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I Hate My Pediatric Gi...


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#1 Sesara

 
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Posted 03 July 2012 - 06:39 PM

Our appointment today could barely have gone worse. So, at the GI's office, we had a different nurse this time, who I had to correct that we had done naked weights on my son the past 2 visits, rather than clothed on the digital scale. Then when she measured him, he had somehow shrunk. Fine, whatever, different nurses, it's just frustrating because I know he's grown since his 18 month clothes have gotten too short for him.

Then into see a different nurse, whom I gave a monthly update to. An update that I'm pretty sure the GI didn't even look at.

Then he came in, asked me how we were, and if DS was any better, and I explained that we'd had some improvement in stools, but not completely. Then I explained that I'd only recently gone gluten free myself and that DS had probably been getting gluten via my colostrum before that. Then he asked about the dietician, I told him she was happy with our diet, he complained fairly that I hadn't returned the food log they gave me to take home - my bad, I've been busy and pregnant and haven't mailed it back, and then he told me that we should come back in 2 months.

So I asked him about what our next steps were. And it was like he woke up and actually looked at my son's charts enough to criticize that DS had coconut milk when he should have pediasure, and again stated that he wasn't getting enough calories. So I said no, and he was definitely getting enough calories, that some days he got as much as 1500 calories because I had been tracking it before the dietician appointment. And the GI laughed and told me that there was no way he was eating 1500 calories, and when I disagreed, he asked me where it was all going then? Because it would have to be either getting vomited up or pooped out or a problem with his metabolism, and his thyroid levels were fine.

I agreed that he wasn't vomiting it up either, and repeated that I was sure it was getting pooped out. So then he decided that we need to do a malabsorption study on my son NOW...it's been three months, and they've just decided to look at this now?

I am convinced that the GI thinks I'm lying about everything and is only doing this study to prove that my son isn't malabsorbing and I'm just not feeding him enough calories, and that there is nothing else wrong with him. I'm also worried, given that his diapers are making progress, that he won't show "enough" malabsorption by the time we get this test performed. Of course we couldn't have done this study before we went gluten free. Ugh.

And then just to put a cherry on top, he not only circled failure to thrive but weight loss on this visit's diagnostic sheet. Which is bullshit, because my son gained, albeit only a minor amount, going from 22 lbs exactly to 22.5 lbs in a month. Unfortunately, between that visit, we also had a weight from the dietician visit, where they stood him, fully clothed, on a different digital scale. Of course, he weighed a little over 23 lbs at that visit, because he was wearing clothes! But the GI used that weight to diagnose "weight loss", apparently - he didn't even say anything to me, so I didn't notice it until we were checking out.

I am going to start looking for a 2nd opinion tomorrow. Not sure how to phrase it in a way that won't get us rejected. It just seems to me that this doctor has decided that I'm the cause of my son's health issues and isn't willing to look for the real cause - I mean, I'd think the next step would be allergy testing or something like that. I feel so angry and defeated right now.
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#2 Juliebove

 
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Posted 03 July 2012 - 11:25 PM

Sorry to hear that! I even had a Dr. tell me, "She doesn't have food allergies!", in reference to my daughter. What was she? A psychic? She was tested repeatedly for allergies but never for foods until I finally took her in specifically for that. She didn't have any but... She does have multiple food intolerances. And those had included wheat and gluten.

Thankfully we have changed her diet and she is now on a cocktail of vitamins and minerals and *knock wood* hasn't been ill for about a month now. Of course school is out so she is not in contact with as many kids.
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#3 frieze

 
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Posted 04 July 2012 - 05:41 AM

Our appointment today could barely have gone worse. So, at the GI's office, we had a different nurse this time, who I had to correct that we had done naked weights on my son the past 2 visits, rather than clothed on the digital scale. Then when she measured him, he had somehow shrunk. Fine, whatever, different nurses, it's just frustrating because I know he's grown since his 18 month clothes have gotten too short for him.

Then into see a different nurse, whom I gave a monthly update to. An update that I'm pretty sure the GI didn't even look at.

Then he came in, asked me how we were, and if DS was any better, and I explained that we'd had some improvement in stools, but not completely. Then I explained that I'd only recently gone gluten free myself and that DS had probably been getting gluten via my colostrum before that. Then he asked about the dietician, I told him she was happy with our diet, he complained fairly that I hadn't returned the food log they gave me to take home - my bad, I've been busy and pregnant and haven't mailed it back, and then he told me that we should come back in 2 months.

