Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Tracey, I am sure that this is a huge shock to you. Please know that I am thinking of you both. I have never heard of this, so please let us all know what you find out. I'll call you later, after you have time to process. HRH > just an update on lexi. last week we saw a gi doc at texas children's due > to the urging of her pediatrician. as most of you know, lexi has always > been small and weight gain has been an issue for her. she has actually > lost some weight in the last several months which is what prompted us to > the specialist. he did basic bloodwork and urine analysis along with a > test for celiac disease. > i spoke with him this morning about the results. in turn, i received a > call from a renal doc at tch who we will be seeing next week. lexi has > been diagnosed with rta ( renal tubular acidosis) based on the test, it > cannot be determined if she has type 1,2 or 4, but more testing will be > done to determine this. right now they are starting her on a drug called > polycitra which will hopefully help her kidneys get rid of theacid. > basically that is what is happening...her kidneys aren't getting the acid > out of her system. i don't know - i know this is kind of rambling, but > this was all a shock - i would have never guessed something going on with > the kidneys. i will take time to process and get to reading. good news is > her spine is still doing great! > > tracey > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Tracey, I am sure that this is a huge shock to you. Please know that I am thinking of you both. I have never heard of this, so please let us all know what you find out. I'll call you later, after you have time to process. HRH > just an update on lexi. last week we saw a gi doc at texas children's due > to the urging of her pediatrician. as most of you know, lexi has always > been small and weight gain has been an issue for her. she has actually > lost some weight in the last several months which is what prompted us to > the specialist. he did basic bloodwork and urine analysis along with a > test for celiac disease. > i spoke with him this morning about the results. in turn, i received a > call from a renal doc at tch who we will be seeing next week. lexi has > been diagnosed with rta ( renal tubular acidosis) based on the test, it > cannot be determined if she has type 1,2 or 4, but more testing will be > done to determine this. right now they are starting her on a drug called > polycitra which will hopefully help her kidneys get rid of theacid. > basically that is what is happening...her kidneys aren't getting the acid > out of her system. i don't know - i know this is kind of rambling, but > this was all a shock - i would have never guessed something going on with > the kidneys. i will take time to process and get to reading. good news is > her spine is still doing great! > > tracey > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Tracey, I am sure that this is a huge shock to you. Please know that I am thinking of you both. I have never heard of this, so please let us all know what you find out. I'll call you later, after you have time to process. HRH > just an update on lexi. last week we saw a gi doc at texas children's due > to the urging of her pediatrician. as most of you know, lexi has always > been small and weight gain has been an issue for her. she has actually > lost some weight in the last several months which is what prompted us to > the specialist. he did basic bloodwork and urine analysis along with a > test for celiac disease. > i spoke with him this morning about the results. in turn, i received a > call from a renal doc at tch who we will be seeing next week. lexi has > been diagnosed with rta ( renal tubular acidosis) based on the test, it > cannot be determined if she has type 1,2 or 4, but more testing will be > done to determine this. right now they are starting her on a drug called > polycitra which will hopefully help her kidneys get rid of theacid. > basically that is what is happening...her kidneys aren't getting the acid > out of her system. i don't know - i know this is kind of rambling, but > this was all a shock - i would have never guessed something going on with > the kidneys. i will take time to process and get to reading. good news is > her spine is still doing great! > > tracey > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Tracey, I am sorry you have to worry about this, too, and our thoughts are with you. It sounds as if you are getting excellent care and that Lexi is getting what she needs. Do not hesitate to call or write for any reason. Abigail --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Tracey, I am sorry you have to worry about this, too, and our thoughts are with you. It sounds as if you are getting excellent care and that Lexi is getting what she needs. Do not hesitate to call or write for any reason. Abigail --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Tracey, I have never heard of this, but know that my thoughts are with you and Lexi. I hope the meds can help with getting rid of the acid. She's a tough cookie and I am sure she can handle what is thrown her way. Glad to hear that her spine is doing so well. Sending you both big hugs!!! Noelle (12-2-01) Ian (8-15-04) update on lexi just an update on lexi. last week we saw a gi doc at texas children's due to the urging of her pediatrician. as most of you know, lexi has always been small and weight gain has been an issue for her. she has actually lost some weight in the last several months which is what prompted us to the specialist. he did basic bloodwork and urine analysis along with a test for celiac disease. i spoke with him this morning about the results. in turn, i received a call from a renal doc at tch who we will be seeing next week. lexi has been diagnosed with rta ( renal tubular acidosis) based on the test, it cannot be determined if she has type 1,2 or 4, but more testing will be done to determine this. right now they are starting her on a drug called polycitra which will hopefully help her kidneys get rid of theacid. basically that is what is happening...her kidneys aren't getting the acid out of her system. i don't know - i know this is kind of rambling, but this was all a shock - i would have