Ricky is doing okay. He's had a few random bad days, being tired, not feeling well, etc. but he is actually doing great in general. School has been a struggle again (still?) -- getting him there and actually having him work. At his annual IEP it was decided that he is going to be attending half days. He leaves after four periods + lunch. But so far he's still struggling to get through the day. *sigh*
Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.
Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.
He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!
Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)
Showing posts with label dizziness. Show all posts
Showing posts with label dizziness. Show all posts
Wednesday, April 13, 2011
Saturday, January 1, 2011
quick update
Just a quick update for the new year.
Ricky has had a few doctor appointments recently and I FINALLY got the neurology nurse and pulmonology nurse to confer and get Ricky a sleep study. For Pete's sake, the kid has been missing more days of school than he has been in, with being sleepy, dizzy, etc. So on January 11 he's spending the night at PEC (the peds unit Dave used to manage, ironically, though they are in a fancy new facility now) for a sleep study and hopefully we will get some answers. He has been having migraines too, but at least there is Imitrex for that. There is nothing we have found so far that helps with the other stuff.
Good news... He grew a few inches in 2010! Could this mean that he's finally entering puberty? Time will tell! We see the endocrinologist in early 2011 and hopefully we'll get some answers.
Ricky has had a few doctor appointments recently and I FINALLY got the neurology nurse and pulmonology nurse to confer and get Ricky a sleep study. For Pete's sake, the kid has been missing more days of school than he has been in, with being sleepy, dizzy, etc. So on January 11 he's spending the night at PEC (the peds unit Dave used to manage, ironically, though they are in a fancy new facility now) for a sleep study and hopefully we will get some answers. He has been having migraines too, but at least there is Imitrex for that. There is nothing we have found so far that helps with the other stuff.
Good news... He grew a few inches in 2010! Could this mean that he's finally entering puberty? Time will tell! We see the endocrinologist in early 2011 and hopefully we'll get some answers.
Monday, November 8, 2010
Updates
Things have been busy for Ricky. He has had a number of absences from and short days at school due to dizzy spells, migraines, and fatigue. We still don't know what's going on with all of this. Migraines do explain some of the symptoms he has been having, but not all.
Ricky is getting a one-to-one aide at school because he's been having trouble adjusting to high school and its routines. He has been trying very hard in school, though, and his favorite class is 3D design.
Most recently, Ricky had some teeth pulled. He had four (adult) bicuspids that were crowding his mouth and making it so that his adult cuspids could not grow in. He had the right ones pulled several weeks ago, and last week he had the left ones pulled. The extraction on Wednesday of last week were very difficult, involving the dentist having to dig them out of his gums. Ricky got stitches and was in a lot of pain. He also developed a fever and we were scared he had some sort of infection. The dentist and pediatrician conferred and Ricky was started on Septra. By the weekend he was doing a lot better and he was back to school today, I am happy to say!
We've had some close shaves with bowel blockages lately, including an ER visit. He's back on Miralax now though and hopefully it will continue to help.
For Halloween, Ricky was a Ghostbuster. I'm not sure, but this might be the last time he trick-or-treats. I can't believe he's that old already! (He'll be 15 years old this month!)
Guess that's all the news for now. Thank you all for sending Ricky cards and letters. He still loves to get mail!
Sunday, September 19, 2010
Long overdue update (again)
I can't believe it's been almost three months since I last blogged here. So here's a thorough update on Ricky.
Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.
I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.
So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.
We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!
At the beach with friends.
At the Weird Al concert.
Ricky also spent a lot of time doing this:
I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...
So school started in late August.
First day of high school!
Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.
He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.
We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.
Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.
This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.
Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.
The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!
We go back to the pulmonologist and gastroenterologist in December.
Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.
So I guess that just about catches us up. I promise not to take so long before I update again!
Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.
I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.
So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.
We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!
At the beach with friends.
At the Weird Al concert.
Ricky also spent a lot of time doing this:
I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...
So school started in late August.
First day of high school!
Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.
He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.
We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.
Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.
This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.
Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.
The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!
We go back to the pulmonologist and gastroenterologist in December.
Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.
So I guess that just about catches us up. I promise not to take so long before I update again!
Thursday, June 24, 2010
Neuro, dentist and a very important question
I blogged last about what I thought was an absence seizure. The neurology nurse finally called me back after I called and left messages twice. She said it sounded more like a complex partial seizure, because people who have absence seizures usually don't have the other kinds that Ricky has had (complex partial and tonic-clonic). She suggested we up his Trileptal... Going up 1/2 a tablet in the evenings this week and going up another 1/2 tablet in the mornings next week.
I asked AGAIN about the dizzy spells. She told me that there really is nothing else they can do for him. This is not the first time I've been told this but I'm just stunned that this is really what they're telling me. They've done all kinds of tests and he has been tried on one med for this: Topamax. That's all they can do? Really? More about this in a bit.
Today I took Ricky to the dental school at UCSF. His regular dentist referred us there because they were uncomfortable treating him with all of his meds and medical history. (The dentist he's had for years never had any problems with it, but whatever.) We met with a very nice dental resident (and his pushy attending) and went over a thorough history. Ricky had x-rays and a cleaning. No cavities! The dentist was actually shocked that Ricky had no cavities, with his very dry mouth (due to CF or meds, not sure which), poor dental hygiene, and congenital lack of enamel on some of his teeth.
