Share Facebook


 
06-22-2011, 03:52 PM   #91
MomofIBD's
Senior Member
 
Join Date: Feb 2011
Location: Pennsylvania

My Support Groups:
Oh T can you see my million mile wide smile! Woo Whooo dancing! THATS the the way the medical people should be!!!! Dr's included!!! Not that you or I & anyone else wants something to be wrong. But ignorance is so NOT bliss if something is wrong! It's time to get the right answers & not some ignorant ho hum response to something that is seen & felt. But is basically being ignored! It sure feels Great to be validated & not be treated like some dimwit parent that doesn't know anything!!!
You know it makes me wonder just how confident your Peds GI is in her abilities???
Things that make you go hmmmmmmm!
Somehow the thought of Gabs GI taking a look at everything would bring peace of mind!!!
((((((((T)))))))))
__________________

Julz...Mom of 4 boys
*John (24) CD dx 12/2006 emergency bowel resec
* Wife of John dx UC 8/2008 Remicade D/C waiting for Colectomy
*Mike (22) 5/2009 emergency surgery IBS dx
*Daniel (13) CD dx 9/2010
Meds taken...Prednisone 60 mg start, ended 12/25
Flagyl (hand Neuropathy) Vancocin for C-Diff, Prilosec.
Current meds, Zantac, Probiotic
Pentasa 1,000 mg 2x a day... since dx
Multi Vit & Cal/D
06-22-2011, 06:04 PM   #92
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi T. When you wrote you are 'crying tears of joy' I started crying for you too. It is an unbelievable stress we parents go through, not just having sick children that breaks our hearts, but the medical fight for attention. Unless you've been through it, it is so hard for others to understand. I am thrilled this doctor will see Austin.

The B12 shot did nothing for Danny; the pancreatic enzymes are not helping at all so far (but it has only been about 4 days). Still waiting for results from 8 containers of stool! I am regaining my strength and desire to start to push again. Waiting and just hoping it goes away as 'mysteriously as it came' just does not feel right. If Danny has something that unique, at least we should be trying to figure it out so maybe what we learn could help somebody else ... and he feels awful.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
06-22-2011, 06:36 PM   #93
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Crohn's Mom,
I am responding to your post about Nodular Lymphoid Hyperplasia. My son (who is now a healthy, asymptomatic, 18 year-old) was diagnosed with this when he was 9 years old after several years of episodic symptoms of abdominal pain, epigastric pain, cramping, bloody stool, weight loss, no appetite, lethargy and pallor. He had a needle phobia so he had very few blood tests. However, the day he woke up with sausage-like fingers and toes and I insisted that he have blood work, he finally agreed. Blood work showed that he had a protein losing enteropathy with hypoalbuminemia, decreased iron binding, iron deficiency, low TIBC and low saturation index. I decided on the specialist that I wanted to see and insisted that my child be seen by this one only (I had been labelled an hysterical mother previously and he had been diagnosed with IBS-- 'more fiber', etc.).

The GI who eventually made the diagnosis was not the one who did the scopes, but he assumed that the previous GI saw the hyperplasia because of the description she had given to us (the 'scope report was lost...) even though the biopsies were normal. (She was the one one who had given the IBS song and dance.) This new specialist had me complete a five page history and with this and the blood tests he made the diagnosis. He did warn me that this diagnosis could be part of a Crohn's diagnosis. The specialist's theory was that our son was experiencing episodes, which usually started at the same time of year, of an allergy to something in the environment that he inhaled-- like an asthma attack in the gut.

He was put on a drug called Nalcrom (Oral Cromolyn) that he had to mix up and drink 20-30 min. before meals. He did this for an entire year-- imagine a nine year-old boy setting his watch to leave class 20 min. before lunch, going to the washroom to mix up this drink, drinking it and then going back to class, or doing this at hockey tournies etc. Whenever we would forget, or the timing would be off ( travelling), a few days later his symptoms would return. After a year, our son told us that he was ready to come off the med because he didn't think he needed it any more-- and he didn't. He has been well ever since!!

He is still very slender for his age, but he has lots of energy and went to provincials for five sports this year. He has no signs of Crohn's disease either.

I developed some form of IBD 15 months ago-- went on an elemental diet for four months and I am doing really well.

I hope that this info is helpful to you. Please ask me any questions that you have.

May your children soon be well.
06-23-2011, 08:55 AM   #94
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
I am regaining my strength and desire to start to push again. Waiting and just hoping it goes away as 'mysteriously as it came' just does not feel right. If Danny has something that unique, at least we should be trying to figure it out so maybe what we learn could help somebody else ... and he feels awful.
I'm happy to hear you say that I know it feels like we just want to "watch and wait" a lot, at least I know it does for me, but it's great that you are ready to fight some more.

