Help, please! I am confused and heart-broken…

[Anonymous]

I’m not exactly sure where to post this….so I thought I’d try the MSPI section.

I have been on an “elimination diet” of sorts, due to my son’s symptoms which include severe reflux, congestion, mucousy stool, blood in stool, and elevated white blood cells in stool. The other concern is his breathing…..his airway is so swollen and red, despite being on 22.5 mg of Prevacid. The GI said that this swelling could also be an allergic reaction.

I have eliminated dairy, soy, eggs, fish, and peanuts for 2 1/2 weeks, now. The blood disappeared, and then REAPPEARED about 1 1/2 weeks into my elimination diet.

I saw the GI today, and she feels that we need to switch to Elecare….due to my son’s “allergic colitis” and also she is worried about me being malnutritioned being off of so many proteins. I gave it to my son tonight and he hated it. I hated it. I am an emotional wreck. I believe very strongly in breastfeeding. I don’t want to give it up! But I also want my son’s GI tract to be able to heal. And I want to get his reflux under control.

Please, please, please guide me through this!

The doctors talk about this form of severe allergy usually being attributable to dairy, soy, or eggs. I have eliminated all of those….and he still has blood in his stool.

I have heard that some MSPI symptoms can be similar to symptoms from foremilk/hindmilk imbalance. But does the fact that he has the elevated white blood cell in his stool indicate that it is definitely allergy related?

Is there anyone out there who has done the TED long term….due to their LO being so intolerant to so many foods?

Thank you for any help you can give!

[Anonymous]

By the way….I have read Erin’s “sticky” and it is VERY inspiring! I can’t believe she did TED for 7 months! I guess I still just need motivation, or encouragement……or something. I’m so confused and frustrated. ARGH!!!!!!!!!!!!!

[Anonymous]

Are you reading every label? You’d be surprised how prolific soy is in packaged foods.

Also, corn is another big one for intolerance and it’s also in many, many products.

[hellbennt]

you can do it! I would go for the full TED at this point, you don’t have anything to ‘lose’ since you’ve cut out quite a bit!
the ‘biggies’ take longer to clear out of your system and you’re already doing those- milk & soy
so do the TED
and see if you can get to a ‘baseline’ as erin describes & then you’ll know for SURE what is affecting your baby…
right now there are too many variables- you’re still eating wheat, apples, corn, etc etc…you can do it mama!!

[Anonymous]

Okay… YOU CAN DO THIS!!!!

A few ‘random’ thoughts…

*The congestion & swollen airway is probably still due to offenders that he’s reacting to in your diet. My ds could barely breath until we got everything started & baselined.

*I think the PPI dose your on is great & stick w/ that.

*Stick w/ your gut & continue bf’ing. 🙂

*I thought w/ Evan his green, mucousy stools might be due to hindmilk/foremilk imbalance too but it wasn’t unfortunately (that would be too easy-lol).

Okay, so have you been keeping a food journal? Is there something you’ve been eating a lot more of since 2.5 wks ago (ie: eating more of a specific food b/c you cut out other things). This was certainly the case w/ me but it took a while to figure it out.

My advice for now would be to go for the full TED. Keep a detailed food journal w/ all your calories, fat grams & protein + ounces of fluid daily. Also log ds’s diapers, stinky gas, naps & nighttime.

I wouldn’t worry about the ped GI/ped’s concerns (re: your nutrition). My ped GI’s nurse pract. told me I couldn’t be just eating beef, apples, potatoes & squash. I told her: “really? b/c I have been for about 5 mths now”. My ped GI wasn’t concerned about it but she (NP) was just baffled. Anyway, from what ped GI (& now dss’ dietician) has told me, seeing bfed dbs that are intolerant to more that the ‘biggies’ (ie: milk & soy) is not that common in their practices. Who knows…

Okay, sorry this is random & jumbled. I just got all 3 boys in bed & got to this post (thanks Laura for linking me to it).

Hang in there & I/we will be there for you to help you along the way!!!

