Ricky has been doing very well as far as his sinuses are concerned. When he had his sinus surgery a year ago, the ENT said he'd probably need another one after a year, but his sinuses right now look GREAT so it looks like that won't be the case! Hooray!
In February he cultured a nasty bug in his lungs, stenotrophomonas maltophilia, but we immediately countered it with inhaled and oral antibiotics and hope to have it beat. I guess we'll find out after we get him cultured a month from now. Because of the bug, he's developing a chronic cough for the first time in his life. Most CFers have a chronic cough so I guess it's just Ricky's time.
Ricky's behavior problems got so bad back in November (before his hospitalization) that I took him to a child psychiatrist. We've been following with the doc till now. Ricky's trying play therapy with the psychiatrist and after the last visit three weeks ago we started him on Paxil, an antidepressant, because we think his behavior stems from depression over his chronic illness (by the way, any other parents with experience in this area, MACS or other, I'd love to hear from you). Well, though it made him a generally happier person, Paxil got him ripping his hair out in chunks from his head and chewing on his fingernails and cuticle like mad. It seemed to actually be activating his bad behavior too (I swear he is going to get kicked out of day care)! So he was weaned off of it this week.
We saw the psychiatrist yesterday and he decided we should try Celexa, another SSRI class of antidepressant. He is double-checking on possible drug interactions, because Ricky is on so many other drugs, and then he will call it in to the pharmacy. If that doesn't work, he's considering Concerta, an ADD drug/Ritalin derivative, because Ricky definitely is active, busy, and destructive, which can be caused by depression, not just ADD. So even if he is not ADD he might still benefit from it. The big problem with any Ritalin drug though is that it will supress appetite, which is the last thing my skinny boy, or any child with CF, needs. I checked the the GI doc and she is okay with it if the psychiatrist feels it would be valuable for him. We'll just have to monitor his weight extra carefully. But we are getting ahead of ourselves because we are all set to try Celexa first!
Andy (little brother) had his third birthday on Sunday, and is doing just great. Driving his brother crazy, but then that's his job! So there's a little update for you.
Saturday, March 24, 2001
Wednesday, February 21, 2001
Icky news (post from 2001)
I finally talked to Ricky's NP at the CF clinic and he cultured two bugs last
week.
(1) Serratia which I guess we've figured out isn't dangerous at all.
(2) Stenotrophamonas Maltophilia (sp?) which really knocked the wind out of
me.
Just when we were starting to do so well, now this. I guess we can't ever do
WELL with this disease, we just have to keep getting knocked for a loop.
week.
(1) Serratia which I guess we've figured out isn't dangerous at all.
(2) Stenotrophamonas Maltophilia (sp?) which really knocked the wind out of
me.
Just when we were starting to do so well, now this. I guess we can't ever do
WELL with this disease, we just have to keep getting knocked for a loop.
Tuesday, February 6, 2001
What is cystic fibrosis?
Now I will educate you about CF!
Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).
Kids with CF have lots of problems, but the main ones are:
1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill
2. lung - they have frequent lung infections and pneumonias
Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.
He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.
Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.
Good links about CF:
Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)
Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).
Kids with CF have lots of problems, but the main ones are:
1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill
2. lung - they have frequent lung infections and pneumonias
Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.
He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.
Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.
Good links about CF:
Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)
Sunday, January 21, 2001
school evaluation
Ricky's going to be tested for learning disabilities, ADHD, etc. on January 31. I have mixed feelings about this. I mean, just because a kid is distractible doesn't mean he has ADHD.
The reason I self-referred him to the school district for this is that he has serious behavior problems. We're hoping to isolate the problem and get him registered for the right school (he's starting Kindergarten this fall). If he has ADHD or a learning disability he'll have to go to the school that has special ed, and we have to register for kindergarten in February. So the time to get this handled is now.
Isn't it weird to want him to do well, when wanting to find out the right answers might mean that he won't do well?
A parent's quandary, I guess.
The reason I self-referred him to the school district for this is that he has serious behavior problems. We're hoping to isolate the problem and get him registered for the right school (he's starting Kindergarten this fall). If he has ADHD or a learning disability he'll have to go to the school that has special ed, and we have to register for kindergarten in February. So the time to get this handled is now.
Isn't it weird to want him to do well, when wanting to find out the right answers might mean that he won't do well?
A parent's quandary, I guess.
Thursday, January 4, 2001
Today I took the boys to the Children's Discovery Museum. I guess it's my way of spending time with them while at the same time avoiding housework. This place is an enormous mess.
