wanna cry

[Anonymous]

David saw the Ped. GI specialist yesterday. Since he still has
mucus & blood in his diapers even after more than a month of me
eating the three foods he seems to tolerate well they want me to put
him on Neocate to give his digestive tract time to heal.

I know it doesn’t mean bf has to stop forever. I can still pump and
try it again later and see if he does OK then but I’m just really
sad. We’ve had such a rough go of things between the NICU start and
reflux/allergy issues and he’s just getting to the point where he’ll
stop nursing when he catches my eye and his whole face will light up
in a smile. It has been one warm, snuggly, bonding thing amidst the
pain and fussiness.

I guess too it’s so nice to feel like your doing the best thing for
your baby by breastfeeding (that’s the only thing that kept me going
with all the pumping, exhaustion and difficulties getting him bf
after being in the NICU) and it turns out that for him, maybe it’s
not the best thing after all. Makes me want to cry.

Thanks for listening to my boo hoo!

[Anonymous]

Kara, I understand your pain very deeply. I wasn’t able to nurse any of my babies despite my desperate desire to do so. (I had to pump and feed all three). I cried, and cried, and cried over it and everyone thought I was nuts. I wasn’t nuts. It’s a sad thing to not be able to do the most natural thing in the world and nurse your baby.

I hope you will be able to keep your supply up and that you will be able to go back to nursing later on, but if you can’t, please try to find comfort in the fact that you did all you can do.

Your little guy will light up when he catches your eye whether he’s nursing or bottle feeding. I know it’s not the same….but it’s still bonding and it’s still wonderful!

ndrose2006-3-31 14:16:33

[hellbennt]

month of you eating what 3 foods?

I’d post over on the yahoo breastfeedingreflux board before giving up…they can try and help too

what meds is he on? ‘high’ enough dose of PPI?

hang in there!

~laura

[Anonymous]

My son couldn’t even eat until he was 9 days old because he had a birth defect (his esophagus wasn’t connected to his stomach – repaired surgically at 3 days old). They told me I could pump and save it, and even once he started feeding, I’d have to measure how many ML he’d take at a time, so I had to bottle feed (he was a 8 lb baby by the way, drinking milliliters at a time not ounces – yikes!). My son was in the NICU for 2 weeks and I always took great comfort in giving him formula and knowing for sure he was getting all the nutrients he needed and the ounces.

He’s never had an ear infection and only had a fever once – his immune system is great! You can be a great mom in many other ways besides BF…by being a great advocate for your baby and making sure he has the right meds, etc

lansima2006-3-31 16:29:57

[Anonymous]

Kara, I know how you feel! I was so depressed about having to stop. I filled up the deep freezer in case I put her on breast milk again. Last for up to 6 months so you never know! My daughter finally is thriving on neocate. Just FYI, he may become a little constipated this first week so ask the doc. to have a milk laxitive prescribed or think about other ways you are comfortable with like prune juice (hard on their tummies), peaches, bottle or water or juice. I had to use a baby enima one time to releive her. anyways, after a couple weeks they start going again but it will be like a black/green color.

Also, it is very thin, so alot of mom’s thicken it with oatmeal or simply thick (we use both). Good luck, you will probably see an improvment in a week, it was day 6 for us. Sarah

[Anonymous]

Thank you all for your support!

Laura- the three foods that seemed to work for him were turkey, sweet potatoes, and brown rice. I started with the Dr. Sears allergy elimination diet and it helped some but I found that he was reacting to pears and millet and so had to cut those out. He also has trouble with squash. I can’t stand lamb so that was out because of me. I have posted on the yahoo breastfeeding board looking for help but I think I’m too long winded (especially when I’m stressed) and I didn’t really get much that helped. The moderator pointed out that the elimination diet wasn’t supposed to be long term, which of course I know. My problems were that even that restricted, his skin clears up but he’s got tons of mucus and at times blood in his diapers. He’s had runny stools for two months. Also, any time I tried to add anything back in he’d break out and get a diaper rash again. He couldn’t even tolerate rice milk for some reason.

As far as meds go-he’s been on zantac 2X/day. He reacted badly to prevacid when we tried it and his doctor wanted to let the specialist handle it from there. I asked the Ped GI for Zegerid. That was not one they use but they were willing to let us try. I was chicken to push on dosage when I had already pushed on medication. I can’t really say it’s not enough for him when I haven’t tried it yet. I figured I’d take it one step at a time. I’m also a little nervous about trying a PPI again after how he reacted last time but would love to see him get more relief.

How can being on the adequate amounts of medication help with the blood/mucus issue?

