Children at that age are easily adapted to your situation. When I first became ill my son was 5 and my daughter was 10. I was open and honest with them. I explained things at there level, not like telling an adult of course. With my Grandchildren, now ages 2 and 4, I have noticed that they have never had any problems with seeing me on my IVIG thru a central line at home. They just say "medicine to make you feel better." Any time they ask a question about it I answer the questions at there level. They are very accepting that this is what Grandma does to feel better.

It's part of who I am now. I'm a mom that has to be careful around sick kids, that makes her kids take a bath when they've been around other kids to keep us all safe (me out of the hospital). Explaining as you go in a natural way is best. My kids are now 9 and 14. They get it. They come home from a group function and say, "so in so had a fever, so I'm going to take a bath." Or "My friend wants me to come over, but they've got a cough, so I'm not going to go." It's part of being family, looking out for one another. And frankly, it will help them adjust to changes over time in their own lives some day. There are some days I feel like absolute crap--and can't do as much. They don't grouse and tell me I'm a drag etc. they understand that I feel like garbage and pick up the slack. We're all in this together. And someday, when they get married and have kids, it opens the door to their being empathetic with their loved ones.

I've never been one to hide things from others for any reason, so this might just be my personality speaking here. But, openness and trust come from listening and sharing--and that's not a bad thing at all.

I am a single mom and was diagnosed she my daughter was 2. It was easy to hide when I was doing if ivig but I've been doing sub q for the last 2 years. My daughter is 9 now and its just a part of life. She doesn't like to see me stick myself so I usually start it when she's in the bath. I do my infusions on Sunday nights, so it works well.

I really believe its how you present it to your kids - at any age. If you are scared and present it to them in a negative fashion, they may fear it as well. My daughter was 5 when I was diagnosed and I told her guess what? they figured out why mommy was sick and there is medicine that is going to make me feel a lot better. She has been front and center when I transitioned to subq. She fills out my log for me and peels off the label and affixes it. She now sets up all my supplies (not opening the package). My situation may be slightly different as I was diagnosed with a severe lung disease. Even tho we have to have a plan in place at her school for outbreaks of illnesses, and she has seen me up vomiting all night from different meds...I kept her involved and made it no big deal and she is such a trooper. She recently told her friend who had the flu she couldn't play with her for 2 days LOL When I had her in counseling for behavior issues, my illness never came up. Kids are WAY more adaptable than we realize. Please realize, however you decide to handle it, will be whats best for YOUR family.

I was leaning toward introducing it to him slowly so it is a normal part of our lives and not to make a big deal out of it. Thank you all for your imput. It is very appreciated! Especially since the little monkey is the most important person in my life.

Very cool to hear the different ways people handle keeping the kids informed!

I've been on sub-q for 2 1/2 years and for the most part it has just become part of life for us. The whole family watched the first infusion. To our kids, every Sunday is Dad's time to do his medicine. They don't think much of it anymore from what I can tell.

IDF has resources to help kids understand the immune system and the issues that can go on...at their level. That might be useful when the time is right.

Gammaguard has some great resources for children too. My daughter just got Igi, the infusion bear, infusion log, magazine for kids, etc. awesome stuff!

Good question. I am raising my 6 year old grandson. He is autistic and takes everything very literally so I have to be careful what I say to him. For now I have just said to him that I have to spend the day at the hospital so they can give me medicine to make me feel better later. He knows I feel pretty run down and sleep a lot for a few days after, and then I am back to myself. I have explained to him that it can take several times of getting the medicine before it really starts working. I don't know how much he understands, and I know he worries some, but I don't really know how much else to say. I home school; and he is very bright, so we have done some basic lessons on germs and the immune system and even an experiment on how germs spread and have explained to him that my immune system is not strong like it should be and that is why I am so strict about hand washing and cleanup. That part he seems to understand (as well as a 6 year old can) I hope someone has some ideas that will help me ease his worry.