Anyway, we had lots of fun there. My favorite part is the tennis ball display, where you can use cranks to manipulate tennis balls in a great big machine. Luckily the boys like it too; we spent about an hour fiddling around with it. A couple of times while we were at the museum one or the other of the boys ran off away from me; I'm trying to make sure they know that's not o.k. I'm so scared of losing one of them.
The last thing we did was visit the Arthur display. One of the rooms in there is a library, where kids can pretend to scan the books. Ricky started grabbing books from other kids and I steered him away from there. Then he found a felt board where a little girl was making a picture and pulled all of the little felt figures off and threw them on the floor, making her cry. At this point I told him, "Okay, we're out of here" and we left.
All the way to the light rail, all the way home on the light rail, and all the way to the car from the light rail station he cried and hollered and pouted about having to leave.
It occurred to me that maybe this behavior problem we're trying to get diagnosed means that he just doesn't know when he's doing something bad. Maybe he is not observant enough of what's going on around him to notice how is actions affect other people. Does that make any sense?
Anyway all I could do was put my arm around him and make sympathetic sounds; but I also made sure he knew why we had to leave.
We came home and I got Andy down for his nap while Ricky watched the end of Star Wars, which he started watching this morning. I wasn't much younger than him when I saw it for the first time, in 1977, at the movie theater.
Anyway, we had lots of fun there. My favorite part is the tennis ball display, where you can use cranks to manipulate tennis balls in a great big machine. Luckily the boys like it too; we spent about an hour fiddling around with it. A couple of times while we were at the museum one or the other of the boys ran off away from me; I'm trying to make sure they know that's not o.k. I'm so scared of losing one of them.
The last thing we did was visit the Arthur display. One of the rooms in there is a library, where kids can pretend to scan the books. Ricky started grabbing books from other kids and I steered him away from there. Then he found a felt board where a little girl was making a picture and pulled all of the little felt figures off and threw them on the floor, making her cry. At this point I told him, "Okay, we're out of here" and we left.
All the way to the light rail, all the way home on the light rail, and all the way to the car from the light rail station he cried and hollered and pouted about having to leave.
It occurred to me that maybe this behavior problem we're trying to get diagnosed means that he just doesn't know when he's doing something bad. Maybe he is not observant enough of what's going on around him to notice how is actions affect other people. Does that make any sense?
Anyway all I could do was put my arm around him and make sympathetic sounds; but I also made sure he knew why we had to leave.
We came home and I got Andy down for his nap while Ricky watched the end of Star Wars, which he started watching this morning. I wasn't much younger than him when I saw it for the first time, in 1977, at the movie theater.
Monday, January 1, 2001
I was an only child
When I was growing up, I always longed for a sibling, preferably a boy since I was such a tomboy myself. My parents tried to have another baby when I was around 10, but I guess it wasn't meant to be because they never did conceive again.
Being an only child, I grew up really fast. I could go to parties with my parents and hold intelligent conversations with adults with no problems.
I was a little lonely. When my school friends were all busy, I was bored with no one to play with. However, I developed a terrific imagination from all this solo play. I had a massive collection of Star Wars action figures and playsets, and built elaborate worlds with them, not having to worry about a little brother or sister knocking them down or messing them up.
I had trouble with teasing. I didn't know how to react to it. My two boy cousins (brothers) used to tease me mercilessly, and I'd just cry and run away. I didn't know then that the best way to discourage them would have been to just ignore them or joke back at them. How would I know? I had no experience! I figured it out later on and they were disappointed, I think, to have the wind taken out of their sails.
As I grew older, I decided I wanted a huge family -- at least six kids. That way no one would ever be in this position that I was in. After I got to adulthood I realized that would probably not be possible, at least not in California, Silicon Valley to be more specific. It's just too expensive here to raise a regular-sized family, let alone a large family!
When Ricky was born and diagnosed with the genetic disease cystic fibrosis, I could have decided not to have any more children because of the CF (I know lots of parents who have made that decision), but I didn't. I was determined that Ricky would not be an only child. We conceived Andy when Ricky was about 1-1/2, and waited on pins and needles for his amniocentesis results (we were going to keep him either way, but it was still nerve-wracking!).
Andy's fine, and our family is now complete. The boys play together, tease each other (and let it roll of their backs), laugh together, throw food at each other, and do all the things that brothers do. In a way it makes me wish that I'd had a sibling or two, but I know that I am a better person, in my own way, for having been an only child.
Being an only child, I grew up really fast. I could go to parties with my parents and hold intelligent conversations with adults with no problems.
I was a little lonely. When my school friends were all busy, I was bored with no one to play with. However, I developed a terrific imagination from all this solo play. I had a massive collection of Star Wars action figures and playsets, and built elaborate worlds with them, not having to worry about a little brother or sister knocking them down or messing them up.
