GI's and what they have to offer

[LaurieG]

DD's endocrinologist talked me in to making another appt with a GI based on the fact that her growth is so horrible. (She is 18lbs and 27 1/2 inches at 18 months - way below the 3rd % for both, and has been dropping signficantly on the curves). The appt is in 2 more weeks. I really have negative emotions about it but I'm trying to set emotion aside and focus on what this will actually bring us in terms of information to help DD. I think it would help me to hear what you all have gained in terms of helpful info. Or if you didn't feel your GI appt was helpful share that too, and the reasons.

My fear is that either there will be no helpful information gained or there will be a lot of pressure to do things I don't want to do (scope - though I would consider it if I felt there was useful info to be gained, wean, etc). Or worse - both. Was that your experience?

[chlobo]

subbing b/c I'm in a similar situation except our appointment isn't until June.

[LaurieG]

I'll share the experiences I've had so far with Pediatric GI's, just to get the ball rolling...

DS2 had green mucousy diarrhea with occassional blood starting at about 3 weeks of age. In those days I didn't know about MDC and I did what seemed to be the best thing - I took him to the doc who referred us to a GI when all the stool cultures came back negative. Somewhere along the way I figured out I should try cutting dairy, which I did. So when we saw the GI he said "it could be some other food he's reacting to but I don't recommend a lactating woman who has just given birth restricting her diet, and he's likely to outgrow it by 6 months anyway so just leave things alone." So I did. And the blood went away, and the stool thicked up some. But at 9 months DS was anemic and months of supplementing with iron wasn't helping. So back to the GI we went and he said "give him more iron". So we did. And 3 months later he was still anemic and the GI said "give him more iron", and we did. So this went on for many months, and DS wasn't exactly anemic anymore but his iron stores were still low and we were giving the kid 90 mg of iron a day! And still he wasn't filling up his stores. So the GI said "you know, we usually don't test kids' iron stores so under normal circumstances we wouldn't even know there was an issue. We could do a colonoscopy, but it isn't likely to lead us to the real issue and it may give us some information that leads us off track entirely (the idea being if you go looking for a problem you are likely to find one even if one doesn't exist.). Let's leave it alone." So we left it alone, and now DS is anemic again. So this GI wasn't horrible - I appreciated his non-invasive style, but definitely not helpful either.

My next experience was with DD. I took her in with bloody (really bloody), mucousy diarrhea. I had already gone dairy and soy free at that point and had the sense that it was a food intolerance issue. This time we saw the NP in the office, who took 1 look at dd's bloody diaper and said "it's time to take a look inside and see what is going on." So after 15 minutes with us she was ready to scope. I suggested a more extensive ED instead, but she said "You've already gone milk and soy free. Nothing else would be causing this." I tried to talk to her about what we hoped to gain. All I got was "we need to see if there is inflammation or bleeding". No real response to my point that we could pretty well assume those things were present based on the symptoms. Instead she started listing really scary and rare things that could be going on that were totally inconsist with DD's symptoms. I did a Top 8 elimination anyway and called to cancel the scope and explained DD was better - no visible blood and less diarrhea. Did they want to see her back for a f/u visit. The response was "if you're able to control her symptoms with the diet there is no need to see her back." No suggestion of re-testing for blood, or help for how to maintain such a restrictive diet without having nutritional deficits, or even questions as to how difficult it was, or talk of IgG allergy testing. And at the time we were really struggling and really needed some help. So I found it here.

That was nearly a year ago. This time I'm taking DD to the doc DS saw. I'm hoping for maybe a stool check for occult blood - just to make sure that issue is resolved. Even better would be IgG food intolerance testing, but I'm thinking if they were willing to do that they would have suggested it a year ago. Beyond that, I'm not sure what I hope to accomplish. Is there anything else a GI might do? Obviously a scope, which I'm not thrilled about but open to hearing the rationale (if they will give it to me this time). Clearly gut healing measures, tests for malabsorption, etc are out of their element or I would think it would have been done on DS.

