Any Advice

[Guest guest]

Good morning ....

I am far from an expert, but I am currently writing an article for

next months issue of IG Living, approaching the challenges of

distracting our children from their " disorder " . One big thing to

keep in mind is that our children react strongly to how we

ourselves, as parents are dealing with the situation. THey often

witness the negative side of dealing with their PID...all the calls

to the insurance....the frustration with physicians etc....Children

are very vulnerable to our emotions. With your daughter, I would

try to take any of the negative stuff out of her presense...deal

with as much of the stressful issues " behind closed doors " . Take

her disorder out of her life as her focus...concentrate on making a

list of things that are very important to her....that give her life

and stress her health. Molly is a very sensitive child and we have

had problems with night terrors....so we went on a mission to give

her positive things to dream about. At 5, she is showing

horses...and she lives for it. Make something like this the focus

of her life....not her PID or her IVIG. The other thing that is

very important is to let her know that it is ok to have the feelings

that she is having and listen to her... We make going to IVIG a fun

event....it is not about the IVIG....it is about getting to go do

crafts....playing with the other children that are there....watching

fun movies....eating tons of junk food.....racing about on IV

poles.....etc.....IVIG has been taken out of the focus and the focus

is on other things and now the children look forward to being

there. I hate teaching our children that PID is a " disease " in a

sense that it reaffirms that they are " sick " . We teach our children

that it is a " disorder " and that everyone has a disorder of one kind

or another....whether it be that they are follically

challenged....their teeth are crooked....they have flat feet....that

everyone has something and this is just what they have...we teach

them that " normal " means something different for everyone and that

this is " normal " for us. It also sounds as though your daughters

teacher needs a bit of a lesson in the importance of self esteem and

ego in young children (and adults for that matter).

THe very most important thing is to know when to ask for help. I do

not know where you treat, but call your local pediatric oncology

center and ask them for the name of their social worker. Most

states have a pediatric cancern foundation. While you daughter does

not have cancer, in a sense we, as families face the very same

challenges...emotionally, financially etc as families that have

children with cancer. Their social workers will be very equipped to

help you get through this and they are designed to treat not just

families facing cancer...but families that are facing other chronic

or life threatening illnesses including immune disorders. Use every

resource you can...now....not when the damage is done....it is much

easier to intervene now and prevent problems from a sense of

proactivity then to deal with them reactively when the problems have

become ingrained in your child.

I hope that helps!!! (You made me " practice " my articcle! LOL)

Terri Cerda mom and both children have CVID