It's probably nothing. In fact, I'm SURE it's nothing...OK, I guess it's that I HOPE it's nothing. I'm trying not to freak out.
Mariella was sick two days ago. One and done. Fine the rest of the day. She ate well. Typical...we've been waiting for a good "blow". I wasn't concerned.
Until this morning...when she threw up again. Is two episodes in 2 days really a big deal? I don't know...but when this whole thing started, she was throwing up every 2-3 days. I guess we'll have to see what happens...I'm just not used to having her blow so close together anymore.
On a less stressful note...it has been fabulous to listen to the girls playing nicely all day. They really do miss one another when they are apart. They may not always get along, but the love they have for each other is SO very apparent.
Sunday, February 28, 2010
Friday, February 26, 2010
Argh...Parents just don't understand!!!
Mariella is HOME!!! I LOVE, LOVE, LOVE that my parents are willing to take her for the week, but I am sure glad to get her back when vacation is done.
According to Mariella, Grammy and Grampy were compliant with meds...THAT'S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I've told her she needs to.
According to THEM, she didn't cough at all (I'm not sure I believe it) Mariella said she was a little tight, but didn't cough. She didn't tell them because she was afraid they wouldn't let her play.
The place they go has a great recreation room in the basement. Lots of open space, and it's really good for running around. I did it when I was a kid, and I'm glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.
I get so so so tired of my parents telling me how "great" she does when she is with them. It makes me feel like they think I'm making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren't going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet...not icy cold. It's just so flipping frustrating.
My parents also need to learn that Mariella, especially, will rat them out if they don't tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only "threw up the once" It's not surprising, really...I've been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. Mariella, however, told me she threw up "a couple times." The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It's about 50/50, whether or not she flares after an episode.
I can't believe my father forgot to bring his camera. No skiing pictures this year.
(and, about 25 minutes after I posted this, she started coughing. Somehow, I don't believe she didn't cough the whole time she was there. It's a nice deep cough, not quite barky...so I'll see where it goes.)
According to Mariella, Grammy and Grampy were compliant with meds...THAT'S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I've told her she needs to.
According to THEM, she didn't cough at all (I'm not sure I believe it) Mariella said she was a little tight, but didn't cough. She didn't tell them because she was afraid they wouldn't let her play.
The place they go has a great recreation room in the basement. Lots of open space, and it's really good for running around. I did it when I was a kid, and I'm glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.
I get so so so tired of my parents telling me how "great" she does when she is with them. It makes me feel like they think I'm making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren't going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet...not icy cold. It's just so flipping frustrating.
My parents also need to learn that Mariella, especially, will rat them out if they don't tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only "threw up the once" It's not surprising, really...I've been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. Mariella, however, told me she threw up "a couple times." The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It's about 50/50, whether or not she flares after an episode.
I can't believe my father forgot to bring his camera. No skiing pictures this year.
(and, about 25 minutes after I posted this, she started coughing. Somehow, I don't believe she didn't cough the whole time she was there. It's a nice deep cough, not quite barky...so I'll see where it goes.)
Wednesday, February 24, 2010
Just a rant...
http://www.theasthmamom.com/2010/02/24/michelle-obamas-lets-move-and-wishing-for-a-childhood-illness-equivalent/
This was a post this week on one of my favorite blogs to follow. Amy had written earlier that it would be nice if Michelle Obama took Childhood Asthma as her issue. After all, she has a child who suffers from asthma, and it's somewhat of an "invisible" disease. Unless one has lived the all-night coughing fests, the trips to the ER when your child can't breathe, or any of the other "things" that parents of children with asthma have to deal with...it's too easy to say, "it's just asthma."
First Lady Obama has chosen childhood obesity as her cause. Yes, it's alarming how many children in the US are obese. It's MORE than alarming how many children are being diagnosed with Type 2 Diabetes. However, I have a very, very hard time feeling sorry for parents with obese children. The reason? With the exception of a very small population of obese children...the parents DID this to their children.
Parents who frequent a different drive through every evening for dinner. Parents who ply their children with crap all day. Parents who believe that food is love. Parents who believe that it's appropriate to feed a 5 year old child an entire box of mac and cheese, or get mad at the nanny for not feeding a 3 year old a THIRD grilled cheese sandwich. These are also the parents who look at the doctor and say, "I don't understand WHY my child is overweight."
Parents of asthmatics (or any other chronic childhood disease) didn't make the choice to have a child with a chronic disease. It's not like we sat there one day and said..."hmmm, I think I'll decide to have a child with asthma." Parents with obese children make a choice every day. A choice to feed their children a healthy diet, or to feed them crap. Or even just to feed them enough of a healthy diet, or too much of one. There is such thing as too much of a good thing. Even if you're feeding your kid whole grains and low sugar...if they are eating too much of it, it will still turn to fat.
On NPR it was stated..."Mrs. Obama attributes her sensitivity about childhood obesity to her own days as a working mom (married to a busy, political-type, rising-star of a husband). Before moving to the White House, she had little time to prepare healthy meals for young daughters Sasha and Malia." I did work full time when A was small. In fact I worked full time until she was 3 years old. Sure, she came to work with me, but I was still outside the home 45 hours a week. I still managed to feed A healthy meals. I prepared things ahead of time, I used the crock pot and the pressure cooker. I'm not sure why it is so hard for some parent to make a healthy meal. Perhaps it's because it's so much easier to make excuses.