[hellbennt]

hmmm…meds help with the acid and the acid might be aggrevating everything and wreaking havoc on digestive system on the whole…

as for diet: maybe it’s the rice? although it’s on the elimination diet, it’s not unheard of for babies to react…what if you cut out rice and then try adding other things back in? again, the yahoo site is a bit better for this- I saw your post- I think maybe just ask ‘direct’ questions, like: baby has mucous/blood in stools, did/am doing total elimination diet, do i HAVE to quit breastfeeding? Please help! then go into longer explanation (you can copy & paste above post)

hmm…so you’re eating nothing in your diet right now but turkey sweet potatoes & brown rice? wowsa mama, you’re dedicated!! I just posted a plea of help for you over at the yahoo board…

hellbennt2006-3-31 23:43:29

[Anonymous]

Hi Kara,

I started tearing up reading your post. I also contemplated giving up nursing to try Neocate and in the end, I forged ahead with nursing. You are a CHAMP for doing all of this already to prolong bfeeding.

PPI drugs limit the amount of acid in teh stomach, they turn off the acid pumps, and this, in effect, promotes or allows healing because the stomach environment is much less acidic. A correct dose of ppi could do wonders for you. Not sure about the blood nad mucous in stools, are those the only symptoms right now? A natural healer is aloe vera, which I would recommend trying in your situation (100% organic, refrigerated, we use Lily of the Desert brand from health food store). Have you heard of probiotics, they are also very helpful to promote a healthy “gut” environment. Also,I would do what laura suggested, maybe it’s the rice. I thought maybe my son reacted to rice and took that out in addition to a million other things. I have been on a strict elimination diet since June 2004. At this point, we’re not having wheat or any gluten products, dairy, soy, beef, fish, and I had cut all classic reflux foods and am slowly reintroducing them. Everyone says rice is fine for all babies, but you know, all babies are different. Did you try things like avacado (good source of fat for you), chicken, pork, hummus (w/o garlic, very plain), or other grains that you could cook? Have you been very strict with the diet?

I’ve heard that with Neocate you must do a two week trial. If you think of it that way, pumping for two weeks isn’t so bad. I also had such a hard time thinking about refusing the one and ONLY thing that had ever helped us with all the reflux, etc. going on. Dh was completely on board for me to quit and start Neocate… but my gut feeling was that Neocate would not solve our problems. We ended up having an endo soon after I was going through these horrible decisions and they did not find the eos cells, which are a sign that the baby should be on Neocate. If they had found them, I would have quit and begun Neocate. Testing (endoscopy and ph probe) can answer a lot of these questions, but sometimes waiting to get scheduled takes too long and you need results now.

I think that if you really want to continue on nursing, there might be some avenues for you to try regarding meds and dosing. My son is also on Zegerid and we LOVE LOVE LOVE it. If you are worried to push the docs with dosing, etc., think about how badly you want to keep nursing and channel that energy into convincing them to let you try a high dose of zegerid. Dr. Phillips will answer your emails regarding weight and age and give a dosing recommendation that you can print out (print that along with his info and MArci-kids info) and take it into the docs office as ammunition. That’s what I did and it really helped. Dr. Phillips even gave me his CELL phone number if they had questions!!! http://www.marci-kids.com,

If you really feel like Neocate is the right thing to try for now, then try it, it really could be a saving grace. In the end, we all just want our babies to feel better and whether controlled diets and bfeeding can make that possible, or whether Neocate does that, it’ll be the baby getting better that will make it all worth while. Hang in there, I really know how it feels…

[Anonymous]

I’ve tried a couple of times to reply to your messages and end up hitting a wrong key as I’m trying to plunk one handed (holding baby) and manage to erase everything. ARGH!

Thank you again for all of your responses! I can’t tell you how much I appreciate your help in trying to figure this stuff out or you taking time to respond to be supportive.

Sarah-What led to you having to switch to Neocate and what changes did you see in Ryann with the change? I must admit the I find the need to thicken it concerning because of the allergy issues.

Laura-I’ll try eliminating rice. Thank you for your yahoo post!

Anne-The blood and mucus are the symptoms that the ped GI would like to get cleared up with Neocate (eczema too but elim diet does that too). David also spits up a ton, has to be held upright most of the time, the only way he can get any sleep during the day is in a sling and he whimpers in his sleep and wakes with silent reflux or spitting up but at least in the sling he’ll sooth back to sleep. He also has difficulty eating 2-4 feedings a day (arching, stiffening, etc and ends up fussing instead of being able to finish even though he’s still acting hungry). that’s what I’m hoping will be helped by medication.

