protecting children from the pain we expereince

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Permalink Reply by Tracy Donovan on November 11, 2010 at 4:49am

Hi Janine my son is 11 and I was only diagnosed July this year unfortunately I didnt really have a choice telling my son as he saw me in chronic pain before I had it under control he was so freaked out he thought I was going to die because of the pain i was in. Because he is older he could understand more of the explanation but when I have pain and I am trying to control it he goes into overdrive chating to his dad so they sort of distract each other whilst I get through the attack. He has suddenly started to help with tea and tidy his room!!! I know how you feel about protecting them and I wouldnt discuss everything with my son such as operations etc but he needs to know about what I have and how that affects him so he can develop his coping skills should he need them. All children are different and I probably wouldnt have discussed it with my son at 11 if it wasnt for the crippling pain attacks and I had to allay his fears then! cheers Tracy x

Permalink Reply by Kerri Lipschinski on November 15, 2010 at 12:27pm

i have a nine year old daughter and six year old twins and i have had TN for 3 years, all they can understand is that i'm sick again !!!! my eldest daughter cries everytime i get the pain and wishes that i never ever had it. I just keep trying to talk them through it in a way that they understand, asking them for big girl and big boy help in as many ways as possible. I still protect mine from the truth, it would hurt them enough seeing you in pain without knowing exactly how much

Permalink Reply by Elaine Kobelka on February 1, 2011 at 2:53pm

Janine,

I think the best thing to do is to introduce your condition into the kids lives - age appropriate.  Of course you are not going to describe the exact pain to a 4 year old, but I think it is important that they at least have an idea that Mommy is going to have some unhappy, sad, sick or bad days and its not their fault.  I think you should make a family plan of what to do on bad days.  Maybe on those days everyone needs to use indoor voices, quiet play, Mommy needs a bit more help.  Have a plan for what everyone does when you come home from the Doctor / Hospital.  That way they aren't pouncing on you at the door.  4 year olds are mini nurses.  They would probably enjoy having a job to help take care of you on those bad days.  Your 2 year old might not understand, but may mimic the behaviour of the 4 year old.  Perhaps that will help with the misbehaving.

 

As they get older - you need to tell them a bit more.

 

My kids were around 11-12 when I was first diagnosed.  I didn't want anyone to feel sorry for me so I gave my family a real condensed version of TN and what it felt like.  In fact I told them they got on my last nerve and it broke!  ha ha.   I let them know when I was having a bad day.  At age 11 that was ok but I didn't tell them more as they grew older. 

 

They are now 15-16, mature, extremely worried about me and confused because they didn't understand what exactly was going on.  I made the decision to tell them everything.  At first they were very angry with me for not sharing and now they are great.  They understand and help out a lot more.  There is a lot more patience with me and help when I can't get to all the housework or to the grocery store. 

 

So the best advice I can give is to share age appropriately.  Don't hide it from them.  Come up with a plan for what to do when Mommy doesn't feel well.  Continue to share more and change the plan as they get older.

 

Elaine

 

Permalink Reply by Erin on February 11, 2011 at 6:54pm

Hi all, It seems that we all have the same issue...we want to protect our kids from our pain....but our pain doesn't cooperate...it strikes ...if  like mine...when i am talking, reading to, eating dinner with, and playing with my children.  5, 8, 11 they are fully aware that this TN is not funny at all.  I have been as honest with them as possible.  They absorb what they can understand.  They know it is not their fault.  It just happened.  My 11 yr old asks many questions. I answer them honestly but simply.  My 8 yr old gives lots of hugs and offers her help all the time.  5 yr old is 5...not too aware of it unless an attack is present.  I tried to hide my meds from them too, but  I take so many so often it became imposible.    I have told them i am going to have surgery to get better and will be away for a week. They are not happy about that at all but it is real life.  Every kid is different, every TN patient is different.  Do what you feel is right for you and your family.  It will be okay!!  Best of luck!!  

Permalink Reply by Jen on November 20, 2011 at 3:27pm

I have a 7 year old daughter. I started having such severe pain that it is impossible to hide it. At times I am buckled to my knees and have also let out a scream. I see nothing else and am aware of nothing or no one when I am having an attack. Unfortunately my daughter has been a witness to this. It scares her and my husband. Mostly I feel that I have to be honest with her about my TN> I reassure her that she will not experience this ( I pray she never has a pain like this). So she is very considerate about understanding when to turn the music down. When to turn the ac off in the car when I am having "A tooth ache". It is best to be honest I feel. They know that something is wrong and know when they are being told a falsehood. My daughter doesn't know the extent of my pain but she knows its there.