Perhaps I'm more sensitive than most. My child takes high doses of adult strength medications to give her what little control she has. These are the medications that have the warnings on the TV commercials about one of the side effects of the medications being death. I would love to have more research into the causes of asthma. On why some people respond so wonderfully to medications, and why some people don't respond well, or at all. I'd love to have more awareness out there. Too many people think that asthma is no big deal. Sure, people with asthma might have to take the blue puffer, or the yellow and orange one...but...they wheeze a little, they might cough...they stick the puffer in their mouth and they're fine. My daughter ISN'T fine. I don't count the good times in terms of seasons or months. I get excited if she goes a week without needing a rescue overnight. I have yet to go a full week without her needing rescue during the day. The twice a week "benchmark" of control...I laugh at that. (BUT...it's just asthma...people don't DIE of asthma anymore...do they? YES, someone asked me that question...they were a bit shocked when I looked it up and told them that 11 people die every DAY from asthma. That 300 CHILDREN die each year from asthma.)
Michelle Obama had a chance to bring the issues of those of us parenting children who have asthma right to the forefront. She had a chance to perhaps make a difference in the lives of the approximately 7 million children in the US with asthma (and their parents.) I really feel like she dropped the ball on this one. She had the chance to bring awareness, and with awareness comes research dollars and with research dollars comes research, and better medication and treatments.
AND, on a total side note...it occurred to me today that most people's understanding of asthma comes from the drug companies commercials. It's been quite funny watching the Olympics with M. Normally, she watches children's programming, which is generally medication commercial free. So, she's been noticing the Symbicort commercials, and every SINGLE time one comes on, she says..."Hey..THAT'S MY PUFFER" I also have to be careful of my older daughter watching the Advair commercials, because she has been prescribed Advair for her sick plan...and they use the "asthma related death" phrase several times in that commercial, and A doesn't usually miss stuff like that.
Tuesday, February 23, 2010
Nothing new to report....
I'm just missing my girlie.
A. is also doing wonderfully. It's sometimes hard to determine what is "normal" 9 year old girl behavior, and what is diagnosis related. She really DOES seem to be trying to regulate her behavior...if I could only get her to regulate her smart mouth.
Yesterday, homework time ended with her in tears, and me frustrated beyond belief. I totally GET that math is hard for her...but learning her math facts isn't an option. She really HAS seen the difference in how well she does in memorizing her states and abbreviations when she started to practice it every day...I only hope that she also sees results in practicing her math facts too.
Things are quiet here, and I haven't heard anything from the frozen north of NH...so I'll assume that everything is going well there, too.
A. is also doing wonderfully. It's sometimes hard to determine what is "normal" 9 year old girl behavior, and what is diagnosis related. She really DOES seem to be trying to regulate her behavior...if I could only get her to regulate her smart mouth.
Yesterday, homework time ended with her in tears, and me frustrated beyond belief. I totally GET that math is hard for her...but learning her math facts isn't an option. She really HAS seen the difference in how well she does in memorizing her states and abbreviations when she started to practice it every day...I only hope that she also sees results in practicing her math facts too.
Things are quiet here, and I haven't heard anything from the frozen north of NH...so I'll assume that everything is going well there, too.
Thursday, February 18, 2010
A new record!
We made it one whole week with no need to neb in the middle of the night. However, the streak was broken last night.
Stupid me...I had gotten complacent. I didn't move the upstairs neb machine back into her room, and I didn't have meds in her room, ready...so, it wasn't an easy "get up and do it in my sleep" kind of thing. I had to get the machine...and oops, I took that cup to our friends house, because it was clean, and the other one was waiting for the dishwasher...and crud, the meds are down stairs. So, by the time I was done with the treatment, I was WIDE awake.
On a "normal childhood" note...It's SKI WEEK!!!! The girls and I are heading to my parents...A will go skiing with Grampy tomorrow...and we'll head home. M will be spending the week with Grammy and Grampy in the mountains...and she'll get some skiing in with them. She's healthy-ish...so it should be a good trip. If nothing else, the extra week off of school will help her out. She's finally over the sinus infection, and mostly clear. It should be an easy week for my parents. I wasn't diagnosed with asthma until I was in high school, and it wasn't as scary as M's...but they really do well with it. Once I explained that the maintenance puffers are for every day, not just if you think she needs them. They are fabulous with med compliance, and aren't scared to keep her.
Hopefully, I'll have some pictures of them skiing to post next week.
Stupid me...I had gotten complacent. I didn't move the upstairs neb machine back into her room, and I didn't have meds in her room, ready...so, it wasn't an easy "get up and do it in my sleep" kind of thing. I had to get the machine...and oops, I took that cup to our friends house, because it was clean, and the other one was waiting for the dishwasher...and crud, the meds are down stairs. So, by the time I was done with the treatment, I was WIDE awake.
On a "normal childhood" note...It's SKI WEEK!!!! The girls and I are heading to my parents...A will go skiing with Grampy tomorrow...and we'll head home. M will be spending the week with Grammy and Grampy in the mountains...and she'll get some skiing in with them. She's healthy-ish...so it should be a good trip. If nothing else, the extra week off of school will help her out. She's finally over the sinus infection, and mostly clear. It should be an easy week for my parents. I wasn't diagnosed with asthma until I was in high school, and it wasn't as scary as M's...but they really do well with it. Once I explained that the maintenance puffers are for every day, not just if you think she needs them. They are fabulous with med compliance, and aren't scared to keep her.
Hopefully, I'll have some pictures of them skiing to post next week.
Wednesday, February 17, 2010
Allergy Testing...Round ONE...CHECK
We brought A to the allergy doctor today. Both the girls want a cat, AND we have at least one mouse (I can be optimistic that it's just one mouse..right?) that seems to be avoiding the trap AND the D-Con we've put out for it...so, a cat would be a nice addition to the family. However, I felt it would be irresponsible to introduce a cat to the house when I don't know for sure how it will affect the girls.
We had 2 cats when A was an infant. We were also frequent fliers at the local ER for respiratory trouble. Once we surrendered the cats to the shelter, her breathing got SO much better. Apparently, the 2 situations were entirely unrelated. A had RSV when she was an infant, and spent 12 days in PICU. It's entirely possible (read-probable) that the decrease in ER visits had nothing to do with the cats leaving the house and had everything to do with her lungs healing from the virus.
