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Aleshia

Totally Frustrated

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well I decided today to take the kids in to see a different pediatrician and get another opinion cause the other ped. wasn't listening. this one was even worse! normally I'm really not very assertive with people, especially if they seem more knowledgable etc. or have a different opinion than me. but this dr. just made me so angry that I was raising my voice to her trying to get her to listen to what I was saying. she was looking at the clock the whole time and told me that she isn't worried 1. about my 16 month old's growth (because he is still in the 90th percentile so what am I worried about?) and 2. about my almost 4 year olds loose gritty/sandy stools and that she cannot address the issues I brought up about his concentration and irritability in the amount of time she set aside for that appointment. I had to pay 2 copay amounts because I took them both in even though the appointment time she had set aside was the amount she would have for 1 child. anyway after I got so "aggressive" with her she finally said "I don't think that they need to be tested because of their symptoms because I don't see anything wrong here but because of how upset you are about it I will set up an appointment for you at the lab at children's hospital so they can do a stool sample and blood test for each of them" its like they have to calm the mother cause she's totally lost it... like ok just go along with her demands before she goes ballistic on us!... arrrrrgh :angry: anyway... sorry for ranting I just feel like dr's should take things more seriously!

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That attitude stinks! A good doctor trusts a mother's intuition!

At least she will order the test. A couple points to remember:

1) Sometimes when doctors are simply ordering the test to "humor" someone, they only order one test, instead of the full Celiac panel. Make sure you get the full panel of tests!

2) Remember that blood tests have a significant rate of false negatives in small children.

I am interested in the fact that she said she'll order a stool test. Is she ordering a Celiac stool test?


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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I never had a pediatrician for any of my children, and none of my kids have a ped for their kids. Why don't you ask your family doctor/GP to order the tests for the kids? If I was you, I wouldn't ever go back to either one of those ignorant pediatricians.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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That attitude stinks! A good doctor trusts a mother's intuition!

At least she will order the test. A couple points to remember:

1) Sometimes when doctors are simply ordering the test to "humor" someone, they only order one test, instead of the full Celiac panel. Make sure you get the full panel of tests!

2) Remember that blood tests have a significant rate of false negatives in small children.

I am interested in the fact that she said she'll order a stool test. Is she ordering a Celiac stool test?

I'm not sure exactly but when I call to schedule the test at the hospital lab I will be sure to ask them if they don't know then I will call the ped. office and maybe the nurse can tell me what has been ordered...

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I had to fire 3 pedis and a pedi GI when figuring out the issues with my dd. We now use a GP along with a homeopath MD. The homeopath is helping us get better, the GP helps us with diagnostics and keeps us in school. lol!

Hang in there. Many doctors can be infuriating in this process. It's unfortunate, but don't let it deter you from your goal in getting your children well.

Also, as hard as it is at times, try not to let anger take over when talking to these "professionals". That just gives them more reason to tune you out as they automatically assume you're hysterical and then they are even less likely to take things seriously. The next time you have a doctor tell you that they "don't see a problem", simply respond with, "Of course you don't. You are only observing them for 15 minutes in one day while I am observing them 24/7. I see a larger problem and that is why I am here. What I need is your help in obtaining the correct diagnostic tools to figure this out. I wouldn't expect you to see these idiosyncracies in such a short time span. But they are there and they are the reason we are in your office right now. Can you help us?".

I think it's a natural response to talk more loudly when it is apparent someone is not listening. But talking louder doesn't get them to listen any more intently. In fact, in my experience they just tune you out more. Try to take a step back, take a deep breath and change tact. Acknowledge what they are saying and then re-establish/reiterate your observations. Let them know what you want from them as far as further testing. Bring in copies of medical studies, lists of symptoms from this site with your child's symptoms hi-lighted. Let them know that you aren't there due to hysteria but because you are seeing a pattern emerging that points to a larger problem. If that doesn't work....keep shopping for a real doctor.


Vicky

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Ugh. It is so hard to find a good doctor! I went through two pediatricians before finding one that I liked and respected and even she kept telling me my daughter was fine because she was big. It took me insisting on a consultation to get her to realize that yes something indeed was wrong. Amazingly enough, she was the one who thought of celiac disease (I'd never heard of it).

So there are good pediatricians out there, they're just not easy to find! I think it helps to get recommendations from people you trust and then don't be afraid to keep trying to find one that is a good fit.

Good for you momma for getting testing!