I wondered whether to tell my two children as well. I am still quite in shock myself as I was only diagnosed a couple of weeks ago and had my first infusion (IVIG) last week.
I have a six year old boy and a very nearly three year old girl.
It was my husband who suggested we tell them, in kids language, what was going on. I think he was afraid the side effects would be much worse for them to see and worry about, rather than the thought of the medicine.
We simply explained that mummy needed a type of medicine which couldn't be given on a teaspoon and that because I got so much of it in one day, it made me feel a bit sicky and tired for that one day.
My daughter, obviously, seemed happy as long as mummy was getting medicine to make her cough go away during bedtime stories, and my son had a concerned curiousity and seemed very interested in the idea of medicine going into your blood....
Before I was diagnosed, my son had started to wet himself at school and had different behaviour changes. It turned out it was because noone had told him what was going on and he thought the worse. All he heard were snippets about hospitals, doctors, etc and had come up with his own little horrible theory.
Once I spoke to him , in kids terms of course, he was like a different biy and now is very supportive when he knows I'm going for my hospital medicine day.

I have students {taught English grades 6-12 for over 11 years before becoming disabled} who have kept in contact with me over the yeears-marrying and having their own kids...I feel old, but am grateful.

Anyhow, one just brought her family down to go to Disney for a few days {husband is Army}. My husband met them each day to sign them in for their passes. I thought we'd have breakfast out with them, or I could meet them for dinner, but now that I am off infusions totally, and completely and utterly sick & feel knocked down, so I had to tell her something. She's seen some of my updatess on my FB page, but I always keep it simple and without the gruesome details. But Stephen reminded me that even though I have known her since she was 8 years old, she's grown now, with a family of her own, and she's definitely old enough to be told the absolute truth about how bad I really am right now. So, I texted back and forth with her for two hours...she was completely upset. She'd actually looked at the IDF webpade when I posted the link on FB last year. But until I described how bad I am right now, it became too real for her. When I did see her and met her family last Friday, she'd had some time to think about our conversation/texting marathon. I am amazed at how well she's grown up.

Point is-I always had students asking why I was sick so much, was absent so often.....the questions were daily. I never told any of my students anything until I 'retired' from disability. She was grown and still had trouble. I think it also has to do with not just how much info you share & if they can access materials that are age-appropriate, but also with how sick you are, if there are other illnesses at play....they can always tell if you are hiding something, and if you are keeping back info when you do share.

I agree-look at IDF's website for age-appropriate educational materials. The drug companies also can send things, like toys, etc.

Good luck...Shoshi

i am a mom of 6, and a retired teacher....kids know something whether you tell them or not they hear things we think they are out of ear shot...i have found being honest is best and giving info age appropiate it the best route....often when they dont have the facts they imagine something much worse...IDF has a great children's book you can order for free... my sister uses it in her classsroom...her students know i have cvid and when i visit they know to stay away if they arent feeling great...when i taught 4th graders i read the book to them so they knew why i was out sick often....i feel it made them very compassionate and they leaned a great lesson in accepting differences in others...i was honest with my admin, co workers, parents, and students... of course i didnt tell all until i proved myself and everyone knew i was a dedicated teacher....i wouldnt disclose it at my interview process, but after proving myself to be dedicated i had no problem sharing my story...but everyone is different...my daughter with cvid tells very few people only ones that have to know...which for her is the right thing to do she is in pharm school and doesnt want any doors closed as she chases her dreams!

Interesting how many of us have similar stories:) I am a parent and a teacher as well. When I was still teaching, I would have to take a day off per month for infusion. I usually taught a MWF schedule at my university so I would infuse on a Thursday and recover on a Friday. I had the whole thing planned into the syllabus for the semester. On the first day of classes I would just tell the students, briefly, that I had to take medical therapy on those days for my immune system and that is knocked me back a bit. Sometimes, a student would worry and ask me more about it. It would always be interesting because I could tell when there had been some sort of discussion going on about it. The student who asked the question clearly went back and reported in to the others. It was so sweet. I generally try to be pretty open with my own children. However, I am sometimes scant on details. I have asked them each, "what do you want to know?" and they tell me. Each child is different. My daughter prefers to know just the barest bit. My son, on the other hand, is like me, he wants to research the issue. It is a family systems issue because we are social creatures and live in groups. It is a tough balance but one we have to strike. It is so nice to read about how all of you handle it!