Re: Luanne Tys mom

[Guest guest]

Luanne, Glad you could find time to write. My time is in the morning while everyone else is sleeping, it's hard to get on this computer when you have a 17 yr. old chatting with all her friends and then Emma and Freddie wanting to play their games.

I did find a vest that children have to use when they are horse jumping, it's not the prettiest thing but it serves it purpose and she willing to wear it to do the things she wants to do.

Emma been having a lot of cramping and pain lately. I don't know if it's from the increase of the imuran to 75 mg or her liver and spleen ( 17 cm ) It's hard for me to judge since I'm not the one having the pain. She sees the Dr. on the 18th and I'll have her blood drawn a couple of days before so we can see what is going on. I hate getting blood test done the same day then I would always have to call back and talk to someone to find out what's -- up with her levels. Last month her white blood cell count was at 2000 very low, so she may even have another Bac. Infection. But she is a trooper! I think most kids are. How is Ty doing? Is he still on the Remicade? Or do the Drs. have him on something else. They were thinking of putting Emma on that but then I didn't here anything else about it. Well, I hope you doing well. Holding up as well as can be expected at times I'm sure.

Write sometime when you have time, I know how it is. Emma is looking forward to going back to school, but I don't know if I'm ready for that. ( catching everything around her) My prayers to you and your family. Take Care.

[Guest guest]

,

I don't know if this has been suggested but I also have an enlarged spleen (16cm. , not as large as Emma's). The spleen is hoarding all the White Blood Cells, and platelets, my counts stay low. When they get too low I get shots of Neupogin to increase them. The effect of the Neupogin is temporary, for a while when things were bad (consistently below 1000) I was getting them daily. The home health nurse would come to the house and give them to me. The neupogin is expensive ($700/ vial) but insurance paid.

There is controversy about the value. My Oncologist says it is artificial and the only thing that will make a difference is to get a new liver, my hepatologist feels it will bump up the values enough to protect me.

I can understand your concerns about Emma going to school, she will need to be careful. I would say, being in the same situation, she may get sick but then the two of you will deal with it, she is a kid and life must go on.

I would talk to her Dr. about the Neupogin. My only caution is to make sure the nurse gives it slowly it is a subcutaneous injection, it burns if given too fast but if it's done right she won't even feel it. Slow!

Good luck, must be hard since she's a kid. Someone mentioned a long time ago about having a site on just for kids to talk to each other. I haven't heard of it since.

Patty

-----Original Message-----From: fritznatalie6@... [mailto:fritznatalie6@...] Sent: Tuesday, August 12, 2003 7:49 AM Subject: Re: [ ] Luanne Tys momLuanne, Glad you could find time to write. My time is in the morning while everyone else is sleeping, it's hard to get on this computer when you have a 17 yr. old chatting with all her friends and then Emma and Freddie wanting to play their games. I did find a vest that children have to use when they are horse jumping, it's not the prettiest thing but it serves it purpose and she willing to wear it to do the things she wants to do.Emma been having a lot of cramping and pain lately. I don't know if it's from the increase of the imuran to 75 mg or her liver and spleen ( 17 cm ) It's hard for me to judge since I'm not the one having the pain. She sees the Dr. on the 18th and I'll have her blood drawn a couple of days before so we can see what is going on. I hate getting blood test done the same day then I would always have to call back and talk to someone to find out what's -- up with her levels. Last month her white blood cell count was at 2000 very low, so she may even have another Bac. Infection. But she is a trooper! I think most kids are. How is Ty doing? Is he still on the Remicade? Or do the Drs. have him on something else. They were thinking of putting Emma on that but then I didn't here anything else about it. Well, I hope you doing well. Holding up as well as can be expected at times I'm sure.Write sometime when you have time, I know how it is. Emma is looking forward to going back to school, but I don't know if I'm ready for that. ( catching everything around her) My prayers to you and your family. Take Care.