November 19, 2010
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quiet
Its going to be a quiet day today. Just Samuel and I all day.
Rob took the other kids to Olympia baton. I stayed home as Samuel has JR High basketball practice. We can’t leave him home by himself for 18 hours LOL. So I got up got the kids dressed, drove the excursion up the hill to get Rob at work. He jumped in the drivers seat, and dropped me off in the driveway and he’s off.
Samuels watching morning cartoons, and I’m cupping my mountain dew. I told him if he wanted breakfast he could scramble it himself. So far he’s not. LOL
Jamari loves to cook eggs. He’s started making egg sandwiches at night for any takers as a midnight snack. He’s quite good at it.
I took Rainee to the doctor yesterday. I’m rather frustrated with the whole experience. She came back on twice a day oral steroids for the next five days, and the threat of going to the hospital for a couple days of observation. I can’t seem to get the allergy testing that I want. I keep believing if we could find what she’s allergic to it, would lessen her symptoms. But so far no one is listening to me. I guess I’ll have to fight a bit louder…I’m so torn. The doctors that have served Rainee have been marvelous. But at this point they really do not know how to help her. And I wondering when I start looking for alternatives. The last couple months have been so awful for her. And she’s never truely been healthy all of her life.
I told the doctor I’m getting tunnel vision. I can no longer come up with coping skills for her, becaause I’m so overwhelmed by how frequently she’s MISERABLE.
If we do end up at Childrens for the several day observation like the doctor wants…I’m going to have Rainee eat everything we suspect of bothering her. Cause I want them to see what she looks/acts like when she’s doing CRAP.
The lung function test shows her lungs have decreased by 2% which doesn’t sound bad until you realize that’s from 61% to 58%.
Comments (10)
I hope you can get to other doctors. Is there a children’s hosp in WA where you can get really good specialist? This is so scary as well as being so frustrating. Prayers!
We work with a pulmonologist in Seattle at the Seattle Childrens clinic, which is number 8 in the U.S. for treating childrens asthma. And if we did the hospital stay, we would go there, the doctor said there’s no point going to the local one.
Yeah that is low…just a little lower than mine without meds. Is that 61-58% without meds when she’s having the symptoms like an allergic reaction or all the time? I average somewhere in the upper 60s (maybe even mid 60s but I haven’t seen any tests without meds in some time. lol) I’m on symbicort and that gets me back up to my normal. Before that I was on combivent about twice a day, more if I was having a bad day. The symbicort replaced it and I have a 2nd back up one to use if I need more. But I’m not allergic to things per say lilke foods and stuff. I just have a list of things that irritate my lungs for whatever reason. Cleaning products, things like that. It also gets worse a few days before I start.
What is their reasoning for not doing allergy testing? Wouln’t they want to know if something is causing the problem?
that’s with meds…she’s never not been on them.
And she had oral steroids in her system a week and a half ago. We did the major blood test for allergys last February. And it showed nothing, but everything I’ve read says it can fail a LOT. And the pediatrician agreed with me about that–although the pulmo did not. I don’t know why they won’t listen to me about allergys…doctors have this desire to divide the body into little pieces and treat each symptom differently…but the body is connected, and they miss it.
I’m amused that yours gets worse before you start…because mine does too. I’m not on anything, but I always have mild irritation the four or five days before I start. Strange huh?
Yeah the first time it happened was when I got pregnant with Jesse which is when I first landed on meds for the long haul. That’s when I suspected asthma had snuck in there but there is no way my dr. could confirm it with my xrays and numbers as they were already. lol And like he said, the meds to treat it are the same. The first time it happened before I started I freaked out thinking I was pregnant. Now I’m used to it and just make sure I have the back up med available. lol But there are days I have more problems and I just don’t know why… I can’t pinpoint a specific thing causing it. I thought it may even be the weather change because a cold front had come through around the time I started feeling it the last couple days or so–kinda like people with arthritus can tell the weather is changing by flare-ups.
I do know humidity will do it if it’s too hot, but cold humidity doesn’t seem to bother me (I guess growing up in WA I was well accustomed to it. lol) Do you know of any non-food things that could be setting her off as well?
Has Rainee every been on something like symbicort full time? If so did it help any? My dr had to talk me into after a bad experience with advair and the dr. that perscribed it. lol
Rainee is on two kinds of allergy meds. Two stomache meds. And Flovent for the asthma. But if you don’t know the triggers and how to avoid them…what is the point of those meds. Or are there no triggers…which seems doubtful.
Environmentally we have too many animals. But she’s had attacks in our car–the animals are NEVER in there. And in motel rooms.
Well, you don’ thave to know all the triggers, you’re just treating the symptoms. Like I said in my case, I don’t know why I have a worse time than others and I may never find out all things that trigger it. I have critters too–they don’t bother me themselves except when the catbox is due for a cleaning. lol I try to keep it up, but we get busy, I forget, then I’m trying to figure out why I can’t breathe as well all of a sudden. Then I kick myself for forgetting and we start all over. lol Cars and motels rooms might be hard to figure out what it is… I know last winter we were running a space heater and it took me forever to realize that was bothering me. I couldn’t figure out what in the house had changed until I sat next to it all day once and it finally hit me why. lol Then I had to decide if I liked breathing or staying warm more.
Or just live upstairs where it stayed warm enough without it.
Flovent is the one that other dr tried to get me to use after the advair incident. I never did, I went back to my old dr. that made sense and would listen to me. lol
I guess my issue, is I hate just treating the symptoms…because trust me if I could find some triggers to avoid I WOULD. LOL. Although the critter issue would be hard…because my oldest is already resenting Rainee, and if we took her pets away…she would probably never speak to any of us again.
My mom *every* time the issue comes up wants us to get rid of the pets. But the asthma still exists away from house and home. And when she as tiny we had NO pets, and she still got it…so I just think that’s it. Oh and she has a dog and cat she LOVES as well, and would never forgive me if I threatened there existence.
I *do* know she had a awesome summer. Three months with maybe rescuing her twice. So maybe we should move to somewhere the sun always shines. LOL Pocatello comes to mind, cause Rob’s family is there. But I *hate* it there. I dislike the desert big time. LOL
summer… do you still have a wood stove? I get such horrible asthma right now because of the wood smoke. I HATE IT!!! Vitamin D defieciency can cause many of the asthma, stomach like symptoms, aches, pains etc…. Did you know that? I was tested for it and I have VERY low vit. D
We do have a wood stove. But we don’t use it a ton. Mostly we rely on electric, a few times in the mornings when its very cold we get the stove going–and its late afternoon that Rainee tends to get icky. Last winter we used it more…and Zeria’s asthma instantly got AWFUL, so we try not to use it too much…besides which I’m lazy and forget to keep it going when Rob is gone. LOL
I didn’t know that about vitamin D…thats intriguing, goes to research.