Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 I do not know but I have had no access to anything. I called in Wa state and then again here in OK and I was sent a letter that said they had sent a form to our doctor and that he did not qualify. It is hard to argue with them!!! or even advocate for him under the circumstances. BARBIE Re: ????? > > > --- > Deska, > I guess I should have emailed you privately, since Im responding to > all your posts:), Ive been gone camping for a couple weeks. But, maybe > one of the other new moms wouldnt know this, so I'll go ahead and post > it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES > qualify a child for MAW. We went last yr for my daughter, who is now > ten, with CVID/asthma. We went to Give Kids the World Village in > Kissimee, which is way too awesome to believe, and Disney. It was a > MUCH needed break. We hadnt vacationed since before our youngest son > was born, and he was five last yr when we went. This yr, our 8 yr old > son has asked for his Wish. We are going to a resort with a Pirate > Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s > a big jack sparrow fan:) We leave next Friday.....we SO need this > vacation, its been a long, tough winter. MAW covers everything, > flight, hotel, food, tickets, rental vehicle. Expense check to eat > out/etc. It is not based on your income, its based on y our childs dx. > You can go online and fill out forms, or you can call your closest > office. They will contact your dr, who only needs to fill out an easy > form, basically checking boxes stating your child is dx'd with immune > deficiency. Its a very easy process. > > HTH a little, > valarie > mom of three w/CVID > > In groups (DOT) com, " Deska " <deska66@ > wrote: > > > > Dale, > > > > Thanks so much for all of your comments. It makes a lot of sense and > > puts things into a different perspective. And believe me, I meant ALL > > of us when I said " we need a vacation from all of this " the kids, us, > > everyone. We never go away without our kids. It is rare that we go out > > to eat dinner without our boys, much less a vacation! (I think the > > only time we've ever spent away from them was one night for our > > anniversary 2 years ago) > > > > I recently changed pediatricians and I sat down and had a talk with > > the practice when I changed asking them who I was supposed to meet > > with when the kids were sick, and they felt it would be them, but now > > that we have hit our first " hurdle " so to speak, it presents to be a > > problem. I am going to have to address this. The immunologist hasn't > > started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago, > > and she was hoping to avoid that and be able to do prophylactic > > antibiotics and get him through the summer and maybe get him healthier > > and stronger before winter got here. I guess only time and prayers > > will tell. > > > > I do appreciate your honesty about everything you've dealt with. It > > really was a good post and it will definitely help me to look at > > things a little differently. > > > > > > Deska > > > > > > > > > > from Dale, Mom to Katy, CVID, married and grown (almost 24!) > > > > > > just some random thoughts. > > > > > > > > > I don't understand the comments about having milder PIDD. I mean, I > > > understand what you mean -- but I believe it's a misnomer. Katy was > > > never hospitalized, never critically ill, so I guess she had a milder > > > PIDD, but in actuality her pain was constant, her infections one > right > > > after another and parenting her was a full time job. There was > never a > > > time during the rough years when I felt that she had a milder PIDD. > > > Parenting a PIDD kid is tough stuff. Now, there's a lot of > parents on > > > this site whose children are going through multiple diagnosis. Don't > > > get that confused with PIDD. > > > > > > > They complain all the time of headaches and stomach pain, and we > > can't > > > > pinpoint anything " wrong " and they are just " tired " and grumpy > > most of > > > > the time before other kids are. > > > > > > The best way I can describe what is going on is this: > > > A person with a normal immune system kills germs before they set up > > > infection. It's rare for them to get an infection -- but when > they do > > > -- they call it " being sick. " A person with CVID or hypogam > doesn't > > > even know that that germ is in the body until it has set up shop and > > > multiplied enough to notify the killer-T cells. Therefore they are > > > " sick " all the time. Their bodies are fighting germs AFTER they have > > > set up infections (if they have t-cells in tact). IgG causes the > body > > > to prepare for and prevent infections. With low IgG - their is no > > > preventive stuff going on. All the body can produce is attack after > > the > > > fact. So.... for a person walking around with CVID, they are > currently > > > fighting what other people would call " sickness " every single day of > > > their lives. Their muscles ache, their bones hurt, their eyes hurt, > > > their tummies hurt, they feel fatigued and crampy and cranky all the > > > time. Once IgG replacement is started, that should go away -- > but is > > > an indication that their little bodies need help! > > > When normal, healthy people say " I feel like I'm coming down with > > > something " I'm reminded that that's the way Katy felt every > single day > > > of her life before we started IVIG. It helped me to be more patient > > > with her aches and pains. > > > > > > > > > > > > > And now the past two days getting passed around from one Dr to the > > other > > > > > > One of the best things we ever did with Katy was to settle the > question > > > of who was in charge of her care. It took us several years to find > > that > > > doctor. When we found a pediatrician who loved Katy and had her best > > > interest at heart, and I composed a letter to her and then sat > > > down and met with her and settled the issue. > > > > > > It went something like this: > > > > > > We feel that it is imperative that someone who loves