Am I being selfish?

[Anonymous]

I’m just getting home from a busy day. Sorry I couldn’t send you the link earlier, Laura, but I’m glad Erin did.

I have been re-reading “Colic Solved” recently and have been appreciating again how many jewels it contains. Months ago when I first read it, I sobbed as I realized that somewhere out there was a doctor who truly understood that my crying, miserable baby was in pain from his reflux and MSPI and did not “just” have colic. I especially like how he talks about how to get your ped to be on your side since so many peds (and ped-GIs) are not up-to-date with infant reflux and milk protein intolerance. Dr. Vartibedian’s own daughter had reflux and MSPI and so he really “gets” what it is like to have a miserable baby!

Anyone who hasn’t yet read the Wondertime interview might find it a very interesting read! And the book is even better. Happy reading!

[Anonymous]

I’m just seeing this now and we’re leaving for a week — I’m supposed to be packing to leave in 45 mins!!— but had to reply. I bfed for 2 years despite severe food limitations and acid reflux in my lo. You are not being selfish…esp when you know this is the great soother for him– and probably for you as well. I only scanned others’ replies, but we ended up taking out all dairy, soy, beef and gluten. Gluten was the final kicker for us didn’t figure it out until 17 mos old. Also he reacted bizarre-ly (is that a word?) to certain things with additives or coloring– there was even a fruit leather that looked like all fruit ingrediants and he reacted every time. It’s just a matter of figuring it all out. I really hope you aren’t miserable beyond recognition as I was during thisperiod of time but if you are committed to nurse, it will just take this extra work of finding out what hte problems really are. Once that is nailed down, it should be the continuation of a wonderful bfeeding journey for the two of you, just as with any other child. As you probably know, or Dianne might have said, it is highly unusual and I dare say RARE– for a mother to be physically unable to nurse her child because her milk is for lack of a better word “bad” or “poisoning” her child. It’s just a matter of finding what is the main problem and then not eating those foods. It took a very long time for us to figure it out. And it might take longer than the standard 2 weeks on TED to really sort things out. Our ped gi said it could take up to 6 weeks for some babies to clear their systems….unusual but possible. Not promising, but hey, it’s good to know the real life possibilities. I hope things continue to get better. I’ll check this posting next week after we’re back. Hugs to you and little one. I truly feel your pain!!

[Anonymous]

ps. has anyone mentioned using probiotics? For you and/or directly for the baby? We used Nature’s Way Infant and then kids probiotics from Whole Foods. Had great results.

[Anonymous]

I have cute milk out of my diet for my new baby’s milk allergy and I have to pump b/c he has a sever tongue tie (cannot suck effectively) I hear the “why don’t you just put him on formula” comment so much. Just remember that only you know what is best for your child.

[Anonymous]

UPDATE:

Ok, saw new Ped GI today. Really liked him.

Evan pooped in the exam room so they tested & it (surprise surprise) was positive for blood. Nurse practitioner did a rectal exam (Evan was pissed about that) & didn’t feel any polyps but said it was only a little ways in (sorry if TMI).

We are going to continue TED (minus turkey/lamb) for another week.

Also start the enzymes tomorrow. Ped GI said that that wasn’t an “article” but it was an abstract from a poster displayed @ a Ped GI conference (he was there). He said it’s reasonable to try them but he didn’t sound too optimistic.

If still no change then we will do the endoscopy & biopsy and go from there.

It feels good to have a plan, but I just wish it would end.

erinntx2008-07-15 19:23:08

[hellbennt]

I only copied a bit from the article I have…is that what you brought to him? from my post? or did you get the whole ‘article’, too?

funny, the bit I copied would be the bit to make it to a poster, LOL!