So, the plan is for us to go back there in a few weeks for Ricky to have four of his permanent teeth pulled out to make room for four other permanent teeth that have no room to come in. Once that is done, he can have orthodonture. That's another fun thing to come... Do we pay out of pocket for ortho stuff down here, or do we try to get Medi-Cal to pay for it under medical necessity and do it through UCSF? That would mean going up there every time he needs and adjustment, which would be a pain in the butt. It's an hour away and well, it's in San Francisco, with lots of traffic. Guess we'll see.
As you can see from the picture, the boys and I took the opportunity to do some sightseeing while we were in San Francisco today. That's them on Lombard Street, the crookedest street in the world. I have to say, I was very impressed... We all walked all the way down the crooked block... And then we all walked back up. Ricky hoofed it and made it to the top a good five minutes before Andrew and me. Andrew and I were huffing and puffing and taking breaks all the way up. The kid with lung disease made it up there first! Go Ricky!
Okay, here's the last thing. I think it's time to get a second opinion about Ricky's dizzy spells. It has gotten to the point that he has been knocked out sleeping most of the day 3-4 days per week. He can't stand in lines for long. He has decided to quit soccer because he can't make it through a single game without feeling like he's going to fall over.
So my question is... Aside from Stanford, where are the best/most knowledgeable pediatric neurologists in California? I'm willing to take this to southern California too. I am trying to tap into the knowledge of my friends out there who might have knowledge of these sorts of things. Please put your feelers out and spread the word. Ricky is going to high school this fall. He can't keep dealing with this stuff! We need to find an answer!
Thanks everyone. :)
I asked AGAIN about the dizzy spells. She told me that there really is nothing else they can do for him. This is not the first time I've been told this but I'm just stunned that this is really what they're telling me. They've done all kinds of tests and he has been tried on one med for this: Topamax. That's all they can do? Really? More about this in a bit.
Today I took Ricky to the dental school at UCSF. His regular dentist referred us there because they were uncomfortable treating him with all of his meds and medical history. (The dentist he's had for years never had any problems with it, but whatever.) We met with a very nice dental resident (and his pushy attending) and went over a thorough history. Ricky had x-rays and a cleaning. No cavities! The dentist was actually shocked that Ricky had no cavities, with his very dry mouth (due to CF or meds, not sure which), poor dental hygiene, and congenital lack of enamel on some of his teeth.
So, the plan is for us to go back there in a few weeks for Ricky to have four of his permanent teeth pulled out to make room for four other permanent teeth that have no room to come in. Once that is done, he can have orthodonture. That's another fun thing to come... Do we pay out of pocket for ortho stuff down here, or do we try to get Medi-Cal to pay for it under medical necessity and do it through UCSF? That would mean going up there every time he needs and adjustment, which would be a pain in the butt. It's an hour away and well, it's in San Francisco, with lots of traffic. Guess we'll see.
As you can see from the picture, the boys and I took the opportunity to do some sightseeing while we were in San Francisco today. That's them on Lombard Street, the crookedest street in the world. I have to say, I was very impressed... We all walked all the way down the crooked block... And then we all walked back up. Ricky hoofed it and made it to the top a good five minutes before Andrew and me. Andrew and I were huffing and puffing and taking breaks all the way up. The kid with lung disease made it up there first! Go Ricky!
Okay, here's the last thing. I think it's time to get a second opinion about Ricky's dizzy spells. It has gotten to the point that he has been knocked out sleeping most of the day 3-4 days per week. He can't stand in lines for long. He has decided to quit soccer because he can't make it through a single game without feeling like he's going to fall over.
So my question is... Aside from Stanford, where are the best/most knowledgeable pediatric neurologists in California? I'm willing to take this to southern California too. I am trying to tap into the knowledge of my friends out there who might have knowledge of these sorts of things. Please put your feelers out and spread the word. Ricky is going to high school this fall. He can't keep dealing with this stuff! We need to find an answer!
Thanks everyone. :)
Wednesday, March 17, 2010
update - doctor visits
Week before last, Ricky saw the neurologist about his increased fatigue and dizziness on the increased Topamax dose he's been on for a while. The decision was made to reduce the dose back down to what it was before and see what happens.
Ricky had an eventful week last week. On Monday, in addition to a bunch of other labs that he gets done yearly, he had his three hour glucose tolerance test, which ended up being normal, yay. That day he also saw his gastroenterologist and that went well, too.
On Tuesday, we had an eventful day. Ricky saw the endocrinologist, who looked over his other blood tests from the day before. His thyroid level was, as always, borderline low. Most of the other stuff looked normal. He has grown two inches in the past year, and the endocrinologist decided to put off any intervention with regard to his delayed puberty. They want us to come back in a year.
Next he had his yearly full pulmonary function tests. Those went well, and his numbers looked great.
Then Ricky saw the pulmonologist. His weight has flatlined and his growth curve is actually dropping. We're supposed to push lots of weight gain shakes. His lungs sounded great and the doc was pleased with the results of the PFTs. His iron was a bit low too, so we're temporarily decreasing his iron supplement frequency.
Ricky's dizzy spells, meanwhile, have been debilitating now that the Topamax dose has been decreased. Monday he spent much of his school day sleeping off another dizzy spell. So I called the neurologist's nurse to ask what we should do. She called me back to tell me she'd ask the doctor and get back to me. She called back and left a voicemail... I couldn't believe her response. Either we increase the dose back up... Which will make him sleep all day again... Or he just "gets used to the dizziness sensation." Seriously? What kind of a choice is that, exactly? I was so livid I couldn't even call her back to tell her what our decision was (for now, I have not increased the dose). I don't know what to do. Second opinion? Angry voicemail to tell her just what I think of her message?
