I am the mother of a child who is 7 years old. She was recently diapnosed with autoimmune hepatitis. Her specialist told me it is the 2 nd type the rare one.
She is on generic for Anazthioprine 50 mg/1 ml 70 ml
She was on Prednisone , but only for a month or two. Her blood levels are running great on the low normal side.
I know she gets tired a lot. I hate to say it , but she is so winny or fussy. I know she is not a baby so I hate to say fussy. I just don't really know what she is going through.
It is so hard !!!!!!!!!
Does anyone else have a child with this condition or know what she is going through that can make me understand .
Her doctor said she will be tired a lot. I am wondering about school this year and the impact that will have on her.
Doc tates "" she will be on Azathioprine for the rest of her life. ""
I am not sure how she acquired this disease . I am just grateful throgh routime bloodwork from a kidnwy infection her pediatrician found elevated liver ensymes and went from there.
she has had a liver biospy done too and that is where her diagnoses was confirmed.
Any advice would be much appreciated.
Thank you and God Bless.
I don't know anything about AIH. And having kids I have demonstrated that I don't know much about seven year olds either. But while doing some unrelated reasearch a few weeks back I did find out that there is such a thing as a 'pediatric hepatologist'. Sounded like a highly specialized field. If your doc in not one, maybe you can locate one and get some insight.
I know of one gentleman in my local support group who had autoimmune hep as a child. In fact, I believe he was a teen when he had to have a liver transplant back in the early 80's before transplantation screening was routine and contracted HCV as a result of his transplant. Now, 20 some years later he still lives with the HCV but I believe the transplant took care of his autoimmune hep.
If he is not at our HepFest tomorrow, I could ask to see if I can get in touch with him to see if he would be willing to talk with you further about your daugther from his perspective which might help you understand what she maybe going through. He seems like a nice enough fellow who is willing to share his story, but I can not promise he might feel about going into too much detail.
I had a chance to talk with the person I mentioned earlier tonight at our HepFest and he said he would be glad to talk with you. His transplant was done 18 years ago for AH which is why he contracted HCV since it was before organs and blood where screened.
As a father of two himself now, he said he can empathize with what you must be going through. As a person who has had to deal with AH most of his life, and obviously had it severe enough to warrent the tranplant, he can imagine what you daughter is going through as well.
Since we can not post emails to the forum, we'll have to try and connect via a chat room, such as Janis & Friends, so I can pass his email along to you.
The problem is I'm leaving early in the morning for a little R&R with my family up at the Lake of the Wood here in MN until next Thursday evening. So I do not know if we can connect so I can get you his email before that. If you want to check in the Janis & Friends chat room from time to time in the evening to see if I'm there, in case I can get internet access while I'm gone, I go pretty much by the same nickname as I use here (i.e. GrandOak1).
I'll check back here when I can to see if you're still interested in talking with him about this subject.
Oh, I was also curious to see if your daughter's doc explained to you what this disease is all about. You mentioned that he couldn't explain how she acquired it, but did he tell you really what it is and what it's related to? I wont pretend to know more than the doc but sometimes I know they don't share as much as they can info wise and we the patients are mostly too much in shock at being diagnosed with something chronic to know what questions to ask. A big clue for my doc was the fact that two of my cousins had been diagnosed with Lupus, which is also an autoimmune disease. It seams that some people are just more susseptable to autoimmune diseases than others, and there are studies taking place now to check into family genetics.
Thank you Lynn and Grand Oak. I am so glad I found this forum.
I would love to get those email and tell you more.
Today we had a birthday party for my nephew. Kattie acted like she didn't feel real well. She would not play or anything but did go swinmming when we got home.
I asked her doctor how she got this disease and he said he could not answer my question because he did not know. It is just one of the things that happen. I believe everyting happens for a reason. She is sick, but she could be a whole lot worse.Her blood levels are good right now and I am just sooo thankful for that. Her Hepatologist says she has probaly has for some time now. At lease a year or so.
Sometimes ,I find myself thinking how she will be doing in a year or 5 or 10. But I can't focus on that just take it one day at a time.
Thank you for listening.
Hi. Extreme fatigue was certainly a major symptom of mine before diagnosis and prednisone, nor the prednisone is sort of counteracting that among other things. I don't know if the med she is on would cause her to be tired as I have not yet had to experience that one since I'm only about 1 month post diagnosis and still on a fairly high daily dose of prednisone. I used to be tired all the time. In fact I've spent the last four or five years being criticized by family members and whispered about by so called friends and co-workers because they just thought I was being lazy, even though I work a demanding full time job, am a single parent, and have several hobbies. That wasn't fun. So I'm glad you're attempting to understand so you can better deal with your daughter because she will need it if she's experiencing the same symptoms I did. What was even worse than the fatigue was the joint pain. Everything hurt, all the time. Pain so bad there were days I didn't think I could hobble out of bed and into the shower on some mornings, but I always did. And I have to say the pain and constantly being tired made me irritable. It's a long story, but even though I've visited several different doctors, had elevated liver enzymes for the past ten years, several ultrasounds, tested for reumatoid arthritis, etc.. nobody ever thought to test me for AIH as it is rare. I actually started to believe them when all they would say is "it must be stress", or you need to get more exercise. Anyhow my point in describing all that is that I think it's important when your daughter gets fussy and is having a bad day that you understand it's real and she needs your support and help. That's not to say she should be encouraged to just sit around and feel sorry for herself but that if you understand that it may take her a long time to get dressed or she may actually need you to help or she may need to take a nap in the middle of a long day, etc.. your understanding will make it easier for both of you. She wont resent being pressured to perform when she absolutely can't, and you wont feel like she's behaving badly or being lazy, etc.
One other really bad symptom was the itching welts on my skin and hot swelling of joints when the joint pain would flare up. I would itch a little and then scratch, only the little scratch I would give my itch would cause huge red swollen welts that were intensly painful and bothersome and impossible to ignore.
I'm happy to say that since a liver biopsy confirmed the diagnosis and starting the prednisone most of my symptoms have lessened or even gone away. Of course pred has it's own special set of side effects but you know I'm willing to deal if it means I don't have to feel the pain and fatigue I used to. My gastro doc has referred me to another specialist who will make the final determination as to what medication I'll be taking long term but for now I'm thankful for the little miracle steroid.
One other thing though is that the purpose of the medications used to treat this disease, including the one your daughter is on, is to suppress the immune system so that it discontinues it's attack on the liver and that will leave your daughter more suseptable to catching every cold virus and sickness she is exposed to so that is a consideration also if she's acting funny, she may be sick.
Don't know how well I aswered your question... if you have any others please feel free to ask and I'll do my best to answer.
hi michelle i am 40 years old and have aih. stick with your daughter. i at my age have good and bad days. on the bad days you feel so tired and can feel really fed up. must be bad for your daughter at her age as she will not understand why she is feelin like this. if you need to talk pleae feel free. it is the medication that makes her feel like this. i have been aih for 18 months now and will be due for another biopsy in april 2007 to see if it has gone into remission then can come of the pred. lets hope. give her a big love .must be hard for you as well know what my brood have to put up with. i have 4 kids. talk to you later. lynn
Thanks for the comments
Her doc sort of kind of explaned things if that makes sense.
You would have to see and know this doc to understand . He is an older man up there in age. He starts to talk and then stops and then begins to talk again. You get the picture huh?
He always says , "" it is a disease that effects the liver and attacks it for some unknown reason, it is rare for her age, we will have to watch for juvenille diabetes, ect. probaly some of what you've been telling me.""
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