So I asked him about what our next steps were. And it was like he woke up and actually looked at my son's charts enough to criticize that DS had coconut milk when he should have pediasure, and again stated that he wasn't getting enough calories. So I said no, and he was definitely getting enough calories, that some days he got as much as 1500 calories because I had been tracking it before the dietician appointment. And the GI laughed and told me that there was no way he was eating 1500 calories, and when I disagreed, he asked me where it was all going then? Because it would have to be either getting vomited up or pooped out or a problem with his metabolism, and his thyroid levels were fine.

I agreed that he wasn't vomiting it up either, and repeated that I was sure it was getting pooped out. So then he decided that we need to do a malabsorption study on my son NOW...it's been three months, and they've just decided to look at this now?

I am convinced that the GI thinks I'm lying about everything and is only doing this study to prove that my son isn't malabsorbing and I'm just not feeding him enough calories, and that there is nothing else wrong with him. I'm also worried, given that his diapers are making progress, that he won't show "enough" malabsorption by the time we get this test performed. Of course we couldn't have done this study before we went gluten free. Ugh.

And then just to put a cherry on top, he not only circled failure to thrive but weight loss on this visit's diagnostic sheet. Which is bullshit, because my son gained, albeit only a minor amount, going from 22 lbs exactly to 22.5 lbs in a month. Unfortunately, between that visit, we also had a weight from the dietician visit, where they stood him, fully clothed, on a different digital scale. Of course, he weighed a little over 23 lbs at that visit, because he was wearing clothes! But the GI used that weight to diagnose "weight loss", apparently - he didn't even say anything to me, so I didn't notice it until we were checking out.

I am going to start looking for a 2nd opinion tomorrow. Not sure how to phrase it in a way that won't get us rejected. It just seems to me that this doctor has decided that I'm the cause of my son's health issues and isn't willing to look for the real cause - I mean, I'd think the next step would be allergy testing or something like that. I feel so angry and defeated right now.

Sesare....you know my fear about this doc!...be aware, if they involve CPS that will mean trouble for all the kids in the household, including the one that you are carrying.
I would get him seen and measured at your peds office, ASAP! and never set foot in that GIs office again.
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#4 Mom2J112903

 
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Posted 04 July 2012 - 05:52 AM

I agree, you need a new pedi GI ASAP. I would start fresh with the new GI and simply state that you are wanting a second opinion, nothing wrong with that!

Allergy testing is something you would need to talk to your ped about getting a refferal for. I suggest a pedi allergist for this AND one whom will test for IgE reactions since those can and typically do cause GI symptoms.

UGIs and even an UGI with SBFT (Upper GI with Small Bowel Follow Thru) would be an excellent place to start. You will be able to see how things move along and it is not an invasive procedure.

I always like the docs that look for the zebras even though they "think" they hear horses coming.
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#5 Sesara

 
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Posted 04 July 2012 - 06:14 AM

Just to add insult to injury, I finally received a response back from the University of Chicago Celiac Center, who I had contacted several weeks back regarding a possible 2nd opinion. This was the e-mail they sent me:



Only 1 week off gluten won't mask at all the results of the Prometheus tests. Keep in mind having only a genetic positive test (IF it come back positive) does not mean having celiac.

It is important to realize that the symptoms described (basically, failure to thrive and chronic diarrhea) can be due to a number of conditions other than celiac, and insisting on celiac might end up by delaying the right diagnosis. For instance:

- Immune deficiency syndromes

- Cow's milk protein allergy

- Small bowel bacterial overgrowth

- Giardia infection

- sucrase-isomaltase deficiency

etc.

Please notice that the first 4 of this short list are all conditions associated with increased intraepithelial lymphocytes too!



Now, I am MORE than happy to look at other possible causes, but none have been suggested to us. Additionally, I think we can rule out Giardia and cow's milk protein allergy since they tested him for Giardia at the beginning of our journey, and he has been totally dairy free for weeks now, not to mention that he never had any issues with milk protein when we were nursing. But the GI hasn't even suggested that there could be an issue with his immune system or bacteria in his intestine. Or really, anything else except more calories.