[Anonymous]

I took him the info from here:

http://www.jpgn.org/pt/re/jpgn/fulltext.00005176-199910000-00069.htm;jsessionid=L7FM0s9CFjmlQHXzBCZylBT9PXxV58yFLrHKnR51NST3wryvPdtJ!-406629960!181195629!8091!-1

Also took the bit from the article you are talking about… as well as the info from that one post (w/ the antecdotal info from the blog).

Don’t get me wrong… he was VERY interested in it, but just leery since he hadn’t heard more about it, etc.

[Anonymous]

I’m glad you had a good experience with the ped GI and found him to be receptive. I’m sorry Evan’s stool still had blood in it. I was hoping that your TED was helping with that and that Evan’s other issues were related to the changes in reflux meds. I’m glad he didn’t just tell you to quit nursing! But, what are you going to live on if you are eliminating turkey and lamb from your diet also??

[Anonymous]

Erin,

I am so glad you have a plan…I know life feels better for me when I have a plan. 🙂 Your GI responded the same way mine did about the enzymes…he told me he didn’t mind me taking them, he just wasn’t going to say it was going to help…but you know…it feels like it helps. Ihave even been able to eat some of the “forbidden” things in my diet once a week or so without any major setbacks…so I say go for it…it isn’t going to hurt you or Evan…they give these enzymes from birth to babies with CF so they should be safe.

I will pray for you this next week. I agree with Dianne about what are you going to eat, but I know you will get through it. You are a super mom for doing this for your LO!!!!!

Did you ask your GI about the testing from Great Plains?

[Anonymous]

Yeah, I faxed my OB this morning (I’m getting to be a pro @ this faxing the dr. thing – thanks Laura) about the enzymes. He wanted more info (eventhough I included the article) so I referred him to drugs.com b/c that’s where I got more info. The OTC ones should be arriving in the mail tomorrow. So, we’ll see which ones I start.

The reason I cut out turkey was after PMing w/ Paula. Her ds couldn’t tolerate any protein (well, significant amounts) & it made us both realize that since I’ve been eating an obscene amt of protein (b/c of the turkey) maybe that’s Evan’s issue too. I’m willing to give it a try. Today’s only the 2nd day of no turkey.

I did ask about the IgG testing & said he would hold off on it a bit longer w/ Evan b/c there could be false negatives as well as false positives. I didn’t really ask more questions b/c I had so many things I needed to get to & only so much time w/ him .

[Anonymous]

I tend to agree with the idea of waiting on the IgG testing. Since Evan is so young and was only exposed to your unrestricted-diet breastmilk for a few weeks, he might not have had time to build up the antibodies for many foods. Obviously, he is has reactions to some foods in your limited diet, but the 96-food panel wouldn’t have much be based on since he’s so young. We did the IgG tests on Andrew because he had been exposed to all foods in my breastmilk for nearly 8 months before I knew of the need to change my diet.

Also, about turkey, I know that many MSPI/MFPI little ones don’t handle poultry well. Andrew could handle it in my diet, but reacted to it when eating it directly. Some have offered the theory that it is because of the quantity of soy that is fed to the poultry. Anyway, it should be interesting to see how he does after you have removed turkey for a few days. You saw such a marked improvement after initially starting TED – hopefully you will see similar results now!

[Anonymous]

OB just called & won’t prescribe the Pancrease MT 4 enzymes. He said it doesn’t make sense cognitively (I think that’s the word he used) that they would work. He talked w/ others & doesn’t feel comfortable prescribing them. The OTC ones arrive today so I can start those, but I’m annoyed @ OB. He asked why Evan’s bleeding/ has blood in stool (uh, the million $$ question!) & when I said we don’t know he suggested finding out . I really like him for my care, but ugh to this experience.

On another note, Evan slept in his swing for 4.5 hrs yesterday & 3 hrs today!! I hate to jinx it, but holy cow! I haven’t had the moby on @ all today (yet).

He also has had 3 blowout diapers in the past 2 days (up his back, on pjs/onesie, etc) & never had this before. Don’t know if it’s a good thing, but we’ll see!

[Author]

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