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Sunday, January 22, 2012
Saturday, November 5, 2011
It's confirmed
In September we sent Peter's blood to a specialized lab in Vancouver to study his DNA and measure the length of his telomeres. Telomeres act like the plastic ends on your shoelaces, preventing your DNA from "unraveling". Someone with short telomeres generally has a lower life expectancy, and it's been observed that some of the longest-lived people have unusually long telomeres. There are two major categories of genetic disorders leading to bone marrow failure. We had ruled one out -- a defect in the body's DNA repair mechanism (of which the most common disorder is Fanconi Anemia). The results of the telomere test, which I heard about yesterday, confirm that Peter's defect is indeed in his telomeres and telomere biochemistry. His presumptive diagnosis is Dyskeratosis Congenita, an orphan disease even rarer than Fanconi Anemia. About 200 cases have been described in the international literature. It's estimated that incidence is 1 in a million. All of Peter's other signs and symptoms are highly suggestive of DC, and his hematologist started to suspect DC from the beginning, though he had never seen a case with his own eyes.
Nothing new comes with the diagnosis ... except ... I surprised myself by bursting into tears and sobbing my heart out when I heard it, because I had almost convinced myself (subconsciously) that Peter's current vim meant that his bone marrow might not have failed, that maybe there was more than 5% working now, and all of this was a fading nightmare. Yes, he really is going to die young. Before he's 30, probably, from infection due to a low white count, or bleeding due to low platelets. The longer he lives, the higher the chances that he will develop leukemia or aggressive cancer. Unraveling DNA does bad things. Cancers can't be treated effectively because a person with DC can't tolerate chemo or radiation, which are already harmful to DNA.
Of course, it's also good to know for sure what is going on, to have a name, and to be able to join a support group. There aren't nearly as many resources out there for DC families as there are for Fanconi families, but there are still a few opportunities. I'll be joining in a Skype call next Sunday. It will be good to connect with other moms and dads like me.
As usual, this new information prompted a wee-hours literature search online, to glean anything new I could find about DC and other telomere disorders. I am very eager to hear (eventually) about the results of DNA sequencing currently underway at Rockefeller University. They have a sample of Peter's blood and are putting his DNA through a rapid sequencing process that focuses on a relatively small part of the genome where the majority of genetic disorders have their origin. As in Fanconi, there are a number of different genes that are implicated in DC. There is evidence of differences in the course of the disease depending on the type of inheritance (autosomal recessive, x-linked, autosomal dominant) and the gene(s) involved. The length of the telomeres is a factor in life expectancy, but there are other telomere chemistry disturbances that also play a role, so length alone doesn't say much.
Based on Peter's signs and symptoms and age of bone marrow failure onset, I am guessing that he has an autosomal dominant form and that his defect is in the TERT, TERC or TINF2 genes. That means less of the visable signs that make for an earlier diagnosis in many cases: degrading fingernails, web-like pigmentation differences, and white patches in the mouth (leukoplakia). If I'm right, then his course will be characterized more by bone marrow failure, leukemia and malignancy. 30 would be a good guess as to his "likely" life expectancy, though that is just an average, and with his bone marrow failure already apparent, that is probably a stretch.
In addition to all of the above, I learned some amazing things from the explosion of research in DC that has recently happened. One of the reasons why scientists are so interested in DC is that some of its symptoms are similar to premature aging. Understanding the mechanisms behind a genetic telomere defect will carry over directly to a better understanding of the aging process -- and possibly finding ways to increase healthy longevity in genetically normal people. You can only imagine how big a deal THAT would be!
So ... shorter telomeres are linked to stressors during pregnancy. My poor little guy inherited his disorder, but most likely it was exacerbated by what must have been a really difficult prenatal environment based on what little we know. Neglect and deprivation are also linked to shorter telomeres. At least we don't have that to feel bad about. A very recent study demonstrated that people with DC (and short telomeres) are much more likely to have diabetes (an age-related disorder in most people). There is also a newly-discovered link between short telomeres and ... wait for it ... BIPOLAR DISORDER. All of this is new in just the last few years.
After the recent learnings about aging and shortening of telomeres, there are companies offering telomere analysis to predict a person's likely lifespan. Do not be deceived. The scientists who really understand this stuff say that the best simple predictor of your lifespan is still your date of birth. Think of all the money that will be spent on this nonsense by people who believe the hype.
Peter continues to be hale and hearty. His latest blood counts were almost identical to the previous round of tests last summer. His white and red counts are just below normal. His platelets remain very low (around 25) but that is not a "dangerous" level yet. We got him a flu shot. Last winter he was very healthy except for the diabetes that nearly dispatched him to the beyond before we identified it. Ever since we treated the diabetes, he's been much better. However, he is needing more and more and more insulin these days. Early organ failure is part of DC. People can even develop prematurely grey hair. Peter's pancreas is clearly toast at this point.
I wish I had a picture to share from the Homecoming Dance last weekend. Peter's special ed group went out to dinner at a nice restaurant and then went to the dance, where they had a special area and refreshment table for those who wanted it. Not Peter. He was out in the middle of the floor. He doesn't want to hang out with (his words) those "handicapped kids". He didn't dance WITH anyone, but he says he danced. I believe him!
At the start of school, Peter's drama teacher from last year, who has taken a shine to him, asked him to be her assistant for the year's first musical, Xanadu. So Peter has been caught up in a whirl of rehearsals where he has become an integral part of the cast and crew. It's not clear what he really does, but it's very clear that he loves it and that everyone loves him. Performances started on Thursday and continue through tonight. On the first performance day, Peter was presented with a card signed by everybody involved. He wouldn't let us look at it ("I got a card but you can't look at it because it's mine and I want to 'treasure it' on my own.") Of course I sneaked a peak. My eyes welled up. An outpouring of love. Last night he came home with a small bouquet of roses, given to him by one of the leads in the show. Tonight he'll experience the incredible fun and emotion of a cast party. Since he has another 4.5 years of high school, this is a wonderful development in his life. Something important to be part of. There is even the possibility of community theater down the road. What a blessing! Drama was one of only 2 or 3 "regular" classes he'll ever take.
I tried to talk to Peter about getting something nice to wear to the Homecoming Dance, but he refused to discuss it -- typical bipolar behavior. Then the night before the dance he suddenly wanted a sport coat. A sport coat? For a kid under 5 feet with a 44" chest? He begged. I couldn't imagine where to go, but eventually settled on Men's Warehouse. I knew that for Peter, if he had to roll up the sleeves, it would be OK as long as he had a sport coat. So in we went, and with great gravity, Peter asked for a sport coat in his size. The salesman measured him and immediately found a jacket that looked perfect. He quietly slipped it onto Peter and then -- magic. Peter stood in front of the mirror and his eyes just sparkled and sparkled. "I think I'll take this one", he said, with enormous dignity. It fits perfectly, and the sleeves are only an inch too long.