[Theloose]

No help here... The GI said (I was newly off of gluten dairy and soy and starting to see results) to ignore diarrhea, just look for blood as a food sensitivity issue because 7mo dd had had rotavirus 2 months earlier. They said that gluten wouldn't be the issue, it would be dairy. And that we should just avoid green vegetables for solids for her, since with all the diarrhea, she clearly didn't need the extra fiber. Orange ones would be a better bet.:

When I called back to say that she did in fact react to gluten and that now she was reacting to something new, they informed me that it was eggs. I cut out corn instead and she got better. They said they were comfortable with me playing with foods since dd was so big (27lbs at 7 months) but if I brought her in again, they'd put her on hypoallergenic formula for a few months, to 'make sure' it was a food thing. Yeah. I stopped calling them.

[mtn.mama]

Both the GI's we saw were hung up on reflux, saying it was caused by high stomach acid, and that it must be medicated.

One insisted on scoping and said that bloody poop could only be dairy, not gluten. He wanted me to wean right away.

The other said she wouldn't dream of scoping and that bloody poop would only be dairy, not gluten. She wanted me to keep breastfeeding and not eat/feed gluten until the child is at least 5 years old.

Both were proponents of probiotics.

Neither were really of assistance to us, though the first did bloodwork and celiac gene testing for dd... and the latter provided us a bunch of VSL#3.

[Chinese Pistache]

Originally Posted by LaurieG

DD's endocrinologist talked me in to making another appt with a GI based on the fact that her growth is so horrible. (She is 18lbs and 27 1/2 inches at 18 months - way below the 3rd % for both, and has been dropping signficantly on the curves). The appt is in 2 more weeks. I really have negative emotions about it but I'm trying to set emotion aside and focus on what this will actually bring us in terms of information to help DD. I think it would help me to hear what you all have gained in terms of helpful info. Or if you didn't feel your GI appt was helpful share that too, and the reasons.

My fear is that either there will be no helpful information gained or there will be a lot of pressure to do things I don't want to do (scope - though I would consider it if I felt there was useful info to be gained, wean, etc). Or worse - both. Was that your experience?

What foods are you avoiding for her? What does she eat in the way of solids? Have you gotten to baseline otherwise?

I ask because my ds was small and falling on the curve. At the 6 and 9 mth visits, he kept lagging behind and she said she didn't want to see him drop off the scale at a year. The ped knows he's bf and she is very understanding and flexible about weight gain/size, but my gut said this was an issue, too.

He's coming up on his year appt and he's steadily gained weight since 9 mths because I started feeding him more solids of all kinds, especially fat. Unlike my other kids, he's never gotten really used to the fast flow of my milk. He'd rather pull off and not eat than deal with it. I think part of it may be related to his funny palette shape. He doesn't seem to have a lot of room in his mouth for my big nipple and a ton of milk. We still nurse often, but more often at night because he's more relaxed about eating then.

Anyway, not sure if anything in my experience helps, but I've been really happy that ds is finally gaining. His bms and skin are both great, so I'm confident that we've made it to baseline.

[LaurieG]

Originally Posted by Chinese Pistache

What foods are you avoiding for her? What does she eat in the way of solids? Have you gotten to baseline otherwise?

I ask because my ds was small and falling on the curve. At the 6 and 9 mth visits, he kept lagging behind and she said she didn't want to see him drop off the scale at a year. The ped knows he's bf and she is very understanding and flexible about weight gain/size, but my gut said this was an issue, too.

He's coming up on his year appt and he's steadily gained weight since 9 mths because I started feeding him more solids of all kinds, especially fat. Unlike my other kids, he's never gotten really used to the fast flow of my milk. He'd rather pull off and not eat than deal with it. I think part of it may be related to his funny palette shape. He doesn't seem to have a lot of room in his mouth for my big nipple and a ton of milk. We still nurse often, but more often at night because he's more relaxed about eating then.