When you say probiotics do you mean acidophilus or bifidophilus or is it something else? I have heard of and used aloe vera juice before. I would like to get to the point I could use both but I was hoping to be able to get a few foods added back in first because I’m concerned about how healthful it is for me to eat this way for very long (lacking nutrients) and in turn if my milk will be lacking nutrients. I would have to add them in a four day food trial like anything else at this point and my difficulty is that when I add a food and he reacts, it takes time for me to get his skin cleared up again so I can try something else. Since he’s reacted to everything I’ve tried to add back in….I haven’t gotten very far yet. Chicken actually does seem to work too and I haven’t gotten to pork yet since it’s on the list of higher allergy probability and I’m not succeeding with the lower allergy list yet. I know he has trouble with beef (not surprising). I wish I could eat avacados. I ate a bunch while I was pregnant and sick and couldn’t eat much else but now they give me a terrible stomach ache???

I asked the Dr. about an endo and she said all the she ever sees when she does that is allergic colitis (the only other option being c. deficile) and she already knows his colon is inflmed because of the mucus and blood.

I’m very hopeful about Zegerid too but I must say, David is having a bad reflux day. I’ll give it the two weeks to see. Maybe it’s just coincidence. When he was on Prevacid his reflux got much worse to the point it was scarey. He went back to his normal level (amazing what your grateful for at times) after coming off it.

Thanks again!

[Anonymous]

One more question Anne: What were the symptoms that had you considering Neocate?

Thanks,

Kara

[Anonymous]

Kara, I considered neocate because ryann had the most painful intestinal gas i had ever seen. She was screaming and then farting bullets and screaming and farting. It was horrible. I used to push on her tummy just to get the air out. It happened about 30-45 mins after she drank her bottle. She also had mucous and bloody stools on top of the gas, and started to get this horrible ezcema on her face (red bumps right on her eye lids and right underneath). We went to nutramigan for a few months and the symptoms reappeared so we went to neocate because there are no milk proteins in it. (wish i would have stuck with it the first time i tried it!)

It took 6 days to see major improvement- even with the reflux. They say that mspi aggrevates the reflux alot. They just can’t digest it. They are intolerant so it won’t show up on an allergy test. Just trial and error. With everything you are describing it sounds similar to Ryann. But does he get gassy around 30 mins after he eats? Hope the Zegerid is going well, we love that stuff, my 7 year old is on it. We saw a difference in 4 days when she started it. I know its alot of work, drives you crazy not knowing what to do and trying all sorts of things, but it sounds like you are on the right tract. Hopefully he will be stabalized soon so he can get bigger and start growing out of it! Let me know if you have any other questions, my email address is under my profiles.

[Anonymous]

Kara,

I really sympathize with the waiting periods for trialing new foods, etc. I understand worrying about your health, too. When Lucas was 9 mos old, he had two decent nights in a row and I decided that I would only eat the things I had eaten on those two days for the next three weeks. I think my family members thought I had gone over the edge. Are you taking a multivitamin or at least some calcium supplements?

With Neocate, Lucas was nearly 9 mos old, he was newly on Zegerid, we had switched to a ped gi we liked better than our first, I had discovered he was MSPI, so those things were helping the situation. BUT, he was still waking up an average of six times a night. Many nights more than six–waking screaming and crying and arching. At least every two hours, often more. Most nights he woke 45 mins after going down and this was only the beginning…. He was still spitting up a lot, but less than before I removed the dairy, beef and soy. His days were starting to get better, but nights were such a horrible time. Dh started really questioning if it was something with my breastmilk. We had only had an upper gi at the time. Dh was really encouraging me to try Neocate, and I posted on these forums about it nad got some amazing responses from folks who had experienced the entire spectrum from formula fed all the way, to bfed on elim diets, and everything in between. I had experienced severe breast issues myself prior to this time and these things had left me VERY unwilling to pump for two weeks. To this day, I avoid pumping at all costs. So, the previous breast problems that I had experienced played their part in me wanting to continue bfeeding and not do the trial as maybe another mom would have jumped at a 2-week Neocate trial. I mean, it’s only pumping, it’s really not that bad. Anyways, like I said, the endo confirmed that there were not enough eos cells to indicate a problem with my milk, so we went forward with nursing.

