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I really do need to stop thinking about anything…good or bad. Today, I was thinking. I was even thinking about posting what I was thinking. I was thinking that, even though my daughter still 'looks' and 'acts' about the same as the last time she saw the AP dr., we haven't had any fever or rash or peeling or just plain weird episodes in quite some time. I was thinking that was good. So good, I was thinking about posting it. Because good is good, right?
When I picked her up from school, she said she itched. Really itched. Arms and legs. Itching like crazy. Hadn't eaten anything different or played with anything new at school. By the time we got to big sis's school, she was wiped out looking and saying she wanted a bath when we got home. By the time we got home, she had fallen sound asleep. Both arms were bright pink and her thighs had red bumps.
Didn't wake up while we examined her, wouldn't wake up for dinner, but the rash faded as she rested.
Got up thirty minute ago (close to, um, bedtime, sigh) and seems totally normal. I'm not going to think about it anymore!
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hi Suzanne, I understand a little bit how you feel. My youngest developed what we thought was mild asthma around 5 y/o. What we didn't know was that he looked the same whether he was having a mild or severe attack, he had cough variant asthma, so he did not wheeze. We found out when he was 7 and went into status asthmaticus. He was in the PICU for a week, but the doctor's couldn't believe how sick he did NOT look, he was talking in prose when he shouldn't have been able to say more than 1-2 words. But his pulse ox was in the 80s and x-rays showed 3 areas of collapsed lung. He got better, but the other thing we found out is that he takes a long time to respond to meds. So we had an asthmatic who you couldn't tell how sick he was even with a peak flow meter, and didn't respond to meds when he became serious. He was never hospitalized again because I became so hypervigilant; and every time I took him to the ER when he looked “okay” I had to fight with the docs not to judge how sick he was until they checked his pulse oxygen. They always apologized and gave him the treatment he needed.
long story short, it changed the way I thought and acted. I'll always feel guilty about the PICU, I should've noticed something was different, etc. I had nightmares that he died for a year after the PICU incident, and I never slept well. Every cough or sneeze was analyzed. I slept with one eye (and ear) open, and since infections were one of his triggers, I took him to the clinic at the first sign of infection to prevent an attack. Like you, I was always thinking.
Fortunately, as he grew older his symptoms disappeared, and now he has allergies but has had no asthma symptoms for about 6 -7 years. He'll be 20 in July.
This has a happy ending, it's just taking me forever to get to it.
He's now in college at UT in Austin, TX and I'm in Tucson. I don't worry about him anymore, even if he gets a cold. Despite my overprotectiveness, he is an independent, confident young man; works, goes to school full-time (math major_sorry, I have to brag;)), and pays his own bills and tuition. His demeanor is more serious than most kids his age, like most children who grow up with a chronic illness; but he has a healthy sense of humor and has as much fun in life as the next guy. Heaven help me, he even has a girlfriend. Imagine that, a mathgeek with a white board and a girlfriend!We parents of chronically ill children walk a fine line btn being overprotective and allowing independent behaviour. There's no secret formula, you just do the best you can. The day I sent him off to a camping/hiking week with the scouts was one of the most difficult in my life- but he was fine. Yea, I packed too many clothes and meds, which he never even used, not even the sunscreen. BUT we both survived. I think you're managing wonderfully. From your past posts I know that you let your daughter choose her activities for the most part. I don't believe it's possible for any parent to stop thinking or worrying about their children, but I also don't believe you're creating bad karma. It is possible for some parents to be too overprotective and create problems that aren't there, but I honestly don't believe you fall into that category.
As for the rash, I'd do just what you're doing; watching it but not making a big deal about it to your daughter. Hopefully it's just a blip, a weird virus going around school or something. Adjust your thinking if you feel it's getting the best of you, but skip the guilt- no mother is perfect!
linda
Suzanne:
I am right there with you, I feel like everytime I talk about how well Jess is doing, she comes up with something new for me to worry about. I saw her for Mother's Day weekend, her fingers were a tad bit swollen, and she has the beginnings of a new ulcer. Well, I didn't panic as much as I would have a year and a half ago, I have grown some, but I did have to ask. Well, unlike your little one, I can no longer monitor my child. We both concluded that her MAJOR PULSE DOSING Schedule of one ot two minocin a week (if she remembers) just might have something to do with the bit of swelling and tiny ulcer. I told her that she'd better be prepared for a lecutre from Dr. F when we see him in two weeks. Dr. F will probably come to learn that like mother like daughter we are not very compliant patients!
Sorry that your sweet little one had a difficult day with the itchies! It is just to keep you on your toes, there is no rest for the….mother!
Cheryl
oh suzanne, we all have that feeling….everytime you think, or worse yet say, that you are feeling better….you can just hear the other shoe drop. it sure seems that way. hope today is itch/rash free.
hugs, sue
Thanks, everybody!
Since she slept so long, we went outside (in the dark!) and she ran around a lot, playing 'Catch My Shadow' with her big sis under the glow of the security light and I decided there was nothing to worry about.
But then when she took a bath, she said it hurt when water got on her arm near her shoulder. She had small red streaks there. When in doubt, hydrocortisone…..
No complaints this a.m. and we were off to…dance recital rehearsal. As many of you may know, there is nothing on the face of the earth itchier than a dance recital costume. Even the toughest-skinned will suffer wearing sequins, tulle, netting, and not one thread of natural fiber!!!!!
She did great! And looked beautiful, too, I might add.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
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