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 bipolar disorder. Show all posts
Showing posts with label bipolar disorder. Show all posts
Wednesday, April 13, 2011
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!
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!
Friday, May 22, 2009
little update
Most of what we have been dealing with this week is Misty's illness (a stomach virus combined with pneumonia) but I did want to update about Ricky.
On Saturday he had a rage at a baby shower we were at because of a misunderstanding. I managed to get him to the car and calm him down eventually. It didn't even require extra psych meds. But it was scary. And frustrating because it was the first rage in a LONG time.
And then there is MORE stupid insurance company BS. And I am going to call these jerks out by name in this blog entry so that anyone who is considering signing up for this company through Healthy Families will think twice.
Tonight Misty and I went to Walgreens to fill her antibiotic prescription (Amoxicillin) and pick up several of Ricky's prescriptions. Guess what? The insurance company decided to REVOKE or CANCEL the prior authorization for one of Ricky's psych meds, Seroquel 100mg, that was issued in March. They say he should only take 30 pills per month. He takes four per day. The insurance company (Anthem Blue Cross) is power crazy and out of their heads. The representative of Anthem Blue Cross told the pharmacist on the phone that they WOULD pay for 400mg tablets, since he takes 400mg per day. If only it were that simple! He takes 250mg in the morning, 150mg at noon, and 150mg at dinner. The 50mg each time is made up by two 25mg tabs that we also get. 400mg tabs would not work. And with the prior auth revoked, we have to jump through the same hoops we jumped through in March, all over again. That took three weeks. If it takes that long again I'm going to write to the California Department of Managed Care. No, screw that. I'm going to write to them anyway. This is ridiculous. And you know what else? We were never treated this way by Blue Cross when we had them through Dave's employer. I am just about convinced that all of the hoops they've made us jump through since January are because the kids are covered under a state-sponsored plan. In my eyes, that is discrimination, and it's a big load of BS.
I feel a lot better having gotten that off my chest. And now, it's bedtime.
On Saturday he had a rage at a baby shower we were at because of a misunderstanding. I managed to get him to the car and calm him down eventually. It didn't even require extra psych meds. But it was scary. And frustrating because it was the first rage in a LONG time.
And then there is MORE stupid insurance company BS. And I am going to call these jerks out by name in this blog entry so that anyone who is considering signing up for this company through Healthy Families will think twice.
Tonight Misty and I went to Walgreens to fill her antibiotic prescription (Amoxicillin) and pick up several of Ricky's prescriptions. Guess what? The insurance company decided to REVOKE or CANCEL the prior authorization for one of Ricky's psych meds, Seroquel 100mg, that was issued in March. They say he should only take 30 pills per month. He takes four per day. The insurance company (Anthem Blue Cross) is power crazy and out of their heads. The representative of Anthem Blue Cross told the pharmacist on the phone that they WOULD pay for 400mg tablets, since he takes 400mg per day. If only it were that simple! He takes 250mg in the morning, 150mg at noon, and 150mg at dinner. The 50mg each time is made up by two 25mg tabs that we also get. 400mg tabs would not work. And with the prior auth revoked, we have to jump through the same hoops we jumped through in March, all over again. That took three weeks. If it takes that long again I'm going to write to the California Department of Managed Care. No, screw that. I'm going to write to them anyway. This is ridiculous. And you know what else? We were never treated this way by Blue Cross when we had them through Dave's employer. I am just about convinced that all of the hoops they've made us jump through since January are because the kids are covered under a state-sponsored plan. In my eyes, that is discrimination, and it's a big load of BS.
I feel a lot better having gotten that off my chest. And now, it's bedtime.
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.
Monday, December 1, 2008
final SSI exam, and housekeeping
After work today (at 1) I took Ricky to his SSI mental exam appointment. First he had a very abbreviated IQ test (this I found out because he told me and I saw the WISC paperwork and books on the desk) and then the psychologist brought me in to talk about Ricky's history, without Ricky there. We went over his birth and toddlerhood milestones and also talked about his mental health history.
So we should receive a final decision on Ricky's SSI benefits soon. I hope. I've been diligently sending them my paycheck stubs so they can see how much I make. His benefits may vary from month to month based on how little or how much I am making.
As a side note... The list of blogs we read, over to the right there, has grown and grown since I first started writing this blog. At first it consisted of other special needs kids blogs, but later it grew to all sorts of blogs. Today I finally gave Google Reader (for feeds) a try and realized that I could be reading all of these blogs over there in a much simpler way. So I've made a decision to cut down on the number of blogs listed here on Ricky's blog. From now on (once I start working on it here in a little bit) it will be a list of just the blogs dealing with special needs... CF or otherwise. If you are someone who is or was on that list and your blog doesn't fall into that category, never fear! I will still be reading your blog on a daily basis -- in Google Reader. I just want to keep the focus of Ricky's blog clear.
Hope everyone had a great Thanksgiving. :) Bye for now!
So we should receive a final decision on Ricky's SSI benefits soon. I hope. I've been diligently sending them my paycheck stubs so they can see how much I make. His benefits may vary from month to month based on how little or how much I am making.
As a side note... The list of blogs we read, over to the right there, has grown and grown since I first started writing this blog. At first it consisted of other special needs kids blogs, but later it grew to all sorts of blogs. Today I finally gave Google Reader (for feeds) a try and realized that I could be reading all of these blogs over there in a much simpler way. So I've made a decision to cut down on the number of blogs listed here on Ricky's blog. From now on (once I start working on it here in a little bit) it will be a list of just the blogs dealing with special needs... CF or otherwise. If you are someone who is or was on that list and your blog doesn't fall into that category, never fear! I will still be reading your blog on a daily basis -- in Google Reader. I just want to keep the focus of Ricky's blog clear.
Hope everyone had a great Thanksgiving. :) Bye for now!
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