Question(s) for Uc parents - the emotional aspect our kids face

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Red_34
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Date Joined Apr 2004
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   Posted 3/22/2008 11:57 AM (GMT -6)   
My 12 year old daughter has been having some issues lately.  So I've been taking her to see a therapist and one of the things that came out was that she was scared because of me being sick and it worries her ALOT.  I usually try to hide the days when I'm really ill from my kids but I guess they're a little more preceptive then I gave them credit for.  Of course, it didn't help having her see her mother taken away by ambulance last October!  sad   I have always been upfront with my kids and explained what Uc is and have tried reassuring them that I am not going to die; that I'm going to be around a long time being a thorn in their side! :-)    Can someone give me suggestions on how to reassure my daughter about me having Uc?  I knew that it bothered her, but she broke down in tears yesterday at the therapist's office when the therapist asked her why me having a chronic illness scares her.  She wouldn't reply.  I felt I was doing everything in my power to reassure her, but now I feel that it's not enough.  So any ideas?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 3/22/2008 12:24 PM (GMT -6)   
Gosh Sherry! That's a tough one. I think you are doing the right thing my taking her to see a therapist. It is scary to think our parents can get sick (remember we are supposed to be superwoman!). I think keeping an open dialogue w/ her and letting her know you are ready to talk when she is the way to go. Maybe she could go to a GI visit w/ you and the doctor could explain this condition isn't life threatening. Do you think that would be reassuring?

Eventually as she gets older she will understand that you have tough times w/ this disease.

How about if I come talk to her about UC you can come down south and potty train my son?! He pooped on the wall earlier!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 3/22/2008 12:29 PM (GMT -6)   
I wish I did have some advice for you.... my 5 year-old daughter goes thru the same thing. She was a nervous wreck when I was hospitalized last year, & is nerved up about my upcoming surgery also. I don't know how to reassure her- I do tell her what exactly is going to happen, what to expect afterwards, & she knows all about stomas & bags. She's even seen stoma pics on the internet! And when I do break down & cry over what's going on, I know it bothers her. She is pretty resilient though, & she knows that Mom will be 1000x better after I do have surgery- no more pills, hours in the bathroom, weird infections & such. I also think the younger a child is, the easier it is for them to accept these things- 12 is a tough age anyways, never mind having an ill parent on top of it! Maybe you could call her therapist & ask for some help with it?
Or, another good place is the library- in the youth section, they have tons of books about parents being ill, divorce, death, homosexualioty, etc.- all the things that are tough to explain but are a part of everyday life. This indeed is an awful part of the disease.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 3/22/2008 1:23 PM (GMT -6)   
Ummm no Tab - you can keep the potty training. I've already trained 2 and that was enough! LOL I've taken my daughter with me to GI appts before but I don't think he ever explained to her anything. It was more along the line that I didn't have a babysitter and she had to come. That's a thought though.

Eva, I've had this DD for as long as I've had my daughter (a bit longer though) and she has grown up with me already sick. But I think now that she can actually understand what mortality is, that it scares her. But I like the library idea. I think I might make a trip for that! Thanks :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 3/22/2008 1:30 PM (GMT -6)   
Sherry, the only thing that might help is if you don't try so much to protect your children from knowing about your bad days. As you said, children are very perceptive, especially where their parents are concerned. In the absence of explanation from you, what they imagine could be much worse than the truth.

Just a possibility.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
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AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 3/22/2008 1:46 PM (GMT -6)   
Sherry, I think you are doing great by talking to her, reassuring her and also having her see a therapist. I do think asking the therapist what else you could do is a great idea, as are the books at the library. I wonder if there are support groups out there for the kids?
AlabamaBabs
Pancolitis diagnosed 5/07 and started 2 Lialda/day;
increased to 4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!Canasa suppositories 1000mg as needed
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/22/2008 2:33 PM (GMT -6)   
Well actually she's seeing a therapist for other issues (I would much rather not explain it here) and this just happen to come up in one of her sessions. But I'm glad to know that this has been bothering her. My daughter is rather stoic and hides her expressions fairly well. I had a hard time getting her to open up to me about her other unmentionable issues but she did. She never told me that me having Uc is scary for her but now that I know, I now know how to proceed - sort of.

I think that dragonpack.com has a support site for not only kids that suffer from illnesses themselves but from the sufferer's children. I haven't really had a chance to look it over yet.

And I think I will be more open with her when I'm having a bad day. I didn't want to scare my kids when I have my bad days but that makes sense that by me holding out that it may scare them even more. My son is 16 and he tells me if things are bothering him and I feel that he understands more then my daughter about me being sick.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 

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