I had trouble with teasing. I didn't know how to react to it. My two boy cousins (brothers) used to tease me mercilessly, and I'd just cry and run away. I didn't know then that the best way to discourage them would have been to just ignore them or joke back at them. How would I know? I had no experience! I figured it out later on and they were disappointed, I think, to have the wind taken out of their sails.
As I grew older, I decided I wanted a huge family -- at least six kids. That way no one would ever be in this position that I was in. After I got to adulthood I realized that would probably not be possible, at least not in California, Silicon Valley to be more specific. It's just too expensive here to raise a regular-sized family, let alone a large family!
When Ricky was born and diagnosed with the genetic disease cystic fibrosis, I could have decided not to have any more children because of the CF (I know lots of parents who have made that decision), but I didn't. I was determined that Ricky would not be an only child. We conceived Andy when Ricky was about 1-1/2, and waited on pins and needles for his amniocentesis results (we were going to keep him either way, but it was still nerve-wracking!).
Andy's fine, and our family is now complete. The boys play together, tease each other (and let it roll of their backs), laugh together, throw food at each other, and do all the things that brothers do. In a way it makes me wish that I'd had a sibling or two, but I know that I am a better person, in my own way, for having been an only child.
Friday, December 29, 2000
Bowl by the Bay
We were contacted by a friend at the South Bay chapter of the Cystic Fibrosis Foundation earlier this week because of an event that was to happen today.
The first Bowl by the Bay is happening here in San Jose this Sunday. It's a football game between Fresno State and the Air Force Academy. The game organizers picked CFF as their charity of choice, and so they had Ricky and Andy and some other kids with CF and their siblings come to their press conference/party this morning.
They gave away TONS of stuffed animals, hats, watches, team programs, t-shirts, pennants, you name it! The boys got TONS of stuff and because Ricky was having a conversation with one of the Fresno players, Tim, #51, who is apparently one of the star players, tons of pictures and video were taken of the boys. We also got 6 really good tickets to the game!
I was actually interviewed by a guy from Fresno's Fox channel 26, and the interview will appear on their 10 o'clock news tonight. If anyone out there among our friends is from Fresno, or knows someone from there, could you tape the interview for us? It sure would be great. Please let me know! I think we might also be on the national Fox Sports Channel, so if anyone's able to see the coverage on there, we might be featured on there, and a tape would be great. Thank you so much!
We were overwhelmed with the generosity of these teams and organizers. The football players were so sweet with the boys. We got lots of pictures (Polaroid, taken by one of the organizer guys, and regular, which I took myself) which we'll put up on the family web page soon -- look for them. This was a terrific event and I just wish more of the CF community could have been there to enjoy it!
The first Bowl by the Bay is happening here in San Jose this Sunday. It's a football game between Fresno State and the Air Force Academy. The game organizers picked CFF as their charity of choice, and so they had Ricky and Andy and some other kids with CF and their siblings come to their press conference/party this morning.
They gave away TONS of stuffed animals, hats, watches, team programs, t-shirts, pennants, you name it! The boys got TONS of stuff and because Ricky was having a conversation with one of the Fresno players, Tim, #51, who is apparently one of the star players, tons of pictures and video were taken of the boys. We also got 6 really good tickets to the game!
I was actually interviewed by a guy from Fresno's Fox channel 26, and the interview will appear on their 10 o'clock news tonight. If anyone out there among our friends is from Fresno, or knows someone from there, could you tape the interview for us? It sure would be great. Please let me know! I think we might also be on the national Fox Sports Channel, so if anyone's able to see the coverage on there, we might be featured on there, and a tape would be great. Thank you so much!
We were overwhelmed with the generosity of these teams and organizers. The football players were so sweet with the boys. We got lots of pictures (Polaroid, taken by one of the organizer guys, and regular, which I took myself) which we'll put up on the family web page soon -- look for them. This was a terrific event and I just wish more of the CF community could have been there to enjoy it!
Saturday, December 23, 2000
Ricky's ibuprofen thing
I can't remember if I told you guys. Ricky's ibuprofen levels from his hospitalization came back this week as sub-therapeutic so they upped him and told us the dosage. It will be 550 mg twice a day. That's 5-1/2 teaspoons twice a day of Motrin or generic Motrin! As you can tell that is a ton of ibuprofen, and it seems dangerous. But they are sure this is the right dosage to bring down the inflammation in his lungs due to bronchiectasis -- so it is good new for us. I went out and bought two three packs of Kirkland ibuprofen at Costco this past week -- $7 per package. Still looking for Motrin coupons because Motrin comes in a bigger bottle if you get it at the right place. I think we'll be going through a 4 oz. bottle of this generic stuff every few days, so it could get expensive!