Before we went shopping, I found a pair of khaki dress pants that I had bought before Peter lost all the weight last winter due to untreated diabetes. Time was short, and my sewing stuff is packed due to my upcoming move, so I hemmed them with duct tape. (He's gained back all the weight and more, so they fit well). I figured he'd be happy with dress pants and a jacket. But after we bought the jacket, Peter suddenly said, "OK, mom, now we need dress shoes". DRESS SHOES? This boy wears the same pair of sneakers year in and year out. He'd wear the same pair of socks if he could. It is like moving a mountain to get him to change his socks. The stench can be dreadful sometimes. So off we went to Payless. I was anxious, because he rarely shops without a loud meltdown in public, and he had done so well at Men's Warehouse. I hoped we would find something quickly, but Peter's feet are malformed and therefore odd-shaped. We were lucky to bump into a neighboring dad who knows Peter well and -- in his youth -- sold shoes. He helped us find a perfect pair of slip-ons that Peter insisted on wearing out of the store. We couldn't leave, though, until he got some dress socks too.
I assumed that Peter would wear one of his spiffy extra-short extra-husky polo shirts with his new dress clothes. When left to his own devices, he typically puts on a polo (with jeans and sneakers) when other kids are dressing up. Thus, I was shocked and appalled when he came out of his room proudly wearing ... ugh ... a huge baggy men's v-neck undershirt from Wal-Mart. I had just bought some for him to keep him warm under his shirts and hoodies this winter. I did everything possible to convince him that an undershirt that was longer than his sport coat was NOT COOL (even daring to induce a meltdown) but he could. not. be. moved. He loved the undershirt, because it was a MEN'S undershirt. So off he went with great pride. I only wish he had allowed me to take a photo. He did look absolutely marvelous despite the undershirt.
That's my Peter. Making ever day count in his own peculiar way. May it always be so!
This is Peter with baby Aleiyah, the daughter of Rani Shields, a member of our very special SPICE family. She and her mother and sister came over from Tampa to the Give Kids the World Village one evening while we were on our Make-a-Wish Trip. Peter LOVES babies. I'm hoping that maybe he can have a part-time job in a daycare center when he finishes school.
Nothing new comes with the diagnosis ... except ... I surprised myself by bursting into tears and sobbing my heart out when I heard it, because I had almost convinced myself (subconsciously) that Peter's current vim meant that his bone marrow might not have failed, that maybe there was more than 5% working now, and all of this was a fading nightmare. Yes, he really is going to die young. Before he's 30, probably, from infection due to a low white count, or bleeding due to low platelets. The longer he lives, the higher the chances that he will develop leukemia or aggressive cancer. Unraveling DNA does bad things. Cancers can't be treated effectively because a person with DC can't tolerate chemo or radiation, which are already harmful to DNA.
Of course, it's also good to know for sure what is going on, to have a name, and to be able to join a support group. There aren't nearly as many resources out there for DC families as there are for Fanconi families, but there are still a few opportunities. I'll be joining in a Skype call next Sunday. It will be good to connect with other moms and dads like me.
As usual, this new information prompted a wee-hours literature search online, to glean anything new I could find about DC and other telomere disorders. I am very eager to hear (eventually) about the results of DNA sequencing currently underway at Rockefeller University. They have a sample of Peter's blood and are putting his DNA through a rapid sequencing process that focuses on a relatively small part of the genome where the majority of genetic disorders have their origin. As in Fanconi, there are a number of different genes that are implicated in DC. There is evidence of differences in the course of the disease depending on the type of inheritance (autosomal recessive, x-linked, autosomal dominant) and the gene(s) involved. The length of the telomeres is a factor in life expectancy, but there are other telomere chemistry disturbances that also play a role, so length alone doesn't say much.
Based on Peter's signs and symptoms and age of bone marrow failure onset, I am guessing that he has an autosomal dominant form and that his defect is in the TERT, TERC or TINF2 genes. That means less of the visable signs that make for an earlier diagnosis in many cases: degrading fingernails, web-like pigmentation differences, and white patches in the mouth (leukoplakia). If I'm right, then his course will be characterized more by bone marrow failure, leukemia and malignancy. 30 would be a good guess as to his "likely" life expectancy, though that is just an average, and with his bone marrow failure already apparent, that is probably a stretch.
In addition to all of the above, I learned some amazing things from the explosion of research in DC that has recently happened. One of the reasons why scientists are so interested in DC is that some of its symptoms are similar to premature aging. Understanding the mechanisms behind a genetic telomere defect will carry over directly to a better understanding of the aging process -- and possibly finding ways to increase healthy longevity in genetically normal people. You can only imagine how big a deal THAT would be!
So ... shorter telomeres are linked to stressors during pregnancy. My poor little guy inherited his disorder, but most likely it was exacerbated by what must have been a really difficult prenatal environment based on what little we know. Neglect and deprivation are also linked to shorter telomeres. At least we don't have that to feel bad about. A very recent study demonstrated that people with DC (and short telomeres) are much more likely to have diabetes (an age-related disorder in most people). There is also a newly-discovered link between short telomeres and ... wait for it ... BIPOLAR DISORDER. All of this is new in just the last few years.
After the recent learnings about aging and shortening of telomeres, there are companies offering telomere analysis to predict a person's likely lifespan. Do not be deceived. The scientists who really understand this stuff say that the best simple predictor of your lifespan is still your date of birth. Think of all the money that will be spent on this nonsense by people who believe the hype.
Peter continues to be hale and hearty. His latest blood counts were almost identical to the previous round of tests last summer. His white and red counts are just below normal. His platelets remain very low (around 25) but that is not a "dangerous" level yet. We got him a flu shot. Last winter he was very healthy except for the diabetes that nearly dispatched him to the beyond before we identified it. Ever since we treated the diabetes, he's been much better. However, he is needing more and more and more insulin these days. Early organ failure is part of DC. People can even develop prematurely grey hair. Peter's pancreas is clearly toast at this point.
I wish I had a picture to share from the Homecoming Dance last weekend. Peter's special ed group went out to dinner at a nice restaurant and then went to the dance, where they had a special area and refreshment table for those who wanted it. Not Peter. He was out in the middle of the floor. He doesn't want to hang out with (his words) those "handicapped kids". He didn't dance WITH anyone, but he says he danced. I believe him!
