Wrong Diagnosis

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47Rosie
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/20/2007 2:40 AM (GMT -7)   
Hi All
Back after a long break from the site, I am now at my wits end, my daughter Molly had a small bowel study which confirmed small bowell crohns, but her colonoscopy and endoscopy were normal as was her white cell scan, she is still suffering with all the problems, constipation, diahreaha, knee pain, back pain, blood in stools, new to the list neck pain and the big favorite swollen mouth and 4 or 5 ulcers at a time on a regular basis. Of course the stomach pain goes without saying. She has just been constipated for 5 days and finally the laxitives she had taken have worked through a bit vilently though and she ended up with chronic diahreha (can never spell this). Doctors have given her Suphasaliszine but have said that in their opinion she does not have Crohns and the small bowell study showed swollen glands! anybody heard of this, anybody got any ideas on what we can do next, she has been like this for 3 years now and because I got really cross and questioned the docots they seem to be closing ranks!!
Any replys would be greatly appreciated.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 4/20/2007 8:13 AM (GMT -7)   

I'm so sorry your daughter has gone through such agony, and neither one of you have any answers.  If it's any consolation, I also have similar symptoms as your daughter; rheumy believes I am in the prodromal phase of IBD (ulcerative colitis or crohn's).  One GI doctor found ulcers in my colon, but says I do not have IBD.  Another GI doctor says I have ulcerative colitis at office visit, but after a normal colonoscopy, she says I have IBS (I had the colonoscopy after several months of several drugs that are known to heal colonic ulcers).  Finally going to a 3rd GI doctor next week, and we'll see.  Is your daughter getting treatment for any of her symptoms?  When my rheumy put me on enbrel for my arthritis symptoms (or humira for that matter), my lower GI symptoms disappeared.  They didn't resurface until I stopped taking enbrel a couple of months ago.  If the GI doctors are not giving you any answers, you might consider taking her to a pediatric rheumatologist.  He/she might recommend going the way I did--simply starting a tnf-inhibitor because they cover both inflammatory arthritis and IBD.  For me, they were very effective, especially with the GI stuff.  Best of luck, and I hope you get some answers soon.

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


47Rosie
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/23/2007 8:34 AM (GMT -7)   

Dear El

Thanks for your reply, Molly has been put on a two week course of Predinosine followed by 1 month supply of Sulphasilazine (think thats the right spelling)

Our Doctor has decided he is fed up with waiting for the Hospital Docs to decide to treat her symptoms. I am making a diary of the improvement and after 3 days it already seems to be working..fingers crossed.

Hope you are keeping weel at the moment, I am running The Great North Run (UK half marathon) in September in aid of the National Association for Crohns & Colitis, feels like a positive move.


Jemima Puddleduck
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 4/23/2007 10:43 AM (GMT -7)   
Dear Rosie,

Sorry to hear you're having so many problems with your daughter getting a correct diagnosis, the NHS can be so frustrating. I hope the prednisone & sulfazalasine do the trick and Molly soons begins to feel better.

I don't have any experience with Crohn's or Colitis, my son suffers from Rheumatoid Arthritis & Psoriatic Arthritis but it's been a long and winding road for him. A lot of trial & error. Nothing worse than having a child with a chronic disease. I've found a mine of information here and on other web sites...thank G for the internet! I know you just have to keep at it until you're satisfied with the treatment plan they come up with.

Good luck with your half-marathon in Sept...this great mine of information: The Internet, tells me it's in Newcastle :-)

-Jem

47Rosie
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/23/2007 10:57 AM (GMT -7)   

Great North Run is in Newcastle, did marathon yesterday wow that was hard

Hope your son is doing ok now

Thanks for your reply

Ax

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