Infantreflux.org | another dr. issue-pushing formula

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December 17, 2008 at 12:44 pm #59650

Anonymous
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this is more of a eergh than a boo-hoo!

Well, we’re back in san diego and with a different ped. b/c of insurance change (but didn’t like the last one so much anyway). I thought this new guy was better b/c last week he seemed really interested and open when I told him how the HCl supplements had pretty much stopped Finn’s reflux.

But this week (we had to go back so soon b/c he wanted to look at the prior med. records, but when we got there–he of course had looked at nothing) he suggested we try a two week trial of nutramigen! Here we are at 7 months of breastfeeding (with trials of TED) and he’s telling me that sometimes formula is better for reflux. I argue the point that I’m willing to do TED again and that wouldn’t that be better? and he says ‘not necessarilly”
‘why?” I ask. He says that there are proteins that are just in the breastmilk that the baby can react to!? I haven’t heard of this at all, but realized that we were not on the same page. Then he started getting defensive “I’ve been doing this 30 years…” , and I wanted to cry. Why can’t i find a dr. that is on the same page? I mean we discussed nutramigen with Ped #1 (and we’re now on Ped #4) when Finn was 4 weeks old!
I just feel like we’re back to square one. He actually suggested
positioning. We’d told him repeatedly that it’s not the
reflux that is bothering finn, it’s intestinal pain–and we tried positioning 5 months ago! He then said that the next step would be to try to get him to fall asleep by himself. Well maybe he could fall asleep by himself if he wasn’t in so much discomfort! And lastly, I’m questioning my supply again–b/c the dr.
did–finn’s in the 5th percentile.

Anyway…he still seems better than some of our prior docs because he made a point of saying that ultimately he will do what we want to do. ugh.

update–we see a surgeon on friday b/c the dr. thinks his hydroceles have developed into hernias (which could be causing some of the intestinal discomfort?). the dr. also ordered a full blood profile with a RAST test (although these may not be accurate?). the blood analysis is really for the nutritionist we’re working with…she wants to know about his mineral levels, etc.

Sorry for the ramble…and as always…thank you so much for ‘listening’. I would be lost without this forum.

December 17, 2008 at 2:00 pm #59660

Anonymous
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Oh Colleen, I’m so sorry. I know you’re trying to find a ped that understands. I’ve found the older the dr the more ‘formula fixes everything’ they are. My general ped & ped GI are both young (in their 30s) & neither has ever suggested formula… they’ve always looked for other options. The reason I share this is if you’re interested in looking for yet ANOTHER ped maybe take age into account.

I would just make a plan, explain your reasoning to the ped & stick with it.

As for the supply issues… my supply dipped a bit the past few weeks & I realized it was b/c I wasn’t eating/drinking any sugar (since I had cut out pears, pear juice, etc). Once I started adding sugar in purposefully it was right back there again. Don’t know if this is the issue w/ you but just thought I’d share.

Of course, continue making sure you’re drinking plenty of water (64oz/day +), eating enough calories (1500/day +) & eating enough fat (30g/day +)… but I”m sure you’re doing those things.

Keep us posted w/ the tests!

ETA: about the dr’s comments about “there are proteins in bm that baby reacts to”… I asked my peds (a long time ago when Evan was still pooping blood, etc) if there was a chance that he was intolerant/allergic to my breastmilk in general (despite any/all diet limitations) & that he just couldn’t nurse. Both drs. said that while this is a possibility, it is called a “complete protein allergy” & is rare… 1 in 10,000 babies. Here’s a post that Laura has linked me to in the past about it… it talks about it the 4th post down.

https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

HTHerinntx2008-12-17 14:09:05

December 17, 2008 at 4:44 pm #59668

Anonymous
Inactive

thanks erin… question–how did you know that your supply had dropped? I have never been able to get a huge amount pumping, so I can’t use that as an indicator. Did Evan let you know? I do need to be better about drinking water–I’ve been less vigilant over the last month.

December 17, 2008 at 5:35 pm #59671

Anonymous
Inactive

ugh, I hate it when doctors make us question our milk supply. I hope things end up working out with your new ped. It must be so frustrating having to change doctors so often!

