restrictions?

i have the silliest question ever....

after lauryns transX, can we go out and about,orrrr will she be suseptible to sickness? should i give her tylenol for the pain afterward?
what restrictions do we have?

Hi Christine,

I wondered about all of this as well when my son first began transfusions.  Thalassemia, when the child is otherwise healthy, should not affect the immune system.  My son rarely catches colds, even when my daughter is sick.  In fact, my son did not catch any colds in his first 4 years and our doctor told us to let him play more with other children in order to develop a more healthy immune system - because children should be exposed to some of these germs. 

Other than transfusions and desferal - my two children do all of the same things.  I hope your doctor will spend some time with you during your next appointment to re assure you.

My son did not have any pain associated with the transfusions.  He was however a little sensitive to the hospital linens & pjs so we used his own clothes and blankets in the hospital.  I also give him a little bit of reactine when we go to the hospital because of the linens - of course you should consult you doctor if you ever need anything like that.  I hope that helps. 

Does anyone else have a different experience of all of this?

All the best Christine,
Sharmin

thx for the reply sharmin....

can we go out the same day as the tx??? what should i dress lauryn in? pjs? w/o sleeves? can they use emla cream on her?

Hi Christine,

yes u can go out the same day as transfusion, i don't think it would be a problem,though they give my daughter an anti allergic here, during transfusion, so she becomes a bit sleepy,but after getting some sleep,she usually feels fresh,and i think u should give a little dose of any pain killer to lauryn after transfusion,bcoz it's her first time, she might feel pain after removing IV.and dress her normally and comfortably,according to the temperature you seem so worried that i wish i can be with you and hug you and tell you that every thing will be fine, and believe me it will be fine,

Take care of yourself and Lauryn,

Zaini.

Christine,

You may want to dress her in layers.  The bottom layer should be short sleeved so that they can check her blood pressure etc during the transfusion.  Try to give her extra fluids the day and the night before the transfusion, this makes it easier for them to get the IV on (it plumps up the veins).  If the children are dehyraded it takes longer to get the the IV on and it becomes frustrating for the child and the nurses. 

We also try to take a familiar blanket and toy with us.  You may want to bring something you can play with your child.  The experience becomes more positive for children if you do a special activity with your child during transfusions. 

My child recently read about gene therapy.  He was devastated and started to cry.  To my surprise he told me "this means I'll be cured and we won't have our special transfusion day anymore".   He also told me how much he loves his life just the way it is, with thalassemia, and that he doesn't want it to change. 

Of course I want him to be cured, and when he is old enough to understand he will be happy to be cured as well.  For now I feel blessed that he loves his life even even with IVs and desferal needles. 

We always come home after the transfusion.  During his first transfusion however we did spend one night at the hospital, but that was because he was diagnosed that night. 

Nurses sometimes put a warm cloth on my son's hand before trying the IV and some children also get emla which helps with the pain.  Children are often upset about being held firmly during the IV and they can get very upset during with the IV needles, especially if they have to poke them multiple times.  Starting an IV is the most difficult part of the process, but it does get better. 

I wish you the best,

Sharmin