Miss A was a trooper girl. She got the full panel of allergens...both her arms were covered with little dots. She only reacted to a couple of trees. So...first child...clear for feline.
Dr. W is an Allergy doctor and also an asthma doctor...though he is NOT a pulmonologist. He is good for "run of the mill" asthma...but I know for a fact that he would refer M out. SHE is beyond his scope. Anyway...in talking about history, I didn't realize that the fact that A has had pneumonia 4 times makes her a recurrent pneumonia sufferer. Dr. W considered her one, and we walked out of there with a firm sick plan to implement with any cold. I don't tend to be as proactive with A when it comes to colds, because she doesn't always have trouble. This plan should prevent her from getting into trouble at all.
Dr. W wanted to know how I know if A is having a flare or if it's pneumonia...our conversation sounded like this...
Dr. W: "So, how do you know if it's a pneumonia cough or an asthma cough?"
Me: "My stethoscope"
Dr. W: "What does pneumonia sound like?"
Me. "It sounds like rice crispy's in her lungs"
Dr. W: "OK...you know what a pneumonia sounds like"
He also said that I know more about asthma than most doctors. I'm sure that's a compliment to ME, but what does it say about "most doctors"?
So, A got her allergy testing done, she survived (and got to pick out a game at Wally World as a prize)...she impressed the doctor with both her reading and conversation skills...and also was bouncing off the walls because we didn't have her Adderall in the house this morning...if I was ever questioning our decision to start the meds...I am SO not questioning that any more...I'm exhausted just watching and listening to her.
We had 2 cats when A was an infant. We were also frequent fliers at the local ER for respiratory trouble. Once we surrendered the cats to the shelter, her breathing got SO much better. Apparently, the 2 situations were entirely unrelated. A had RSV when she was an infant, and spent 12 days in PICU. It's entirely possible (read-probable) that the decrease in ER visits had nothing to do with the cats leaving the house and had everything to do with her lungs healing from the virus.
Miss A was a trooper girl. She got the full panel of allergens...both her arms were covered with little dots. She only reacted to a couple of trees. So...first child...clear for feline.
Dr. W is an Allergy doctor and also an asthma doctor...though he is NOT a pulmonologist. He is good for "run of the mill" asthma...but I know for a fact that he would refer M out. SHE is beyond his scope. Anyway...in talking about history, I didn't realize that the fact that A has had pneumonia 4 times makes her a recurrent pneumonia sufferer. Dr. W considered her one, and we walked out of there with a firm sick plan to implement with any cold. I don't tend to be as proactive with A when it comes to colds, because she doesn't always have trouble. This plan should prevent her from getting into trouble at all.
Dr. W wanted to know how I know if A is having a flare or if it's pneumonia...our conversation sounded like this...
Dr. W: "So, how do you know if it's a pneumonia cough or an asthma cough?"
Me: "My stethoscope"
Dr. W: "What does pneumonia sound like?"
Me. "It sounds like rice crispy's in her lungs"
Dr. W: "OK...you know what a pneumonia sounds like"
He also said that I know more about asthma than most doctors. I'm sure that's a compliment to ME, but what does it say about "most doctors"?
So, A got her allergy testing done, she survived (and got to pick out a game at Wally World as a prize)...she impressed the doctor with both her reading and conversation skills...and also was bouncing off the walls because we didn't have her Adderall in the house this morning...if I was ever questioning our decision to start the meds...I am SO not questioning that any more...I'm exhausted just watching and listening to her.
Sunday, February 14, 2010
A fabulous trip to Boston
I dragged...er....brought my family to Boston today. I am a HUGE (all caps, double underline) Harry Potter fan, and it's coming up on the last few weeks of the big HP exhibit at the Boston Museum of Science. So, we bundled up and went out.
We got about 3/4 there, and M started complaining about her belly. So, I chucked a bucket back at her, and prayed. She doesn't get car sick, exactly...but if her belly is bugging her, going on a car trip is a good way to set her off. Thankfully, it was a false alarm...though, I don't doubt she was feeling pretty sour.
We parked at the T stop, and walked to the train. It was COLD. We only needed to ride for one stop...then another walk in the cold air. BUT, so far, so good. M was breathing fine, Daddy was really nice and carried her. (I guess that's one advantage of being the size of a 3 year old...she can still be carried)
We got there, and we checked out some of the exhibits, then headed into the HP exhibit. It was SOOOOO awesome. A and I LOVED it. M really didn't care so much about it. Then, we went back into the museum, where the girls touched everything, and of course, I forgot to throw sanitizer into my purse. I'm crossing my fingers that no one gets sick.
Then, back on the train, and a little bit of a longer walk to lunch. It was time for Atrovent, so I was getting her puffer ready, when she gave me a funny look, coughed a few times and sort of gasped out..."I think I need my blue rescue puffer." I was prepared, so Xop first, then Atrovent. My mother always told me that I wasn't supposed to "medicate" in public. I'm not sure why...but that is always in my head when I have to give M her puffers in public.
Apparently, M was feeling better, because she ate so much lunch. It was very tasty...and one of her favorites. I'll take good eating were I can get it...though I did have to stop her, because I didn't really think I wanted the chicken fingers to make a repeat performance. By the end of lunch, she was looking droopy and wanted to cuddle.
We walked back to the train, rode the few stops, and got back in the car. Of course, THEN...A started coughing. I asked her if it was a drip...she's off her allergy meds in preparation of allergy testing...and she said...I don't think so, I think it's my lungs. So...I gave HER a couple of puffs of Xop...and her cough calmed down too. I'm sure it was due to the walking in the cold for her. She has reactive airways, and I'm sure they were just reacting.