At the start of school, Peter's drama teacher from last year, who has taken a shine to him, asked him to be her assistant for the year's first musical, Xanadu. So Peter has been caught up in a whirl of rehearsals where he has become an integral part of the cast and crew. It's not clear what he really does, but it's very clear that he loves it and that everyone loves him. Performances started on Thursday and continue through tonight. On the first performance day, Peter was presented with a card signed by everybody involved. He wouldn't let us look at it ("I got a card but you can't look at it because it's mine and I want to 'treasure it' on my own.") Of course I sneaked a peak. My eyes welled up. An outpouring of love. Last night he came home with a small bouquet of roses, given to him by one of the leads in the show. Tonight he'll experience the incredible fun and emotion of a cast party. Since he has another 4.5 years of high school, this is a wonderful development in his life. Something important to be part of. There is even the possibility of community theater down the road. What a blessing! Drama was one of only 2 or 3 "regular" classes he'll ever take.
I tried to talk to Peter about getting something nice to wear to the Homecoming Dance, but he refused to discuss it -- typical bipolar behavior. Then the night before the dance he suddenly wanted a sport coat. A sport coat? For a kid under 5 feet with a 44" chest? He begged. I couldn't imagine where to go, but eventually settled on Men's Warehouse. I knew that for Peter, if he had to roll up the sleeves, it would be OK as long as he had a sport coat. So in we went, and with great gravity, Peter asked for a sport coat in his size. The salesman measured him and immediately found a jacket that looked perfect. He quietly slipped it onto Peter and then -- magic. Peter stood in front of the mirror and his eyes just sparkled and sparkled. "I think I'll take this one", he said, with enormous dignity. It fits perfectly, and the sleeves are only an inch too long.
Before we went shopping, I found a pair of khaki dress pants that I had bought before Peter lost all the weight last winter due to untreated diabetes. Time was short, and my sewing stuff is packed due to my upcoming move, so I hemmed them with duct tape. (He's gained back all the weight and more, so they fit well). I figured he'd be happy with dress pants and a jacket. But after we bought the jacket, Peter suddenly said, "OK, mom, now we need dress shoes". DRESS SHOES? This boy wears the same pair of sneakers year in and year out. He'd wear the same pair of socks if he could. It is like moving a mountain to get him to change his socks. The stench can be dreadful sometimes. So off we went to Payless. I was anxious, because he rarely shops without a loud meltdown in public, and he had done so well at Men's Warehouse. I hoped we would find something quickly, but Peter's feet are malformed and therefore odd-shaped. We were lucky to bump into a neighboring dad who knows Peter well and -- in his youth -- sold shoes. He helped us find a perfect pair of slip-ons that Peter insisted on wearing out of the store. We couldn't leave, though, until he got some dress socks too.
I assumed that Peter would wear one of his spiffy extra-short extra-husky polo shirts with his new dress clothes. When left to his own devices, he typically puts on a polo (with jeans and sneakers) when other kids are dressing up. Thus, I was shocked and appalled when he came out of his room proudly wearing ... ugh ... a huge baggy men's v-neck undershirt from Wal-Mart. I had just bought some for him to keep him warm under his shirts and hoodies this winter. I did everything possible to convince him that an undershirt that was longer than his sport coat was NOT COOL (even daring to induce a meltdown) but he could. not. be. moved. He loved the undershirt, because it was a MEN'S undershirt. So off he went with great pride. I only wish he had allowed me to take a photo. He did look absolutely marvelous despite the undershirt.
That's my Peter. Making ever day count in his own peculiar way. May it always be so!
Tuesday, September 13, 2011
A Dream is a Wish Your Heart Makes
Last week in Florida, all of Peter's most cherished dreams came true -- including the ones he didn't even know he was dreaming.
There is no way we ever adequately thank the Make-a-Wish Foundation and the amazing staff and volunteers at the "Give Kids the World" village in Kissimmee, Florida. We will never forget the hundreds of "cast members" and fellow visitors at each park who stopped to say hi, give Peter a high-five, and wish us a wonderful day.
Remember Cinderella's song, brought to life many years ago through the magic of Disney?
A dream is a wish your heart makes
When you're fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for you keep.
Have faith in your dreams and some day,
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dream that you wish will come true.
A dream is a wish your heart makes
When you're feeling small.
Alone in the night you whisper
Thinking no one can hear you at all.
You wake with the morning sunlight
To find fortune is smiling on you.
Don't let your heart be filled with sorrow.
For all you know tomorrow
The dream that you wish will come true.
When you can dream, then you can start.
A dream is a wish you make with your heart.
It will take me a while to put together a slide show that adequately conveys everything Peter, Leo, Annie and I experienced on Peter's "Wish Trip". We walked in joy and were wrapped in love, every moment of every day. We did everything Peter wanted to do, and he came home healthy and happy.
As many of you know, waiting in line for a ride at one of the Orlando parks can take an hour or more, and often the ride is only 2 or 3 minutes long. With our Make-a-Wish t-shirts and buttons, we didn't have to wait in any lines. When Peter said, "I wanna go again!" we could ... and did.
The most special part of Peter's wish was the chance to visit the Wizarding World of Harry Potter at Universal's Islands of Adventure. I can't begin to describe how just how astonishing TWWHP is for a first-time visitor. You are THERE, on Hogsmeade, drinking butter beer (yummy!) You are THERE, inside Hogwarts, with virtual-reality characters like Dumbledore shimmering in front of you, looking and sounding so real that you can practically smell them. The paintings on the wall talk to each other. Every detail is true, and crafted with exquisite care. The "Forbidden Journey" ride (the most technological advanced virtual reality experience ever created) is more thrilling than the fanciest, scariest roller coaster. You are swooping through the air being chased by Death Eaters, then diving among the turrets of Hogwarts to evade them, then following Harry at lightning speed as he goes head-to-head with Draco Malfoy on the Quidditch pitch, and it is REAL. You don't just see and hear it, you FEEL it as your body is tossed about in perfect synchronicity. I screamed so much in terror and delight that I am still hoarse almost a week later.
I had a special wish for our visit to TWWHP that Peter didn't know about. On Hogsmeade, groups of 20 are ushered into Ollivander's Wand Shop to experience "a wand finding its wizard". Lines are long, but we were able to join a group only 5 minutes after we arrived in front of the shop. Once inside, we were asked to stand a little to the right of the rest of our group. The shopkeeper went about his preparatory mumblings and putterings and greetings and then looked at Peter. "You, boy -- come here." And so it came to pass that Peter, who has memorized every moment of every Harry Potter movie, became the young wizard whose wand would, in a few magical minutes, find him. I stood in the corner with smiles and tears watching him performing the shopkeeper's instructions, including casting the "Wingardium Leviosa" spell ... and seeing something happen.
You can see for yourself how much this meant to him. And if it makes you shed a little tear, consider it an unexpected gift from Make-a-Wish to you, courtesy of my very special boy.