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We also went through many pediatricians. When my youngest son was 5 months old and could only drink 3 ounces per bottle and then had little interest for the next feeding, the doc told me, "if he is not complaining than why are you?". I explained that he was born 10 pounds 8 ounces and came home from the hosptial drinking 4 ounces per bottle and I expected by 5 months he would need more, not less. Then between the months of 6-10 months I repeatedly brought to his attention that my son could not bare any weight on his legs at all, they were limp and dragged behind him as he pulled himself by his elbows. The doc said, "well, my wife didn't walk until she was 24 months, all kids are different." I wanted to say, but of course didn't, "than your wife had something wrong with her too <_< " Regardless at this point we switched doctors. More recently when I questioned our new doctor about the possibility of Celiac for my son, his brother is already diagnosed, he said, "with Celiac he would be under weight, not over weight". Did you ever feel as though we know more than they do?

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I can SO relate to your frustration! My daughter had whooping cough (!) at 9 months but no one would listen to me that something was seriously wrong because 1) she had been vaccinated and none of them realized the vaccine is not 100% effective and 2) she weighed 27 pounds so she couldn't possibly be sick!

AARRGGGHHHHH!

I diagnosed her from a Tel-Med tape after she had infected who knows how many others. One year later she was taller but had gained no weight whatsoever. She still suffered after-effects until kindergarten.

I still get angry when I think of how much ignorance is out there.

Stick to your guns until you get what your kids need. :)


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Fire your Doctor and get a new one! :o

Not every DOctor is a good one, we have switched often just because we move often, I have had my share of doctors that I wish I could take with me when we move and others we change as soon as we meet them. A good doctor will always listen to what you are saying about your kids, because you are their mother, and thus know your kids better than your doctor does. He /She should always take the time for your appt to listen to all of your concerns.

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I agree with Ridgewalker:

sometimes they only run one test instead of the whole panel just to humor you.

That just happened to me. UGH!!! I even took in a copy of the tests I wanted ordered. The PA said that was the one they ran. IT WAS NOT. They only checked for tTg antibodies. I was not convinced. The test can show false negatives. My daughters results were fine, so I ordered the enterolab stool test.

homebased mom. All 3 of my children were not diagnosed with whooping cough when they had it. I trusted that our drs would recognize it since it is common here. I eventually got my twins who got it 2 weeks after their brother positively tested and put on the correct antibiotic. Their brother took an antibiotic, but not the correct one. He showed the effects for much longer then them because of it.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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I can add to the pediatrician rant: I'm 16, and a few months after DX (which was suprisingly easy, I have a great GI) I started to feel beyond exhausted, achy, was gaining weight for no reason, and my hair was falling out. Afer running a test or two, my pediatrician blew me off, saying that I wasn't getting enough sleep. Uh yeah, I know, I'm in high school...but "not getting enough sleep" doesn't cause me to be SO overtired that I can no longer run (I used to run XC), walk long distances, and even getting out of chairs was hard. When I had time, I could sleep 15-16 hours...not normal!! Fast forward a month or two, I go to the gynecologist for a recheck on my endometriosis, I tell her about my symptoms...bascially she changed my birth control pill and it got much better...I had a hormonal imbalance, and basically my body thought I was going through menopause. But the pediatrician didn't even seem interested in pursuing ANY options.

I actually want to be a pediatric surgeon so I can help stop this madness!


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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I can add to the pediatrician rant: I'm 16, and a few months after DX (which was suprisingly easy, I have a great GI) I started to feel beyond exhausted, achy, was gaining weight for no reason, and my hair was falling out. Afer running a test or two, my pediatrician blew me off, saying that I wasn't getting enough sleep. Uh yeah, I know, I'm in high school...but "not getting enough sleep" doesn't cause me to be SO overtired that I can no longer run (I used to run XC), walk long distances, and even getting out of chairs was hard. When I had time, I could sleep 15-16 hours...not normal!! Fast forward a month or two, I go to the gynecologist for a recheck on my endometriosis, I tell her about my symptoms...bascially she changed my birth control pill and it got much better...I had a hormonal imbalance, and basically my body thought I was going through menopause. But the pediatrician didn't even seem interested in pursuing ANY options.

I actually want to be a pediatric surgeon so I can help stop this madness!

I think that doctors should listen when people have a problem even if they can't see it with their own eyes or its not happening to them, they should try to figure out what is wrong and run tests till they have either figured out the problem or there are no more tests to run... shouldn't it be up to the patient if they think a test is too expensive or too difficult or painful?

I'm glad that you want to be a pediatric surgeon :) its good when people see a problem out there and want to do something to help fix it!

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