All in all...a great day...mostly symptom free...since I don't ever really expect a totally symptom free day.
I would also totally recommend the exhibit, if given the chance. I almost decided not to go, but I'm SO glad I did.
We got about 3/4 there, and M started complaining about her belly. So, I chucked a bucket back at her, and prayed. She doesn't get car sick, exactly...but if her belly is bugging her, going on a car trip is a good way to set her off. Thankfully, it was a false alarm...though, I don't doubt she was feeling pretty sour.
We parked at the T stop, and walked to the train. It was COLD. We only needed to ride for one stop...then another walk in the cold air. BUT, so far, so good. M was breathing fine, Daddy was really nice and carried her. (I guess that's one advantage of being the size of a 3 year old...she can still be carried)
We got there, and we checked out some of the exhibits, then headed into the HP exhibit. It was SOOOOO awesome. A and I LOVED it. M really didn't care so much about it. Then, we went back into the museum, where the girls touched everything, and of course, I forgot to throw sanitizer into my purse. I'm crossing my fingers that no one gets sick.
Then, back on the train, and a little bit of a longer walk to lunch. It was time for Atrovent, so I was getting her puffer ready, when she gave me a funny look, coughed a few times and sort of gasped out..."I think I need my blue rescue puffer." I was prepared, so Xop first, then Atrovent. My mother always told me that I wasn't supposed to "medicate" in public. I'm not sure why...but that is always in my head when I have to give M her puffers in public.
Apparently, M was feeling better, because she ate so much lunch. It was very tasty...and one of her favorites. I'll take good eating were I can get it...though I did have to stop her, because I didn't really think I wanted the chicken fingers to make a repeat performance. By the end of lunch, she was looking droopy and wanted to cuddle.
We walked back to the train, rode the few stops, and got back in the car. Of course, THEN...A started coughing. I asked her if it was a drip...she's off her allergy meds in preparation of allergy testing...and she said...I don't think so, I think it's my lungs. So...I gave HER a couple of puffs of Xop...and her cough calmed down too. I'm sure it was due to the walking in the cold for her. She has reactive airways, and I'm sure they were just reacting.
All in all...a great day...mostly symptom free...since I don't ever really expect a totally symptom free day.
I would also totally recommend the exhibit, if given the chance. I almost decided not to go, but I'm SO glad I did.
Friday, February 12, 2010
Up is up...right?
M gained 2 ounces over the year. I don't trust this scale...and I don't trust 2 ounces...(TMI alert) because I don't remember the last time she pooped. It's very possible that she's going to poop today, and she'll have actually LOST weight from last year.
I'll admit, I was hoping (however unrealistically) for a 5 lbs weight gain.
Officially, she is hovering at about the 20th percentile. Under that is considered "failure to thrive" What kills me, is that she HAS dropped in percentiles. She was 50th/50th until she was 3...now, she's 6 years old, and has dropped to 20th. A is in the 50th percentile...she isn't the tallest in her class, or the smallest. I wasn't expecting M to be ginormous, by any means...she doesn't come from "ginormous" genes.
We'll be having a gastro appointment in a few months, and I take those measurements more seriously. If she has a gain there, I count it as a gain.
I'm trying not to let it get to me, but I'm feeling really sad. It doesn't matter how much I prepare myself for the reality of life with my chronically less than healthy kiddo...sometimes, it just comes in and kicks me.
On a somewhat related note...if the school nurse tells me one more time that she doesn't know what I'm talking about...M NEVER comes in to complain about her tummy...I'm going to scream. I should just keep MY mouth shut...but since I brought M in late, I popped in to the nurse to let her know that M had asked for a baby Tums this morning, which means that her belly was REALLY bothering her, since she doesn't typically ask for them. I just wanted to let Mrs. L know that if M came in, that I was home, and she could feel free to call me. HOWEVER, it was nice to hear that Miss A. has been making less field trips to the nurses office this year. I think her many sojourns there in past years have been when the "itchiness" got to be too much, and now that the ADDerall is doing it's magic, and she isn't "so itchy in her seat" she doesn't need to make the field trips to the bathroom and the nurse and to get a drink, etc.
I'll admit, I was hoping (however unrealistically) for a 5 lbs weight gain.
Officially, she is hovering at about the 20th percentile. Under that is considered "failure to thrive" What kills me, is that she HAS dropped in percentiles. She was 50th/50th until she was 3...now, she's 6 years old, and has dropped to 20th. A is in the 50th percentile...she isn't the tallest in her class, or the smallest. I wasn't expecting M to be ginormous, by any means...she doesn't come from "ginormous" genes.
We'll be having a gastro appointment in a few months, and I take those measurements more seriously. If she has a gain there, I count it as a gain.
I'm trying not to let it get to me, but I'm feeling really sad. It doesn't matter how much I prepare myself for the reality of life with my chronically less than healthy kiddo...sometimes, it just comes in and kicks me.
On a somewhat related note...if the school nurse tells me one more time that she doesn't know what I'm talking about...M NEVER comes in to complain about her tummy...I'm going to scream. I should just keep MY mouth shut...but since I brought M in late, I popped in to the nurse to let her know that M had asked for a baby Tums this morning, which means that her belly was REALLY bothering her, since she doesn't typically ask for them. I just wanted to let Mrs. L know that if M came in, that I was home, and she could feel free to call me. HOWEVER, it was nice to hear that Miss A. has been making less field trips to the nurses office this year. I think her many sojourns there in past years have been when the "itchiness" got to be too much, and now that the ADDerall is doing it's magic, and she isn't "so itchy in her seat" she doesn't need to make the field trips to the bathroom and the nurse and to get a drink, etc.
Thursday, February 11, 2010
M is meeting a new doctor tomorrow....
This should be interesting.