[Anonymous]

Oh my gosh…..you guys are awesome! This is totally what I needed-some “cheerleaders” to get me going. I’m just sooooo confused I can hardly see straight. I feel like my head is just swimming in all this information…..so many different opinions on how to “fix” my son.

My heart belongs to breastfeeding….does that sound right? Breastfeeding is such a part of me….I feel like I’m cheating him if I do anything else. (Hope I don’t offend anyone here!) I breastfed my daughter for 30 months, and I feel like I wouldn’t be giving my son the same start on life. Now, of course, if things get terribly worse or something I may have no choice. If it came down to that, I’d do whatever it took to help my son. But I don’t feel like we’re there yet. I still have foods I can try eliminating and still figure this out. I need to try everything I can before giving up, so to speak.

Christine-yes I’ve definitely been reading labels and have been very careful to cut out soy. However, I haven’t cut corn out, yet. That’s next for sure!

Erin-it occurred to me that I’ve been trying to get my calcium since I’ve started eliminating foods from calcium-fortified orange juice. The lightbulb just went on in my head tonight-and I’m definitely suspicious now that citrus could be one of our culprits. I’m glad you told me about your son’s swollen airway and breathing…..it gives me hope that we may have a solution or at least improvement on the horizon! It is so awful listening to him at night. They have him on the apnea monitor for obstructive apnea because he struggles so much.

My plan earlier today was to try to put him on the Elecare or Neocate for 2 weeks until I can get my milk “clean” (pump and dump) in order to give him a headstart on getting his intestines healing and his airway healing. I figured since the GI is so concerned about that, it might be a compromise. Then once my milk was free of allergens, I’d put him back on and see how he did. But he refuses to drink any of the formula. He hates it! (Smart little fella! He knows what’s good for him!) 😉

Thank you everyone for your support and help! Keep ’em coming, it helps me tremendously! =)

[hellbennt]

YES! I did TED and found out that my son couldn’t handle if I had citrus!
he was fine w/ everything but not fine w/ some ‘ODD’ things:
citrus, tomatoes and tomato products, tuna fish and eggplant!

that’s ‘why’ I think the TED is good- it helps you figure things out. my son was NOT food/protein-intolerant (except for the above list), so I can’t help much w/ the rest of it, except to say “I’ve been there” and then to call upon the experts like Erin, LOL!

you can do this & there’s no need to even switch to formula to pump & dump (dump your liquid gold? ack!)- you’re almost there-
hellbennt2010-06-19 21:22:24

[Anonymous]

Thanks, Laura! I appreciate the cheerleading!

And I apologize in advance if I sound whiney….because I am! 😉 No, I’m just very concerned, and very confused. I am SOOOOOOOOOOo confused, now. My husband, mother, and GI are pushing me to do the formula (at least temporarily) because his bleeding and his swollen airway are getting so much worse. Then I hear you guys on here and think I just want to do TED and stay with breastfeeding. As I said before, that’s really where my heart lies.

Maybe these question should be posted in a different section (Laura???) since they have to do with his stool, but I’d love help! I’ll try not to be too long-winded (which is hard for me!) OK, so Thursday when I came home from the GI, I was determined to try the forumla because the GI was so adamant that this is what my LO needed. I was devastated, but determined to do what I needed to help him (and I hadn’t gotten on the computer yet to read on the forum!!!). So I tried the formula, put him to bed, and then STUPIDLY drowned my sorrows in a tall glass of chocolate milk. STUPID, STUPID, STUPID. Then of course he refused the formula after that, so I had to put him back to breast (must to my relief, I must say) but then I felt terrible that I’d drank that milk. So this weekend, I’ve mostly BF him, and I’ve tried the formula 3 times. He has gotten diarrhea everytime after he’s had the formula. I’ve tried both Elecare and Neocate. Has anyone heard of that? Everytime I’ve breastfed him this weekend, his diapers have been normal (for him…..mucous and specs of blood. ) But after the forumla, he’s had diarrhea. Now this last time I gave him the formula he had a lot of bloodly mucous-probably a teaspoon or more…which is the most he’s ever had. I was just trying to do the formula to help him while that dumb cow’s milk got out of me….then try him back on breastmilk…..argh!