I've also been playing phone tag with the cardiology clinic. Ricky is supposed to go there for another heart ultrasound with regard to the enlarged aortic valve that the geneticist mentioned (the pulmonologist explained it to us, so now I know a little bit more about what we're looking at).
The aortic valve issue and the dizziness (in this case referred to as dysautonomia) could also be symptoms of Ehlers-Danlos. Of course, he's not going to be tested for that unless the genetic tests we're waiting on come back as normal. And we won't have those results for weeks.
Also made another psychiatrist appointment... It's been a while since Ricky's been to see his psychiatrist.
Things just never get dull around here, eh?
Ricky had an eventful week last week. On Monday, in addition to a bunch of other labs that he gets done yearly, he had his three hour glucose tolerance test, which ended up being normal, yay. That day he also saw his gastroenterologist and that went well, too.
On Tuesday, we had an eventful day. Ricky saw the endocrinologist, who looked over his other blood tests from the day before. His thyroid level was, as always, borderline low. Most of the other stuff looked normal. He has grown two inches in the past year, and the endocrinologist decided to put off any intervention with regard to his delayed puberty. They want us to come back in a year.
Next he had his yearly full pulmonary function tests. Those went well, and his numbers looked great.
Then Ricky saw the pulmonologist. His weight has flatlined and his growth curve is actually dropping. We're supposed to push lots of weight gain shakes. His lungs sounded great and the doc was pleased with the results of the PFTs. His iron was a bit low too, so we're temporarily decreasing his iron supplement frequency.
Ricky's dizzy spells, meanwhile, have been debilitating now that the Topamax dose has been decreased. Monday he spent much of his school day sleeping off another dizzy spell. So I called the neurologist's nurse to ask what we should do. She called me back to tell me she'd ask the doctor and get back to me. She called back and left a voicemail... I couldn't believe her response. Either we increase the dose back up... Which will make him sleep all day again... Or he just "gets used to the dizziness sensation." Seriously? What kind of a choice is that, exactly? I was so livid I couldn't even call her back to tell her what our decision was (for now, I have not increased the dose). I don't know what to do. Second opinion? Angry voicemail to tell her just what I think of her message?
I've also been playing phone tag with the cardiology clinic. Ricky is supposed to go there for another heart ultrasound with regard to the enlarged aortic valve that the geneticist mentioned (the pulmonologist explained it to us, so now I know a little bit more about what we're looking at).
The aortic valve issue and the dizziness (in this case referred to as dysautonomia) could also be symptoms of Ehlers-Danlos. Of course, he's not going to be tested for that unless the genetic tests we're waiting on come back as normal. And we won't have those results for weeks.
Also made another psychiatrist appointment... It's been a while since Ricky's been to see his psychiatrist.
Things just never get dull around here, eh?
Wednesday, February 24, 2010
We have a plan.
I called the CF nurse this morning after Ricky woke me up at 5:30am unable to breathe well, and having an upset stomach. I left a message that we needed to come in.
He had a neuro visit scheduled for 1 and the CF nurse called back later and said to come in at 11. So Ricky and I dropped Misty off at day care and headed up to Stanford.
Ricky has lost a little weight and is down to 97 pounds but he's up to 62 inches (5'2"). His oxygen saturation was 98 -- excellent -- and his spirometry was right where it has been for quite some time. His lungs sounded great as well. The doctor asked a lot of questions and, combined with the physical examination, concluded that whatever is going on with him, which is definitely significant, is not pulmonary.
So we had lunch at Taco Bell and then came back for his neurology appointment. First we saw a resident, because Ricky's doctor had been called to the OR. He came later. Both of them did thorough neuro exams on Ricky and apparently he was okay there. The ultimate decision was to back off on the Topamax so that he'd be on his old dose, and see if all of this stuff stops.
Our last appointment of the day was his bone density scan. That was fine... He was very good for it. :)
So I backed off on the Topamax tonight and by tomorrow he'll be on his old dose (25mg two times per day). Hopefully he starts to feel better.
He had a neuro visit scheduled for 1 and the CF nurse called back later and said to come in at 11. So Ricky and I dropped Misty off at day care and headed up to Stanford.
Ricky has lost a little weight and is down to 97 pounds but he's up to 62 inches (5'2"). His oxygen saturation was 98 -- excellent -- and his spirometry was right where it has been for quite some time. His lungs sounded great as well. The doctor asked a lot of questions and, combined with the physical examination, concluded that whatever is going on with him, which is definitely significant, is not pulmonary.
So we had lunch at Taco Bell and then came back for his neurology appointment. First we saw a resident, because Ricky's doctor had been called to the OR. He came later. Both of them did thorough neuro exams on Ricky and apparently he was okay there. The ultimate decision was to back off on the Topamax so that he'd be on his old dose, and see if all of this stuff stops.
Our last appointment of the day was his bone density scan. That was fine... He was very good for it. :)
So I backed off on the Topamax tonight and by tomorrow he'll be on his old dose (25mg two times per day). Hopefully he starts to feel better.
Ricky's sick
For about a week now, Ricky's dizziness has been far more severe (along with periodic fever and chills). He's been sleeping a lot more (like 8+ hours in the middle of the day one day last week!). He's had headaches and stomach aches, and just hasn't been feeling well.
The CF doc prescribed Septra, which I couldn't understand. This was clearly a virus as far as I could tell and the CF nurse could tell.
