Infantreflux.org | Feeling defeated

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July 8, 2008 at 2:00 pm #53550

Anonymous
Inactive

Evan (7 wks) is back to having blood in his stools & this morning was the most I’ve seen @ this point.

He had 2 blood & mucous free days (Sunday & Monday) so we thought it had for sure been the solutabs…perhaps not.

I am on day 10 of TED. He is on day 5 of Prevacid capsules (was on solutabs).

I don’t know what to do I’m just so frustrated. There are so limited things going into him right now. I’ll list them & maybe someone can shed some light…

-Prevacid 15mg capsules w/ 1 tsp organic unsweetened applesauce 2x/day (waiting on CaraCream)

-Zantac 1 mL 1x/day (sometimes 2 but not usually)

-Mylanta 1-1.5mL 2-3x/day

I’m on TED + sugar, brown sugar, cinammon & canola oil.

I feel like I’m doing him more harm by bf’ing @ this point… I hate that I feel that way, but I do. I’m very pro-bf’ing (as you can see since I bfed my 1st son until I was 5mths pregnant-lol) so I really don’t want to quit, but like I said in the subject line: I’m feeling defeated.

That’s all I guess. Is there any other reason (other than intolerance) that this would be happening? We don’t have an appt w/ our new Ped GI until Aug. 5th… have general ped 2mth appt on July 21st.

P.S. just remembered… the only thing diff’t yesterday was I had turkey sausage (from Whole Foods) for the 1st time – I looked @ ingredients & it was: turkey meat, turkey fat, water, sea salt & spices. So maybe that? Also, I had rice for bkfst, dinner & snack but I think I’ve done that before.

erinntx2008-07-08 14:29:49

July 8, 2008 at 7:10 pm #53575

hellbennt
Keymaster

I wish I knew more of what to tell you!

I suppose I’d try the pacreatic enzymes?

I would also check out the yahoo group http://health.groups.yahoo.com/group/breastfeedingreflux/

and breastfeeding allergy babies on the LLLI website:
http://forums.llli.org/forumdisplay.php?f=37

hang in there! one more thought: since you’re eating pears, maybe use PEARS for the prevacid? I am not sure they’re acidic enough though? I only mention it bcse there have been 2 babies on this board allergic to apples! who woulda thunk it? SIGH. And corn. corn syrup is in everything. there have been babies sensitive to it, too!

July 8, 2008 at 7:33 pm #53577

Anonymous
Inactive

I’m sorry!!! I don’t have much advice to offer, I am actually looking for a post that someone else posted where their LO’s allergy testing came back POS for turkey and rice and they had done TED in the early days (I think).

Also, my LO is very very very sensitive (possibly allergic) to rice. Majority will say that rice is easily tolerated, however there are few that just cannot have it. There is another user on here whose son can’t have it either.

Just an idea for you. I hope things get sorted out soon.

July 8, 2008 at 8:39 pm #53583

Anonymous
Inactive

I am so sorry, I can totally see why you are feeling the way you are. I would do like Laura said and maybe try pears instead of applesauce for the capsules until the caracream gets to you. It could be the apples and it could be the rice, but it could also be that his poor tummy/gut is so damaged right now that he is just fighting to get it back in balance. Are you taking a probiotic?? That may help as welll… probably couldn’t hurt… there are tons that are dairy/soy/gluten etc free.. Laura help me out here and post the link And Hang in there… you are a great mommy and things will get better at some point.

July 9, 2008 at 7:37 am #53592

hellbennt
Keymaster

Probiotics, brands used: https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

July 9, 2008 at 3:07 pm #53606

Anonymous
Inactive

Erin,

I just had to reach out to you because you and I have/are in the same boat. McKenzie only did have blood in her stool on occasion, but it seems that no matter what I took out of my diet, she was still in tummy pain and still couldn’t sleep. It is to the point with me where my milk supply dropped so low I have to supplement with Neocate and I am probably going to wean her to only two feedings of BM a day and pray that she can handle that amount if I eat without so much restrictions. Now I am not saying this to discourage you, just to say, I have been there. There is the cuttest picture of my two year old daughter and I laying on the couch with my back facing the camera and her arm around me…and hte look on her face is just priceless. But what the camera doesn’t show is that I am crying my eyes out in the picture and my two year old came over to comfort me. So I have been where you are.

On to the hopeful news. I am probably going to try this with McKenzie…have you heard of IgG allergy testing. Sheri (MFPIX2) is much more knowledgeable about this than I am, but I guess this shows more of a delayed response/intolerance to foods. I had another girlfriend that had eliminated a LOT of things from her diet and still her baby suffered. She had the test done and it showed about 12 other foods (down to millet and such) that her baby was reacting to. She took them out of her diet and the reflux almost stopped, and the poops improved. I guess it is the kind of foward thinking about some cases of reflux. THere are two labs that do it. Immunolabs and Great Plains Labratory. I am going to get the test done with Great Plains Lab because all you need is a Dr. signature. I have to pay for this out of pocket as I have an HMO that doesnt’ cover it, but the cash price is $200…when I called immunolabs they said the cost varied, but the insurance price was $900…I don’t think I could even afford the cash price, and on top of that you have to go to one of thier physicians. Anyway, feeel free to PM me if you want to ask more. My Ped signed the form today, but I need her medical number or something so she is going to have to get that to me tomorrow. But I want to get this test done soon. I am hoping that it can at least give me a guide map of what I CAN eat with confidence so that I can continue nursing longer.