I guess the only positive benefit of all this is that in the unlikely event that he has one of these other issues, his stool test will prove the malabsorption. If he is improving because of being gluten free, well, I will be able to point out weight gain, one would assume - after all, 1/2 a lb in a month where he was still getting glutened by my colostrum is pretty good, and can only get better as he continues to heal. But yes, we will be calling the GI at the other hospital tomorrow, when normal business resumes. I doubt we will look back.
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#6 Mom2J112903

 
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Posted 04 July 2012 - 07:54 AM

I would also look at FPIES, Gastroparesis/Delayed Gastric Emptying, or even dysmotility in the intestines in addition to the others. A *good* GI will look at the ENTIRE picture, not just one or two symptoms.
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#7 kareng

 
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Posted 04 July 2012 - 08:01 AM

Just to add insult to injury, I finally received a response back from the University of Chicago Celiac Center, who I had contacted several weeks back regarding a possible 2nd opinion. This was the e-mail they sent me:



Only 1 week off gluten won't mask at all the results of the Prometheus tests. Keep in mind having only a genetic positive test (IF it come back positive) does not mean having celiac.

It is important to realize that the symptoms described (basically, failure to thrive and chronic diarrhea) can be due to a number of conditions other than celiac, and insisting on celiac might end up by delaying the right diagnosis. For instance:

- Immune deficiency syndromes

- Cow's milk protein allergy

- Small bowel bacterial overgrowth

- Giardia infection

- sucrase-isomaltase deficiency

etc.

Please notice that the first 4 of this short list are all conditions associated with increased intraepithelial lymphocytes too!



Now, I am MORE than happy to look at other possible causes, but none have been suggested to us. Additionally, I think we can rule out Giardia and cow's milk protein allergy since they tested him for Giardia at the beginning of our journey, and he has been totally dairy free for weeks now, not to mention that he never had any issues with milk protein when we were nursing. But the GI hasn't even suggested that there could be an issue with his immune system or bacteria in his intestine. Or really, anything else except more calories.

I guess the only positive benefit of all this is that in the unlikely event that he has one of these other issues, his stool test will prove the malabsorption. If he is improving because of being gluten free, well, I will be able to point out weight gain, one would assume - after all, 1/2 a lb in a month where he was still getting glutened by my colostrum is pretty good, and can only get better as he continues to heal. But yes, we will be calling the GI at the other hospital tomorrow, when normal business resumes. I doubt we will look back.



I don't think this email is so bad. I would take it to the new doc. I would keep it in my purse and see if he suggests these things. If not, show it to him so he can see that other experts want all problems considered.

You might want to take pictures so his diaper poops for a few days to prove how much he goes? How much he eats and drinks and how much comes out by how many wet diapers and poopy diapers. ( I think you said he was in diapers? ). Doctors like I & O s ( Intake and Output). Might help to show you do feed him if that becomes an issue.
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#8 Sesara

 
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Posted 04 July 2012 - 08:39 AM

I don't think this email is so bad. I would take it to the new doc. I would keep it in my purse and see if he suggests these things. If not, show it to him so he can see that other experts want all problems considered.

You might want to take pictures so his diaper poops for a few days to prove how much he goes? How much he eats and drinks and how much comes out by how many wet diapers and poopy diapers. ( I think you said he was in diapers? ). Doctors like I & O s ( Intake and Output). Might help to show you do feed him if that becomes an issue.


Oh, no, I didn't find the e-mail bad at all, just that it proved to me that this GI isn't really considering other causes at all now, just convinced that I'm underfeeding my son.

My son is 22 months, so potty training is starting, but we will probably be in diapers yet for a while. And I doubt he is able to control his bowels with the loose stools he has. And yes, I am suppose to complete a food diary for their nutrition analysis, but since it's all self-reported, I don't think this doctor will necessarily believe it anyways. I certainly can take pictures of his poop on a given day.

