Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Connie.... I am sorry but I am drawing a complete blank....are you rather new to the group.... there are so many people here now that it is hard to keep track of everyone....usually moms I do a better job of but .....the mind is not working right now.... anyways...I am a mom on here....my son is now 20 but have been at all of this for awhile...since he was 9..... hope to be able to talk to you in the future... the next week we will be away...but hopefully when I get back I will see something from you.... even if it is to tell me that we have talked before....lol....that would not surprise me at all..... take care Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Hi Luanne, I am new to the group. My son was diagnosed about a month ago. It's so good to know there is someone else is in the same boat. I have sooo many questions I don't know where to start. First I was wondering what doseage of meds your son has been on. Devin is taking 50mg of Imuran and 40mg of Prednisone(twice a day). He has been on these for one month. His labs have gotten much better, but he has gained almost 20lbs, which is alot for him. He has gotten severe acne, has trouble sleeping and still feels almost as bad as he did before meds. We have an appt. with his GI on Tues. hoping to get the results from his BX. Maybe we can lower his meds then. Also how did your son do with school? PE in particular ? I'd like to take him out for the rest of high school..all they do is run two miles every day. I would rather he take a class that can help him. Enough for now. Waiting to hear from you... Connie..Devin's mom Re: [ ] Connie...Devin's mom Hi Connie....I am sorry but I am drawing a complete blank....are you rather new to the group....there are so many people here now that it is hard to keep track of everyone....usually moms I do a better job of but .....the mind is not working right now....anyways...I am a mom on here....my son is now 20 but have been at all of this for awhile...since he was 9.....hope to be able to talk to you in the future...the next week we will be away...but hopefully when I get back I will see something from you....even if it is to tell me that we have talked before....lol....that would not surprise me at all.....take careLuanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Luanne, I wanted to clarify....Prednisone is 20mg twice a day. Connie Re: [ ] Connie...Devin's mom Hi Connie....I am sorry but I am drawing a complete blank....are you rather new to the group....there are so many people here now that it is hard to keep track of everyone....usually moms I do a better job of but .....the mind is not working right now....anyways...I am a mom on here....my son is now 20 but have been at all of this for awhile...since he was 9.....hope to be able to talk to you in the future...the next week we will be away...but hopefully when I get back I will see something from you....even if it is to tell me that we have talked before....lol....that would not surprise me at all.....take careLuanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Connie, I am a mother of a girl who was diagnosed with AIH when she was in the 6th grade. She is now 21. She went into remission for about 5 years but had a relapse about 6 months ago. The best suggestion I can give you is to let your child do what he feels capable of doing. My daughter played soccer in High School and graduated with honors. She is currently going to College. She also works a full time job. Yes she is tired but I won't slow down. I worry but she is right when she says you only live once. I have to go since I am at work. Hope to hear how he is doing. GG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Thanks so much ..that do give me hope. Devin is home sick from school today, but he made it mon. -thurs. We will take it one day at a time. When your daughter was in remission was she off all meds? The pred. is so hard on Dev I hope he can be off someday. Connie- Devins mom Re: [ ] Connie...Devin's mom > Hi Connie, > > I am a mother of a girl who was diagnosed with AIH when she was in the 6th grade. She is now 21. She went into remission for about 5 years but had a relapse about 6 months ago. The best suggestion I can give you is to let your child do what he feels capable of doing. My daughter played soccer in High School and graduated with honors. She is currently going to College. She also works a full time job. Yes she is tired but I won't slow down. I worry but she is right when she says you only live once. I have to go since I am at work. Hope to hear how he is doing. > GG > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Hi, That is such good news for me. Did she also have trouble with the pred. ? My boy looks so different...kids at school are asking what is wrong with his face. He seems to be handling things pretty well but it's hard for me, I worry. It's tough be a teenager without all this. Where in California are you ?? We are in Napa. Love, Connie- Devins mom Re: [ ] Connie...Devin's mom Connie, Yes she was off all medications. She had actually taken herself off the medicine before she was told to. My daughter is extremely stubborn and felt she didn't need them any longer. She ended up being right but she scared me!!! (not a smart thing to do). She went away to Purdue University in Indiana (we live in California) and worked a near full time job. Her grades suffered because she wasn't taking care of herself and I'm sure that is why she relapsed. She