There is no way we ever adequately thank the Make-a-Wish Foundation and the amazing staff and volunteers at the "Give Kids the World" village in Kissimmee, Florida. We will never forget the hundreds of "cast members" and fellow visitors at each park who stopped to say hi, give Peter a high-five, and wish us a wonderful day.
Remember Cinderella's song, brought to life many years ago through the magic of Disney?
 |
| What do you say when your diabetic son begs for cotton candy on his Make-a-Wish trip? "Of COURSE you can!" and "God bless insulin." |
When you're fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for you keep.
Have faith in your dreams and some day,
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dream that you wish will come true.
A dream is a wish your heart makes
When you're feeling small.
Alone in the night you whisper
Thinking no one can hear you at all.
You wake with the morning sunlight
To find fortune is smiling on you.
Don't let your heart be filled with sorrow.
For all you know tomorrow
The dream that you wish will come true.
When you can dream, then you can start.
A dream is a wish you make with your heart.
It will take me a while to put together a slide show that adequately conveys everything Peter, Leo, Annie and I experienced on Peter's "Wish Trip". We walked in joy and were wrapped in love, every moment of every day. We did everything Peter wanted to do, and he came home healthy and happy.
As many of you know, waiting in line for a ride at one of the Orlando parks can take an hour or more, and often the ride is only 2 or 3 minutes long. With our Make-a-Wish t-shirts and buttons, we didn't have to wait in any lines. When Peter said, "I wanna go again!" we could ... and did.
The most special part of Peter's wish was the chance to visit the Wizarding World of Harry Potter at Universal's Islands of Adventure. I can't begin to describe how just how astonishing TWWHP is for a first-time visitor. You are THERE, on Hogsmeade, drinking butter beer (yummy!) You are THERE, inside Hogwarts, with virtual-reality characters like Dumbledore shimmering in front of you, looking and sounding so real that you can practically smell them. The paintings on the wall talk to each other. Every detail is true, and crafted with exquisite care. The "Forbidden Journey" ride (the most technological advanced virtual reality experience ever created) is more thrilling than the fanciest, scariest roller coaster. You are swooping through the air being chased by Death Eaters, then diving among the turrets of Hogwarts to evade them, then following Harry at lightning speed as he goes head-to-head with Draco Malfoy on the Quidditch pitch, and it is REAL. You don't just see and hear it, you FEEL it as your body is tossed about in perfect synchronicity. I screamed so much in terror and delight that I am still hoarse almost a week later.
I had a special wish for our visit to TWWHP that Peter didn't know about. On Hogsmeade, groups of 20 are ushered into Ollivander's Wand Shop to experience "a wand finding its wizard". Lines are long, but we were able to join a group only 5 minutes after we arrived in front of the shop. Once inside, we were asked to stand a little to the right of the rest of our group. The shopkeeper went about his preparatory mumblings and putterings and greetings and then looked at Peter. "You, boy -- come here." And so it came to pass that Peter, who has memorized every moment of every Harry Potter movie, became the young wizard whose wand would, in a few magical minutes, find him. I stood in the corner with smiles and tears watching him performing the shopkeeper's instructions, including casting the "Wingardium Leviosa" spell ... and seeing something happen.
 |
| The Wand Finds the Wizard at Ollivander's on Hogsmeade |
Sunday, September 4, 2011
Hand me a beer
Peter will have a pain-free "Wish", and chances are he'll be home safe on the 11th.
I finally found a hospital -- a good 40 miles away from the "Give Kids the World" Village -- that would accept our Illinois Public Aid. It has a well-regarded pediatric bone marrow transplant center, headed by a talented doctor with particular interest and experience in genetic bone marrow failure disorders. Unfortunately, the doctor wanted to see and examine Peter before giving him platelets. So the proposal was that we spend most of Wednesday driving to and from the hospital for the doctor visit, and most of Thursday getting the platelets. Um, no.
At this point I went back to my park-touring plans and reviewed every single thrill ride. There were more than I remembered in the "virtual reality" category -- your chair throws you around a little while 3-d video makes you feel like you're hurtling through space. I visited a few sites to figure out exactly what kind of movement would be the most dangerous for Peter and learned that any kind of g-forces (rapid acceleration and deceleration) were by far the worst. Then I Googled "Orlando rides g-forces" and sure enough, up came a list of the major thrill rides at each park with an estimate of the g-forces exerted on riders. That made it easy to figure out which rides had to be "off the table".
In the course of hopping around the web I also discovered that there is a YouTube video (or three or four or 50) of EVERY SINGLE RIDE at EVERY SINGLE PARK in Orlando. For rides that were on my "maybe" list, I watched the videos from start to finish to get a sense of the motion. I also found a couple of ride review sites which rated the "scariness" of the rides. Half of the "maybes" turned out to be just fine (or at least no more risk than riding a bike or having a football thrown at you, as Peter did this afternoon). A couple of others had to be moved to the "no fly" list. The remaining "maybes" are a little more vigorous than some might choose for a kid with low platelets, but they do not have substantial g-forces.
Then I went to Peter -- with a little support from Leo and Annie -- and told him that I had good news. "Guess what!! You're not going to have to go into the hospital on Sunday for platelets, and you won't have to go when we're at Disney, either!" (Peter: "YESSSS!!!") "The doctor says you don't have to have anything at all as long as you stay off the really big scary rides. (Peter: "Awww!! It's not fair!") "Well, OK, if that's really important to you, we can go ahead and put you in the hospital twice. It's your choice!" (Annie and Leo: "Hey, WE'RE not going on those rides ... you'd have to go all by yourself anyway.") (Peter: "hmmmm ... [pause] ..... YAAAYYY!!!! No platelets!!!")
It's a beautiful thing.
Tomorrow at this time we will be all moved into our two-story villa at "Give Kids the World", with our rental van in the driveway. We may be sitting by the pool with our legs in the water, watching the evening extravaganza. Or we might be getting ice cream at the "whenever you want it" ice cream parlor. Then again, Peter may be hanging out by the monster train layout with all sorts of buttons to push to control the trains, or sitting at the end of the dock fooling around with radio control boats. He might be fishing at the pond where someone will bait his hook for him and make sure he actually catches something. But probably not. My guess is he'll be in the computer/ videogame/ arcade area, playing Wii for all he's worth. And Leo and Annie? They will probably have filled the fridge with cold beer, so we can sit on our front porch in our rocking chairs with a cold beverage.
The limo comes at 6 tomorrow. They send a "stretch", because it thrills the wish kid, who gets to sit up front with the driver. Everything is paid for. We have a debit card from Make-a-Wish with enough cash on it for all of our meals, souvenirs and incidentals. The bags are packed. The kids are psyched. Yeah, I guess I am too. I never imagined in a million years that we would be a Make-a-Wish family. It was something that happened to other kids in other families. I'd give it up in a heartbeat if it would bring back the 95% of Peter's bone marrow that's gone. But, since that isn't an option, we are going to have a BLAST.