Well, then, today, Ricky slept all day yet again (he has had at least 4 hours of nap(s) every day since this started) and this evening, even after his breathing treatments, his chest was tight. He said that last night he'd had trouble getting to sleep because his breathing was bad.
Tomorrow he has an appointment with the neurologist and an appointment for his yearly bone density scan. Those are both up at Stanford and I'm going to try to get us there early so we can maybe see someone in the CF clinic. I do not like how quickly this has gone downhill!
The CF doc prescribed Septra, which I couldn't understand. This was clearly a virus as far as I could tell and the CF nurse could tell.
Well, then, today, Ricky slept all day yet again (he has had at least 4 hours of nap(s) every day since this started) and this evening, even after his breathing treatments, his chest was tight. He said that last night he'd had trouble getting to sleep because his breathing was bad.
Tomorrow he has an appointment with the neurologist and an appointment for his yearly bone density scan. Those are both up at Stanford and I'm going to try to get us there early so we can maybe see someone in the CF clinic. I do not like how quickly this has gone downhill!
Saturday, July 18, 2009
Update
Us on the fourth!
Hi everyone! Sorry it has been so long since I updated.
Ricky has been in summer school so I've had to get him back onto an earlier bedtime schedule. I am lucky that he has agreed that this is a good idea. He has been really good about his treatments, etc. Speaking of which... He's getting the new Respirtech vest system! He already has the Hill-Rom version but it's old and (and analog). The Respirtech vest is digital and automated and COMPACT! We will have it in time for our vacation the first week of August! Hooray! Look at how small it is! Here is more info about how this machine helps people with CF.
By the way, Ricky is still dizzy-spell-free! We have maxed out the Topamax dose... He was on 3/4 dose and still had very occasional spells so we went up to the max we are allowed to use. Hopefully this does the trick. I am just so relieved that he doesn't have to go through those anymore!!!
Still fighting those stupid insurance battles. It seems like every other med for Ricky requires a prior authorization. It is incredibly frustrating.
Ricky's gearing up for bipolar camp at the beginning of August. This will be his fourth year going and they've had it for five years now. He missed it two years ago because he was unstable.
Guess that's it for now!
Thursday, June 18, 2009
MRI today
Ricky had his MRI today. He had a dizzy spell/fatigue episode right before it but was okay by the time they did it. They accessed his port for the contrast that was going to run through while the MRI was done.
He got to watch "Little Vampires" in goggles while they did the MRI. Funny thing, the MRI tech had me take off my watch and glasses and remove my ATM card from my pocket before we went into the MRI room. She didn't notice my barette! Whenever I leaned over to talk to Ricky, my hair lifted up into the air. It felt like I was brushing my head on something. It was, in fact, the MRI machine trying to steal my barette! Hehe!
Once he was settled, I went out to the waiting room and my friend Kat and I went to get lunch while waiting. (Poor Ricky hadn't been allowed to eat since 9 -- poor kid! We took him for food afterward.)
Ricky did fine with the MRI. I'm not sure when we'll get results but we do see the endocrinologist next week and might find something out from him or her about what's going on with the pituitary gland (MRI was of the brain and pituitary gland, along with an additional MRI of the brain with contrast).
I'm proud of my boy. I hope this test offers some answers. Hopefully something that we can do something about!!
On the way home, we stopped for some geocaches and were visited by some friendly, curious, and affectionate ponies... (I'm assuming they're ponies since they were so small!)
He got to watch "Little Vampires" in goggles while they did the MRI. Funny thing, the MRI tech had me take off my watch and glasses and remove my ATM card from my pocket before we went into the MRI room. She didn't notice my barette! Whenever I leaned over to talk to Ricky, my hair lifted up into the air. It felt like I was brushing my head on something. It was, in fact, the MRI machine trying to steal my barette! Hehe!
Once he was settled, I went out to the waiting room and my friend Kat and I went to get lunch while waiting. (Poor Ricky hadn't been allowed to eat since 9 -- poor kid! We took him for food afterward.)
Ricky did fine with the MRI. I'm not sure when we'll get results but we do see the endocrinologist next week and might find something out from him or her about what's going on with the pituitary gland (MRI was of the brain and pituitary gland, along with an additional MRI of the brain with contrast).
I'm proud of my boy. I hope this test offers some answers. Hopefully something that we can do something about!!
On the way home, we stopped for some geocaches and were visited by some friendly, curious, and affectionate ponies... (I'm assuming they're ponies since they were so small!)
Friday, June 12, 2009
Neurology visit
Went to the neurologist on Wednesday and it went well. It was a pretty quick visit, but the good news is that Dr. O had followed Ricky's case in the hospital in April so I didn't have to go over everything with him again.
He did a neuro exam and then said he wanted to put Ricky on Topamax, a very tiny dose, to see if it helps with the dizzy spells. If it doesn't work, it doesn't work. We'll titrate it up until it does work (if it does) up to 50mg total per day.
He also wants to do a head MRI as well as a specialized MRI that looks at the blood vessels in the head to see if there is a problem there. I mentioned that the endocrinologist might be wanting to do a CT of the pituitary gland (it's something we were going to discuss at his appointment later this month) and he said he'd add that on.
I Twittered about the Topamax and got a number of responses from people who have been on it for various things. The terms like "dopamax" and talk of appetite suppression (the last thing Ricky needs) and mood swings worried me... So today I left a message for the neurology service and a nurse practitioner called me back. She said that the effects like those are from very LARGE doses, and Ricky will be on a very, very small dose. So... I think we are going to go ahead and try it.