and cares for > Katy > > > be in charge of her health care. We want what is absolutely best for > > > her, and it's not best for her to be cared for by immunologist who > only > > > see her twice a year -- when you see her sometimes weekly. We would > > > like for you to be her ONLY doctor. We would like for you to help us > > > make wise decisions for her care. We will see any specialist that > you > > > recommend -- but they can only report back to you -- they cannot > treat > > > her without your permission and feedback. They cannot draw blood! > > They > > > cannot prescribe medication. They are to make all > recommendations to > > > you and you will make the final decisions. That way we will have > > > coordinated care and YOU will be that coordinator -- not us! > > > > > > I can't tell you how much that helped me. I felt totally safe with > > this > > > doctor and when I disagreed with her -- she listened. But for the > most > > > part I could turn the " medical " stuff over to her. She proved to > be an > > > excellent doctor and friend through this tough time. She spent her > > > sabbaticals at the NIH learning about PIDD even though Katy was her > > only > > > PIDD patient. She was just an excellent doctor and I know that > God was > > > blessing us with her. She was the one who ultimately diagnosed Katy > > and > > > she was the one who guided through those rough years of beginning > > > treatment, etc. > > > > > > We need a vacation I think. > > > > > > Sorry, but you have to take the kids with you!!! Vacations were > > > nightmares for us. But then again -- they were totally worth it. > > > > > > > > > Again, hats off to you all that seem to just > > > > effortlessly glide through all of this. > > > > > > We glide because we've been sandpapered by the hard days. > > > > > > You seem to make it all seem > > > > second nature. I hope to get to that point at some point. > > > > > > > > > > You will! And may God bless you on your journey, > > > > > > In His service, > > > dale > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 --- Deska, just so you know......my kids have never been admitted with a life threatening illness. They do have CVID, and they have had chronic sinus, bronchial, etc infections. These both set off asthma, as Im sure your kids do too. many people think MAW is only for kids who are terminal, its not. There is no requirement that a child must be dying for them to qualify. Only that their condition is chronic, and life threatening w/o treatment, which it is. I felt sort of guilty about that too, but Ive been reassured over and over and over, that MAW is incredibly, astoundingly, well funded, and they are there for kids like ours. valarie In , " deska66@... " <deska66@...> wrote: > > > Well in all honesty, I wouldn't feel right trying to get a MAW for my boys at this point in time. Knowing that neither of them are facing life threatening illnesses (even though an asthma attack can be life threatening) I think that is a different beast in itself. I, personally, just wouldn't feel right about trying to do one for my boys at this point. But thanks for the heads up on it. I know each of us all have kids with at least a PID and some with WAY more and I think some would need this more than we would. Some of these kiddos have been through A LOT from what I gather. Bless you all. Hugs and prayers everyday!!! > > Deska > > On May 21, 2008, at 7:58 PM, Barbara Jimenez <mother5590@...> wrote: > > Actually we have tried 2x and have not gotten a MAW and Lucas has all of the same diagnosis as your kids and more. I have no explantation except that they do not consider CVID to be life threatening.He is stable on the gammaglobulin and has been kept out of the hospital most of his life. I DO NOT go to the ER with him and we have worked behind the scenes to keep him out. ( I do more than most at home because I am a PEDS nurse. It makes me very sad because he truly deserves a wish. BARBIE > > Re: ????? > > --- > Deska, > I guess I should have emailed you privately, since Im responding to > all your posts:), Ive been gone camping for a couple weeks. But, maybe > one of the other new moms wouldnt know this, so I'll go ahead and post > it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES > qualify a child for MAW. We went last yr for my daughter, who is now > ten, with CVID/asthma. We went to Give Kids the World Village in > Kissimee, which is way too awesome to believe, and Disney. It was a > MUCH needed break. We hadnt vacationed since before our youngest son > was born, and he was five last yr when we went. This yr, our 8 yr old > son has asked for his Wish. We are going to a resort with a Pirate > Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s > a big jack sparrow fan:) We leave next Friday.....we SO need this > vacation, its been a long, tough winter. MAW covers everything, > flight, hotel, food, tickets, rental vehicle. Expense check to eat > out/etc. It is not based on your income, its based on y our childs dx. > You can go online and fill out forms, or you can call your closest > office. They will contact your dr, who only needs to fill out an easy > form, basically checking boxes stating your child is dx'd with immune > deficiency. Its a very easy process. > > HTH a little, > valarie > mom of three w/CVID > > In groups (DOT) com, " Deska " <deska66@ > wrote: > > > > Dale, > > > > Thanks so much for all of your comments. It makes a lot of sense and > > puts things into a different perspective. And believe me, I meant ALL > > of us when I said " we need a vacation from all of this " the kids, us, > > everyone. We never go away without our kids. It is rare that we go out > > to eat dinner without our boys, much less a vacation! (I think the > > only time we've ever spent away from them was one night for our > > anniversary 2 years ago) > > > > I recently changed pediatricians and I sat down and had a talk with > > the practice when I changed asking them who I was supposed to meet > > with when the kids were sick, and they felt it would be them, but now > > that we have hit our