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What To Think If Sister's Kids Pediatrician....


floridanative

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floridanative Community Regular

Being the only dx'd Celiac in my family, I anxious for other family members to get tested. So far my Mother is trying to get tested this week. But my sister has a 3yo that seems to have some symptoms of Celiac...she thought he was just lactose intolerant but taking out that lactose didn't clear everything up. So she goes to her ped. and tells him she thinks the kid needs to be dx'd for Celiac, told him I was recently dx'd. His response was that he just dx'd his first Celiac kid last month and that it is very tramatic to make kids give blood so he wants my sister to get tested first. If she has it then he'll test the kid. Now to my thinking this makes no sense whatsoever. My sister has the gene but that does not indicate she has the active disease in her body. Couldn't she test negative and her kid still be positive? Gosh it's so dang hard to get docs to wake up already!


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tarnalberry Community Regular
Being the only dx'd Celiac in my family, I anxious for other family members to get tested. So far my Mother is trying to get tested this week. But my sister has a 3yo that seems to have some symptoms of Celiac...she thought he was just lactose intolerant but taking out that lactose didn't clear everything up. So she goes to her ped. and tells him she thinks the kid needs to be dx'd for Celiac, told him I was recently dx'd. His response was that he just dx'd his first Celiac kid last month and that it is very tramatic to make kids give blood so he wants my sister to get tested first. If she has it then he'll test the kid. Now to my thinking this makes no sense whatsoever. My sister has the gene but that does not indicate she has the active disease in her body. Couldn't she test negative and her kid still be positive? Gosh it's so dang hard to get docs to wake up already!

"It's too hard to test, so we won't try to fix this." Bah. Stupid doctor. Remind her that SHE is paying for HIS service. She's the boss! It's up to HER to decide if her own children can deal with the blood draw.

jerseyangel Proficient

Hi--Dosen't make any sense to me, either. Since you have it, I would think it would be possible for your sister to not have it but your nephew to have it. No matter what your sister deceides to do, I think that the child should be tested--he already may be having symptoms. Jeesh--I know what you mean about the doctors, why is it that they would be right there testing for any other disease, but when it comes to Celiac, they seem to have every excuse in the book?

penguin Community Regular

It's too traumatic to take blood? His first celiac was last month and the trauma was in the needle to take the test?

I hope he never has a kid as a patient that is showing obvious signs of leukemia or anything, it would be too traumatic to take the blood test! BAH indeed!!!

His convenience should have nothing to do with testing. If he gets squirmy around kids and needles, he never should have become a pediatrician. I wonder how he got through his residency!

Guest Robbin

I agree that it is totally WRONG for him not to get tested. What if he had suspected cancer or diabetes? They would surely take blood then. This is the kind of thing I dealt with when my oldest was showing signs of diabetes. These drs. just can't stand to have the patient suggest something that hasn't come from their own minds. I think it's some kind of ego-thing. It does seem that they just are reluctant to dx celiac, though. I had the same response from my dr. when I presented with the same symptoms as my son--we'll use you as the guinea pig. Well, ok, fine but what about my child now? A little different scenario, I know, but kids are SUFFERING! Pediatricians, in my experience are the WORST with brushing things off. I would tell your sister to take him to another dr. if possible. Research does link this with juvenile diabetes and she needs to get on this NOW. Celiac is easier to deal with than celiac AND diabetes. (As well as a host of other complications she would be preventing) A simple blood test is a small price to pay. Keep us posted on the little fellow. :)

taweavmo3 Enthusiast

That's just crazy and ridiculous. Remind him that in Italy every kid from the age of 6 on up is screened routinely, symptoms or not, family history or not. Celiac can jump around in familes, it does not have to come from a first degree relative. My brother and my daughter are the only ones who have tested positive in our family. That ped really doesn't know what the heck he is talking about....so your sister needs to either get pushy with him, or just find another doctor. Looking back, lactose intolerance was one of the first clues when my kids were little. Now that my 2 year old has been gluten free for 3 weeks, he can tolerate dairy again without a single problem! He hasn't tested positive, but that alone if proof enough for me.

And in regards to the trauma of the needle, amazingly enough, my 2 and 3 year old did not make a peep when they got their blood taken. I'm not sure if we just had a good tech or what, but it was NO BIG DEAL! Better a little needle prick now, then intestinal damage, learning disabilities, delayed development.....the list goes on. I hope she finds a new doctor and gets her little girl tested.......there are good ones out there, you just have to really search to find a knowledgable doc.

floridanative Community Regular

I can't thank all of you enough for your responses...I wanted to get my ducks in a row before telling my sister the doc does not know what the heck he's doing with regards to Celiac. I will summarize your comments and send her a detailed e-mail. With two screaming kids in the background a long distance phone call will not suffice. I never thought of the juv. diabetes thing so that was excellent to bring that up as well. :huh: Me not having kids, the last thing I like to do is tell others what to do with theirs! But this is serious stuff and my sister needs to know how serious. Thanks again to all who took the time to confirm my feelings on this. ;)


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Guest nini

OMG is that Dr. for real??? A blood test is too traumatic so we won't do it???? WTH??? I'm sorry but I just wouldn't sit still for that one. She needs to take him to another Dr. preferrably a pediatric GI that has experience with Celiac. Oh I just get so mad when I hear of Dr.s saying such idiotic things.

momandgirls Enthusiast

I'm new to this board and so don't have much experience...but...somewhere on this board is a list of doctors that people have recommended. Maybe if you can tell us which state she's in, someone here can recommend a good doctor for her to go see?

