Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Helen... thanks for updating us, hon ! Its such a shame, tho ! That poor little girl has been thru sooo much !! And I know how kids Hate blood tests !! Your whole family certainly needs a break, sweetie !! Wish there was a way I could give ya all one ! I'll keep prayin, tho, and hopin God will come thru for ya !! Try to take care of yourself. You wont be any good to anyone if you get into to bad of shape !! Take care, hon. And God Bless you all !! 8^) Took bre to the Hospital yesterday to see the Nephrologist. She still has blood and protein in her urine. She still has the aches and pains everyday, her hands swell She vomits at least four days out of seven. she tires easily, she can't even play like others without stopping to be able to breath and rest. Her panties are constantly getting damp. The Dr is thinking she has Neurogenic Bladder and looking into Nephrilis or Nephropathy, NOS , and they know she has a type of Myopathy, but don't know which one yet. Plus she has Severe Dyspraxia of Speech and fine motor skills. She is Five years old, to be six in three weeks!!!!! This isn't fair!!!! I would take these from her in a heartbeat and never think twice about it. We had to get more bloodwork done, several of the test are the same ones they done three months ago. The ANA one was positive then. By the looks of the test's they are trying to rule out the above ones and Lupus and liver disorders. :-( I'm sorry, but I think this household needs a break!!!!!!! I know I do!! I know it could be worse, but I'm feeling sorry for myself for a change. I feel sorry for BreBre. I'm Tired!!! I have been real ill, my heart is acting up, my breathing is acting up. My B/P lower number goes up to 127 daily, so it is very hard to even move about!!! I hurt like sin, I lost my Dog, I'm worn out... ( Sorry to be complaining, I'm done. Hugs to all Helen PS Does anyone know what (RET) blood test is taken for, can't find that one. Plus what is Nephrilis? Can't find that either! And NOS?????? Thanks! ~Now i'm done~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Helen, here is a definition for Nephritis that I found! Am so sorry that your are going thru what you are with your daughter! It must feel overwhelming! If venting and sharing with us helps ease things even a little, you just keep on doing it! My Prayers are with you and your little one constantly! birdsong > Took bre to the Hospital yesterday to see the Nephrologist. > She still has blood and protein in her urine. She still has the > aches and pains everyday, her hands swell She vomits at least four > days out of seven. she tires easily, she can't even play like others > without stopping to be able to breath and rest. Her panties are > constantly getting damp. The Dr is thinking she has Neurogenic > Bladder and looking into Nephrilis or Nephropathy, NOS , and they > know she has a type of Myopathy, but don't know which one yet. Plus > she has Severe Dyspraxia of Speech and fine motor skills. She is > Five years old, to be six in three weeks!!!!! This isn't > fair!!!! I would take these from her in a heartbeat and never > think twice about it. We had to get more bloodwork done, several > of the test are the same ones they done three months ago. The ANA > one was positive then. By the looks of the test's they are trying to > rule out the above ones and Lupus and liver disorders. :- ( > I'm sorry, but I think this household needs a break!!!!!!! I know > I do!! I know it could be worse, but I'm feeling sorry for myself > for a change. I feel sorry for BreBre. I'm Tired!!! I have been > real ill, my heart is acting up, my breathing is acting up. My B/P > lower number goes up to 127 daily, so it is very hard to even move > about!!! I hurt like sin, I lost my Dog, I'm worn out... > ( Sorry to be complaining, I'm done. > Hugs to all > Helen > PS Does anyone know what (RET) blood test is taken for, can't find > that one. Plus what is Nephrilis? Can't find that either! And > NOS?????? Thanks! ~Now i'm done~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Helen, so sorry, i am having bad fibro fog, here is the definition I mentioned, forgot to paste before hiting send!:-( birdsong Nephritis: Inflammation of the kidney. Nephritis can be due to a variety of causes, including kidney disease, allergies, and infection. Treatment depends