LORI...(LAURENS MOM)

[Guest guest]

In a message dated 12/30/01 11:59:27 AM Pacific Standard Time, LANDJDUNCAN@... writes:

Hi Everyone

It's been quite some time now since my last posting but I've not been doing so well.

I'm afraid that I just haven't been handling being sick, very well. is my 8 yr old daughter she was diagnosed July/00. She has been on prednisone since July/00 and has tried Imuran with no success and now is on Cellcept with very little success. She is depressed and doesn't understand what going on. Sometimes she is so afraid of how she's feeling that she spends hours crying in her room. She told me that she is too fat to go to school, her weight has doubled since July/00. I can't stop thinking about her illness, and now I'm depressed, my hair is falling out,I can't sleep and I often have chest pain and panic attacks. I'm always strong for her and can't talk to my husband because he is also very worried and has been dealing with his own stress problems throughout all of this. Our son started having seizures last Aug and I thank God that the Drs believe that it is reactive seizures caused by pain or illness. But since Aug I feel like I'm about to go crazy. How can I learn to deal with this? Does anyone know of a support group for parents of children with AIH.

I know that most of the people in this group are dealing with this disease and that I am only the mother of a child with AIH but I'm lost and I can't afford to be weak now when needs me so much.

Please help

Lori('s Mom)

HI LORI,

I AM VERY NEW TO THIS GROUP AND PROBABLY CAN'T OFFER MUCH INFORMATION ABOUT ALL THIS. STILL LEARNING MYSELF!

.....BUT AFTER READING YOUR E-MAIL, I FELT THE NEED TO JUST LET YOU KNOW THAT I AM THINKING OF YOU AND YUR FAMILY. I WILL SEND SOME PRAYERS YOUR WAY. MAYBE SOME ONE ON ONE COUNSELING COULDN'T HURT?? FOR YOUR DAUGHTER I MEAN. OR EVEN ANYONE IN YOUR FAMILY FOR THAT MATTER. SOMETIMES, ITS NICE TO HAVE THAT OUTSIDE PERSON TO CONFIDE IN. I HAVE 6 KIDS MYSELF, BUT I AM THE ONE WITH THE ILLNESSES. THIS GROUP HERE HAS BEEN A LIFE-LINE FOR ME.

I TAKE ANTI-DEPRESSANTS FOR SEVERAL REASONS NOW, BEING ABLE TO SLEEP WAS ONE OF THEM, AND LET ME TELL YOU, I FEEL A BIG DIFFERENCE BY GETTING SOME SLEEP!!!

MAYBE YOU CAN ASK YOUR DOC ABOUT THEM FOR YOU AND YOUR DAUGHTER, OR WHOEVER HE/SHE FEELS NEEDS THEM. I/MY DOC ARE GOING TO BE PUTTING MY 14 YR OLD ON ANTI-DEPRESSNATS; HE JUST SEEMS TO BE SO DOWN ALL THE TIME; NOT ASSERTIVE; FEELING WORTHLESS; NO FRIENDS, THAT SORT OF ISSUE.

I KNOW A LOT OF WHICH IS A PHASE, BUT WE FEEL HE NEEDS EXTRA HELP; GRADES REALLY SLIPPING BAD; ISOLATION, THAT SORT OF THING.(WHICH HAS NOTHING TO DO WITH AIH) BUT WAS JUST SHARING INFO.

I SURE HOPE THEY FIND THE CAUSE OF YOUR SONS SEIZERS.....YOU POOR DEAR, YOU HAVE SO MUCH ON YOUR PLATE....(HUGS) REALLY WISH I COULD SAY OR DO MORE FOR YOU!!

THERE IS SEVERAL PARENTS HERE(well i don't know how many) BUT THEY HAVE KIDS WITH AIH TOO. I KNOW A NICE LADY BY THE NAME OF ROSEMARY, SHE HAS A SON WITH AIH; MAYBE SHE CAN HELP? HER SONS NAME IS HUNT. MAYBE YOU HAVE ALREADY SEEN HER POSTS??

TRY POSTING TO HER NAME, I AM SURE SHE WILL RESPOND!

PLEASE TAKE CARE, AND REMEMBER YOU HAVE TO TAKE CARE OF YOU FIRST, BEFORE YOU CAN CARE FOR YOUR BABIES....

TALK WITH YOUR DOC. ABOUT SOMETHING TO HELP RELAX YOU, SO YOU CAN BE MORE PRODUCTIVE.....

I WISH YOU THE BEST AND PLEASE KEEP IN TOUCH.

WARM HUGS FLYING YOUR WAY!!!!!

**HAPPY**HOLIDAYS**

**AND WARM HUGS**

Bert.