Anyway, not sure if anything in my experience helps, but I've been really happy that ds is finally gaining. His bms and skin are both great, so I'm confident that we've made it to baseline.

That's so great that your DS is gaining weight now! And that you guys are at a good baseline!

DD isn't a big eater - she's hot and cold with food and it's generally hard to get her interested. She nurses pretty often when we're together but I only pump about 6 oz during the days I work and she seems to be okay with that. IDK - I keep thinking a child wouldn't starve herself if food is available, right? She has the strange palette shape issue too. She compensates by pulling back to stretch my nipple to the front of her mouth when she nurses, so I think she's getting a full nursing session.

We're not really at baseline. We were when I was Top 8 free, I'm pretty sure. But then I started adding foods back in and she seemed to deal well with them but after awhile she got a cold and it never really cleared (that was October). But then recently I figured out she was taking a medication every day with Lactose in it, and I think she was reacting to the lactose. So we're switching the med to something else tomorrow and we'll have to give it a few weeks to see what changes happen before trying to eliminate more again. Currently, and since fall we've been just milk and soy free.

So that's part of the equation too. If they want to scope to see if she's still got damage in her GI track it really won't tell us anything. Damage could be there from the lactose, or it could be from a food we haven't eliminated.

[LaurieG]

Originally Posted by whoMe

No help here... The GI said (I was newly off of gluten dairy and soy and starting to see results) to ignore diarrhea, just look for blood as a food sensitivity issue because 7mo dd had had rotavirus 2 months earlier.

Our allergist told us the same thing - I need to broaden my definition of an acceptable poop. Blood is bad, everything else is okay. Yeah, okay. And we hadn't had rotavirus.

[LaurieG]

Originally Posted by mtn.mama

and the latter provided us a bunch of VSL#3.

What is this? It's not clicking for me.

[momofmine]

Originally Posted by mtn.mama

Neither were really of assistance to us, though the first did bloodwork and celiac gene testing for dd... and the latter provided us a bunch of VSL#3.

mtn.mama, I think you probably said this elsewhere, but I don't remember now. Did you ever try the VSL#3 with T? Or yourself? Did it give you results?

To the OP, it is such a difficult decision, knowing what route to take. I hope you find some helpful answers. Keep us posted on what you decide to do.

[Chinese Pistache]

Originally Posted by LaurieG

That's so great that your DS is gaining weight now! And that you guys are at a good baseline!

DD isn't a big eater - she's hot and cold with food and it's generally hard to get her interested. She nurses pretty often when we're together but I only pump about 6 oz during the days I work and she seems to be okay with that. IDK - I keep thinking a child wouldn't starve herself if food is available, right? She has the strange palette shape issue too. She compensates by pulling back to stretch my nipple to the front of her mouth when she nurses, so I think she's getting a full nursing session.

We're not really at baseline. We were when I was Top 8 free, I'm pretty sure. But then I started adding foods back in and she seemed to deal well with them but after awhile she got a cold and it never really cleared (that was October). But then recently I figured out she was taking a medication every day with Lactose in it, and I think she was reacting to the lactose. So we're switching the med to something else tomorrow and we'll have to give it a few weeks to see what changes happen before trying to eliminate more again. Currently, and since fall we've been just milk and soy free.

So that's part of the equation too. If they want to scope to see if she's still got damage in her GI track it really won't tell us anything. Damage could be there from the lactose, or it could be from a food we haven't eliminated.

My ds does the exact same thing! It's not so much that he gets just the end of my nipple, but he's compressing it and flattening it as much as possible so it's not choking him (I think). Good luck with the new med. It would be great if that's the culprit. As far as the GI, IDK. I'd not be inclined to do the scope myself. I'd also make them spell out what they hope/expect to see with such a procedure, because if it's inflammation, that you already know about, then what's the point?