Happy,
thank you so much for all of that information. Austin did have severe allergy to milk protein, and soy as an infant and had to be be treated for it. It seemed that he out grew it eventually. If he is definitely diagnosed with NHL then this momma will be one very happy camper! I am overjoyed that my daughters doctor at the Mayo clinic here has agreed to now see Austin as well. I have faith that he will get to the bottom of what is going on with him quickly and we will have some answers and go on from there.

Julzzz I'm dancing too !!
thanks hun!
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
06-23-2011, 09:09 PM   #95
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Oh man T!!! This is just the best news ever!!!

I am so happy and excited for you and Austin and you must be jumping out of your skin!

You never know, they may take on JJ as well, Sarah saw an adult GI at 14. Fingers and toes crossed mate!

BIG TIME!

Dusty. xxxxxxxx
__________________
Mum of 2 kids with Crohn's.
06-23-2011, 09:54 PM   #96
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
Ah Dusty I am walking on air !! (my secret evil plan is working ! hardeeharrharr! )

What a change in my mood/outlook this brought on for me ! I just don't have the words to explain it
06-27-2011, 07:27 PM   #97
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Awesome T! With all you've been through with Gabs, I know you'd raise the dickens before you let another child go through all that!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-27-2011, 09:00 PM   #98
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Good stuff, T.

J.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-28-2011, 02:20 PM   #99
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
Got a call from the nurse at the ped. GI's office that Austin's biopsy results are in.
She said that his colon is all clear with no issues; however, his stomach results showed "chronic inflammation".
She asked if the doc had put him on any medications to treat him when she saw all the ulcers in his stomach during the test..I said nope.
So, I asked her to copy the pathology report and have it ready for me to pick up.
She said the doctor will be calling to tell me how she wants to treat him.

Like I'm going to let her treat him....yeah right !
I can't wait to let Gab's doctor go over all these tests that this idiot doctor is ignoring all the "results" of!

So strange...I get the feeling that the nurse and I are on the same page. There was something about the way she was saying...."the inflammation and ulcers have been there a long time.."

Onward and upwards I guess now !
Have a fabulous day everyone! Hope all of your children are feeling well today!
06-28-2011, 03:51 PM   #100
gypsigirl28
Senior Member
 
gypsigirl28's Avatar
 
Join Date: Jul 2010

My Support Groups:
Wow, some doctors never seize to amaze me. Poor thing has been suffering all this time and it shows in the test results... I sure hope the new doc helps out.. Good luck

love and hugs
__________________
Rosemary
Grandmother of Madasin
Madasin was diagnosed at age 22 months old
with UC
06-28-2011, 04:20 PM   #101
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Amen T!! It's time to put her in your rear-view and move along I think! I hope the new doc can take on Austin and nip his problems in the bud!!
06-28-2011, 08:13 PM   #102
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
OMG the nurse called back again to tell me what the "doctor" prescribed for Austin....gee..go figure...Prilosec and she'd like to see him in a month if that's ok?
And then she says....the doctor would just like to make sure again whether or not he takes a lot of Advil, Motrin, etc, because that could definitely be the cause of the ulcers and inflammation.....I said are you kidding me ?!?! I TOLD HER HE IS HIGHLY ALLERGIC !! Anti-inflammatories will KILL HIM...he can't even take a fricken asprin !

UGGHHHH.....I am beyond DONE with that office !! WOW !
I'm sooo disappointed in her right now !!
06-29-2011, 07:31 AM   #103
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Roll on 12 July!!!

It can't come soon enough, ay T? And good riddance I say!

Much love mate,
Dusty. xxxxxxxx
06-29-2011, 03:26 PM   #104
radchic
Senior Member
 
Join Date: Dec 2010
Location: windsor, Ontario

My Support Groups:
Perhaps a call to the medical board is in order. She took a hypocratic oath to first, do no harm. She is most certainly causing harm by allowing the ulcers she saw 9 DAYS AGO to go untreated. She should no be allowed to play with childrens lives like this. If she is doing this to you, Tracy, knowing what you have gone through, imagine what she is doing to other families? So happy Gab's doctor is on board.
__________________
Rachel
(mom of Lucas 18 CD 12/10)
Imuran 125mg
Pentasa 3000mg
materna
iron
07-03-2011, 12:49 PM   #105
lookame
Senior Member
 