Canadian Karen Community Regular

Floridanative,

On the top of this thread where it says "Options", click on that and just e-mail this whole thread to her..... That would be the best way to get the message across to her.... Sheesh! Some doctors.... <_<

Karen

floridanative Community Regular

First of all Nisla...you make me laugh!!! Of course I agree with everything you said.

Karen - good idea about sending the thread but first I want to see what her response is to the very no nonsense e-mail I just sent her at the end of the day. I made it perfectly clear that I can guarantee this doc is not Celiac wiz and her son needs testing and it's not important for her to have the test first, nor will her results indicate his. She is very smart and I just think it's hard for her like most of us who found it out the hard way, that hardly any docs know more than the average Celiac. I mentioned diabetes and even though it was a scare tactic, that's probably what she needs right now. After all she was excited that he had dx'd his first Celiac kid recently.....now I remember that he's well into his forties. So it's not like he's just out of med. school. But in fact he's seeing some Celiacs reg. but he doesn't know it!!!

Also, I wanted to note that there are NO good Celiac docs in the part of FL she is in. Believe me I know since I posted on this site to find my own Mother a good doc to do her test and I had to go to another board to get help with that one. Answers were : send her to the Mayo Clinic in Jacksonville or send her to Atlanta to see Dr. Rudert. Also, I was told by several people who used to live in that town that indeed there was not one knowledgeble doc in town and it was best to go through enterolab. I'm getting to see why people can't get dx'd more quickly. I'm in a major US city and I know two of my three docs thought I was a hypochondriac. Well before this mess came up I went to the doc once a year for a sinus infection and that was it. Once to the gyno for check up. Then all of a sudden I really have something wrong and I'm worrying about nothing.

munchkinette Collaborator

Ugh, why are some of the biggest jerks pediatricians? My pediatrician growing up was like that, but we lived in a small town so our choices were limited. My brother complained about his back hurting and the guy said it was all in his head to get out of school. Please. This is a kid who has been playing rough sports since he could walk. It's not like he didn't have plenty of opportunity to get hurt. We went to a chiropractor and my brother started to feel better.

Guest nini

I'm glad I can make you laugh! It just burns me up though... It reminds me of all the idiotic Dr.s I've seen over the years, especially the one that told my mom when I was 7 or 8, that I was making it all up for attention and that I was just a hypochondriac!!! My mom STILL believes him.

mommida Enthusiast

When my daughter went in for her blood test, she was a little over a year old. She sat perfectly still, and it was not a good blood draw. I think she got poked at least five times. She was anemic and dehydrated from Celiac. The pain level an undiagnosed Celiac has to endure on a daily basis can not be entirely explained, and certainly not by a toddler who might not know anothing but daily pain.

The doctor did not take into consideration, the serious nature of undiagnosed Celiac/gluten sensitivity and the long term well being of the patient.

Laura

floridanative Community Regular

Okay here is another one for you. Got my hair cut, had my Celiac book since I often have to wait. Not today, no wait and no one coming after me to my stylist - totally odd. So she asks what is Celiac and I tell her. I mention it's genetic and that my sister's ped. is a jack*** since he's putting off testing my nephew and blah blah. So the girl asks me what are the symptoms in kids and I tell her and I can see her in the mirror and she looks worried....for her own niece. The child is all of four, was dx'd with gerd and extreme lactose intolerance, had V and D all the time, lots of stomach issues. Even off lactose does not seem to be doing well. So eventually the ped. tells the mother...it's stress related.......excuse me......as Nisla would say WTH??!!! How on earth would a four year old cause herself to be that sick with stress??? What are these doctors smoking?????? I can not get over all the idots out there.

Before I left I wrote some websites down for the girl to tell her sister in law to read about Celiac and then go into her doctor demanding the kid be tested for it asap.

jerseyangel Proficient

These "doctor" stories never cease to amaze me. Hopefully that Aunt will get her SIL to get that child tested. Stress--zeesh!

chrissy Collaborator

you know, my baby is just as traumatized when i turn off "dora" as she was when she had blood drawn-------but i still turn off the cartoons when i'm sick of them!!! what a nutty doc.

christine

Guest nini

LOL Tiffany!!! WTH???!!!!! You are cracking ME up today!

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