Today was Ricky's last day of school. I guess it was a busy one because this afternoon and evening he was very tired and grumpy. :P Starting tomorrow he'll be off for a few weeks until he starts summer school.
Guess that's it for now!
He did a neuro exam and then said he wanted to put Ricky on Topamax, a very tiny dose, to see if it helps with the dizzy spells. If it doesn't work, it doesn't work. We'll titrate it up until it does work (if it does) up to 50mg total per day.
He also wants to do a head MRI as well as a specialized MRI that looks at the blood vessels in the head to see if there is a problem there. I mentioned that the endocrinologist might be wanting to do a CT of the pituitary gland (it's something we were going to discuss at his appointment later this month) and he said he'd add that on.
I Twittered about the Topamax and got a number of responses from people who have been on it for various things. The terms like "dopamax" and talk of appetite suppression (the last thing Ricky needs) and mood swings worried me... So today I left a message for the neurology service and a nurse practitioner called me back. She said that the effects like those are from very LARGE doses, and Ricky will be on a very, very small dose. So... I think we are going to go ahead and try it.
Today was Ricky's last day of school. I guess it was a busy one because this afternoon and evening he was very tired and grumpy. :P Starting tomorrow he'll be off for a few weeks until he starts summer school.
Guess that's it for now!
Tuesday, June 9, 2009
potpourri
Ricky, my soccer hero
Originally uploaded by Beckerbuns
Ricky had his last day of soccer for the spring on Sunday. He played hard and scored multiple goals. He was only able to play so well the last couple of weeks because he was sick for so long. :( Hopefully in the fall we will have better luck.
If you would like to see the rest of Ricky's pictures and videos from this season of soccer, they are here.
So, tomorrow is Ricky's long-awaited neurologist visit at Stanford. We used to have a pedi neuro in San Jose but he's not on the newest insurance and the docs at Stanford are. This one is highly regarded by Ricky's pulmonologist so he should be worth the wait.
Ricky has continued to have dizzy spells and spells of extreme fatigue. I hope that the neurologist has some ideas, because everybody else has tapped out their ideas. I found the CD of Ricky's brain MRI from two and a half years ago. I am hoping that this might help the doc, though he might want to do an MRI that shows different stuff. Not sure. I hope he will have had the time to review all of Ricky's test results from the hospital stay (echocardiogram, video EEG, etc.) because he had almost a full neuro workup. There isn't much left.
We saw the psychiatrist yesterday. Which reminds me, we finally got Ricky's meds late last week. It was a close call. He was actually out of meds and I was getting desperate, crying in desperation and wanting to throw the phone every time I had another frustrating conversation with the insurance company or doctor's office. Finally what it took was Dr. J, Ricky's psychiatrist, CALLING the insurance company to see what the heck they wanted from him. He had faxed the prior authorization forms repeatedly.
And finally, we are in the process of trying to get a new chest therapy vest from Respirtech. They make a newer, more technologically advanced, streamlined vest machine that can be programmed. (!!!) It is also smaller. We have the giant mondo original vest from Hill Rom and it is completely impossible (well, mostly) to take it on vacation. Hopefully we get the Respirtech vest (depends on CCS and insurance) because it would be great to have on vacations. Other methods of airway clearance just don't work as well for Ricky.
Ricky's last day of school is this Thursday. He has a little break and then has summer school during July. In August we (the three kids and me) are planning on going on a road trip to Oregon and Washington. We'll visit Dave's (Misty's dad) parents, do the tourist thing in Seattle, and then visit Kat in eastern Washington. We are really looking forward to the trip.
Guess that's it for now! Thank you all for keeping Ricky in your thoughts.
Thursday, May 14, 2009
Hi/Lo Thursday
This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.Our HIGHS
Ricky's lungs are staying well! He also had a successful visit to the psychiatrist.
Our LOWS
Ricky continues to have dizzy spells and exhaustion of unknown origin. None of the doctors have answers.
Tuesday, May 12, 2009
Ricky
Ricky was doing fine yesterday and went to school. I was almost to work, about 9:00, when I got a call that he wasn't feeling well. He said it felt like a bubble was in his chest, and he was very, very tired.
So he went to sleep and I went to get him.
I took Ricky to the pediatrician and his lungs apparently sounded fine. The doctor prescribed some prednisone but meanwhile I had been in touch with the CF nurse and I waited to hear from her to find out what to do. There was a possibility of Ricky going up to see the CF doc.
Well, we never heard from the CF nurse. But Ricky was feeling a bit better so we went on with our day.
He did have a dizzy spell as we were getting to the psychiatrist appointment that he had at 1:30 so I brought him in there in a wheelchair. I kind of vented at the psychiatrist about everything that has been going on with the dizzy spells and all, and he was very sympathetic.
Ricky's appetite has been much decreased, and in fact according to the scale at the pediatrician's office he has lost weight. :( Gotta work on that.
Today he went to school after a full night's sleep and seemed to be doing okay. Yay!
So he went to sleep and I went to get him.
I took Ricky to the pediatrician and his lungs apparently sounded fine. The doctor prescribed some prednisone but meanwhile I had been in touch with the CF nurse and I waited to hear from her to find out what to do. There was a possibility of Ricky going up to see the CF doc.
Well, we never heard from the CF nurse. But Ricky was feeling a bit better so we went on with our day.
