Having Children

[Evie]

Patricia, I remember when i was a teen going through this. For quite a few months i could only eat rice and fruit juice. Previously i had LOVED icecreams and cakes and pizza etc. For some reason i would always ask my mum if i could eat things, i knew that the answer would be no, but i wanted someone to get cranky at. I wanted some outside force to be the one stopping me from enjoyment so i could be mad at them. I was struggiling to know where to aim the anger or blame. I know it sounds really stupid, and i still get annoyed every now and then but thankfully i got over using my mother as the sounding board of my frustration.

I realise your daughters anger is over much more than ice cream.(as was mine obviously... ice cream and cake was just what brought it to the surface) However maybe its just a similar thing, maybe she isnt really mad at you, she is mad at her situation and you are unfortunately the target of her frustration.

Luckily i grew up and realised my health is my responsibility. Its just hard as a teenager as when you are younger your mother always looks after you when you are sick. Usually as a child you recover from your flus/colds etc. It can be a tough jump when all of a sudden your mum cant fix it all for you.

I dont know your daughter or you of course so obviously i dont want to assume to know whats going through your minds. I am just speaking as a teenager who went through CFS and OI. There is alot of anger there and i did occasionally take it out on my mother, but deep down i knew it was not her fault. I just didnt know how else to vent it at the time as i didnt have the energy to punch walls or scream.

I hope the situation improves for both you and your daughter.

[PattiL]

Hi everyone,

Patricia, I'm so sad to hear that your daughter blames you. Does she have any siblings? I know my sons have helped my daughter tremendously with her outlook on so many things. Is she willing to talk to other teens with the illness? There's a great site for teens, I can't think of the name of it offhand, maybe someone else can. (Is it part of the pediatric network?) My daughter was also homebound for more than a year and had to be home tutored, missed her entire sophomore year of high school. It was a sad time b/c all her high school "friends" (and I use that term lightly) all dropped out of sight. Once she was able to start at the community college, she had to start all over.

I just thought I'd put in my two cents as a caregiver, not someone inflicted with the illness. When my husband and I decided to have children I was very concerned about passing on any bad genetics through his side of the family. He had a sister who passed away at 6 years old who ultimately died from polycystic kidney disease, she was also severly retarded, deaf and blind (this was 40 yrs. ago).

We had genetic testing for both of us at a major hospital (university Hospitals in Cleveland) and were BOTH given the ok. My husband was not a carrier for any of the illnesses that his sister had. I got pregnant with my twins, they were born prematurely (at 30 weeks) and were in the hospital NICU for approx. 6 weeks. My son is fine, but Chrissy was dx'd with POTS at 15 1/2 yrs old in 2001. It started after she had a bout of broncitis that wouldn't go away. Did she have symptoms of POTS prior to this--looking back there were a few unexplained episodes she had, but it became full blown in 2001. My younger son is 16 yrs old, had chronic stomach problems for about 10 years, then they mysteriously disappeared last year. Did genetic testing miss something, or did she get POTS after a viral infection. We don't know for sure. I've asked the Dr.'s about her being premature--could it have anything to do with POTS? They don't think so.

Everyone is different and entitled to their own opinion, but I would NEVER, NEVER, EVER change my decision about having children. Does Chrissy have some really***** days when everyone else is doing something and she's sitting home with me, of course, but luckily she'll just read or talk on the computer for hours and not complain too much. I've been blessed that she's always been my 'happy' child. This illness has definitely made her a much stronger, more mature young lady. I wish she didn't have it and I did, (sometimes the guilt is overwhelming wondering 'what if' ) but wishing won't change anything so I just try to help her as much as I can. And yet, I have no regrets about having her or my other children. I actually don't know what I'd do without them.

I feel for anyone who has to make this decision, it is very difficult and personal. Chrissy herself is worried about the future and having children. The actual pregnancy and childbirth scare her to death, not to mention the child-rearing and hoping you don't give your child this illness. At this point when I ask her what she'll do, she says she can't imagine life wihout her own children. She and her husband will have to make that decision when it comes time.

Take care everyone,

Patti

[Evie]

Patti! I was 6 weeks prem, got broncitis every year for about 3 or 4 years (had to go on fludrocorisone for it once and was never the same after that) then caught glandular and from then on its been a real struggle.

Your daughters start of her illness sounded familiar to mine so just thought id share that (however i think you are right that it could just be a viral thing and the continuious sickness lowerd the immune system allowing for more virus's to get in)