on the cause. - In cfidsfms-friends@y..., angelbear1129@a... wrote: > Took bre to the Hospital yesterday to see the Nephrologist. > She still has blood and protein in her urine. She still has the > aches and pains everyday, her hands swell She vomits at least four > days out of seven. she tires easily, she can't even play like others > without stopping to be able to breath and rest. Her panties are > constantly getting damp. The Dr is thinking she has Neurogenic > Bladder and looking into Nephrilis or Nephropathy, NOS , and they > know she has a type of Myopathy, but don't know which one yet. Plus > she has Severe Dyspraxia of Speech and fine motor skills. She is > Five years old, to be six in three weeks!!!!! This isn't > fair!!!! I would take these from her in a heartbeat and never > think twice about it. We had to get more bloodwork done, several > of the test are the same ones they done three months ago. The ANA > one was positive then. By the looks of the test's they are trying to > rule out the above ones and Lupus and liver disorders. :- ( > I'm sorry, but I think this household needs a break!!!!!!! I know > I do!! I know it could be worse, but I'm feeling sorry for myself > for a change. I feel sorry for BreBre. I'm Tired!!! I have been > real ill, my heart is acting up, my breathing is acting up. My B/P > lower number goes up to 127 daily, so it is very hard to even move > about!!! I hurt like sin, I lost my Dog, I'm worn out... > ( Sorry to be complaining, I'm done. > Hugs to all > Helen > PS Does anyone know what (RET) blood test is taken for, can't find > that one. Plus what is Nephrilis? Can't find that either! And > NOS?????? Thanks! ~Now i'm done~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2001 Report Share Posted May 25, 2001 Nephritis: Inflammation of the kidney>> Well guess I will jump in here as I deal with this due to my lupus. With a ANA positive I would suggest taking her to a Rummy as they deal with this stuff mostly. At her age it is Rare that Lupus show's up that earlier mostly in teens and thru the late 20's to be DX. From hearing about her aches and etc. it sounds allot like Lupus. Lupus does infect the kidneys not always but I think about 20%. If you want more info email me off list and I will send it to you. Cyber Hugs,Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2001 Report Share Posted May 25, 2001 The Nephrologist is the one that is doing all the testing as he is the one watching her kidneys. We don't have a Pediatric Rheumotologist in our area. But last year we had one come in to the hospital from Cleveland, as he comes once a month, and he was a jerk! He ran no test's just looked at her, moved her joints around and said she had Hypermobility. Took her to a pediatric Rheumy in Michigan, the beginning of this year and she also was a jerk! Again no testing, just had her walk down the hallway, did say her hands looked swollen. But she was fine. I asked her about Lupus and Fibro and her response was Children don't get Lupus, and Fibro was a made up disease! The kidney Dr. was very upset at both of these Dr's., so he has been trying to keep up on it all the best he knows how. We have the head Dr. of the Dept.. Her Neurologist is keeping on top of the Myopathy thing, but now it is a waiting game. I will gladly take any info you have to send me. angelbear1129@... Thank-You Very Much ((( Many Hugs ))) Helen > Nephritis: Inflammation of the kidney>> > > Well guess I will jump in here as I deal with this due to my lupus. With a ANA positive I would suggest taking her to a Rummy as they deal with this stuff mostly. At her age it is Rare that Lupus show's up that earlier mostly in teens and thru the late 20's to be DX. > >From hearing about her aches and etc. it sounds allot like Lupus. Lupus does infect the kidneys not always but I think about 20%. > If you want more info email me off list and I will send it to you. > Cyber Hugs, > Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2001 Report Share Posted May 25, 2001 Helen, so sorry about all that is going on with BreBre-I deal with sick kids a lot and they are always so amazing the way they deal with everything they go through. The NOS just means "not otherwise specified". Some things have several catagories and when it is not broken down they use this. Good luck and will keep all of you in our prayers. MJ / Mom to Will 