So, now the questions…..finally!

1) Has anyone heard of bad reactions to neocate or elecare?
2) Do you think the diarrhea and increased blood could be due to the formula, or from the dairy binge?
3) What in the world do I saw to the GI when I tell her that I want to continue breastfeeding and go on an elimination diet? I am such a wimp!

Thank you all for helping. I am normally a fairly assertive person, but I guess I’m just emotionally and physically exhausted from all of this. My brain feels like mush!

Thank yoU!!!!

[hellbennt]

ok, first of all don’t see the ped GI again until you’ve done two weeks of the elimination diet!!!

as for the formula: EVERYTHING seems to take two weeks, so if you were to go that route, you’d have to give it two weeks (of diarrhea, etc, whatever)

have you read this yet?
Misconceptions as to how Neocate & Elecare work:
https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
read it and maybe it’ll help you w/ how you present yourself to everyone else?

I would read and re-read what erin has written!
you can do this, mama!
you’re not the first one to go down this road!

you’ve read erin’s ‘sticky’:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

here’s ‘more erin’:
https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

second post from this link will tell you how reflux & food allergies and intolerances are related:
https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Total Elimination Basics:
https://www.infantreflux.org/forum/forum_topics.asp?FID=43

[Anonymous]

I just want to start by saying… I can totally relate to wanting to bf your db if at all possible. Since I had bf my 1st till 20mths (would have been longer if my milk hadn’t dryed up @ 6mths pg) I was totally willing to ‘fight’ for it w/ Evan (my 2nd) eventhough everyone in my life (except my wonderful dh & fabulous ped & ped GI) was pushing for formula.

1) Has anyone heard of bad reactions to neocate or elecare?

*I haven’t heard of any super bad reactions, though like Laura said, I’ve heard that it can get worse before getting better when trialing a formula (but can’t speak firsthand so don’t quote me on that).

2) Do you think the diarrhea and increased blood could be due to the formula, or from the dairy binge?

*I think the increased blood is *probably* due to the cow’s milk (but PLEASE PLEASE don’t be too hard on yourself- it happens!!!). And re: diarrhea, it depends on what you’re describing (ie: looser stool than normal? more often? watery?… does is resemble bf stool?)

3) What in the world do I saw to the GI when I tell her that I want to continue breastfeeding and go on an elimination diet? I am such a wimp!

*I agree w/ Laura that don’t go back to ped GI till you’ve baselined w/ db. I know it’s easy for me to say that (since my ped & ped GI both were so optimistic & supportive re: bf’ing) BUT eventhough they were supportive I think they both thought (well, still think-lol) I’m a bit nutty. I didn’t go into those appts looking for a plan really. I told them my plan for the next 5-7 days, then what I would do after that if I needed to, etc. Trust me, I was dying inside but staying strong outside. (not sure if that makes sense). Since you have db on a good dose of PPI you don’t need to see anyone for a while right?! 😉

Speaking of PPI- what form are you on? Just asking b/c both my sons were intolerant to Prevacid solutabs (caused immediate bloody stool w/ my 3rd ds).

You’re doing amazing & hang in there! We’ll be here for you…

[Anonymous]

Thanks, ladies!

Erin-we just actually switched from solutabs to Prevacid suspension. I know there are a lot of variables with the suspension, but I figured we’d try it because his reflux was NOT under control with the solutabs. Now I’m wondering if those could have been contributing to the bleeding, since I haven’t seen any blood for TWO days now. Funny, I just started TED on the 2nd day of “no blood”. I’m wondering if cutting out the orange juice and the solutabs did it? (In addition to the other stuff I was already off of.) Who knows. I’ll still do TED to make sure we have everything offensive out of our systems.

As for the diarrhea after the Neocate/Elecare….it was complete liquid, very watery, not resembling normal breasfed poops at all. So, who knows if he was reacting or not. Hopefully we won’t have to try it again! 😉

Laura-thanks for the links! It helps SO much to have support from this forum. Don’t know what I’d do without it!

