All Eyes needed I don't know what to do next!

[erikaluke]

Hello, I have a 3-month-old baby boy and we are having some real GI issues. I'm sorry if I am missing information that might answer my questions in a different post but, from the posts I have read I haven't found the answers I am looking for!
Let's start at 3 weeks old our first check up where I went in to the pedi pretty sure he had reflux since I was hearing him reflux and he was also spitting up more than all my other children ever did. At that point we did a cult blood test and he tested +1 for blood in his stool as well as he was having mucus stools. Doctor took me off dairy at that point. The following day we were sent to the Children's Hospital for a different reason unrelated to the GI issues, diagnosis from the hospital was laryngomalacia, (floppy larynx/ trachea) we left with previcid for his reflux. At a follow up after that pedi did another a cult blood test and he tested +2 so doctor took me off soy as well.  (Had been dairy free for a week with no improvement with crying or fussiness) Pedi wanted me to try nutramigen for a week to see if it was really the MSPI, I wouldn't agree to a week but did say I would try for 2 days that lasted 24 hours because DS was so much worse. At that point I asked for a referral to the GI doctor. GI got us in by the end of the week. GI tested for clostridium difficile, and mucus, as well as a CBC and allergic reactions. Everything came back normal but he was positive for c-diff so we started and antibiotic for 10 days. Follow up with the GI doctor I was still worried about his fussiness and he seemed as if he was having some discomfort passing his stool and it would wake him up. GI suggested we try a different formula Alimentum, which I was not keen on. Since we had just switched PPI's from previcid to nexium she said lets give the nexium another 2 weeks in which we will know for sure if it's helping and then we can decide if we should move him over to Alimentum.  At that visit he was free of a cult blood in his stool and things were looking better. At the follow up 2 weeks later we still had some fussiness but all in all much better. I thought things were on the up and up but still slightly concerned about the fussiness and trouble passing stool she suggested giving him half of and infant suppository if he was having a hard time passing his BM. That afternoon things got much worse he was very fussy and almost inconsolable I sat on the couch and held him all afternoon. The following morning I changed his first diaper and there was visible blood in his diaper (up to this point I had never seen actual blood he had only tested +) I took him in and the GI did a test in the office for a cult as well as a test that tested for human blood. Well both were positive and the a cult was a +5 the highest it had ever been. GI took me off of Wheat, Corn, Nuts, Eggs, as well as Dairy and Soy. She also mentioned that he might be allergic to my Breast Milk. We are a little over a week now with all major allergens eliminated and he is still fussy and only sleeps when held. He had another bloody diaper a week after the first (visually bloody). And to top this all off he has been having a hard time latching, he goes back and forth between latching and sucking for a bit to pulling off and screaming we try burping to no avail and sometimes he wont even latch he just sits with his mouth open at the breast screaming, this has been going on for about 3-4 weeks now it's not at every feed some days it will be just one feed some days it will be multi feeds sometime we are fine and go a day with out? I have thought about letdown and flow but he doesn't do it all at the same time, it can be before letdown during or several minutes after he has nursed as long as 10-15 min and then he will freak out? I have BF all 3 of my other babies and I would love to BF him as well but I am just not sure what to do, he has lost almost a pound in the last 9 days I have called our local BF support office and will be going in to see them but I am almost at my breaking point I just cry with him now when he wont latch and when he is inconsolable fussy. I just want to make my baby happy! Sorry this is so long any thoughts would help? Is there something I am missing? My 3 other children haven't had any allergy issues so this is a whole new ball game for me. Thanks in advance for all your help!

[Jimbob]

I personally would give an elemental formula a go whilst pumping so you are able to carry on feeding if things don't work out. I would want to try neocate or elecare though instead of Alimentum as some babies still react to formulas like Alimentum and Nutramigen.

I am sorry things are so difficult right now.

Kelly x

[deb]

Hmmm.... I would also look into dairy-free infant probiotics to help heal the gut. Whatever he reacted to in the first place, it seems he needs time to heal. Can you ask your doctor about some? You can put them into a bottle or even a syringe. Comes in a powder, usually in a fridge at your health food store.

[erikaluke]

I will ask about the probiotics, a nurse at pulmonology said the same thing! It's worth looking into! Thanks Deb,and Kelly I will talk to the GI about the elemental formula, he has had a few bottles of Alimentum and seemed to do ok but I can't be certain since they have not be back to back and have be days apart. Labs are back and he doesn't have c-diff again which is good and bad, good cause he doesn't have and infection but bad cause we are still looking at an unknown allergy! I feel bad playing the waiting game while he is still having bad poo! I may do the pumping thing just to get him cleared up! If I can manage that with 4 LO and still having to hold a bottle to feed him! Thanks for your thoughts.

[deb]

Definitely, and look into the high-potency ones. I was reading distracted this morning and missed the c.diff and antibiotics - that alone would pretty much destroy all the good gut flora he'd need to digest the food he's eating. Gut healing can take a good long time.

I believe culturelle makes a brand of probiotics that's dairy-free, although not sure if they do dairy-free infant ones. A quick Google search, or looking on Amazon, will probably land you some results.

[bug_blues70]

BIG Hugs!! I can't say that I know exactly what you are going through, b/c my LO never had blood, but what you are describing sounds just like us until fairly recently. I was off all the major allergens for several months which improved things somewhat, and then I switched to the gaps diet which has really improved things drastically. There's a thread on here about it if you're interested.

I also tried prevacid and switched to nexium. The nexium didn't start working full blast until I made sure to give it on a completely empty stomach (not having eaten anything for 2 hrs) and wait an hour (or at least 45 min) before feeding him again. Once I did that the screaming finally stopped.

Milo also doesn't tolerate Alimentum. I've never tried the elemental FF b/c it was too expensive. I still think breast milk is best (and it's WAY more plausible that he's allergic to something you are eating and NOT your breast milk) I would have switched though if I had to for blood that I couldn't figure out, I'm glad I didn't have to and would only have done it as a last resort. Hugs to you if you can't keep BF even though you want to, and props to you for not letting the doctors railroad you into switching without being fully ready. They also tried to do that to me and I told them no. Have you eliminated gluten all together? (not just wheat, but anything containing gluten??)

I definitely agree with pps about probiotics if he's been on antibiotics. But like deb said, make sure it's an infant specific probiotic (klaire labs makes one that is dairy/soy/other allergen free) and even then, go slowly with it - just a tiny bit to start. The first time I gave milo probiotics, he screamed all night. (it wasn't infant specific, but it was just a tiny bit).

Good luck! I hope you get it figured out soon!!

[rach321]

No advice on allergies - only have intolerances here but I was told that it can take a good 2 weeks before any allergens work their way out of their systems.