Questions about kids and a parent with Lupus

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 9:52 AM (GMT -6)   
Hi all, I have two young boys 1 and 6 and I was wondering a few things.  When is a good time to talk to children about your illness, any resources available on this subject?  What concerns about genetic inheritence should I have?  Are their more specific tests my kids should have done?  I've got a call into my pediatrician and I will let you know what he has to say, but I thought I would get the topic started here.  Thanks so much.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/13/2008 11:14 AM (GMT -6)   
Jennifer, this is a tough one. My kids were 6 and 2 when I got sick and I wasn't sure how to explain it to them. If course, my 6yr old understood it way better than my 2yr old. Now they are 11 and 7 and it has been quite a journey. I went from overwhelming mommy guilt to a place where we are pretty well adjusted to my illness now. My 11 yr old understands everything he needs to know about my lupus and my 7 year old now understands that lupus doesn't ever go away and that there are times I feel pretty decent and times I feel really sick.

I found one really great resource when I was looking for a book for my kids. Your son is the perfect age for this book. It's called "Are You Tired Again...? I understand." If you do an internet search of the title you'll find places to order it. I know for sure you can go to lupus.org and order it from their store. It's a neat interactive book for parents to go through with their kids.

I hope this helps. One of the hardest things about this disease is being a mom of young kids while dealing with this ilness. Believe me, my kids and I (and my husband) have run the whole spectrum of emotions during the 5 years I've been sick.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 11:18 AM (GMT -6)   
Thanks Hippie, that's what I was looking for.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 10/13/2008 11:49 AM (GMT -6)   
I went to Amazon and it is out of print. I guess a second hand store might have a copy.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 5:18 PM (GMT -6)   
Hippie was right, Lupus.org has it in stock. Thanks for checking, Red.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 

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