Our wonderful, wonderful NP left about 2 years ago. Last year, we saw one of the other docs in the practice. He is perfectly fine, but A is getting to the point where she doesn't want a man examining her, and it's just easier for both the girls to have the same doctor.
This is a new doc to the practice, so she has never actually MET M. Guess I should get the list of all her meds together.
I'm sure that the doc will ask M how she feels, and M will say, "oh, I'm fine" She always does.
I can't wait to see what her weight is...she hasn't really eaten in 4 days, her belly has been bothering her. I have my fingers crossed for a weight gain and some height gain...but I'm not holding my breath...since she hasn't grown in almost 2 years.
Our wonderful, wonderful NP left about 2 years ago. Last year, we saw one of the other docs in the practice. He is perfectly fine, but A is getting to the point where she doesn't want a man examining her, and it's just easier for both the girls to have the same doctor.
This is a new doc to the practice, so she has never actually MET M. Guess I should get the list of all her meds together.
I'm sure that the doc will ask M how she feels, and M will say, "oh, I'm fine" She always does.
I can't wait to see what her weight is...she hasn't really eaten in 4 days, her belly has been bothering her. I have my fingers crossed for a weight gain and some height gain...but I'm not holding my breath...since she hasn't grown in almost 2 years.
Tuesday, February 9, 2010
So, my kiddo is a little weird...
A couple of nights ago, M. was sleeping in our room. She started coughing, and rolled over. She popped her eyes open, and said, "Momma, I need a treatment." As I started to open the medication, she had rolled over, and gone back to sleep. She didn't cough the rest of the night.
I think she was dreaming about having an asthma attack...asked for the treatment in a half-asleep state. The cough itself might have been part of the dream.
M does seem to be doing well on the new med. She is still coughing a little bit, but nothing I feel I need to give a treatment for. Time will tell how it's really working, but for now, I'll take what we can get.
I think she was dreaming about having an asthma attack...asked for the treatment in a half-asleep state. The cough itself might have been part of the dream.
M does seem to be doing well on the new med. She is still coughing a little bit, but nothing I feel I need to give a treatment for. Time will tell how it's really working, but for now, I'll take what we can get.
Monday, February 8, 2010
So....on a completely different vein....
How 'bout dem SAINTS!!!!!
We had a fabulous day with good friends, watched a great game...enjoyed the food and fun. It was a party weekend, M's sixth birthday party on Saturday...Super Bowl on Sunday.
M seems to be doing pretty well on the new med. She's coughing...but last night, she woke up and asked for a treatment, but then fell asleep before I even got out of bed...and no more coughing the rest of the night.
Of course, I feel like I'm starting a good flare. I'm working on prevention, hoping that I can avoid it entirely...but, it's that time of year.
We've got allergy testing scheduled for both the girls. They have been asking for a pet, but we've suspected allergies...so before we decide whether to get a cat or not, I have to make sure that neither of the girls will suffer for having one. A...who is nothing if not practical said, "am I going to get all those pricks? Good...I wanted to get that...maybe THEN, we can make my bunny nose and drips stop. It's really about time you did it, Momma." Of course, she could have been nicer about it, but that just wouldn't be A.
We had a fabulous day with good friends, watched a great game...enjoyed the food and fun. It was a party weekend, M's sixth birthday party on Saturday...Super Bowl on Sunday.
M seems to be doing pretty well on the new med. She's coughing...but last night, she woke up and asked for a treatment, but then fell asleep before I even got out of bed...and no more coughing the rest of the night.
Of course, I feel like I'm starting a good flare. I'm working on prevention, hoping that I can avoid it entirely...but, it's that time of year.
We've got allergy testing scheduled for both the girls. They have been asking for a pet, but we've suspected allergies...so before we decide whether to get a cat or not, I have to make sure that neither of the girls will suffer for having one. A...who is nothing if not practical said, "am I going to get all those pricks? Good...I wanted to get that...maybe THEN, we can make my bunny nose and drips stop. It's really about time you did it, Momma." Of course, she could have been nicer about it, but that just wouldn't be A.
Sunday, February 7, 2010
M's Story...
I had someone email me and ask what exactly was going on with M. I figured I would blog it out.
The simple answer is that she has asthma and GERD. However, it's not really the exact answer. The REAL answer is that we don't know. She has "something" that may have both gastro and pulmonary involvement. (or they could be entirely unconnected) She has been tested for Cystic Fibrosis, because her lungs behave like a CFer's lungs, and adding the gastro component is compelling. Compelling enough that when she passed the sweat test, her team at Boston's Children's Hospital insisted that we run the genetic blood test anyway. It came back negative.
It's probably best that I describe her symptoms, since I don't believe that what she has truly has a name. I also don't think that "asthma" really covers it.
Pulmonary
*Cough. Chronic, constant cough. Sometimes productive, sometimes not. Night and day.
*Occasional wheeze. Usually deep in the lung. It's often missed by the pediatrician, but the Pulmonologist usually finds it.
*Constantly mucus filled lungs. There was one set of films, when I looked at them, my first response was "those aren't MY kids lungs, are they?" Her lungs, that usually look dark on X-rays, looked like someone had stuck a white sheet of paper behind them. She was occluded from top to bottom. It was amazing that she was breathing at all...let alone having a blood oxygen saturation of 99%, and no whistles, crackles, rales, or wheezes.
Gastro
*Gastroesophogeal Reflux Disorder (GERD)
*gastroparesis (slow moving stomach)
*Dyspepsia (nausea,vomiting, fullness, abdominal pain and bloating)
*intermittent blood in her stool, with no evidence of trauma to cause blood.
*floating stool
*mucus in stool.