But one of my primary worries is that his poop is getting better, finally. So I'm not sure how much credence it will give to my argument at this point. His poop was the reason I wanted him looked at in the first place, and it just seems like no one has cared about it, apart from making sure it didn't contain parasites or bacterial infection.
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#9 Lfrost

 
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Posted 05 July 2012 - 01:01 AM

I am wondering why they haven't done allergy testing yet. Our Ped was able to do it without a referral. Basically, I went in and demanded an allergy test. I had no idea that my son had IgE reactions to MULTIPLE foods including wheat.
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#10 StephanieL

 
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Posted 05 July 2012 - 03:28 AM

What are you thinking it may be an allergy? I am not seeing a list of symptoms (you probably listed those elsewhere) but if it is GI issues, allergy testing isn't going to show anything. IgE allergies is what they test for and that I think you would know he has (itching, breathing issues, vomiting, diarrhea, shock).

I have gotten second (and even third now) opinions. You just call for an appointment and start again. Explain what you have had done and see what the new Dr's recommendation is.

Good luck. Sounds like this Dr is a real piece of work :(
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#11 Sesara

 
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Posted 05 July 2012 - 03:32 AM

I am also wondering why we haven't looked at food allergies. The dietician put it in her recommendations if we don't see improvement, and I know that if he's even temporarily developed an allergic response to something else, it could be delaying healing. I actually think that is what I was expecting when I went in, and what prompted me to ask about next steps.
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#12 Sesara

 
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Posted 05 July 2012 - 03:36 AM

Stephanie, what do you do about records? I mean, I have copies of most of my son's significant test results, fortunately, but do you explain that your child has been seeing Dr. So and So, or do you request a copy of your child's file, or what?
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#13 StephanieL

 
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Posted 05 July 2012 - 04:27 AM

I am thinking it isn't allergies is what I am saying. Honestly, if it is an intolerance issue, an allergist isn't going to be of much help. Allergy testing isn't very accurate to begin with so the "alternative" testing for intolerances is even less so.

It sounds as if you have been doing a food log. Have you kept trace of issues as well? When we were figuring out DS1/DD/DS3's issues that was the most helpful. We figured out several foods we needed to avoid because of the detective work and then taking things out of the diet and retrying to see what happened. Again, allergy testing as a fishing expedition isn't recommended at all. There are too many false +'s that lead to very restricted diets for no reason.

As for a second opinion, I tell them we have been to other Dr's. I don't name names (if the new Dr wants copies of medical records they'll find all that out anyway, not that I hid it at all either.) I think that people are worried about being polite with Dr's. The truth is, you are the consumer and part of being a good consumer is getting to the bottom of things and if that requires you to find a Dr who is more knowledgable, so be it! I think any Dr. who is "offended" by a patient wanting a second opinion is pretty much worthless! If they are confident in the dx they have given, what do they care, ya know?

I would take copies of the tests with you. Anything more the new Dr would need, they can get if you sign a release. All this assuming you are in the US (I am not sure how things work elsewhere :) )

Again, keep us posted and good luck. It's so hard when we are trying to do the best for our littles!
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#14 Mom2J112903

 
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Posted 05 July 2012 - 05:24 AM

IgE allergies are VERY real, just ask a parent whose child has FPIES. Don't jump to the horse when a zebra may be what you are looking for. Diarrhea CAN and IS a symptom of MANY different GI disorders, so WHY jump to a certain dx instead of looking at the ENTIRE picture? IgE testing is done by blood, NOT the prick testing that you hear often about. We have been down the GI road since my son, whom will be 9 in November, was born. Don't discount things that you think are "off the wall"....
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#15 StephanieL

 
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Posted 05 July 2012 - 05:42 AM

Crystal, I think you are misunderstanding.

1) IgE allergies are test for via blood and/or skin testing. These are the allergies an ALLERGIST would test for. These are the ones that can/do cause anaphylactic reactions. Maybe you should look into the difference between IgE, IgG, IgA and other immunity. They are very different and testing for any of them is not really accurate.

2) I know about FPIES. My kid has FPIES. I have seen him go into shock because of it.

3) I believe I said I didn't know all her signs and symptoms. I also said if diarrhea is the "only" thing she is dealing with (and I say only but know it's a big issue!), that it is doubtful that IgE allergy testing is going to be of much help. It is NOT recommended to test kids for allergies they have not shown a clear reaction to.

I am in no way suggesting she not see an allergist, I am saying that unless it is an IgE allergy that most board certified allergists are not going to test for anything else as they are intolerances and not true allergies and not something they are really into.
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