1/6/94 and wife to Mark 5/19/90 Back to work as RN BSN CCRN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 HELEN I AM SO SORRY TO HEAR THAT BRE IS DOING SO BAD. YES IT IS TIME YOUR FAMILY HAD A BREAK FROM ALL THE PAIN AND ILLNESS YOU HAVE BEEN GOING THROUGH THIS LAST YEAR. BRE HAS BEEN SO SICK AND SHE IS JUST A SMALL CHILD, TOO SMALL TO HAVE TO GO THROUGH ALL THIS. KNOW THAT YOU ARE ALL IN MY PRAYERS AND HAVE MY LOVE. IF YOU NEED ANYTHING JUST LET ME KNOW AND I WILL DO ANYTHING I CAN. I AM WITH YOU I WOULD GLADLY TAKE HER PAIN AND NEVER COMPLAIN BUT WE CAN'T. BUT WE CAN PRAY AND ASK GOD TO EASE HER PAIN AND GIVE HER THE STRENGTH SHE WILL NEED TO ENDURE ALL SHE WILL HAVE TO GO THROUGH AND PRAY SHE GETS WONDERFUL CARING DRS WHO WILL HELP EASE HER PAIN WHILE THEY ARE FINDING OUT WHAT WILL EITHER CURE HER OR KEEP HER ABLE TO BE AS NORMAL AS SHE CAN. GIVE HER A BIG HUG AND KISS FOR ME AND LET HER KNOW WE CARE. SOME ONE IS GOING TO HAVE TO START GIVING YOU A BREAK AND HELPING OUT LUV YOU CAN NOT KEEP GOING THE WAY YOU ARE OR YOU WILL BE IN THE HOSPITAL YOURSELF OR HAVE A MASSIVE HEART ATTACK AND THAT IS NOT GOING TO BE GOOD FOR ANY OF YOU ESPECIALLY THE GIRLS YOU ARE THEIR ROCK AND THE GLUE THAT HOLDS THEM TOGETHER SO PLEASE REST AND TAKE CARE OF HELEN TOO. LUV U JO http://community.webtv.net/jowaca/JOSFAVORITEPICTURES Took bre to the Hospital yesterday to see the Nephrologist. She still has blood and protein in her urine. She still has the aches and pains everyday, her hands swell She vomits at least four days out of seven. she tires easily, she can't even play like others without stopping to be able to breath and rest. Her panties are constantly getting damp. The Dr is thinking she has Neurogenic Bladder and looking into Nephrilis or Nephropathy, NOS , and they know she has a type of Myopathy, but don't know which one yet. Plus she has Severe Dyspraxia of Speech and fine motor skills. She is Five years old, to be six in three weeks!!!!! This isn't fair!!!! I would take these from her in a heartbeat and never think twice about it. We had to get more bloodwork done, several of the test are the same ones they done three months ago. The ANA one was positive then. By the looks of the test's they are trying to rule out the above ones and Lupus and liver disorders. :-( I'm sorry, but I think this household needs a break!!!!!!! I know I do!! I know it could be worse, but I'm feeling sorry for myself for a change. I feel sorry for BreBre. I'm Tired!!! I have been real ill, my heart is acting up, my breathing is acting up. My B/P lower number goes up to 127 daily, so it is very hard to even move about!!! I hurt like sin, I lost my Dog, I'm worn out... ( Sorry to be complaining, I'm done. Hugs to all Helen PS Does anyone know what (RET) blood test is taken for, can't find that one. Plus what is Nephrilis? Can't find that either! And NOS?????? Thanks! ~Now i'm done~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 Helen.. listen to Jo, hon ! She is sooo right about you takin care of yourself !!! 8^) HELEN I AM SO SORRY TO HEAR THAT BRE IS DOING SO BAD. YES IT IS TIME YOUR FAMILY HAD A BREAK FROM ALL THE PAIN AND ILLNESS YOU HAVE BEEN GOING THROUGH THIS LAST YEAR. BRE HAS BEEN SO SICK AND SHE IS JUST A SMALL CHILD, TOO SMALL TO HAVE TO GO THROUGH ALL THIS. KNOW THAT YOU ARE ALL IN MY PRAYERS AND HAVE MY LOVE. IF YOU NEED ANYTHING JUST LET ME KNOW AND I WILL DO ANYTHING I CAN. I AM WITH YOU I WOULD GLADLY TAKE HER PAIN AND NEVER COMPLAIN BUT WE CAN'T. BUT WE CAN PRAY AND ASK GOD TO EASE HER PAIN AND GIVE HER THE STRENGTH SHE WILL NEED TO ENDURE ALL SHE WILL HAVE TO GO THROUGH AND PRAY SHE GETS WONDERFUL CARING DRS WHO WILL HELP EASE HER PAIN WHILE THEY ARE FINDING OUT WHAT WILL EITHER CURE HER OR KEEP HER ABLE TO BE AS NORMAL AS SHE CAN. GIVE HER A BIG HUG AND KISS FOR ME AND LET HER KNOW WE CARE. SOME ONE IS GOING TO HAVE TO START GIVING YOU A BREAK AND HELPING OUT LUV YOU CAN NOT KEEP GOING THE WAY YOU ARE OR YOU WILL BE IN THE HOSPITAL YOURSELF OR HAVE A MASSIVE HEART ATTACK AND THAT IS NOT GOING TO BE GOOD FOR ANY OF YOU ESPECIALLY THE GIRLS YOU ARE THEIR ROCK AND THE GLUE THAT HOLDS THEM TOGETHER SO PLEASE REST AND TAKE CARE OF HELEN TOO. LUV U JO http://community.webtv.net/jowaca/JOSFAVORITEPICTURES Quote Link to comment Share on other sites More sharing options...
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