It's supposed to be stormy most of the week in Florida, but I went out to Wal-Mart and got (for $5 each) some colorful ponchos to keep us dry in the rain -- AND when Shamu uses his tail to soak the audience at Seaworld. The same ponchos go for $20 in Orlando. I have an enormous quantity of sunscreen and my "Florence of Arabia" hat, which protected me so well in the Peruvian Andes this July. The kids claim that they will all be wearing paper bags over their heads saying "we don't know that dorky lady". Don't care don't care don't care. I'VE got the debit card!
More from Florida ...
Chris
I finally found a hospital -- a good 40 miles away from the "Give Kids the World" Village -- that would accept our Illinois Public Aid. It has a well-regarded pediatric bone marrow transplant center, headed by a talented doctor with particular interest and experience in genetic bone marrow failure disorders. Unfortunately, the doctor wanted to see and examine Peter before giving him platelets. So the proposal was that we spend most of Wednesday driving to and from the hospital for the doctor visit, and most of Thursday getting the platelets. Um, no.
At this point I went back to my park-touring plans and reviewed every single thrill ride. There were more than I remembered in the "virtual reality" category -- your chair throws you around a little while 3-d video makes you feel like you're hurtling through space. I visited a few sites to figure out exactly what kind of movement would be the most dangerous for Peter and learned that any kind of g-forces (rapid acceleration and deceleration) were by far the worst. Then I Googled "Orlando rides g-forces" and sure enough, up came a list of the major thrill rides at each park with an estimate of the g-forces exerted on riders. That made it easy to figure out which rides had to be "off the table".
In the course of hopping around the web I also discovered that there is a YouTube video (or three or four or 50) of EVERY SINGLE RIDE at EVERY SINGLE PARK in Orlando. For rides that were on my "maybe" list, I watched the videos from start to finish to get a sense of the motion. I also found a couple of ride review sites which rated the "scariness" of the rides. Half of the "maybes" turned out to be just fine (or at least no more risk than riding a bike or having a football thrown at you, as Peter did this afternoon). A couple of others had to be moved to the "no fly" list. The remaining "maybes" are a little more vigorous than some might choose for a kid with low platelets, but they do not have substantial g-forces.
Then I went to Peter -- with a little support from Leo and Annie -- and told him that I had good news. "Guess what!! You're not going to have to go into the hospital on Sunday for platelets, and you won't have to go when we're at Disney, either!" (Peter: "YESSSS!!!") "The doctor says you don't have to have anything at all as long as you stay off the really big scary rides. (Peter: "Awww!! It's not fair!") "Well, OK, if that's really important to you, we can go ahead and put you in the hospital twice. It's your choice!" (Annie and Leo: "Hey, WE'RE not going on those rides ... you'd have to go all by yourself anyway.") (Peter: "hmmmm ... [pause] ..... YAAAYYY!!!! No platelets!!!")
It's a beautiful thing.
Tomorrow at this time we will be all moved into our two-story villa at "Give Kids the World", with our rental van in the driveway. We may be sitting by the pool with our legs in the water, watching the evening extravaganza. Or we might be getting ice cream at the "whenever you want it" ice cream parlor. Then again, Peter may be hanging out by the monster train layout with all sorts of buttons to push to control the trains, or sitting at the end of the dock fooling around with radio control boats. He might be fishing at the pond where someone will bait his hook for him and make sure he actually catches something. But probably not. My guess is he'll be in the computer/ videogame/ arcade area, playing Wii for all he's worth. And Leo and Annie? They will probably have filled the fridge with cold beer, so we can sit on our front porch in our rocking chairs with a cold beverage.
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| Florence of Arabia and her trusty steed |
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| This is NOT the hat and poncho I will be wearing in Florida! |
The limo comes at 6 tomorrow. They send a "stretch", because it thrills the wish kid, who gets to sit up front with the driver. Everything is paid for. We have a debit card from Make-a-Wish with enough cash on it for all of our meals, souvenirs and incidentals. The bags are packed. The kids are psyched. Yeah, I guess I am too. I never imagined in a million years that we would be a Make-a-Wish family. It was something that happened to other kids in other families. I'd give it up in a heartbeat if it would bring back the 95% of Peter's bone marrow that's gone. But, since that isn't an option, we are going to have a BLAST.
It's supposed to be stormy most of the week in Florida, but I went out to Wal-Mart and got (for $5 each) some colorful ponchos to keep us dry in the rain -- AND when Shamu uses his tail to soak the audience at Seaworld. The same ponchos go for $20 in Orlando. I have an enormous quantity of sunscreen and my "Florence of Arabia" hat, which protected me so well in the Peruvian Andes this July. The kids claim that they will all be wearing paper bags over their heads saying "we don't know that dorky lady". Don't care don't care don't care. I'VE got the debit card!
More from Florida ...
Chris
Wednesday, August 24, 2011
Make-a-What?
It's been a tough week on the Make-a-Wish front. Peter's hematologist, who approved the Make-a-Wish trip to Orlando 2 months ago without even THINKING about platelets, is now saying that he will not allow Peter to ride anything at all unless his platelets are at least 50.
He says the platelet infusion will only last 2 days but before riding anything the 2nd day, Peter needs to have blood counts done. Counts every 48 hours.
The M-a-W village is in Kissimmee, not far from the parks but a long way from the city of Orlando. The hospital that M-a-W recommends is Arnold Palmer Children's Hospital in Orlando. It sounds marvelous, but it's 25-30 miles from the M-a-W village, in the middle of the city, and we've been advised that the platelet infusion will take most of a day (including travel time, parking, registration, typing and matching, waiting for the platelets to be delivered, inserting the IV, waiting for the platelets to infuse, waiting to make sure there's no allergic reaction, and then driving back out to Kissimmee).
As for getting a blood count done, considering the location of the hospital, it will eat up at least half a day each time. He wants us to do it 3 times, plus spending a day getting a platelet infusion.
So the way it appears, we will be spending most of our time in Florida at a hospital. And yet:
WE DELIBERATELY CHOSE THE PATH WE ARE ON TO AVOID HOSPITALS!
We haven't even been in a doctor's office in months. Now Peter gets a trip of a lifetime and is expected to spend most of it at a hospital?
I burst into tears when talking with the nurse (the doc has been too busy to talk) and she said, "Well, tell him he can do everything else but he can't take rides. That's just the way it is." Right -- so YOU tell him, and then tell him again each time he sees a ride he can't go on. You explain to him why it's the way it is. He doesn't even understand that he's sick! He doesn't have any limitations here at home.
