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beyond frustrated today


Forum: Children with Special Needs

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  #1  
November 18th, 2011, 09:37 AM
Super Mommy
Join Date: Jun 2009
Posts: 932
well yesturday was johns GI apt. the one we've been waiting for for almost a year...well im not too thrilled with the results... apparently the diarhea is normal and not eating is supposed to be countered with force feeding! and limited drinks(which he already doesnt drink as much as he should)

Yup so super impressed!
they are doing a endoscopy in jan. but only to rule out celiacs, which the blood tests came back neg. for.

they are not concered because he is gaining weight...which if they were smart they would have taken off his boots and cloths first! so in actual fact he has lost weight..but what the heck do i know? im just his mom!

so im not too sure where im going from here but im super mad and frustrated!!
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  #2  
November 19th, 2011, 10:10 AM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
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Doctors can be sooo stupid. That sounds like a combination of Danny's second and third GI at the points where we left their practices. "Some children just have this stool pattern and that is okay for them." "I won't do anything about him not eating unless he falls off the weight charts." Yes wait until actual damage has been done before you do anything about my son's health issues. Please. I would love to watch him suffer for a few months just because you have a brain made of mush. Why wouldn't I trust you just because you have MD after your name? Arg...can you tell I have some harsh feelings about GI's? Some of them are so pinheaded by the "obvious cases" that when they see something that is chronic but not severe, by their definition, they completely disregard any problem at all. I couldn't stand it!

ETA: Depending on how far away they are I would ask for biweekly or monthly weight checks so that they can see his weight pattern on their scales....if they are like most of Danny's doctors that is all they will trust. Not home scale records or other office records...only their records...even for weight trends... If he is weighed naked at the ped and that is where they got the records from then have them weigh him without clothes or shoes on routinely...
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  #3  
November 20th, 2011, 04:34 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
Sorry to hear that! I have to say that I've never been impressed with a GI that we've seen. They just seem so uncaring!
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  #4  
November 21st, 2011, 10:47 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
Sorry it wasn't a good experience.
I wish I had some good advice for you. If it were me, I'd just keep looking for a doctor who will listen and be more helpful.
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  #5  
November 22nd, 2011, 06:28 PM
alicenwonderland's Avatar Platinum Supermommy
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Location: Rochester NY
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if you can switch, i would! Weight is important. My GI does a naked weight at every appointment. And food refusal is a big deal. Force feeding never works. Sometimes taking away other food does. Flavor enticement can help too (for kiddos that need formula)
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  #6  
November 23rd, 2011, 09:19 PM
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well a little update...ive decided we are going to do weekly weights at the community health clinic... I got all excited the day after our GI apt, because John ate everything I gave him....but since then he has refused everything except bread....so he is having pediasure ... we've tried his favs, and everything....nothing works.
He wont even drink the smoothies I give him...so we are going tomorrow to have him weighted.
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  #7  
November 24th, 2011, 07:10 AM
alicenwonderland's Avatar Platinum Supermommy
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celiacs blood tests are not always accurate, scopes with biopsy are really the only way to know anything definative. But they obviosly don't dive into those until they are sure they are necesary.
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  #8  
November 26th, 2011, 08:47 PM
~LaurenNoel~'s Avatar Platinum Supermommy
Join Date: Mar 2009
Location: Florida
Posts: 7,909
Sounds like my kids, but Ruby is tube-fed now. What are his symptoms?

Edit: I saw your other post. Wesley is the same way, he will eat some one day, then nothing the next. He has severe gastroparesis (stomach empties super slow), and severe GERD. He is seeing a metabolic specialist as well soon. The endo sounds like a good idea. They usually take biopsies, which is a better indicator of food allergies. If everything looks good (no inflammation), then it might be more of a behavioral issue. Have you looked into feeding therapy?
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///...........................Lauren, wife to Jay, mom to Wesley and Ruby

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Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11

Last edited by ~LaurenNoel~; November 26th, 2011 at 08:52 PM.
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  #9  
November 30th, 2011, 09:50 PM
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i know when he was a baby he used to spit up everything all the time, but since we didnt have custody of him ( he is my stepsons brother..long story) my dr. wouldnt see him.
We started getting him at 4months. We got custody at 11months... he was on formula til he was 18months because he didnt like solids much. He only started eating more solid foods at 23months
I know he had a feeding tube when he was born for the first two months... and then i have no clue...she stopped taking him to the dr.
I know at 12months he was a healthy 24Ibs... but went down and up since then..and is only at 26/27Ibs now.
Our early intervention therapist is helping us, but short of the GI she has no other ideas...although OT is coming to see if they can help.
Im kind of hoping they will find something.. i know the skin test for dog allergies was wrong, as we had to take our puppy back today...he immediatly got stuffy and wheezy and watery when we got her...we gave her a bath and last night he had an asthma attack
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  #10  
December 1st, 2011, 11:48 AM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
I'm so sorry you had to take the puppy back! That must have been heartbreaking!
And I'm sorry to hear about the asthma attack. I hate those!

Hope the OT can help. Has he seen an allergy specialist? Maybe they could try some different tests.
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