Tuesday, December 12, 2000
Ricky's two doctor appointments today
We saw two docs today, the lung doc and the ENT.
Lung doc, Dr. Conrad, says his lungs are sounding terrific, and his nose doesn't look too bad. He had gained 4 pounds in the hospital and has since (in 2 weeks) lost 2. Oh well, win some, "lose" some I guess. We talked about his bronchiectasis (bronchus inflammation). She thinks the ibuprofen therapy will help a lot with it. The levels (to determine the dosage, since it will be high level and we don't want to give him a toxic or stomach-irritating dose) should have been back by now, since they were drawn
15 days ago (they take 2 weeks) but since they aren't back yet, we should probably have the information within the next few days. We go back in 2 months (this is a change, it always used to be every 3 months, but I guess "advanced lung disease for his age" makes a difference). Oh, he also tried doing PFTs (puffing into a machine that measures breathing capacity, which asthmatics are familiar with) for the second time! He still can't puff long enough, just 3 seconds instead of 6 but we consider it PFTs-in-training.
We hung around the hospital and had lunch and then went to the ENT. We waited AN HOUR AND A HALF in the waiting room before we finally got in. Then waited 45 minutes in there until the nurse practitioner came in to see us. She wanted to see in his ears and there was too much wax so she wanted to clean it out... which majorly traumatized Ricky because he's been through so many medical procedures lately. I finally convinced her not to do it. After all we were not there about his ears. About 15 minutes later the ENT came in, he's the substitute for Dr. Messner, who is on sabbatical. I swear this guy is younger than me. He spent all of 10 minutes with us. He did a side by side comparison of Ricky's sinus CTs. Bottom line is, Ricky doesn't need surgery! His right maxillary sinus is very packed with stuff and polyps, but
every other cavity is fine! Hooray! The doc is reluctant to do surgery unless absolutely necessary because of the bronchiectasis (great) and it being risky to tube him. So we don't even need to go back unless he starts complaining of pain, pressure, etc. or the other sinuses get involved.
*doing a happy dance* Glad things are looking up finally...
Lung doc, Dr. Conrad, says his lungs are sounding terrific, and his nose doesn't look too bad. He had gained 4 pounds in the hospital and has since (in 2 weeks) lost 2. Oh well, win some, "lose" some I guess. We talked about his bronchiectasis (bronchus inflammation). She thinks the ibuprofen therapy will help a lot with it. The levels (to determine the dosage, since it will be high level and we don't want to give him a toxic or stomach-irritating dose) should have been back by now, since they were drawn
15 days ago (they take 2 weeks) but since they aren't back yet, we should probably have the information within the next few days. We go back in 2 months (this is a change, it always used to be every 3 months, but I guess "advanced lung disease for his age" makes a difference). Oh, he also tried doing PFTs (puffing into a machine that measures breathing capacity, which asthmatics are familiar with) for the second time! He still can't puff long enough, just 3 seconds instead of 6 but we consider it PFTs-in-training.
We hung around the hospital and had lunch and then went to the ENT. We waited AN HOUR AND A HALF in the waiting room before we finally got in. Then waited 45 minutes in there until the nurse practitioner came in to see us. She wanted to see in his ears and there was too much wax so she wanted to clean it out... which majorly traumatized Ricky because he's been through so many medical procedures lately. I finally convinced her not to do it. After all we were not there about his ears. About 15 minutes later the ENT came in, he's the substitute for Dr. Messner, who is on sabbatical. I swear this guy is younger than me. He spent all of 10 minutes with us. He did a side by side comparison of Ricky's sinus CTs. Bottom line is, Ricky doesn't need surgery! His right maxillary sinus is very packed with stuff and polyps, but
every other cavity is fine! Hooray! The doc is reluctant to do surgery unless absolutely necessary because of the bronchiectasis (great) and it being risky to tube him. So we don't even need to go back unless he starts complaining of pain, pressure, etc. or the other sinuses get involved.
*doing a happy dance* Glad things are looking up finally...
Thursday, December 7, 2000
Ugh!
Now Ricky has that flu thing that Andy had (Andy is now well, by the way). This of course is bad news for Ricky. He's already at 102.7 underarm temperature, and feeling crummy, with dark circles under his eyes and everything. At least we are almost to the weekend. Just got to find somewhere for him to be tomorrow as I really can't miss work (still in my first full week at this job). The flu sucks! Andy and now Ricky get it...
And they're the ones in this family who have had their flu shots! Argh!
Ah, well, this too shall pass...
And they're the ones in this family who have had their flu shots! Argh!
Ah, well, this too shall pass...
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