Re: Back and Need Help

[Guest guest]

In a message dated 12/30/01 11:59:30 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)

Lori, I'm so very sorry you and your family are having such a hard time. I've always admired your strength in dealing with this situation, and I continue to do so. Don't minimize your difficulties; this is a lot to handle. I wish I had some suggestions, but I don't. Do you live in a city where there might be support groups for children and their families? 's difficulties aren't unique to children with AIH. I know a seven-year-old with leukemia who has battled similar problems (baldness, Prednisone-induced mood swings and weight fluctuation, physical discomfort, and general fears). Fortunately, his school is small and able to give him a great deal of emotional support, working with his classmates.

You aren't the only mother of a young child in the group. There are, or have been, several. One parent is Crimmins, who wrote "Where is the Mango Princess" about her husband's massive head injuries and resulting emotional instability. Shortly after that, her daughter, twelve, developed AIH, with the usual difficulties. I believe her daughter's name is . ? wrote to the group a few times, hoping to find another child to correspond with. I can't find my copy of "Mango Princess" right now. Unfortunately, I didn't save out ' or Crimmins' e-mail addresses. Does anyone else have them or know how to get them? You might be able to get in touch with her through her publisher; she seems very accessible, very open. struck me as a child who might be able to "mentor" a younger child through these difficult times.

Best wishes to all of you.

Harper

[Guest guest]

Lori,

I found the email address for the crimmins that Harper had mentioned.

CECrimmins@... if you search the archives it is #34632 just in

case I dont have all the right information. It was posted on 10/10/01

@ 1052am in case that helps too. I hope this helps you out and I

will be thinking and praying for you and your family at this time.

Please keep us posted on what is happening - sometimes just writing

the group is enough to help you through these tough times. We have

all been through them at some point of time and the group is always

here for you day or night.

LC AIH (0701)

> 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)

[Guest guest]

Lori,

I am so sorry your daughter is having such a rough time. It is probably ten times worse on you. I truly can't imagine having one of my children sick. I'm grateful it is me and not them so please don't feel like you don't belong. We can all sympathize. You are in just as much pain and worry as the rest of us. I hope things start to turn around for her. Your in my thoughts and prayers. Take care.

Bethanne AIH 9/01

[Guest guest]

((((LORI)))))) sorry you are having such trauma in your life. Keep looking in the internet and possibly you will be able to find some support groups. Also, you might want to talk to your GP to see if they can give you something for your physical symptoms! My heart goes out to you!

debby

[ ] Back and Need Help

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)