December 17, 2008 at 8:33 pm #59683

Anonymous
Inactive

when sylvia was in the hospital overnight for testing, there was a newborn in the room next to us who was born with whatever the condition is called when they are allergic to all protein——and i don’t think it was something this child was going to outgrow.

there is also the condition called FPIES—food protein induced enterocolitis syndrome. this is what tracy’s little boy, eli, had.

there are also the esosinophilic disorders—-some of these kids can eat very few foods—-even when they are older.

did i already ask you if finn has had testing done?

the doc wanted us to try sylvia on formula early on because she was not gaining weight. kevin did not want me to do it—-i was actually surprised that he had an opinion—-but his instinct was right on. sylvia needed surgery, not medication, positioning or formula.

kevieb2008-12-17 20:36:01

December 17, 2008 at 8:40 pm #59685

Anonymous
Inactive

Colleen,

Yes, Evan definitely let me know that supply had dropped. I never go by pumping or the ‘feeling’ of my breasts… just use baby as a guide.

-He started waking up more @ night & not in pain, but HUNGRY (normally if he wakes up in pain he will snuggle once I pick him up but he was aiming for my chest asap-lol).

-Also, he was ‘finished’ nursing after less than 5min for both sides. He’s an efficient nurser normally but this was way too quick.

-He was getting frustrated @ the breast b/c nothing more was coming out & he wasn’t full, etc.

-He normally only nurses on 1 side, but he was latching onto the 2nd side & draining it as much as he could.

All those signs pointed to a drop in supply.

HTH

December 17, 2008 at 10:13 pm #59691

Anonymous
Inactive

Finn’s mom wrote: thanks erin… question–how did you know that your supply had dropped? I have never been able to get a huge amount pumping, so I can’t use that as an indicator. Did Evan let you know? I do need to be better about drinking water–I’ve been less vigilant over the last month.

I kno wsomeone who weighed her baby before and after each breastfeeding seesion so she coudl know how much he was taking. She did that for about the first 3-4 months. After that she had BF established and stopped.

Seh bought a cheap infant scale online, not sure where though.

I am sorry the DR is not listening.

Hav eyou ever thought of doing and EDG (scope) there *may* be greating thigs goign on than you think…that would give you spme possible answers.

An EDG was one of the best test for us.

December 17, 2008 at 10:38 pm #59692

Anonymous
Inactive

finn hasn’t had any scopes–only the upper gi. I told the dr. that I wanted to go that route (look into scopes) b/c we’ve tried the things he was suggesting.
Christine–What kind of testing is it that would show the things you are talking about?

We just need to get the hernia(s) taken care of first if that’s what is going on.

I rented one of the gram sensitive scales too in the beginning b/c finn had trouble sucking. It took him 2 1/2 months to get it, so I used to nurse, pump, bottlefeed. I would weigh him before and after to know how much he was getting. One day, he just started getting it and pulling out the milk, so I no longer needed to pump after each session. I guess I could rent a scale again. I love that thing!

Erin, Finn has been finishing feeding quicker than he used to. Although I haven’t noticed that he was fussing anymore…I just thought he was getting more efficient, too. He has been generally uncomfortable lately, so I didn’t attribute his fussing to hunger. hmmm. I’ll start looking at that more closely.

what is the EDG again?

Finn’s mom2008-12-17 22:42:39

December 18, 2008 at 2:47 am #59693

Anonymous
Inactive

sylvia was failure to thrive for the first 2 years of her life. they told me her lungs were not developed when she was born because she kept desatting. she was on oxygen for a month and an oxymeter. we had to hold her almost 24 hours a day for the first 2 months of her life. i couldn’t even put her in the swing long enough to go to the bathroom before she was screaming.

they finally decided she had reflux and put her on a low dose of prevacid and we saw some improvement—but not leaps and bounds.

i finally took her to a ped gi when she was 6 months old. he ran allergy testing to rule that out and tested to see if she was anemic. no allergies, but she was anemic, which he said told him she had a pretty good case of esophagitis. two months later he saw her again, and when he realized she was not gaining weight, he put in a ph probe and did an endoscopy.

in his words, her results were, “pretty darn abnormal.” she was refluxing almost 25%, of the time and her esophagus was getting ulcerated. she would actually reflux more when she was upright than when she was lying down. her overall % of reflux when upright was almost 29%. she was also having prolonged episodes of reflux, which are more of a problem than the actual number of reflux episodes. one reflux episode lasted 44 minutes long. she was sleeping when this happened. when she was awake, i could watch the moitor that would show what her acid levels were and could see when she was having a reflux episode—-and she wouldn’t even flinch. i think she had been in pain since the day she was born. the doctor commented that it was all she had ever known.