I am very pro breastfeeding. I fed my other DD for a whole year despite MSPI and I loved it. But here is something else I have come to learn through this whole experience. My children also need a mamma that is in good health otherwise I am not good to anybody really. You should feel proud of every ounce of breastmilk you have fed your son. He is lucky to have a mom that would go through all you have to continue to breastfeed as long as you have. If you end up having to stop, you have given your son a GREAT start and don’t ever forget that!!!!! (How silly, I am crying as I type this to you). lol PM me if you need someone to talk to.

Emily

July 9, 2008 at 4:49 pm #53621

Anonymous
Inactive

Laura-

I want to try the enzymes, but not until I figure out what he’s reacting to. Make sense?

Thanks also for the links to the other boards.

I got pureed pears today & will give his prevacid tonight w/ them instead of the applesauce. Who knows…

Jill-

Yeah, I noticed on your signature that your son was sensitive to rice. I’m going to wait the 2-2.5wks of TED (& wait for the caracream) & then I will cut out rice for 4-5 days & see if there’s a change. Sigh.

Beth-

I keep hoping it’s just his little gut healing, but he’s still straining & grunting so much that I think there’s something being put in regularly that’s irritating his system. About the probiotics: for me? or for Evan.

Emily-

I’m very interested in more allergy testing info. Is it the one that shows true allergy as well as sensitivities?

Thanks for all the kind words. I hate to throw a pity party for myself but it’s really hard to see him in such pain when I’m doing all I know to do!

July 9, 2008 at 5:31 pm #53622

hellbennt
Keymaster

I *think* that the article says you start the enzymes while on the diet?

Colic & Food Allergy in the Breastfed Infant: is It Possible for an Exclusively Breastfed Infant to Suffer From Food Allergy?

Barbara Schach and Michael Haight

From the Journal of Human Lactation 2002; 18;50

DOI: 10.1177/089033440201800108

http://jhl.sagepub.com

“The first phase of the elimination diet involves the elimination of dairy, soy, nuts, strawberries, and chocolate. The diet may also include the elimination of wheat, eggs, corn, and so on if the first phaseof the maternal eliomination diet does not resolve infant symptoms. The breastfeeding mother also begins taking two pancrease MT-4 strength tablets with each meal and one with each snack. Pancrease is a digestive enzyme that further breaks down fats, proteins &carbohydrates before they enter the mother’s bloodstream. It is theorized that proteins from the mother’s diet that are brolen down before they cross the semipermeable membrane of the breast may be less likely to provoke an allergic response in the infant. This strategy has decreased symptoms of colic, eliminated or greatly reduced blood in the infant’s stool, and allowed breastfeeding to continue without the need to change the infant to a nonallergic formula. Among 16 breastfeeding mothers treated w/ Pancrease at our clinic, 13 have been able to continue breastfeeding , with resolution of bloody stool and a decrease in symptoms of colic. This, however, was not a prospective case control study. the question remeains, “Would these symptoms have resolved spontaneously?” Until we have more studies in this area, the answer is unknown.

July 9, 2008 at 8:42 pm #53644

Anonymous
Inactive

Erin since you are bf then you could take the probiotics and he would get them that way… I def don’t think it would hurt you a bit to try again just get a hypoallergenic formulation…

July 9, 2008 at 9:06 pm #53646

Anonymous
Inactive

I did it that way…well I guess I still do not know 100% what is bothering McKenzie..lol…but she is not as bad as she was so I guess they are helping some. 🙂 You are doing such a great job!!!! We are here for you. 🙂

July 10, 2008 at 3:18 pm #53674

Anonymous
Inactive

UPDATE:

Well, since we’ve had visible blood in the diapers still I called ped this morning. He just called me back & said he wants us to see the Ped GI asap. He said it’s time for an endoscopy &/or biopsy (I’m not familiar w/ either of these so any input would be helpful).

I had made an appt w/ Ped GI for the office closest to us for Aug 5th but called & got into 1st available (about an hr drive) for this Tuesday afternoon.

Ped also said that we could try Alimentum if I wanted to but no guarantees @ this point that it would help. I said I’d wait to see when we could get into see Ped GI & then decide.

So, that’s where we are.

July 10, 2008 at 3:30 pm #53677

Anonymous
Inactive

The BEST thing to do to get in sooner to see the ped GI is to bug them. Call the appt. scheduler back and tell them you will take ANY cancellations. Make yourself very available. Then, call them back every few days (or every day if you are brave) and ask about cancellations. They will most likely have a cancellation (alll drs do and they are VERY glad to have the slot filled) or they will get sick of you calling and fit you in sooner. Either way, you’ll get into the GI sooner. Good luck! Hope the GI is able to figure something out for you guys.

July 10, 2008 at 3:38 pm #53679

Anonymous
Inactive

The office is very good about calling w/ cancellations. Don’t know if there will be any though… it’s only 3 (business) days away.

July 10, 2008 at 5:57 pm #53684

hellbennt
Keymaster

print out the article info about the pancrease?

I think it might help?

oh ! & on the ‘main mspi’ page there’s a link called ‘the misconceptions of elemental formulas’ this should help, too?

Hang in there!

hellbennt2008-07-10 17:58:43

July 10, 2008 at 6:54 pm #53686

Anonymous
Inactive

sorry- I was stuck on the August 5th date. Again, good luck!
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