hey everyone, im just wondering how you all approach tn with your
children… Im finding it really difficult to even tell me girls when
im going to the doctors or hospital, I just say im going out for a bit
and be back soon, I just feel so bad I feel they are too young (2 1/2
and 4) to hear atleast once or twice a week that i have to go… As well
i find it really affects there behavior, the day after I have been in
the hospital they are all over the place and misbehaving, I know it
affects them but I just want to protect them from the truth they dont
need to know at such a young age!.. anyone else have this problem and
how have you dealt with it?
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
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
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!!
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.
Hello All:
I don't try to protect / hide this all from my kids. I have both a 5 and a 3 year old girls. I tell them that I have a "sore ear" (I have GN not TN) and am going to see the doctor to see if they can help me. They know I have a sore ear, as I often have to remind them to not yell, scream, blow, etc into my left ear.
They do ask often, did the doctor fix your sore ear daddy? Which can break my heart. I am now debating MVD which I know will be a difficult thing to discuss with the kids, but they are stronger then I am I think. My 5 year old is a real trouper, which helps as the 3 year old follows her example.
Kids are more resiliant than we give them credit for. I find the truth is easier then lies. Just keep it simple like others have said.
Be honest, yet keep it to the facts that they can understand at their age.
Hope you can get some answers.
Hope you get relief.
Smash
I have two children as well, boy 16 and girl 11. I have had TN for 9 years. I have tried to hide it as much as possible. However, it is what I and my children have been dealt and I feel like it's okay for them to know I'm not feeling well. When they have a little bug I love them and try to make them feel better. So, unfortunately when I don't feel well, I think it's okay for them to help more around the house or pick up some slack. It's just the way it is.