[hellbennt]

from here (worth reading, lol):
https://www.infantreflux.org/forum/forum_posts.asp?TID=4505

“[if] you would like to continue using the compounded PPI that you
are currently using, here are some recommendations for how you should ask that
your pharmacist make the compound so that it will remain stable for longer.

1. Make sure that your pharmacist does
   not put any kind of flavoring agent in the compound.

2. Make sure that the concentration is
   between 2 mg/mL and 4 mg/mL. This means that for every milliliter of
   suspension, you are giving between 2 and 4 milligrams of drug.

3. Ask that your pharmacist make the
   compound with 16.8% sodium bicarbonate if the total volume of each
   dose is less than 7 mL. If the total volume of each dose is greater than 7
   mL, ask that your pharmacist make the compound with at least 8.4% sodium
   bicarbonate. We also do not recommend that you give less than 3.5 mL of a
   PPI suspension at any concentration. This is because doses smaller
   than 3.5 mL do not provide enough buffer to adequately protect the drug
   from being destroyed by the acid that is present in the stomach.

It is important that the pharmacy does not add flavoring to the
compound as it will almost certainly cause it to lose its stability
much more quickly. It tastes pretty aweful this way, I know, but it’s
better than the alternative.”

TELL (don’t ask) your pharmacist how you need it compounded and to please HUMOUR YOU. If s/he cannot w/o hearing from the dr first, then FAX THE DOCTOR and THANK DR & then TELL the doctor to TELL PHARMACIST how to compound the med. provide pharmacist’s name and fax number.
THANK DR again. short & sweet. facts not emotions.
follow up.

[Anonymous]

Oh, poor little guy – it does sound an awful lot like MSPI (which can be the underlying cause of reflux). There are a lot of foods with hidden milk and soy protein so it can be hard to avoid everything but it sounds like you’re doing a great job with TED! How has your LO been since the last time you posted? Hopefully you won’t need to use Neocate or EleCare again, and I’m sure you already know but elemental formulas (Neocate/EleCare) are different from Alimentum or Nutramigen. Elemental formulas are made from amino-acids (building blocks of protein), which is why they’re easier for babies with MSPI to digest. Which I think someone else mentioned.? Anyway, just wanted to say good luck and you’re doing a great job! If you do end up going back to Neocate let me know I can get some samples for you.

[Anonymous]

Rachel@Neocate-
Yes, I definitely realize there are many hidden sources of dairy and soy….that’s why I am METICULOUS about reading labels and avoiding anything from sodium lactalate, to casein. We are definitely dealing with MFPI, not MSPI….I just still haven’t figured out all the foods he is reacting to. He has been doing great since I cut out the nuts and orange juice. I just am doing TED to make sure and get a baseline.

I tried the formula again….and he had diarrhea and increased bleeding following. It just can’t be a coincidence. I mean, put it this way…..out of the past 8 days, I have tried formula 5 times. When you figure he eats about 7 times per day….that’s 56 feedings in the past 8 days. So, out of 56 feedings this week, 5 have been from formula. The bowel movements following the breastfeedings have been normal breastfeeding poops (since I cut out the nuts and orange juice in addition to the soy, dairy, fish, and eggs). The bowel movements following the formula have been watery, exposive, and had a good teaspoon or more of bloody mucous on top. I don’t think that can be a coincidence…..5 out of 56 times???

I wonder if he’s allergic to corn, since the formula is largely corn syrup based. I just don’t know how that can be good for him, anyway.

It’s back to breast for me! I just hope I can get him to a baseline fast. I’m losing between 1-2 lbs per day. Argh.

[Anonymous]

I agree that your LO is better off breastfeeding at this point, I hope you didn’t think I was suggesting otherwise! It sounds like you’re making your way to an answer concerning his intolerances and working extremely hard with the elimination diet. Good luck and I hope he continues to show improvement!

[Author]

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