She said, "Lots of kids at Make-a-Wish are too sick to go to the parks. Everyone says that the village itself is a whole lot of fun. So, if it's going to bother him, just stay in the village." My problem? He's not too sick to go to the parks. He feels absolutely fine.
We could have chosen a different wish if the doc had raised any concern. We could have set expectations about avoiding exciting rides if the doc had raised any concern. As far as I can tell, no one looked at his chart and thought about him at all before approving the trip. In fact, had I not called started asking questions because I had developed concerns on my own, we would have gone to Orlando without any knowledge of risk.
Not only that -- Peter went to the 4th of July carnival in our town just a few weeks ago and rode rides all afternoon. No one ever told us any different. And, to be honest, he's had platelet levels <50 for at least 3.5 years, and we only found out about it last November. He's been to ... hmmm ... maybe 5 carnivals in that time?
I'm not trying to convince myself that this isn't a life-threatening danger, because it is. I've done the reading. He really could have a bleed in his brain. He really could die. So, hard as it will be, I'm willing to follow a modified plan:
-- Get the platelets on Sunday (though Peter will need Ativan as always to get through IV insertion and not rip the needle out of his arm).
He says the platelet infusion will only last 2 days but before riding anything the 2nd day, Peter needs to have blood counts done. Counts every 48 hours.
The M-a-W village is in Kissimmee, not far from the parks but a long way from the city of Orlando. The hospital that M-a-W recommends is Arnold Palmer Children's Hospital in Orlando. It sounds marvelous, but it's 25-30 miles from the M-a-W village, in the middle of the city, and we've been advised that the platelet infusion will take most of a day (including travel time, parking, registration, typing and matching, waiting for the platelets to be delivered, inserting the IV, waiting for the platelets to infuse, waiting to make sure there's no allergic reaction, and then driving back out to Kissimmee).
As for getting a blood count done, considering the location of the hospital, it will eat up at least half a day each time. He wants us to do it 3 times, plus spending a day getting a platelet infusion.
So the way it appears, we will be spending most of our time in Florida at a hospital. And yet:
WE DELIBERATELY CHOSE THE PATH WE ARE ON TO AVOID HOSPITALS!
We haven't even been in a doctor's office in months. Now Peter gets a trip of a lifetime and is expected to spend most of it at a hospital?
I burst into tears when talking with the nurse (the doc has been too busy to talk) and she said, "Well, tell him he can do everything else but he can't take rides. That's just the way it is." Right -- so YOU tell him, and then tell him again each time he sees a ride he can't go on. You explain to him why it's the way it is. He doesn't even understand that he's sick! He doesn't have any limitations here at home.
She said, "Lots of kids at Make-a-Wish are too sick to go to the parks. Everyone says that the village itself is a whole lot of fun. So, if it's going to bother him, just stay in the village." My problem? He's not too sick to go to the parks. He feels absolutely fine.
We could have chosen a different wish if the doc had raised any concern. We could have set expectations about avoiding exciting rides if the doc had raised any concern. As far as I can tell, no one looked at his chart and thought about him at all before approving the trip. In fact, had I not called started asking questions because I had developed concerns on my own, we would have gone to Orlando without any knowledge of risk.
Not only that -- Peter went to the 4th of July carnival in our town just a few weeks ago and rode rides all afternoon. No one ever told us any different. And, to be honest, he's had platelet levels <50 for at least 3.5 years, and we only found out about it last November. He's been to ... hmmm ... maybe 5 carnivals in that time?
I'm not trying to convince myself that this isn't a life-threatening danger, because it is. I've done the reading. He really could have a bleed in his brain. He really could die. So, hard as it will be, I'm willing to follow a modified plan:
-- Get the platelets on Sunday (though Peter will need Ativan as always to get through IV insertion and not rip the needle out of his arm).
-- Do rides on Monday and Tuesday.
-- No rides on Wednesday.
-- Platelets on Thursday (more sedative to get through the procedure ... never mind the screaming all the way there and the crying the night before).
-- Do rides on Friday and Saturday.
-- No rides on Sunday.
If I try to discuss this with Peter in advance, it'll just end in a screaming fit. But it doesn't matter whether we discuss it in advance or not. On Wednesday and Sunday, if we walk past a ride he wants to go on and I tell him again that he can't do it, he will beg and shriek and cry. He will be heartbroken. But I'm willing to gut it out to keep him reasonably safe. Two days with no rides and most of a day in the hospital. What I'm NOT willing to do is lose big parts of two additional days driving an hour each way to get blood counts done and then waiting for the results.
The doctor's nurse said, "Well, that's what the doctor says he wants, otherwise he's not going to let you go".
Oh really? He's not? Why didn't he speak up months ago? (I imagine he feels fairly panicked realizing -- once I brought the issue to the table -- that he approved the trip without thinking).
The thing is, the one thing that we have always emphasized to the doctor, and that's he's acknowledged and said he honored, is that we don't want Peter to live like a sick boy. That's why Peter goes to gym class. That's why he rides his bike. We chose this path for a reason. And we could have avoided tranquilizing him for platelets, spending most of a day in Florida getting more platelets (and tranquilizing him again) if there had been any foresight.
So now Peter gets "no, you can't do that, your blood is sick" and "sorry, we can't go to a park that day, you need platelets". And I'm the one who has to deliver that message, and hear him sob. He has bipolar disorder. He will rage and sob and scream and curse. He'll shriek "I HATE YOU!" to me over and over. He won't let anyone comfort him. His brother and sister will be embarrassed. It could go on for an hour, or even more. And not just once. It could happen several times.
We've told him over and over that this time, he can go on rides as much as he wants. I DIDN'T HAVE TO SAY THAT TO HIM! WHY DIDN'T SOMEBODY TELL ME??? WE DIDN'T HAVE TO BE DOING THIS!
We've chosen no interventions + palliative care for Peter when the time comes. In late May, his counts had unexpectedly gone up so much that the doc said we didn't need to see him for 3 or 4 months. If we were opting for aggressive treatment, we'd be in the doc's face. There's no way he would have approved the trip without bringing up the platelets issue.
We didn't have to plan this trip at all. Peter lives as a normal boy in his daily life. This trip will end up being all about being sick, about things he can't do. Yeah, there are lots of great things to do there, and yeah, he will enjoy some of them. But he will also cry a lot, and rage a lot. He shouldn't have to do that on his Make-a-Wish trip.
But ... I'm told that letting him ride a roller coaster is life-threatening. How can I ignore that? I love my son. Right now we don't see a particular limit on his time. He's most likely to die from an infection --eventually -- but right now his white count is pretty good. He could live for a year or two or three. So being dogmatic about this -- "he gets to do whatever he wants, damn the torpedos" feels like child abuse. He's happy in his life. He's not able to assess the risks. That's what a parent is for.