He did have a dizzy spell as we were getting to the psychiatrist appointment that he had at 1:30 so I brought him in there in a wheelchair. I kind of vented at the psychiatrist about everything that has been going on with the dizzy spells and all, and he was very sympathetic.
Ricky's appetite has been much decreased, and in fact according to the scale at the pediatrician's office he has lost weight. :( Gotta work on that.
Today he went to school after a full night's sleep and seemed to be doing okay. Yay!
Monday, April 27, 2009
good to be home
Sunday was a day of ups and downs for Ricky. He frequently found himself sick to his stomach, exhausted, winded, you name it. It's tough trying to get around and get back to normal after you have been in bed for three weeks. During his last hospitalization, last year, there were an OT an PT who walked him around to get him used to movement again. This time, nobody did that. He got out of his bed and left the hospital, just like that. And he's paying the price in exhaustion.
This morning Ricky had one of his big dizzy spells, the kind where he ends up sleeping for a long time. He slept in the van (with the windows down) while Andrew and I went to Petco to get litter and cat food. I did manage to get Ricky out of the van for lunch. He had meat raviolis with creamy pesto sauce and proclaimed his lunch delicious!
I went ahead and had Ricky get into his soccer uniform even though I figured he wouldn't play, because today was picture day. I figured he could at least show up and support his team, and take the formal pictures with them. That went pretty well although he was still winded and dizzy from walking around. I know it will keep getting better as long as he keeps walking around, although sometimes with the dizzy spells I wish I had a wheelchair for him, poor guy. Here's a poor quality Treo photo of the group photo taking... Ricky is sitting on the bench on the far right (in red).
After soccer we picked Misty up and ran a couple of errands. One thing we did is go to Baskin-Robbins. Ricky got a large Jamoca malt (6 scoops of ice cream!) and sucked it down in a hurry. Then he got sick to his stomach and lay down at my mom's for a while after we got there. Poor kid!
Once we got home, Ricky did okay. He ate most of his dinner before he felt sick to his stomach (I'm wondering if that is an after effect of Friday's anesthesia) and had a quiet evening doing his breathing treatments. He is eager to get back to school, so I made sure that he got to bed on time, or, well, nearly on time. He is not going to be doing PE for a while, that's for sure!
This morning Ricky had one of his big dizzy spells, the kind where he ends up sleeping for a long time. He slept in the van (with the windows down) while Andrew and I went to Petco to get litter and cat food. I did manage to get Ricky out of the van for lunch. He had meat raviolis with creamy pesto sauce and proclaimed his lunch delicious!
I went ahead and had Ricky get into his soccer uniform even though I figured he wouldn't play, because today was picture day. I figured he could at least show up and support his team, and take the formal pictures with them. That went pretty well although he was still winded and dizzy from walking around. I know it will keep getting better as long as he keeps walking around, although sometimes with the dizzy spells I wish I had a wheelchair for him, poor guy. Here's a poor quality Treo photo of the group photo taking... Ricky is sitting on the bench on the far right (in red).
After soccer we picked Misty up and ran a couple of errands. One thing we did is go to Baskin-Robbins. Ricky got a large Jamoca malt (6 scoops of ice cream!) and sucked it down in a hurry. Then he got sick to his stomach and lay down at my mom's for a while after we got there. Poor kid!
Once we got home, Ricky did okay. He ate most of his dinner before he felt sick to his stomach (I'm wondering if that is an after effect of Friday's anesthesia) and had a quiet evening doing his breathing treatments. He is eager to get back to school, so I made sure that he got to bed on time, or, well, nearly on time. He is not going to be doing PE for a while, that's for sure!
Saturday, April 25, 2009
We are HOME!
Yes, home! Ricky called me this morning and told me that the nurse said he'd be coming home at 5:00pm. I dropped Andrew off at my mom's (Misty is at her dad's this weekend) and got up there as soon as I could. The plan was to finish the day's antibiotics and then go home. Yay!
I packed up a wagon with the rest of Ricky's stuff (I'd taken most of it home yesterday) and washed his laundry since he was out of underwear. Then it was a lot of hurry up and wait. Ricky ate his lunch and then lay down to sleep.
The resident came to speak with me and just went over a few last things. He said that the EEG was interpreted as being "abnormal" but yet... No seizures. Hmm. So that's something we need to investigate with the neurologist in June. We are also supposed to go to the pulmonologist in 4-6 weeks.
Ricky slept for several hours and then the nurse finally pushed the last flush through the IV and I deaccessed Ricky's port. He was still sleepy and he lay back down while we waited for the paperwork.
The nurse brought the discharge papers and I signed off on them. I helped Ricky get dressed. He was woozy and nauseated so when he finished getting dressed, I went to ask for someone to bring him to the car in a wheelchair; it was clear that he wouldn't be able to walk down. A nurse brought him down in the wheelchair and they waited while I got the car. I helped Ricky into the car, loaded all of his stuff into the back, and we were on our way!
Ricky continued to be a little nauseated and dizzy. I think it's probably a combination of being in bed for three weeks and also the general anesthesia from yesterday.
We went to my mom's to get Andrew and then went home. I can't even begin to tell you how wonderful it was to be home! I was weepy and happy and excited. Ricky took it all in stride. He and Andrew played video games. He had his meds and dinner and breathing treatments... AT HOME. Hooray!!!
I packed up a wagon with the rest of Ricky's stuff (I'd taken most of it home yesterday) and washed his laundry since he was out of underwear. Then it was a lot of hurry up and wait. Ricky ate his lunch and then lay down to sleep.