came back home to finish school. She's now older and wiser (or as wise as a 21 year old can be) and knows how important it is to take care of herself. She has never thought of herself as being a "sick person' and I have never treated her as one. She was furious with me when I told her Soccer Coach in High School that she had a liver disease! Just got to let them do what they have to do. I know how you feel but you will get the strength and do just fine! GG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 Connie, My daughter never complained about looking different and always seemed to have friends. She has always had a good sense of herself. But she told me when she was older that some of the kids would say she was fat but she refused to let it get to her. She was originally put on a high dosage (can't remember but I think it was either 30 or 40 mg). She responded quickly and her maintenance dosage was just 5mg prednisone and 75mg Imuran. Her Doctor wanted to make sure she kept her weight down. Sports helped keep her somewhat fit and feeling good about herself. She was put on Prednisone this time but her skin breaking out got the most comments but her weight didn't get too bad. Her Doctor now has her on straight Imuran which makes her a little nauseated but she says it is better than the Prednisone. It is amazing what kids can deal with - it's usually us parents who fall apart. I live in Torrance (sunny Southern California). Speaking of sunny - my daughter does get some joint pains and cold can make it act up. This weather is good for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Connie.... Sorry it has taken me sooo long to get back to you....my email box was full and took awhile to get things straightened out....still way more mail that I haven't gotten to but I am at least finding some time to start working at it... I am glad that at least I was right and that you are new.....thought I was loosing my mind.... I will try to get to some of your questions and help you out here....but I do want you to keep in mind that Ty has many auto-immune diseases so things have been rather tough on him....but I do talk to other moms and their kids are doing really rather well...not really changing things at all...just adding meds and doctor appointments and tests....so keep that in mind..... Devin being on 50 Imuran and 40 pred for the day is pretty much what the normal treatment is....The doctors will adjust the doses as time goes on ...and as they can see how he is responding to the meds....so one of the things as a mom you have to learn is PATIENCE....it is a waiting game....if labs come back better they will probably lower the pred and raise the Imuran...that is also normal.... Also the weight gain and the acne is normal...although not wanted ..when on prednisone....Those will also get better as his pred is lowered....just ...again...be patient.....and make sure that you don't make a big deal out of either one of those things.....don't make him feel real selfconscience about them.....they will get better..... Sleeping is also another pred problem...so that should resolve itself too.... Ty has had all the same problems from this med....but it is the med choice and really does work miracles..... School.....well lets just say Ty had a really rough time with school.....but again he is rather complicated and as been sick since he was in the 5th grade.... But as far as GYM....here is my person answer.....Unless Devins doctor says he should not be in gym....the leave him there.....This whole thing makes these guys feel really different ....which is not good at any age for kids....and having to leave such a guy thing as gym will really not help him..... Ty remained in Gym as long as his doctors let him....which was up until his senior yr....when medically he could not be there....but he ran track...in grade school ..until it was he who said "enough"..played soccer.... until he had other problems that made him stop....remember Ty has other auto-immune problems....and those were the ones making him stop these things....not his liver..... PE is helping him....to be NORMAL....and that really is important.... I do see another email from you to the group about his biopsy results.... The amount of inflammation is not bad...and that may be because of the meds...like the report says....if the biopsy had been done before the meds then there might have been a clearer picture....but at this point they are treating for what they suppect.... Some personnel questions...and if you don't want to answer or would rather personally email me at bbnlu@... then you can also do that....but here goes... where in the country do you live....if you even live in the US.... what kind of a doctor are you taking Devin to... It does seem that what you doctor is doing is the norm...so I am not saying that the doctor is doing something wrong... I take Tyler to a Childrens Hosp in Philadelphia....we live in NJ....my other son who is now 24...wow...will be 25 in April....also went to the same hosp and doctor....he was diagnosed with Ulerative Colitis when he was 3..... Ty started going to Childrens when he first got sick...and sees alot of different doctors there.... Well I hope I do hear from you....and hope that Devin is coming down on the pred and is feeling better... also...there is a med for the acne....topical....Ty has used it in the past...many times....ask the doctor about it.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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