And then there's the idea of actually seeing him go up in the roller coaster and wondering if this will be his last day on earth. And blaming myself if it is. Because he will have gone to Florida as a healthy boy and come back dead, and it would have been entirely avoidable.
If you have a kid who is allergic to peanuts, you don't create a situation where you've promised him over and over that for once in his life, he can eat what everybody else does and then have to tell him -- while he sees everyone else eating peanuts -- that oops, he's sick, the doctor says he can't have them.
Though I am very torn up about all of this, I'm pretty comfortable with my revised plan. One day in the hospital for platelets, and probably we can get in some park time in the late afternoon and evening. Two "no ride" days. It will be hard, both for me and for Peter, but even that hinges on one critical factor.
Peter's insurance is Illinois Medicaid. He hasn't had any other insurance since we starting seeing our hematologist. We have trouble finding medical providers HERE IN ILLINOIS who will take Medicaid. Now what are the chances that Arnold Palmer Children's Hospital in Orlando will take Illinois Medicaid for a platelet infusion?
I have a call in to the hospital. I expect to hear from them tomorrow. I know they would take him into their E.R. if his condition was critical, but I can't imagine that they have ANY way to recover $$ from the state of Illinois for a pre-planned platelet infusion.
I can't avoid the question now and throw myself on their mercy later, because I have to know if we're going to get platelets or not. We can't go all the way to the hospital and be turned away.
I had a good cry in the ladies room at work this afternoon, and if we can't get platelets in Florida, tomorrow is going to be a pretty big washout. I am made of strong stuff but this just breaks me. Give a kid a chance to dream and then shatter it? Screw that.
If I try to discuss this with Peter in advance, it'll just end in a screaming fit. But it doesn't matter whether we discuss it in advance or not. On Wednesday and Sunday, if we walk past a ride he wants to go on and I tell him again that he can't do it, he will beg and shriek and cry. He will be heartbroken. But I'm willing to gut it out to keep him reasonably safe. Two days with no rides and most of a day in the hospital. What I'm NOT willing to do is lose big parts of two additional days driving an hour each way to get blood counts done and then waiting for the results.
The doctor's nurse said, "Well, that's what the doctor says he wants, otherwise he's not going to let you go".
Oh really? He's not? Why didn't he speak up months ago? (I imagine he feels fairly panicked realizing -- once I brought the issue to the table -- that he approved the trip without thinking).
The thing is, the one thing that we have always emphasized to the doctor, and that's he's acknowledged and said he honored, is that we don't want Peter to live like a sick boy. That's why Peter goes to gym class. That's why he rides his bike. We chose this path for a reason. And we could have avoided tranquilizing him for platelets, spending most of a day in Florida getting more platelets (and tranquilizing him again) if there had been any foresight.
So now Peter gets "no, you can't do that, your blood is sick" and "sorry, we can't go to a park that day, you need platelets". And I'm the one who has to deliver that message, and hear him sob. He has bipolar disorder. He will rage and sob and scream and curse. He'll shriek "I HATE YOU!" to me over and over. He won't let anyone comfort him. His brother and sister will be embarrassed. It could go on for an hour, or even more. And not just once. It could happen several times.
We've told him over and over that this time, he can go on rides as much as he wants. I DIDN'T HAVE TO SAY THAT TO HIM! WHY DIDN'T SOMEBODY TELL ME??? WE DIDN'T HAVE TO BE DOING THIS!
We've chosen no interventions + palliative care for Peter when the time comes. In late May, his counts had unexpectedly gone up so much that the doc said we didn't need to see him for 3 or 4 months. If we were opting for aggressive treatment, we'd be in the doc's face. There's no way he would have approved the trip without bringing up the platelets issue.
We didn't have to plan this trip at all. Peter lives as a normal boy in his daily life. This trip will end up being all about being sick, about things he can't do. Yeah, there are lots of great things to do there, and yeah, he will enjoy some of them. But he will also cry a lot, and rage a lot. He shouldn't have to do that on his Make-a-Wish trip.
But ... I'm told that letting him ride a roller coaster is life-threatening. How can I ignore that? I love my son. Right now we don't see a particular limit on his time. He's most likely to die from an infection --eventually -- but right now his white count is pretty good. He could live for a year or two or three. So being dogmatic about this -- "he gets to do whatever he wants, damn the torpedos" feels like child abuse. He's happy in his life. He's not able to assess the risks. That's what a parent is for.
And then there's the idea of actually seeing him go up in the roller coaster and wondering if this will be his last day on earth. And blaming myself if it is. Because he will have gone to Florida as a healthy boy and come back dead, and it would have been entirely avoidable.
If you have a kid who is allergic to peanuts, you don't create a situation where you've promised him over and over that for once in his life, he can eat what everybody else does and then have to tell him -- while he sees everyone else eating peanuts -- that oops, he's sick, the doctor says he can't have them.
Though I am very torn up about all of this, I'm pretty comfortable with my revised plan. One day in the hospital for platelets, and probably we can get in some park time in the late afternoon and evening. Two "no ride" days. It will be hard, both for me and for Peter, but even that hinges on one critical factor.
Peter's insurance is Illinois Medicaid. He hasn't had any other insurance since we starting seeing our hematologist. We have trouble finding medical providers HERE IN ILLINOIS who will take Medicaid. Now what are the chances that Arnold Palmer Children's Hospital in Orlando will take Illinois Medicaid for a platelet infusion?
I have a call in to the hospital. I expect to hear from them tomorrow. I know they would take him into their E.R. if his condition was critical, but I can't imagine that they have ANY way to recover $$ from the state of Illinois for a pre-planned platelet infusion.
I can't avoid the question now and throw myself on their mercy later, because I have to know if we're going to get platelets or not. We can't go all the way to the hospital and be turned away.
I had a good cry in the ladies room at work this afternoon, and if we can't get platelets in Florida, tomorrow is going to be a pretty big washout. I am made of strong stuff but this just breaks me. Give a kid a chance to dream and then shatter it? Screw that.
Sunday, August 21, 2011
My Wish
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| Peter & buddies at SPICE Indian Heritage Camp in June |
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| "Mom! No more pictures!" |
The only thing I totally forgot about -- until yesterday -- was Peter's low platelet count. He still seems pretty well, so I'm guessing his white count and hemoglobin are still on the high side of low. But his platelets have never been higher than 45 during the past 3 1/2 years. The latest reading (in late May) was 28. Spontaneous bleeds (with no outside forces) are likely when platelets go under 10. He went down to 14 in late February but recovered into the high 30s and low 40s thereafter. But the platelets started heading down again within a few weeks. Peter LOVES roller coasters and other "scary" rides that drop him long distances, throw him around, and turn him upside down. So do Leo and Annie. So all they talk about are the many, many "violent" rides in each park and how they're going to do each one of them 3 times.