The resident came to speak with me and just went over a few last things. He said that the EEG was interpreted as being "abnormal" but yet... No seizures. Hmm. So that's something we need to investigate with the neurologist in June. We are also supposed to go to the pulmonologist in 4-6 weeks.
Ricky slept for several hours and then the nurse finally pushed the last flush through the IV and I deaccessed Ricky's port. He was still sleepy and he lay back down while we waited for the paperwork.
The nurse brought the discharge papers and I signed off on them. I helped Ricky get dressed. He was woozy and nauseated so when he finished getting dressed, I went to ask for someone to bring him to the car in a wheelchair; it was clear that he wouldn't be able to walk down. A nurse brought him down in the wheelchair and they waited while I got the car. I helped Ricky into the car, loaded all of his stuff into the back, and we were on our way!
Ricky continued to be a little nauseated and dizzy. I think it's probably a combination of being in bed for three weeks and also the general anesthesia from yesterday.
We went to my mom's to get Andrew and then went home. I can't even begin to tell you how wonderful it was to be home! I was weepy and happy and excited. Ricky took it all in stride. He and Andrew played video games. He had his meds and dinner and breathing treatments... AT HOME. Hooray!!!
Saturday, March 28, 2009
We're still alive...
Sorry it has been a while since I updated. A lot has happened recently. Last Friday, my mom fell and broke her right leg in two places. She subsequently had surgery followed by a hospital stay and then a rehab facility. Thankfully she is doing well there now.
Ricky had his quarterly CF clinic visit on Tuesday. He is about the same weight, just approaching 100 pounds -- gaining well for someone with CF. His PFTs were down a little so he has started back on Septra (oral antibiotic) and TOBI (inhaled antibiotic).
We go back two weeks after the appointment for more spirometry (the breathing tests) and then in three months for a checkup.
See the picture? That's Ricky's Student of the Month certificate! He was one of a handful of kids in his middle school who were chosen for this honor. I am so proud of him! So proud that I even took the kids to Chuck E. Cheese to celebrate. Now that's a nice mom! :)
On Friday I took Ricky up to Stanford again... For his neurology appointment. Turns out the appointment is actually APRIL 27. Oops! :) So we'll go back next month.
Until next time...
Ricky had his quarterly CF clinic visit on Tuesday. He is about the same weight, just approaching 100 pounds -- gaining well for someone with CF. His PFTs were down a little so he has started back on Septra (oral antibiotic) and TOBI (inhaled antibiotic).
We go back two weeks after the appointment for more spirometry (the breathing tests) and then in three months for a checkup.
See the picture? That's Ricky's Student of the Month certificate! He was one of a handful of kids in his middle school who were chosen for this honor. I am so proud of him! So proud that I even took the kids to Chuck E. Cheese to celebrate. Now that's a nice mom! :)
On Friday I took Ricky up to Stanford again... For his neurology appointment. Turns out the appointment is actually APRIL 27. Oops! :) So we'll go back next month.
Until next time...
Tuesday, March 17, 2009
Ricky's ENT visit
I just wrote about Ricky's visit in an email and it came out so well that I thought I'd copy it here rather than type it all over again!
We went to the ENT yesterday. I took a copy of the audiology report with me, and it's a good thing I did since they didn't have their copy handy.
Anyway, the resident did a few tests on Ricky, after hearing what the problem was. One was blowing air into Ricky's ears to see if that made him dizzy, and he then had him lay down and turn his head this way and that to see if that made him dizzy. None of that made him dizzy.
He and the attending ENT both think that it could be one of three things:
1. Migraines;
2. A heart arrhythmia of some kind; or
3. A problem from his CF that causes him to not have his blood oxygenated efficiently (doubtful because his CF is not that bad -- I think that's more of an endstage thing -- but who knows).
They also scoped his nose/sinuses because that is what he's usually seen by ENT for -- chronic sinusitis. No polyps in there.
They are deferring us to neuro (thankfully we finally got the authorization and have an appointment in April), and if the neuro exam is normal they suggest that the pediatrician refer us to a cardiologist, possibly to have him wear a Holter monitor for 24 hours or something along those lines.
I'm feeling a bit discouraged because I was hoping we'd get some answers. But I can wait til next month. Maybe the neurologist will have some answers for us.
We went to the ENT yesterday. I took a copy of the audiology report with me, and it's a good thing I did since they didn't have their copy handy.
Anyway, the resident did a few tests on Ricky, after hearing what the problem was. One was blowing air into Ricky's ears to see if that made him dizzy, and he then had him lay down and turn his head this way and that to see if that made him dizzy. None of that made him dizzy.
He and the attending ENT both think that it could be one of three things:
1. Migraines;
2. A heart arrhythmia of some kind; or
3. A problem from his CF that causes him to not have his blood oxygenated efficiently (doubtful because his CF is not that bad -- I think that's more of an endstage thing -- but who knows).
They also scoped his nose/sinuses because that is what he's usually seen by ENT for -- chronic sinusitis. No polyps in there.
They are deferring us to neuro (thankfully we finally got the authorization and have an appointment in April), and if the neuro exam is normal they suggest that the pediatrician refer us to a cardiologist, possibly to have him wear a Holter monitor for 24 hours or something along those lines.
I'm feeling a bit discouraged because I was hoping we'd get some answers. But I can wait til next month. Maybe the neurologist will have some answers for us.