lookame's Avatar
 
Join Date: Jun 2011
Location: Columbus, Ohio

My Support Groups:
I'm a tad nervous about my little one today. He's going through another day of throwing up without running a fever. He had this a couple of months ago and it lasted a week to a month. I'm not sure what is wrong and anytime I call his doctor about it the doctor tells me to keep an eye on him and watch for dehydration. *sigh* He's napping now, when he wakes I'll see about making him some soup and hope that helps. Not sure what else I can do...
__________________
Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
07-04-2011, 09:15 AM   #106
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi everyone. Danny's stool tests came back normal (standard culture, parasites, c-diff). The pancreatic enzymes he tried for 2 weeks did not help any. I plan to ask his GI for some imaging. Danny never had a lower abdominal ultrasound, CT or MRI.
07-04-2011, 01:30 PM   #107
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
Sorry your baby's not feeling good Melissa...is he doing any better today?
Make sure you spoil him with lots of popsicles, to help prevent dehydration of course!

Hi Dannysmom...wow! I can't believe after everything he has been through no one has done any imaging ! I sure hope they get on that soon. best of luck
07-04-2011, 04:14 PM   #108
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
@Melissa - Oh hun, I'm so sorry to hear about your little 'un.... That's a long time to have a problem like that and then to have it recur again. Is he getting over it yet? What do think about it?

@dannysmom - I agree, push for more testing. Matt's stool cultures came back negative as well. Good luck and let us know how you get on!

Dusty. xxx
07-04-2011, 06:39 PM   #109
lookame
Senior Member
 
lookame's Avatar
 
Join Date: Jun 2011
Location: Columbus, Ohio

My Support Groups:
He threw up twice yesturday then took a really long nap then it was like nothing ever happened. It worries me, especially since when he was a month old he had blood in his stool then when he was 2 he would fall on the floor grabbing his stomache and crying...not to mention that sewage diarreah. Since he doesn't have consistancy with his...well I guess symptoms I get pushed aside as an over worried mother. I have a GI app tomorrow so I figure I'll ask him about it. It may be something small like acid reflux or it could be something else but I don;t think it's just he throws up every now and then(specially since it happens more than just every now and then)

At any rate he's better today so thats good I'll let everyone know what the GI says tomorrow
07-04-2011, 06:42 PM   #110
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Hi everyone. Danny's stool tests came back normal (standard culture, parasites, c-diff). The pancreatic enzymes he tried for 2 weeks did not help any. I plan to ask his GI for some imaging. Danny never had a lower abdominal ultrasound, CT or MRI.
There's good and bad in that I suppose Jeanne! Normal tests are great but they don't explain the ongoing problem. I hope your GI sees the wisdom of further testing. Good luck!

Melissa, I agree with Dusty! There's nothing normal about daily vomiting for a month! I think it's time to use a little extra persuasion on his doctor to get the ball rolling.
07-05-2011, 10:28 AM   #111
lookame
Senior Member
 
lookame's Avatar
 
Join Date: Jun 2011
Location: Columbus, Ohio

My Support Groups:
I asked my GI about little guys random vometting. He said crohns doesn;t make you vomet unless your VERY sick and it's because you have an obstruction or blockage and your stomache is distended and whatnot, but he did agree that a month long of vommetting was to long and I should bring it up to his pediatrician.
07-05-2011, 04:27 PM   #112
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I have to say that I don't agree with your GI about you not vomiting unless you have an obstruction or blockage.

Both of my children had vomiting as a symptom of their Crohns and neither were obstructed or blocked. Well perhaps Sarah was in the end but that was after 18 months of being undiagnosed, the vomiting however was there from the outset.

My son had symptoms that were so mild that if his sister didn't have Crohns I wouldn't have even taken him to the doctor. The reason I became suspicious was he had a couple of random vomits one night, followed by a week of decreased appetite and then another night of random vomiting. That was it. He certainly was not very sick or obstructed.

Don't rule out vomiting as a symptom based on what the GI said.

Dusty. xxx
07-09-2011, 08:52 PM   #113
golanv
New Member
 
Join Date: Jul 2011
WOW you have been through a lot! I agree that you can not be over reactive when it comes to your child's health. Hindsight is 50-50. My son told me he had a bloody stool. I whisked him off to the doctor, who sent him to a specialist and we a had a dx of Crohn's. I was surprised but after my head stopped spinning and I began researching, then pieces started falling into place. I remember asking the doctor about seemingly unrelated symptons. Since my son had many, many allergies, all the symptons were considered allergic reactions. He was labeled "high risk allergic"......if I knew then what I know now, I would have asked for crohn's testing much, much earlier.
When he was dx, we were at Chapel Hill, NC and the medical care there was excellent.
Hope you get the tests and the results are good! Thinking of you!
07-20-2011, 02:34 AM   #114
b.lynnleon
New Member
 
Join Date: Jul 2011
Hi, I am not a parent, but a teen.

