Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 >Hi , Sorry for not getting back you sooner... It sounds like you have some very good doctors looking after Tyler. Taking him to the Mayo Clinic for a second opinion would be a good idea. I suffered with UC for ten years and what I can tell you that it flares up anytime and for no apparent reason (I think it's stress related but that's just my theory). If Tyler's bloodwork is normal, there is no blood in his stools and his bowel movements are regular, I'd be looking for another cause. As for the PSC diagnosis, it should be confirmed with a biopsy and an ERCP. I have a friend who had a rare blood clotting condition (I forget the name for it) in his liver and was incorrectly diagnosed with PSC. His blood values i.e. bili were much less indicative of liver disease than mine and yet his liver was failing. I don't think you're over-reacting but I would suggest that you keep doing your reading so that you can understand as much as possible as the tests continue. All the best to Tyler. > > > > Hi Jeff ... That is nice to know that you are doing very well. Our > 9 year old son, Tyler, was diagnosed in January w/PSC.... It happened a few > weeks after his 1st colonoscopy when they diagnosed the UC. He ended up in > the hospital with triple antibiotics a week after the colonoscopy but then > they said his liver was fine. A couple of weeks later, he was complaining > of this ache/dull pain in his right side. He was in soo much pain day in > and day out. The team of doctors then kept saying it was the colitis. We > knew it was different then the UC pain and thought perhaps they did > something to him during the colonoscopy as everything went down hill after > it. We saw a new team of doctors and out of nowhere, his liver enzymes > were drastically elevated.with a GGT in the high 900's....Urso was started > and the pain and liver functions tests/GGT stabilized. His liver function > tests are fine now, just slightly off from time to time but his Sed rate > remains 4 times higher then it should be and they attribute this to the UC > and are wanting to do a colonectomy as he struggles with anemia/low > hemoglobins too and osteoporosis (from the year of steroids which he is off > now). He is doing Remicade now and as far as the bloody stools , they are > gone. One time a day he goes a normal one. so, we do not believe that the > inflammation (high sed rate) is truly the UC. He continues to be fatigued, > sometimes very pale and we feel he is yellow but the bilirubin levels have > been fine. It is kind of like, he is just getting by but gives it his > all....Do you think they are missing something? Could the inflammation be > the liver without the liver blood tests indicating so? A couple of times > his CA-19 tumor marker was over 100 and children's hospital was not too > concerned about it as they say it goes hand in hand with UC...The liver > doctor we see Dr. Whittington in Chicago at Children's Hospital is > suppose to be one of the best in the nation. but, we are still thinking of > going to Mayo in January but I am hesitant to put him thru all the tests > again at Mayo as he has been thru so much. We are thinking they can do a > head to toe full battery check before we decide to do a > colonectomy......Also, if in Jan/Feb he was so very ill with the PSC, > started URso and now it appears quiet, how do you kow when it will spark > again?. Could it be and the doctors are missing it? I was doing some > research about Adrenal dysfunction and my doctor dismissed it stating we > are reading too much....Anything you can tell me, help me with would be > great. We are devastated because he is not normal health wise but is such > a trooper. > > thanks in advance for any suggestions.. > > Ostos > (tyler age 9, McKenna age 5) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 It is interesting that you say that about your friend. Tyler's liver tests were drastically elevated this past Jan/Feb. with a GGT in the 900's but his bilirubin level has yet to be abnormal. He had the severe abdominal pain was diagnosed by ERCP with intrahepatci PSC and takes Urso which eliminated the pain. Perhaps, they misdiagnosed? The blood count that is still off now is the Sed rate elevated 4 times higher then normal and CA reactive protein which indicates inflammation and this has been going on forever. But he is going to the bathroom normal better then ever . So, I am very hesitant to move forward with a colonectomy as I think it may be another cause. They just tested him for Lupus and we are waiting to hear back and the doctor thinks it may be Rheumatoid arthritis. We will see as we want to rule out everything before we take his colon and then find out later (Oops, it was something else too). No doubt he has colitis but he is not having diarrhea or blood and is off steroids and the 6MP now only being treated with Remicade... I read some info on Adrenal dysfunction and he has many of the symptoms of this too? Any other comments info welcome and this has been draining....Just want him better. The poor kids legs hurt his so bad and he can barely keep up with is friends because of joint pain. Again, they say it is from the colitis but I really believe there is another under lying cause since his hemoglobins have gone up and he is going normal bathroom..... Thanks all for any info you may have or suggestions.... Ostos (mother to Tyler age 10 and McKenna ahe 5) Quote Link to comment Share on other sites More sharing options...
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