never guessed something going on with the kidneys. i will take time to process and get to reading. good news is her spine is still doing great! tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Tracey, I have never heard of this, but know that my thoughts are with you and Lexi. I hope the meds can help with getting rid of the acid. She's a tough cookie and I am sure she can handle what is thrown her way. Glad to hear that her spine is doing so well. Sending you both big hugs!!! Noelle (12-2-01) Ian (8-15-04) update on lexi just an update on lexi. last week we saw a gi doc at texas children's due to the urging of her pediatrician. as most of you know, lexi has always been small and weight gain has been an issue for her. she has actually lost some weight in the last several months which is what prompted us to the specialist. he did basic bloodwork and urine analysis along with a test for celiac disease. i spoke with him this morning about the results. in turn, i received a call from a renal doc at tch who we will be seeing next week. lexi has been diagnosed with rta ( renal tubular acidosis) based on the test, it cannot be determined if she has type 1,2 or 4, but more testing will be done to determine this. right now they are starting her on a drug called polycitra which will hopefully help her kidneys get rid of theacid. basically that is what is happening...her kidneys aren't getting the acid out of her system. i don't know - i know this is kind of rambling, but this was all a shock - i would have never guessed something going on with the kidneys. i will take time to process and get to reading. good news is her spine is still doing great! tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Tracey, I have never heard of this, but know that my thoughts are with you and Lexi. I hope the meds can help with getting rid of the acid. She's a tough cookie and I am sure she can handle what is thrown her way. Glad to hear that her spine is doing so well. Sending you both big hugs!!! Noelle (12-2-01) Ian (8-15-04) update on lexi just an update on lexi. last week we saw a gi doc at texas children's due to the urging of her pediatrician. as most of you know, lexi has always been small and weight gain has been an issue for her. she has actually lost some weight in the last several months which is what prompted us to the specialist. he did basic bloodwork and urine analysis along with a test for celiac disease. i spoke with him this morning about the results. in turn, i received a call from a renal doc at tch who we will be seeing next week. lexi has been diagnosed with rta ( renal tubular acidosis) based on the test, it cannot be determined if she has type 1,2 or 4, but more testing will be done to determine this. right now they are starting her on a drug called polycitra which will hopefully help her kidneys get rid of theacid. basically that is what is happening...her kidneys aren't getting the acid out of her system. i don't know - i know this is kind of rambling, but this was all a shock - i would have never guessed something going on with the kidneys. i will take time to process and get to reading. good news is her spine is still doing great! tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 Hello all, I haven't posted in a while - mostly a lurker because we are so terrible busy! Since I finally have a moment on the computer I thought I would send a quick recap for new families to this listserv and an update on the past few months. Lexi is 9 and was dx'd with JRA by the wonderful Dr. Hollister at Children's about 5 years ago. She was then soon after diag. w hypothyroidism, and eventually found some relief for the JRA with Enbrel, periodic naproxyn, and then thyroid meds. She had her ups and downs through the years with lots of illness (swine flu, flares, fungal infections in her throat d/t inhaled steroids for asthma, etc.) For the past year she has had trouble with what we thought was constipation - she would spend sometimes 40 min. in the bathroom both at home and at school several times a day and in the eves. She occasionally complained of her tummy hurting, but nothing that was emergent, so we stayed the course. We began giving her Miralax last Spring/.Summer, and then in about Aug. I began noticing that she was having blood in her stool, and by Sept. I noticed a few large blood clots in the toilet in the eves. The discomfort that she reported never got worse, so her ped increased her dose of Miralax and said to start giving her mineral oil. The blood decreased temporarily but when the oil was stopped, the blood increased again. After battling the ped I finally got her into a GI doc who, upon exam, said they felt something was wrong. She had to have a colonoscopy in mid-Dec., and they found bleeding ulcers through the first third of her colon. Now, after biopsies, 4 or 5 sets of blood draws and tests, an upper GI and consult with the GI clinic at Chidlresn' they have determined that she has ulcerative colitis that looks as though it has been going on for some time! (Thanks Kaiser Permanente for missing this!!!!!!) The GI dept has her on an oral and rectal steroid, prevacid to help alleviate the side effects of the steroid, and a pain med for temporary use. They consulted with Dr. Hollister and they have decided to put Lexi on Remicade infusions which will hopefully take care of both her JRA (and take the place of Enbrel) and the ulcerative colitis. This scares me because she is VERY needle phobic - she was already in the past and now with everything she has had to endure lately she has become even more needle phobic! They assure me that by working with a psychologist and child life dept at Childrens' they can help her through these infusions, but I am still worried. Anyone had any luck with specific ways to help a child deal with stuff like this? We put the lidocaine on her arm before the last 2 blood draws/shots and it's not helped from the panic standpoint. Anyone else have a young child on Remicade and how have they responded? Pros/ Cons? I know you all have been a wealth of knowledge in the past and I am hopeful that some families will have some good info for us. Thanks!!!! and Lexi in Arvada Quote Link to comment Share on other sites More sharing options...
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