I honestly don't remember when M started showing pulmonary symptoms. What I remember is calling the pediatrician and saying "M sounds like A does when she needs a treatment." So the pediatrician said, "well, give her a treatment then." I did that for a few months...before I realized that we needed a little bit more support. I called the Pulmonologist that treated A in the hospital when she had RSV. He seemed good, at first...until he what he was doing wasn't keeping M under any sort of control. He began adding puffs of Flovent to her "treatment regiment" (and I use that term very loosely) By the time she was 3 years old, she was taking 12 puffs of Flovent a day. It was also doing NOTHING. My good friend had switched to a new Pulmonologist, and spoke very highly of him...so I made the call. When I told the nurse what we were doing for treatment, she moved things around and got us in to see the doctor within the week. (there was a 3 or 4 month wait for an appointment when I first called.) Dr. D changed her medication, and we went from giving M neb treatments nearly every 4 hours around the clock to once or twice a day, but still nearly every day. He changed her meds again, and we dropped down to needing them much less frequently, but still more often than he would like. One more med change, and the need for rescue treatments went down to an average of 4 times a week. When the doctor asked me how many times M needed rescue, and I said, "she's doing really well, she only needs rescue about 4 times a week" Dr. D was not as impressed with that...apparently, he wants her cough-free. I don't know what that's like. One more med change, after a particularly long lasting flare, and perhaps we'll get her down to needing no rescue, or the very low number that Dr. D would find acceptable.
I didn't know it then, but M's tummy trouble began in infancy. She cried...all the time. She was miserable. The doctor called it colic, and I looked at her and said, "I don't believe in Colic. She is in pain, I believe she has reflux. I've done some research, and Tagamet is pretty benign. Can we try it, and see if she feels better?" It was like a magic elixir. She went from crying ALL the time to being a pleasant, happy baby. She took the Tagamet from the time she was 2 months old until she was about a year, and we discontinued it. She seemed to be doing well, so we figured that she had outgrown the reflux.
Four days before her second birthday, M threw up for the first time. I remember distinctly, because I was at work, and Rob called me. I couldn't figure out why he was calling me, I mean, he's an intelligent person, surely he could figure out how to deal with a puking child. Especially since she threw up once, and was totally fine. When she threw up again, on the morning of her birthday (which was also her party day) I just figured that she was excited to see everyone. Three days after that, I was starting to get concerned, and several episodes, and a week later...I was in tears as I said to a friend..."I think there is something wrong with my baby."
I called the pediatrician, and he saw her...didn't notice anything on exam, but ordered a barium swallow, which is an X-ray of her digestive system after drinking a barium drink. It checks the anatomy, to see if there are any abnormalities. (there were not) He also ordered a gastric ultrasound. That was unremarkable as well. Dr. F then referred us to a Pediatric Gastroenterologist. He started her on Prevacid, and continued raising the dosage, hoping to get her under control. He ordered an upper endoscopy, and a colonoscopy. The doctor walked out of the procedure room and announced to me like it was a diagnosis..."she has esophogitis" It took all I had not to look at the man and say, "No...duh? She's been vomiting every 3 days for about 6 months. Really, her esophagus is a little irritated...REALLY?" However, I behaved myself, and made an appointment with the pediatrician and asked, "if it was your child, what would YOU do." He confirmed that he would make an appointment in Boston (at the Children's Hospital) because obviously, the doctor here also held the "more medication is better than an answer, or alternate treatment methods)
We went to Boston, and they did another UE and Colonoscopy. They were also rather unremarkable. They kept her on the 30mg of Prevacid (double the adult dosage) which made little difference. She continued to throw up regularly. There were no real answers to the questions, so we were just in a holding pattern.
She had some more tests, a bronchoscopy, more endoscopies, more colonoscopies, and impedance study, a CT scan, a gastric emptying study, sleep studies. Nothing ever shows anything, and yet M always feels poorly. She constantly worries about throwing up. She constantly has trouble breathing. She is six years old, and doesn't know what feeling "good" feels like. She either feels poorly, or really poorly. Her sister has been known to ask if "Sissa is REALLY sick, or just normal sick"
Having a chronically ill child is disrupting to every person in the family. The other child in the house has to deal with their sibling getting more attention than they do. It's not intentional, but things like treatments, and doctors appointments take time. Children worry too...A worries a lot about M. It's disrupting for the parents. Constant worry takes it's toll on all aspects of life. It makes people irritable, it makes people short tempered. While arguments don't OFTEN occur because of M's health problems, they DO occur because we're tired and stretched tight, and small things will set us off. The sick child, on top of being sick, is aware of the fact that disruption happens "because" of them. M apologized all the time for being sick.
I've really had to adopt the policy of "it is what it is" Right now, I can't change anything. I'm not going to stop trying to figure out what is wrong with my daughter. I don't believe that "she'll have to learn to deal with it, perhaps she'll outgrow it" is an acceptable answer. I don't believe that any child should feel poorly all the time. Hopefully, we'll find an answer sooner than later. For now, I enjoy my 2 beautiful daughters...I fight for them both, and I will continue to fight for them. I've heard the phrase..."whatever doesn't kill you makes you stronger" and while it may be true, I would be the gladly be the weakest person in the world, if it meant that my daughter wasn't suffering, so, I prefer to go with..."it is what it is" and someday, hopefully..."what it is" won't suck so bad.
The simple answer is that she has asthma and GERD. However, it's not really the exact answer. The REAL answer is that we don't know. She has "something" that may have both gastro and pulmonary involvement. (or they could be entirely unconnected) She has been tested for Cystic Fibrosis, because her lungs behave like a CFer's lungs, and adding the gastro component is compelling. Compelling enough that when she passed the sweat test, her team at Boston's Children's Hospital insisted that we run the genetic blood test anyway. It came back negative.
It's probably best that I describe her symptoms, since I don't believe that what she has truly has a name. I also don't think that "asthma" really covers it.
Pulmonary
*Cough. Chronic, constant cough. Sometimes productive, sometimes not. Night and day.