Have you guys tried going corn-free?

[Theloose]

Is it the high arched palate caused by tongue tie and/or mouth breathing?
http://mothering.com/discussions/sho....php?t=1065852

[LaurieG]

Originally Posted by Chinese Pistache

My ds does the exact same thing! It's not so much that he gets just the end of my nipple, but he's compressing it and flattening it as much as possible so it's not choking him (I think). Good luck with the new med. It would be great if that's the culprit. As far as the GI, IDK. I'd not be inclined to do the scope myself. I'd also make them spell out what they hope/expect to see with such a procedure, because if it's inflammation, that you already know about, then what's the point?

Have you guys tried going corn-free?

Right. I think that's what DD does. Otherwise the flow to too fast, or something? Not entirely sure her rationale but she definitely seems to make it work, LOL.

We were corn free for a bit trying to get to baseline originally, but we didn't do it long-term. If removal of the lactose doesn't get us back to baseline then I'll probably do some extensive ED that involves removing corn again as my next step.

[LaurieG]

Originally Posted by whoMe

Is it the high arched palate caused by tongue tie and/or mouth breathing?
http://mothering.com/discussions/sho....php?t=1065852

DD has the high arched palate, mild posterior TT, but also Turner Syndrome, in which high arched palates are common. So I don't the the TT is the cause of the palate issues.

[mtn.mama]

VSL#3 is a medical food probiotic. Its 450 billion organisms per satchet.
I didn't try it with Taslyn but I am currently using it myself.

[Chinese Pistache]

My ds's palette is actually quite flat and low and has a ridge. No tt. And he has a shallow sacral dimple.

ETA: I think I'm confused on the palette issue, now that I'm looking at those links. . .

[LaurieG]

Originally Posted by Chinese Pistache

My ds's palette is actually quite flat and low and has a ridge. No tt. And he has a shallow sacral dimple.

ETA: I think I'm confused on the palette issue, now that I'm looking at those links. . .

Hmm. DD's palate has a ridge too, and she has the shallow sacral dimple. I wonder if the ridge is what leads to the unusual nursing technique.

So, Is there anyone at all who feels that their GI played an integral role in helping with their LO's food intolerances?

[FireWithin]

Originally Posted by chlobo

subbing b/c I'm in a similar situation except our appointment isn't until June.

Chlobo who are you seeing?

We had a terrible experience at Children's
A mama new to this board is doing very well at Mass Gen. ugh actually I don't remember.
I will find out and post here.

[chlobo]

I am seeing Dr. Timothy Buie at Mass. General. HE runs an autism clinic & supposedly thinks outside the box. We took my daughter a few weeks ago & he's running a lot of blood tests. In the meantime he recommended digestive enzymes & s. boulardii.

Also, he's letting us do followup at his clinic in Lexington so its much closer than going to Boston.

So I'm hopeful that he won't be all scopes & meds.

ETA: We had a terrible experience at Childrens as well. Who is the other mama? What is her child being seen for?

[monocyte]

Originally Posted by Mammo2Sammo

Chlobo who are you seeing?

We had a terrible experience at Children's
A mama new to this board is doing very well at Mass Gen. ugh actually I don't remember.
I will find out and post here.

That'd be me. We are seeing him and have been very happy with him. Not pushy, didn't give the whole "your poisoning BM" talk (but did say that it is hard, and really questioned my commitment, and that was end of story...he did say that sometimes an answer isn't found til weaning happens due to unknown reasons), and understands sensitivity vs allergy, and told me sensitivities are harder to find, and has been supportive of a slow rule out. He encouraged us to get off of glut and eggs. Helped us get into the feeding team, and didn't push us to start appt stim to quickly. He did put DS on reflux meds, but I didn't think that was too outlandish, and I do think its helping. Thinks we might need to be scoped, but lets try taking foods out first. I do like his approach. PM me if you want more info.