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| Annie, Leo and Peter playing "Indian Idol" judges at SPICE |
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| Peter with Louisa and baby Aleiyah |
I've been emailing with a special advisor, an expert pediatric hematologist who is in the process of adopting a little boy from India. I met her on the Indian adoption listserv where I've been hanging out for 15+ years now. She has already been incredibly helpful to me with her medical advice but even more so by validating and supporting my choices. She tells me I'm doing a good job. I really need to hear that!
Her practical advice fits with my own inclinations, which is to take Peter and let him do whatever he wants, but be ready to make decisions if the need should arise. Do I want a total DNR (do not resuscitate) or a selective DNR? Would I allow his skull to be tapped to relieve pressure? How about surgery to remove a piece of his skull? If he can't breathe on his own, do I want him intubated? If he is doing OK and then "codes", do I want them to "beat on him" and use the paddles in case they can "bring him back" whole?
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| Sparklers! Peter's favorite part of SPICE! |
This trip is suddenly terrifying. What if he seems a little dizzy coming off a ride? What if Annie tells me he bumped his head? What if he says he's got a headache? What if he feels queasy? And how will I sleep at night without checking him constantly, since any symptoms of brain trauma might well show up then? I've spoken to Leo and Annie about this, and they absolutely, positively don't want to deal with it. Peter is very normal at the moment and "Mom always expects the worst and goes overboard." Peter's dad says the same thing. Apparently by even bringing up these possibilities, I mark myself as a hysteric. Believe me, the most hysterical thing I've done through all of this is cry quietly in my own room and tap out these messages.
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| Peter with Annie and Harry |
I do not expect the worst. I expect to come home with a happy and healthy Peter, and hundreds of great photographs. But I must, I MUST at least PREPARE myself for the worst. If he should have a bleed on our trip, I have to swing into action without falling apart. I'll have Leo and Annie to think about too, not just Peter. And I won't be at home, where friends and neighbors can steady me.
My correspondent and another close doctor friend have suggested that Peter should get an infusion of packed platelets before he goes to Florida. I haven't planned on that, but it is certainly do-able. The only thing is, infused platelets only last 3-4 days. If we gave him an infusion on Friday, most of it would be gone before he hit his first roller coaster. So that's the long and the short of it. I hope Peter and I will both see our wishes fulfilled, but if someone has to lose, let it be me. I'd rather come home without him than tell him he can't do everything he wants to do now.
Monday, August 15, 2011
Smarter than we thought
Peter's need for insulin has been so low during the past 3 months that he's rarely had more than one injection a day. We've been amazed at his consistent blood sugar readings from hour to hour and day to day. And I'd started to notice a lot of missing food, and empty ice cream bowls in the sink. Gosh, I thought, he's got to be sneaking food. But it doesn't seem to be affecting his sugar. What the heck could be going on? We know Peter is genetically "different", but is this really possible?
Today Carl took Peter to the endocrinologist for a checkup and to put the final touches on his diabetes management plan for this school year. Peter must have assumed that his secret wouldn't keep, because while waiting to be called he confided in Carl that he had been putting down erroneous readings in his log book. (We've been letting him handle his testing on his own for some time now, as long as he calls out his readings to us while writing them down).
This all began after our last appointment when the doctor spoke to Peter about the cheating he was obviously doing. There was no other explanation for readings that went sky high between meals after giving him sufficient insulin to correct for any excess sugar and cover what he ate. So Peter went undercover, chosing values in the 100-120 range seemingly randomly. And then he ate exactly what he liked. When Carl got home, he checked the memory on Peter's testing device and -- yeowch! -- there were many, many readings over 200.
Peter is typically a really bad liar. ("Where did you go Peter? You didn't ask permission!" "Not to 7-Eleven, Mom!") But this time -- 60 IQ and all -- he created an incredibly believable remission from diabetes. He heard the doctor telling me that some kids experience a "honeymoon" period after they are first treated with insulin, which can last up to a year. Well, Peter's self-initiated honeymoon allowed him to eat a LOT of high carb foods. No WONDER he's put on so much weight!
Now we're back to the original problem: cheating. Twice this evening I've heard him rustling around in the kitchen, doing "nothing, Mom, just checking something." The second time I heard him close the door of his room very, very softly. I suspect surreptitious eating, but I'm loathe to burst in on him. His bipolar medication gives him terrible carb cravings. And, as a fellow sufferer who never met a sweet thing she didn't want, I am soooo sympathetic.
If anyone has any brilliant ideas about keeping a compulsive eater with no self-discipline from packing in the carbs and packing on the pounds, I'd love to hear them. So would my bathroom scale, my sore knees, my aching feet, and all the clothes in the closet that I can't fit into.
Today Carl took Peter to the endocrinologist for a checkup and to put the final touches on his diabetes management plan for this school year. Peter must have assumed that his secret wouldn't keep, because while waiting to be called he confided in Carl that he had been putting down erroneous readings in his log book. (We've been letting him handle his testing on his own for some time now, as long as he calls out his readings to us while writing them down).
This all began after our last appointment when the doctor spoke to Peter about the cheating he was obviously doing. There was no other explanation for readings that went sky high between meals after giving him sufficient insulin to correct for any excess sugar and cover what he ate. So Peter went undercover, chosing values in the 100-120 range seemingly randomly. And then he ate exactly what he liked. When Carl got home, he checked the memory on Peter's testing device and -- yeowch! -- there were many, many readings over 200.
Peter is typically a really bad liar. ("Where did you go Peter? You didn't ask permission!" "Not to 7-Eleven, Mom!") But this time -- 60 IQ and all -- he created an incredibly believable remission from diabetes. He heard the doctor telling me that some kids experience a "honeymoon" period after they are first treated with insulin, which can last up to a year. Well, Peter's self-initiated honeymoon allowed him to eat a LOT of high carb foods. No WONDER he's put on so much weight!
Now we're back to the original problem: cheating. Twice this evening I've heard him rustling around in the kitchen, doing "nothing, Mom, just checking something." The second time I heard him close the door of his room very, very softly. I suspect surreptitious eating, but I'm loathe to burst in on him. His bipolar medication gives him terrible carb cravings. And, as a fellow sufferer who never met a sweet thing she didn't want, I am soooo sympathetic.
If anyone has any brilliant ideas about keeping a compulsive eater with no self-discipline from packing in the carbs and packing on the pounds, I'd love to hear them. So would my bathroom scale, my sore knees, my aching feet, and all the clothes in the closet that I can't fit into.
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