*Occasional wheeze. Usually deep in the lung. It's often missed by the pediatrician, but the Pulmonologist usually finds it.
*Constantly mucus filled lungs. There was one set of films, when I looked at them, my first response was "those aren't MY kids lungs, are they?" Her lungs, that usually look dark on X-rays, looked like someone had stuck a white sheet of paper behind them. She was occluded from top to bottom. It was amazing that she was breathing at all...let alone having a blood oxygen saturation of 99%, and no whistles, crackles, rales, or wheezes.
Gastro
*Gastroesophogeal Reflux Disorder (GERD)
*gastroparesis (slow moving stomach)
*Dyspepsia (nausea,vomiting, fullness, abdominal pain and bloating)
*intermittent blood in her stool, with no evidence of trauma to cause blood.
*floating stool
*mucus in stool.
I honestly don't remember when M started showing pulmonary symptoms. What I remember is calling the pediatrician and saying "M sounds like A does when she needs a treatment." So the pediatrician said, "well, give her a treatment then." I did that for a few months...before I realized that we needed a little bit more support. I called the Pulmonologist that treated A in the hospital when she had RSV. He seemed good, at first...until he what he was doing wasn't keeping M under any sort of control. He began adding puffs of Flovent to her "treatment regiment" (and I use that term very loosely) By the time she was 3 years old, she was taking 12 puffs of Flovent a day. It was also doing NOTHING. My good friend had switched to a new Pulmonologist, and spoke very highly of him...so I made the call. When I told the nurse what we were doing for treatment, she moved things around and got us in to see the doctor within the week. (there was a 3 or 4 month wait for an appointment when I first called.) Dr. D changed her medication, and we went from giving M neb treatments nearly every 4 hours around the clock to once or twice a day, but still nearly every day. He changed her meds again, and we dropped down to needing them much less frequently, but still more often than he would like. One more med change, and the need for rescue treatments went down to an average of 4 times a week. When the doctor asked me how many times M needed rescue, and I said, "she's doing really well, she only needs rescue about 4 times a week" Dr. D was not as impressed with that...apparently, he wants her cough-free. I don't know what that's like. One more med change, after a particularly long lasting flare, and perhaps we'll get her down to needing no rescue, or the very low number that Dr. D would find acceptable.
I didn't know it then, but M's tummy trouble began in infancy. She cried...all the time. She was miserable. The doctor called it colic, and I looked at her and said, "I don't believe in Colic. She is in pain, I believe she has reflux. I've done some research, and Tagamet is pretty benign. Can we try it, and see if she feels better?" It was like a magic elixir. She went from crying ALL the time to being a pleasant, happy baby. She took the Tagamet from the time she was 2 months old until she was about a year, and we discontinued it. She seemed to be doing well, so we figured that she had outgrown the reflux.
Four days before her second birthday, M threw up for the first time. I remember distinctly, because I was at work, and Rob called me. I couldn't figure out why he was calling me, I mean, he's an intelligent person, surely he could figure out how to deal with a puking child. Especially since she threw up once, and was totally fine. When she threw up again, on the morning of her birthday (which was also her party day) I just figured that she was excited to see everyone. Three days after that, I was starting to get concerned, and several episodes, and a week later...I was in tears as I said to a friend..."I think there is something wrong with my baby."
I called the pediatrician, and he saw her...didn't notice anything on exam, but ordered a barium swallow, which is an X-ray of her digestive system after drinking a barium drink. It checks the anatomy, to see if there are any abnormalities. (there were not) He also ordered a gastric ultrasound. That was unremarkable as well. Dr. F then referred us to a Pediatric Gastroenterologist. He started her on Prevacid, and continued raising the dosage, hoping to get her under control. He ordered an upper endoscopy, and a colonoscopy. The doctor walked out of the procedure room and announced to me like it was a diagnosis..."she has esophogitis" It took all I had not to look at the man and say, "No...duh? She's been vomiting every 3 days for about 6 months. Really, her esophagus is a little irritated...REALLY?" However, I behaved myself, and made an appointment with the pediatrician and asked, "if it was your child, what would YOU do." He confirmed that he would make an appointment in Boston (at the Children's Hospital) because obviously, the doctor here also held the "more medication is better than an answer, or alternate treatment methods)
We went to Boston, and they did another UE and Colonoscopy. They were also rather unremarkable. They kept her on the 30mg of Prevacid (double the adult dosage) which made little difference. She continued to throw up regularly. There were no real answers to the questions, so we were just in a holding pattern.
She had some more tests, a bronchoscopy, more endoscopies, more colonoscopies, and impedance study, a CT scan, a gastric emptying study, sleep studies. Nothing ever shows anything, and yet M always feels poorly. She constantly worries about throwing up. She constantly has trouble breathing. She is six years old, and doesn't know what feeling "good" feels like. She either feels poorly, or really poorly. Her sister has been known to ask if "Sissa is REALLY sick, or just normal sick"
Having a chronically ill child is disrupting to every person in the family. The other child in the house has to deal with their sibling getting more attention than they do. It's not intentional, but things like treatments, and doctors appointments take time. Children worry too...A worries a lot about M. It's disrupting for the parents. Constant worry takes it's toll on all aspects of life. It makes people irritable, it makes people short tempered. While arguments don't OFTEN occur because of M's health problems, they DO occur because we're tired and stretched tight, and small things will set us off. The sick child, on top of being sick, is aware of the fact that disruption happens "because" of them. M apologized all the time for being sick.
I've really had to adopt the policy of "it is what it is" Right now, I can't change anything. I'm not going to stop trying to figure out what is wrong with my daughter. I don't believe that "she'll have to learn to deal with it, perhaps she'll outgrow it" is an acceptable answer. I don't believe that any child should feel poorly all the time. Hopefully, we'll find an answer sooner than later. For now, I enjoy my 2 beautiful daughters...I fight for them both, and I will continue to fight for them. I've heard the phrase..."whatever doesn't kill you makes you stronger" and while it may be true, I would be the gladly be the weakest person in the world, if it meant that my daughter wasn't suffering, so, I prefer to go with..."it is what it is" and someday, hopefully..."what it is" won't suck so bad.