she had 2 ugi’s and a scope, but none of those tests showed her hiatal hernia which was pretty good sized. she had a very successful fundo right before she turned 10 months old. however, she continued to be failure to thrive. she started to refuse foods after her surgery, or she would chew them and spit them out. she developed esophageal thrush, but once we treated that, she started eating, sleeping and gaining weight—and then she got sick. at two different times they discussed the possibility of putting in a g-tube, but i managed to get enought weight on her both times to avoid it. then she developed obstructive sleep apnea and an inguinal hernia—-5 of my children have had inguinal hernia’s. the twins had double hernia’s.

finally, a week after sylvia turned 2, when she weighed about 22 lbs., she had her tonsils and adnoids removed and her hernia repaired. she finally reached “normal” baby status—if there is such a thing—-except when her teeth finally came in—the first one cut 3 days after her fundo—she had enamel hypoplasia, so she has about 11 or 12 crowns on her teeth.

she has had no complications from her fundo. she can burp, but she can not throw up. she likes to tell me that she is going to throw up——and then i tell her she can’t throw up. now she just tells me that things make her spit.

she has had only one ear infection and only one sore throat that we know of—-and she got that after it was already determined her tonsils were way too big. the ped ent said her tonsils were touching when she went to sleep and that they were filled with debris.

i have decided that my children must be made of swiss cheese inside—-we have had so many hernias!!!!!

December 18, 2008 at 12:56 pm #59703

Anonymous
Inactive

Finn’s mom wrote: what is the EDG again?

It’s an esophageal scope, They sedate the child, put a camera down, tke pictrures and 4 tissue biopses.

December 18, 2008 at 2:11 pm #59704

Anonymous
Inactive

Wow christine. that is a crazy story. I’m so glad that little sylvia is now doing well. the Dr. suspects that Finn has 2 inguinal hernias. He has 2 large hydroceles. Did any of your boys have hydroceles?
How did they find the hiatal hernia?

December 18, 2008 at 3:10 pm #59712

Anonymous
Inactive

out of my five kids with hernias, four of them were girls—and inguinal hernias are supposed to be more common in boys. my son was probably about 13 when he developed his hernia. my husband had me come look at it—but to tell you the truth i wasn’t particularly comfortable looking at my son’s genitals at that age—even though he had not hit puberty yet—-so i don’t really remember what things looked like, except that i was pretty sure it was a hernia. i think he had a larger than normal bulge on one side of his scrotum. he had been complaining of pain for about 2 months. isn’t a hydrocele when it fills with fluid? i don’t think he had one, i think that the intestine had just slipped down into to scrotum.

with my girls hernias, they would get a bulge, way down low in the groin area, right about where the hip joins the abdomen and just to the side of the pubic bone. the frustrating thing, was that when i went into the doc, the hernias were not showing. our surgeon told us he usually believed the mothers. once, we were driving past our family docs house and i stopped and checked to see if either of the twins’ hernias were poking out. one of them was, so i grabbed her around the middle to put pressure on her stomach to keep the hernia out, and ran and rang the doc’s doorbell so i could show him the hernia. i did the same thing once at the surgeons office.

kassie also had an umbilical hernia——-like i said, swiss cheese kids!!LOL!! that hernia closed on it’s own.

the surgeon that did sylvia’s fundo did not find her hiatal hernia until he went in to do her fundo. i have no idea why it did not show during any of her testing.

December 18, 2008 at 3:14 pm #59713

Anonymous
Inactive

It’s an esophageal scope, They sedate the child, put a camera down, tke pictrures and 4 tissue biopses.

if a doc is suspecting celiac, they need to take alot more than 4 tissue biopsies.

our ped gi let me stay in and watch while tianna had her scope and biopsies. he had me stand next to him and hold onto her hands to keep them away from her face—talk about a struggle. i found it really interesting to watch.

December 18, 2008 at 8:57 pm #59724

hellbennt
Keymaster

ari fell off the charts at his 9 month check up and he was my non-refluxer. dr never told me to quit breastfeeding! je ‘just’ didn’t take much to solids…

is finn eating any solids? add good fats like flax seed oil, olive oil even avocado oil…

December 18, 2008 at 10:56 pm #59728

Anonymous
Inactive

Finn is eating a little bit of sweet potato–I put his HCl supplement in it. He does like it. I could add some oils to it..
The dr. was also concerned about iron b/c I don’t want to give him the fortified rice cereal….but if he turns up low in hemoglobin, I have some other ideas.
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