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09-19-2012, 12:39 AM   #1
mreyn
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Symptoms

I'm trying really hard to get a dr to look at ALL my sons symptoms.. he had some issues before being diagnosed with a scope that wasn't taken into consideration like blood in the urine, purple spots on his chest/back two or three different occasions, he would get really sick for about a day with vomiting like a 24 hour bug on a few occasions, vomiting while eating, after eating or after laying down, low grade fevers in the evenings with extreme fatigue.. etc.

Maybe they all lead to the same thing... who knows.
09-19-2012, 02:22 AM   #2
Jennifer
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Was trying to look at your past posts to find his diagnosis yet I didn't see his current treatment plan. I saw you mention that he has Crohn's located in his ileum but no specifics. Blood in urine could be many things but first thing that comes to mind is a fistula. Vomiting on a regular basis could mean an infection and vomiting while or after eating could mean a stricture. Crohn's can cause skin problems as well like you mentioned and fatigue. The low grade fevers may also point to an infection (which still brings a fistula to mind). I had flu like symptoms when I was a kid during a flare.

Could you maybe share all the information the GI found and what his current treatment plan is along with what tests have been done already besides just the colonoscopy?

Seems odd for there to still be this much vomiting since you had been posting for a while now about his current symptoms. Sounds like whatever they decided to try treating him with isn't working. Best to call his GI about these symptoms too and if you can't get the vomiting under control then it may be best to go to the ER (may be an obstruction he's dealing with).
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
09-19-2012, 10:00 AM   #3
Sascot
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It is frustrating when docs don't take all things into consideration. Mom's instincts are usually quite accurate, so just keep pushing until you find a doctor willing to listen!
09-19-2012, 10:27 AM   #4
mreyn
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He had upper and lower gi scopes and about 20 biopsies. All biopsies showed no signs of crohns.. but this was noted: the biopsies of the gastric body and antrum show mild to moderate expansion of the lamina propria due to lymphoplasmacytic infiltrate. No active inflammation or infectious organisms see. the remainer are normal.

The ileum showed bumps (ulcers) and was inflamed,etc

He also had barium xray, tons of blood drawn , etc. He had a round of the steroid targeted to the gut, he had a round of flagyl, and he's been on pentasa.

He can go 2 - 3 weeks or so without getting sick , but his eyes will get really dark around them, he'll get a headache, and he'll start throwing up.. sometimes just one day, sometimes more. I think it may be food related, but I just want to make sure they're not missing something. We have a new gi who I left some paperwork with, and he only wanted a few pages and just glanced over it quickly and said :yeah, its crohns, and he'll never be well, medicine and maybe surgeries his whole life. .. I won't say what I felt like doing in that moment, my 11 year old son was right there and it left him feeling completely hopeless. I've been trying to fix that ever since.
09-19-2012, 10:52 AM   #5
crohnsinct
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Seriously?! I can't believe that doc! Are you still with him? I know there aren't a lot of choices in some communities but geez he must have skipped the bedside manner class.
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Daughter T dx 1/2/15 at age 11
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09-19-2012, 11:01 AM   #6
mreyn
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We are. We've only been there once. We previously had to drive over 2 hours to Childrens hospital where he was diagnosed and after a round of steroids that did nothing, they wanted to put him on autoimmune medicine the rest of his life. We were told that was the closest gi for kids, but I found one only about an hour + from home and they went on the previous diagnosis just looking at the pic of the ileum from his scope procedure. I have seen some other things that are mistaken for crohns but that include the purple spots he had and the blood in the urine. And my mom has a client whose son was MIS diagnosed with crohns.. After he had his gallbladder taken out, he's been fine since... his main symptom was like my sons, vomiting.
09-19-2012, 11:27 AM   #7
my little penguin
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Here is the thing many things can be going on period and if you don't trust your doc well that isn't going to help.
Constant vomiting could be an EGID disorder.
It can be located any where in the Gi tract.
Did they count the number of EOS in his Gi tract ?

I think you need a true second opinion where all his records are reviewed.
And you feel like you can trust what they are saying.
As far as meds most kids here are on at least an immunosuppressant of some sort.
Not all a few have been able to only use an ASA or EN but that is rare in children since the younger the dx the more severe the disease course tends to be unless you get it under control quickly.
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09-19-2012, 01:40 PM   #8
mreyn
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Eosinophils 3.3
Eosinophils , absolute .34

showed within ranges
09-19-2012, 02:01 PM   #9
Jennifer
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Finding a new and better GI is the main priority. My first GI was 4 hours away. You don't see the GI everyday so it really isn't a bad idea to branch out more. I was also taking 6MP when I was a kid and it did help me for a while. In my opinion you might want to try it and see if he does any better on it. Reducing his suffering is the most important thing.
09-19-2012, 02:02 PM   #10
my little penguin
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Not blood tests but from biopsy slides there should be lots of numbers for lots of locations
09-19-2012, 02:36 PM   #11
mreyn
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They didn't give me those.
09-19-2012, 08:36 PM   #12
Tesscorm
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That GI sounds horrible!!! I'm so sorry that your son had to hear that conversation. I also think you must find a new GI! As Crabby said, you won't be seeing the GI very often, and even less once he's on the right treatment. There are a few GIs listed on the Doctor Directory in Texas, perhaps one is a ped GI and an acceptable distance. Here is the link:

http://www.crohnsforum.com/doctor/us/tx/

Also, you can go to www.ratemds.com and you can select the specialty, city, etc and get a rating on the doctors. I can't vouch for the accuracy of the reviews, as anyone can write them, but it may be a starting point...

Good luck!
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Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-21-2012, 06:37 AM   #13
DustyKat
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I hope you are able to find a GI that treats you both with respect and dignity, it's the very least you deserve hun.

Since you have doubts as to his diagnosis are you keeping a diary? If not it may well be worth your while, it will help keep things in order and you will be batter able to track symptoms and trends. Have a look at the suggestions we have in the wiki...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck and keep us posted with how you are getting on.

Dusty. xxx
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