their child neocate (or another brand of elemental formula) because it is the BEST THING for their child, despite how "awful"you think it is. Their children will not grow up to be some sugar junkie or whatever else you'd like to predict about them. They will grow up hopefully having the chance to heal their GI system.
I'm sorry if that came off as mean or rude, but really, many moms on this board have been living off of 5 foods (or fewer!!) for weeks at a time, have cut 20,30,40....foods out of their diets for months or years, all for their babies. So yes, the formula has corn syrup in it, but no one has the place to judge this mom or any others for giving it to their kids (or themselves), ESPECIALLY if they have never walked in those shoes.

[christamom]

Originally Posted by momofmine

Can you get an allergy test for both you and your DD right away? There are some you can send away for yourself even, that just use a fingerprick. That might at least give you a place to start. What do you mean by blood in the stool? Is it a lot of blood, is it on the wipe or directly on the stool, is it only blood at the end of the stool? You mention she is constipated. Does the pedi think the blood is from being constipated?

Our pediatrician recently gave us a lab order to do a blood test for a wide variety of foods. I'm hesitant to go to an allergist or have allergy testing done b/c my DD doesn't have typical symptom of food allergies. Most food allergies are an IgE mediated response, but in delayed responses this is not the case, nor is it detected by a RAST or blood test.

I believe that she has food "allergies" or "intolerances" based on food journaling a noticing very strong reactions to certain foods like dairy and DD's favorite-bananas. The blood in the stool sometimes looks like chunks-severe reaction, tiny red threads-moderate reaction, or pin prick specks of blood. It is always mixed in the stool, and her stool is never hard anymore because she takes a daily stool softener (magnesium powder supplement). I belive the constipation is from swelling of the intestines which gets worse she has a bad reaction to a food. I also believe that the "failure to thrive" is because her intestines are swollen and can't absorb nutrients from the foods she eats.

[momofmine]

Originally Posted by christamom

Our pediatrician recently gave us a lab order to do a blood test for a wide variety of foods. I'm hesitant to go to an allergist or have allergy testing done b/c my DD doesn't have typical symptom of food allergies. Most food allergies are an IgE mediated response, but in delayed responses this is not the case, nor is it detected by a RAST or blood test.

I believe that she has food "allergies" or "intolerances" based on food journaling a noticing very strong reactions to certain foods like dairy and DD's favorite-bananas. The blood in the stool sometimes looks like chunks-severe reaction, tiny red threads-moderate reaction, or pin prick specks of blood. It is always mixed in the stool, and her stool is never hard anymore because she takes a daily stool softener (magnesium powder supplement). I belive the constipation is from swelling of the intestines which gets worse she has a bad reaction to a food. I also believe that the "failure to thrive" is because her intestines are swollen and can't absorb nutrients from the foods she eats.

Well, I agree. WIth my first child we did the traditional allergy testing, it was very traumatic, and it showed absolutely nothing. But aren't there tests now that are fairly better at showing IgG reactions too?

As for the blood, it is a very simple and non-invasive stool test to simply test for blood in the stool. Your family doc or ped should be able to order a test that you collect the stool three times in a row, and they test for the major parasites and blood in the stool. That would at least give you a better feeling of if there actually is blood in the stool and how much. I would probably seek out a homepathic MD or naturopath or some other person that could still order tests and stuff for you, but that would listen to your concerns better.

[kjbrown92]

Originally Posted by momofmine

Well, I agree. WIth my first child we did the traditional allergy testing, it was very traumatic, and it showed absolutely nothing. But aren't there tests now that are fairly better at showing IgG reactions too?

There are tests that test for IgG. They are expensive and rarely covered by insurance. I know, because I shelled out $1000 earlier this year for IgG testing for 2 of my kids. They are not completely accurate (each child had 1 false negative -- for instance, DD tested safe for corn, which is the food that she reacts the MOST too -- see my other thread about folliculitis, which turned out to be caused by corn that I was accidently giving her). All the different kinds of doctors that I've been to say that an elimination diet is THE standard to ferret out food intolerances, and they are very difficult and very time consuming. If this mom takes the formula so that they can get to a baseline, and then add foods back into her diet one at a time, then it will actually be more accurate, and almost quicker than doing a regular TED.

As for the blood, it is a very simple and non-invasive stool test to simply test for blood in the stool. Your family doc or ped should be able to order a test that you collect the stool three times in a row, and they test for the major parasites and blood in the stool. That would at least give you a better feeling of if there actually is blood in the stool and how much. I would probably seek out a homepathic MD or naturopath or some other person that could still order tests and stuff for you, but that would listen to your concerns better.

She's not saying that she needs a test for blood in the stool. She can see the blood in the stool.