Looking back, I am very positive that Neocate would have helped us. I mean, just because it’s obvious to me now that Lucas has real sensitivities, if not allergies with a lot of foods. So, I am sure he would have done much better, much quicker with Neocate. And we probably would have chalked it up to being my milk as the problem. I can’t say that it would have been better….although I could have been eating for all these months (!!) nad he might have been sleeping better for all these months! Hind sight is always 20-20. Before the endo we also thought he would outgrow this when he started walking. But I wanted to keep nursing and I was willing to do the elim diet and keep strictly to the foods that seemed okay. I never dreamed he would be 18 mos old and we’d still have four or more night wakings every night, and that I would be cutting even more food out.

When you say spitting up a lot, what do you mean? Have you ever counted? Looking back, an average day was at LEAST 100 spit ups, many days much more (I once counted on what I considered one of our best days and it was 27 times by 6 pm). But I never thought to count and just didn’t know what was normal. It’s just something else to think about and to report to your docs. I wonder if the blood in teh stools would stop after the ppi really kicks in? Is that supposed to happen? Do the docs have a reading on that? How old is your son? Would you consider having a ph probe and endo done on him? Testing is an obvious next step if the Neocate doesn’t work, or if you want to determine more before starting the Neocate trial.

Hang in there, you are obviously doing the absolute best job you can. Definitely let us know what happens.

[Anonymous]

Sarah-for the first few months (he’s 4 mo now) he got fussy after every feeding and he did have a lot of gas but not necessarily just after feedings. He doesn’t always get fussy after feedings now but still often seems uncomfortable and needs pressure on his tummy to be happy. The thing he seems to do more of now is have difficulty while trying to feed, arching, fussing, flailing, stiffening etc for 2-4 feedings during the day. I am really hoping that the zegerid helps with that. The elimination diet has reduced his other fussiness considerably.

Anne-Thanks for the input. Your hindsight is very interesting. I’m really wondering if the wise thing to do would be to bite the bullet, do the pumping and just do the month on neocate and see what happens. So far he won’t take any of it and I decided I’m going to wait at least a week to see how he reacts to the new medication first before trying more. I also have company coming this week and it would be much easier to focus on things next week.

I have an older son who reacted to every solid food we tried with him except pears. When he weaned himself at a year old he got very sick and threw up for two months and his doctor ended up putting him on goats milk for the next three years. I don’t know why I mentioned all that except that you got me started thinking about multiple sensitivities and our family history. My dad is allergic to dairy and gluten.

The nurse practitioner at the ped gi said that she thought David is reacting to the proteins in my milk and not just the proteins from the food I eat. I know I’ve always thought that’s not possible but I’m beginning to wonder.

The PPI is not supposed to help with the lower GI stuff but I can always hope? As far as spitting up goes, a good day is probably 25-30 and a bad da 50 plus but they also tend to be bigger and more curdled and acidic in smell on a bad day. We both end up needing clothes changed multiple times even though I’m pretty good at catching with a burp cloth.

I would consider testing but the Ped. GI doesn’t want to do them at this point. I believe she felt her plan of action would be the same.

Thanks,

[Anonymous]

Kara,

wow, yeah, sounds like your family history definitely lends itself to david having multiple protein sensitivities at the very least. with the prolific spitting up, it makes me wonder about hiatal hernias as well. I normally don’t suggest this to folks until their babies are much older and other things have not panned out, as hiatal hernias are to quote our doctors “very rare” in babies. I was shushed a bit when I first suggested it to my ped, getting hte “very rare” arguement. He said the same thing about MSPI and other protein intolerances. It turns out our child is very rare and it would have helped us if we had considered some of these issues earlier vs. later. That’s one reason i was asking about testing. Hiatal hernias DO NOT always show up on endoscopies, but then can show up on endos. Also, from the little I know, the protein in your milk being a problem can be linked to eosiniphilic cells showing up in their endoscopy tests. I don’t know a lot about this, but there are lots of posts on this forum about them from the past. It’s another reason to have an endoscopy if you want concrete facts BEFORE you make yourself and child miserable by refusing him to nurse. Just something to think about. I’m emailing Laura (our resource specialist) about these links right now.

[hellbennt]

from welcome/intro ( https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1)

to mspi/allergy ( https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&a mp;PN=1&TPN=1)

there’s:

about eosinophilic disorder http://www.cureresearch.com/news/digestive_system_disorder_i s_gaining_awareness_with_it_s_increasing_prevalence_amongst_ children.htm (thanks Liz!)

there’a a lot of info here- scroll through- Tracy (Eli’sMom) posted good articles here (about neocate, the allergic child, allergies, etc.):https://www.infantreflux.org/forum/forum_posts.asp?TID=2770

here’s info about FPIES, neocate only- severe cases: https://www.infantreflux.org/forum/forum_posts.asp?TID=2844&a mp;a mp;a mp;PN=0&TPN=1

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