I have been undiagnosed for Crohn's or any IBD issues, although I have been told by various doctors that my symptoms all match the profile, but my biopsies from my 3 endoscopies/colonoscopies I have had this year were "inconclusive." I have been homebound for basically my entire junior year and have constant pain or nausea, etc. They found ulcers after my first scope and they found ulcers in multiple places like intestines, colon, and stomach. I have been passed from doctor to doctor before getting to a GI doctor who, after having my thrid scope, told me he can do nothing for me, but prescribe pain pills and referred me to a psychologist. How a psychologist can fix my nausea, occasional vomiting, and problems going to the restroom, I am not sure, but I am supposed to be looking forward to college and my senior year, but I am always worried about a sudden reaction to food or the wonderful "potty issues." I missed my junior prom and homecoming and feel like my "best years of my life" are being taken from me and doctors don't really care. If i don't have Crohns like my peditrician thinks I do, fine, but at least diagnose me with something and find out what I do have. :/

But reading your posts helps me feel like I am not the only one going through these problems and having issues being diagnosed, etc.

Also has anyone's child developed arthritis? I have deveolped in various places and my pediatrician tells me that is common with Crohns patients.

I wish my GI doctor at least tried to help me as much as my pediatrician has.

P.S. Sorry for my many writing mistakes, but talking about it aggravates me lol
07-20-2011, 05:46 AM   #115
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Welcome Lynn! So you have psychosomatic ulcers!! What a load of #%^+!!! I hope you find a GI soon who can see the truth! Meanwhile, visit Cat-a-tonic's Undiagnosed club. I think it's in the Support section of the forum. Good luck! I have a daughter one year younger than you. I'd raise hell if she were in your shoes!

Oh, and yes arthritis is very common with Crohns!
07-20-2011, 07:05 AM   #116
b.lynnleon
New Member
 
Join Date: Jul 2011
I think it's a load of bull too and my doctors are from the the children's hospital of Atlanta which also aggravates me because they are supposed to be a good hospital, but I guess not GI wise. Lol thanks I hope I find a better GI too and thanks for the referral to the forum. Plus I would be to if it my daughter well if I had one lol

Well dang because this arthritis sucks..lol try taking SATs writing and APs 3 timed essays...it's sucks
07-20-2011, 07:15 AM   #117
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi Lynn,
My son Danny is a bit younger than you (going into 9th grade) and missed his whole middle school experience (Halloween Dances, etc.) It stinks. And it stinks not having a diagnosis because almost everyone simply does not understand .. and too many think you are making a big deal about nothing. Danny also had joint pain ... but only occasionally now. I am so glad your pediatrician is supportive. Our is nice, but does not offer any real help or advice other than his first referral to a GI. Did you ever try prednisone? Your pediatrician can give you a week of it just to see if it makes you feel any better. It helps almost everyone with Crohn's. It made my son worse however - which is one of the biggest reasons why he is undiagnosed. Good luck!!
07-20-2011, 07:17 AM   #118
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Okay, I have no idea about your school system and terminology so how old are you?

I'm so sorry to hear you are going through all this crap...

We also have a teen forum here. It is password protected so if you would like to access it just PM me or one of the other mods.

I hope you can find some solid answers soon and get some decent relief! Keep pushing and getting second, third, fourth and however many opinions it takes!

Good luck hun,
Dusty. xxx
07-20-2011, 07:40 AM   #119
b.lynnleon
New Member
 
Join Date: Jul 2011
Aww I am sorry I can't imagine going through this when I was in middle school and yes I have had presiding many times and it does very little for anything and has sucky side affects, but as of now steroids are my bestfriend because since I got sick I cannot take any antibiotics. We tried all families...My pediatrician is awesome he actually also volunteers at the children's hospital of Atlanta an is over qualified, if you ask me, for his job. He has also gotten very aggravated with the other GI doctors, immunologist, etc.

@Dusty I am speaking about the writing portion of you SAT and the essay portion of an advanced placement test where you write 3 essays. My arthritis makes my hands cramp up and get almost jammed. And thank you for your support and I pmed a mid already for it but I might try yousince you seem to be on.
07-20-2011, 12:23 PM   #120
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Okay, I have no idea about your school system and terminology so how old are you?
In US we have school through 12th grade. Freshman is 9th grade, Sophmore is 10th, Junior 11th, Senior 12th. My daughter is the same grade as Lynn. Most kids going into their senior year are 17 or soon to be 17.
Reply

Thread Tools


All times are GMT -5. The time now is 05:24 AM.
Copyright 2006-2017 Crohnsforum.com