Friday, March 13, 2009
Sharing Ricky's artwork + update
Ricky was assigned, apparently, to draw a picture of himself as a pirate lumberjack and then write a story to go with it. I was impressed with the results, especially since he hates to write. So I scanned the little project. :)
He says that purple stuff on the chest is chest hair. Arrr!
A few updates...
Yesterday I heard from the endocrinologist. Ricky's bone age x-ray came out in the low end of normal range. In other words, his bones are slightly on the young side but not out of the ordinary.
Today I made appointments for Ricky with the gastroenterologist and psychiatrist, both of which he is due to see for follow-up. I also finally got a call from the office of the new neurologist and I got an appointment for Ricky to see him. All of these appointments are in April.
Ricky sees the ENT on Monday.
He says that purple stuff on the chest is chest hair. Arrr!
A few updates...
Yesterday I heard from the endocrinologist. Ricky's bone age x-ray came out in the low end of normal range. In other words, his bones are slightly on the young side but not out of the ordinary.
Today I made appointments for Ricky with the gastroenterologist and psychiatrist, both of which he is due to see for follow-up. I also finally got a call from the office of the new neurologist and I got an appointment for Ricky to see him. All of these appointments are in April.
Ricky sees the ENT on Monday.
Sunday, March 8, 2009
various Ricky updates
I've had some behavioral issues with Ricky at home and at school, but believe it or not, as opposed to two years ago, I am pretty sure that this is a teenage thing. It worries me to think about what is to come when you combine the teenage thing with the bipolar thing.
Both of the boys had spring pictures taken this week. I had them both dress up and they both had haircuts.
This past week I spent a lot of time dealing with insurance issues surrounding three of Ricky's psych meds. The situation was that Blue Cross only allows one of each of these three pills per day. And he actually takes 5, 6, and 2.5 of them respectively. So they needed a prior authorization form from his psychiatrist. This was sent in on Tuesday and they claimed they hadn't gotten it yet. So I got the doctor's office to fax it again. I'm sure they got it the first time, but whatever. Stupid heads. :(
They finally authorized him to get 90 of two of them and 60 of another temporarily (not enough for a month, but a good start) and I picked those up on Friday night. SO aggravating. Since when are insurance companies allowed to say how much medication a person should be able to take!?!?
Next weekend, the boys and I are going to Mother-Son Weekend at YMCA Camp Campbell while Misty is with Dave. I managed to get $175 underwritten by the Y due to our financial need, and my mom paid the other $75. That reminds me that I need to take a better look at their packing list and figure out what we need to buy and take! :) The cabin has electricity and there are accommodations for Ricky's medical needs and equipment, so it should be great!
Ricky starts in spring VIP soccer on the 22nd. He has done the fall version three times but never spring. He really wanted to do it, so I signed him up. :) It's from 1:30 to 3:30 every Sunday for a while.
Ricky is also in social skills group again. This time around there are kids closer to his age and it will hopefully go better as opposed to last time, when they were all a bit older and intimidated him.
Today's ENT appointment has been rescheduled for March 16. I hope we can get some answers about the dizziness. He had another bad spell last week and has minor ones on a daily basis.
And here is our biggest news this week! As you might recall (actually I'm trying to remember how much I said about it at the time), in November, the kids, my mom and I were treated to a trip to San Francisco to do a patient testimonial for Genentech's fabulous drug Pulmozyme.
This week, Genentech's annual report came out and Ricky's the featured patient for Pulmozyme. You can see his page here.
This is Ricky's second time being featured on the Pulmozyme website.
Both of the boys had spring pictures taken this week. I had them both dress up and they both had haircuts.
This past week I spent a lot of time dealing with insurance issues surrounding three of Ricky's psych meds. The situation was that Blue Cross only allows one of each of these three pills per day. And he actually takes 5, 6, and 2.5 of them respectively. So they needed a prior authorization form from his psychiatrist. This was sent in on Tuesday and they claimed they hadn't gotten it yet. So I got the doctor's office to fax it again. I'm sure they got it the first time, but whatever. Stupid heads. :(
They finally authorized him to get 90 of two of them and 60 of another temporarily (not enough for a month, but a good start) and I picked those up on Friday night. SO aggravating. Since when are insurance companies allowed to say how much medication a person should be able to take!?!?
Next weekend, the boys and I are going to Mother-Son Weekend at YMCA Camp Campbell while Misty is with Dave. I managed to get $175 underwritten by the Y due to our financial need, and my mom paid the other $75. That reminds me that I need to take a better look at their packing list and figure out what we need to buy and take! :) The cabin has electricity and there are accommodations for Ricky's medical needs and equipment, so it should be great!
Ricky starts in spring VIP soccer on the 22nd. He has done the fall version three times but never spring. He really wanted to do it, so I signed him up. :) It's from 1:30 to 3:30 every Sunday for a while.
Ricky is also in social skills group again. This time around there are kids closer to his age and it will hopefully go better as opposed to last time, when they were all a bit older and intimidated him.
Today's ENT appointment has been rescheduled for March 16. I hope we can get some answers about the dizziness. He had another bad spell last week and has minor ones on a daily basis.
And here is our biggest news this week! As you might recall (actually I'm trying to remember how much I said about it at the time), in November, the kids, my mom and I were treated to a trip to San Francisco to do a patient testimonial for Genentech's fabulous drug Pulmozyme.
This week, Genentech's annual report came out and Ricky's the featured patient for Pulmozyme. You can see his page here.
This is Ricky's second time being featured on the Pulmozyme website.
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