Saturday, February 6, 2010
Color me SHOCKED
(whatever color shocked might be)
I went to the pharmacy to get M.'s prescription yesterday. All the hoop jumping worked. The Pharmacist remarked that she has never, ever had to do all this stuff to get a script through before.
I fully expected that it was going to be a high tiered script. I play a game before I pick up new prescriptions, where as I'm walking into the pharmacy, I guess how much the script is going to be. I'm usually right.
I had to pick up a few more things, so I was expecting the final total to be well over $100. I was extremely surprised when it came to less than $30. Despite all the hoops we needed to jump through, M's new script is a low tier, $10 script. That's a savings of $50 a month, if the Qvar works for her.
Last night was a bad night. I'm chalking it up to the med switch, and letting her body adjust to it. She is sleeping in my room for the weekend, because we have company, and the company is sleeping in her room. I spent 10 minutes waiting and watching, trying to determine if the cough was from a drip or in her lungs. I decided that a treatment wouldn't hurt, so I got it set up...(I had planned ahead, and had moved the machine from her room to mine, and had meds ready.) I climbed into the toddler size aerobed...and did her treatment. She was quiet the rest of the night, which confirmed that the cough was lung, rather than drip.
Hopefully, the adjustment is fast, and the new med works.
Since M was diagnosed, before age 2, she has been on
*Flovent (failed)
*advair (failed)
*Atrovent (seems somewhat effective)
*Symbicort (seems somewhat effective)
*Pulmocort (only when she is sick)
*Albuterol neb (rescue)
*Xopenex (rescue inhaler)
and now, Qvar (yet to be determined)
The last time we were at the pulmonologist, he asked how often we used either the rescue inhaler or neb machine. He wasn't so thrilled when I said "we're doing really good lately. She doesn't need rescue more than 4 times a week. Apparently, she is not supposed to need a rescue at all. Go figure...I really HAD thought that an average of 4 times a week was good. Perhaps, eventually, we'll get her under complete control...until then, we'll keep trying until we do.
I went to the pharmacy to get M.'s prescription yesterday. All the hoop jumping worked. The Pharmacist remarked that she has never, ever had to do all this stuff to get a script through before.
I fully expected that it was going to be a high tiered script. I play a game before I pick up new prescriptions, where as I'm walking into the pharmacy, I guess how much the script is going to be. I'm usually right.
I had to pick up a few more things, so I was expecting the final total to be well over $100. I was extremely surprised when it came to less than $30. Despite all the hoops we needed to jump through, M's new script is a low tier, $10 script. That's a savings of $50 a month, if the Qvar works for her.
Last night was a bad night. I'm chalking it up to the med switch, and letting her body adjust to it. She is sleeping in my room for the weekend, because we have company, and the company is sleeping in her room. I spent 10 minutes waiting and watching, trying to determine if the cough was from a drip or in her lungs. I decided that a treatment wouldn't hurt, so I got it set up...(I had planned ahead, and had moved the machine from her room to mine, and had meds ready.) I climbed into the toddler size aerobed...and did her treatment. She was quiet the rest of the night, which confirmed that the cough was lung, rather than drip.
Hopefully, the adjustment is fast, and the new med works.
Since M was diagnosed, before age 2, she has been on
*Flovent (failed)
*advair (failed)
*Atrovent (seems somewhat effective)
*Symbicort (seems somewhat effective)
*Pulmocort (only when she is sick)
*Albuterol neb (rescue)
*Xopenex (rescue inhaler)
and now, Qvar (yet to be determined)
The last time we were at the pulmonologist, he asked how often we used either the rescue inhaler or neb machine. He wasn't so thrilled when I said "we're doing really good lately. She doesn't need rescue more than 4 times a week. Apparently, she is not supposed to need a rescue at all. Go figure...I really HAD thought that an average of 4 times a week was good. Perhaps, eventually, we'll get her under complete control...until then, we'll keep trying until we do.
Monday, February 1, 2010
This is how it's SUPPOSED to work.....
Doctor calls in prescription...pharmacy fills prescription...I pay outrageous co-pay for prescription, and go home....in a perfect world...that is how it would work.
In MY world...the past FEW times I've gone to the pharmacy to pick up M's prescriptions...THIS is how it goes...
Doctor calls in prescription...pharmacy DOES NOT fill prescription...because insurance company refuses to pay for prescription without pharmacist and doctor jumping through all sorts of obnoxious hoops...I leave without prescription, with my fingers crossed that said hoop jumping works, and I will be able to pick the prescription up the next day.
I don't know how to make this easier. I guess having a healthy child would make it easier. I should be thankful that we HAVE prescription coverage at all...but really...we pay for coverage. All the medications we need should be covered by the insurance that we pay for.
Ah, well...this is where I throw in my catch all catch phrase..."it is what it is"
In MY world...the past FEW times I've gone to the pharmacy to pick up M's prescriptions...THIS is how it goes...
Doctor calls in prescription...pharmacy DOES NOT fill prescription...because insurance company refuses to pay for prescription without pharmacist and doctor jumping through all sorts of obnoxious hoops...I leave without prescription, with my fingers crossed that said hoop jumping works, and I will be able to pick the prescription up the next day.
I don't know how to make this easier. I guess having a healthy child would make it easier. I should be thankful that we HAVE prescription coverage at all...but really...we pay for coverage. All the medications we need should be covered by the insurance that we pay for.
Ah, well...this is where I throw in my catch all catch phrase..."it is what it is"
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