first " hurdle " so to speak, it presents to be a > > problem. I am going to have to address this. The immunologist hasn't > > started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago, > > and she was hoping to avoid that and be able to do prophylactic > > antibiotics and get him through the summer and maybe get him healthier > > and stronger before winter got here. I guess only time and prayers > > will tell. > > > > I do appreciate your honesty about everything you've dealt with. It > > really was a good post and it will definitely help me to look at > > things a little differently. > > > > > > Deska > > > > > > > > > > from Dale, Mom to Katy, CVID, married and grown (almost 24!) > > > > > > just some random thoughts. > > > > > > > > > I don't understand the comments about having milder PIDD. I mean, I > > > understand what you mean -- but I believe it's a misnomer. Katy was > > > never hospitalized, never critically ill, so I guess she had a milder > > > PIDD, but in actuality her pain was constant, her infections one > right > > > after another and parenting her was a full time job. There was > never a > > > time during the rough years when I felt that she had a milder PIDD. > > > Parenting a PIDD kid is tough stuff. Now, there's a lot of > parents on > > > this site whose children are going through multiple diagnosis. Don't > > > get that confused with PIDD. > > > > > > > They complain all the time of headaches and stomach pain, and we > > can't > > > > pinpoint anything " wrong " and they are just " tired " and grumpy > > most of > > > > the time before other kids are. > > > > > > The best way I can describe what is going on is this: > > > A person with a normal immune system kills germs before they set up > > > infection. It's rare for them to get an infection -- but when > they do > > > -- they call it " being sick. " A person with CVID or hypogam > doesn't > > > even know that that germ is in the body until it has set up shop and > > > multiplied enough to notify the killer-T cells. Therefore they are > > > " sick " all the time. Their bodies are fighting germs AFTER they have > > > set up infections (if they have t-cells in tact). IgG causes the > body > > > to prepare for and prevent infections. With low IgG - their is no > > > preventive stuff going on. All the body can produce is attack after > > the > > > fact. So.... for a person walking around with CVID, they are > currently > > > fighting what other people would call " sickness " every single day of > > > their lives. Their muscles ache, their bones hurt, their eyes hurt, > > > their tummies hurt, they feel fatigued and crampy and cranky all the > > > time. Once IgG replacement is started, that should go away -- > but is > > > an indication that their little bodies need help! > > > When normal, healthy people say " I feel like I'm coming down with > > > something " I'm reminded that that's the way Katy felt every > single day > > > of her life before we started IVIG. It helped me to be more patient > > > with her aches and pains. > > > > > > > > > > > > > And now the past two days getting passed around from one Dr to the > > other > > > > > > One of the best things we ever did with Katy was to settle the > question > > > of who was in charge of her care. It took us several years to find > > that > > > doctor. When we found a pediatrician who loved Katy and had her best > > > interest at heart, and I composed a letter to her and then sat > > > down and met with her and settled the issue. > > > > > > It went something like this: > > > > > > We feel that it is imperative that someone who loves and cares for > Katy > > > be in charge of her health care. We want what is absolutely best for > > > her, and it's not best for her to be cared for by immunologist who > only > > > see her twice a year -- when you see her sometimes weekly. We would > > > like for you to be her ONLY doctor. We would like for you to help us > > > make wise decisions for her care. We will see any specialist that > you > > > recommend -- but they can only report back to you -- they cannot > treat > > > her without your permission and feedback. They cannot draw blood! > > They > > > cannot prescribe medication. They are to make all > recommendations to > > > you and you will make the final decisions. That way we will have > > > coordinated care and YOU will be that coordinator -- not us! > > > > > > I can't tell you how much that helped me. I felt totally safe with > > this > > > doctor and when I disagreed with her -- she listened. But for the > most > > > part I could turn the " medical " stuff over to her. She proved to > be an > > > excellent doctor and friend through this tough time. She spent her > > > sabbaticals at the NIH learning about PIDD even though Katy was her > > only > > > PIDD patient. She was just an excellent doctor and I know that > God was > > > blessing us with her. She was the one who ultimately diagnosed Katy > > and > > > she was the one who guided through those rough years of beginning > > > treatment, etc. > > > > > > We need a vacation I think. > > > > > > Sorry, but you have to take the kids with you!!! Vacations were > > > nightmares for us. But then again -- they were totally worth it. > > > > > > > > > Again, hats off to you all that seem to just > > > > effortlessly glide through all of this. > > > > > > We glide because we've been sandpapered by the hard days. > > > > > > You seem to make it all seem > > > > second nature. I hope to get to that point at some point. > > > > > > > > > > You will! And may God bless you on your journey, > > > > > > In His service, > > > dale > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 ---I understand. Have you called the dr and asked him, if he remembers what he put on the form? Explain to him the circumstances, and that you'd appreciate it if he would back you up on this. I know you've had so much going on with your daughter and the baby, and Lucas' school. MAW would be such a nice break for all of you:) valarie In , Barbara Jimenez <mother5590@...> wrote: > > I do not know but I have had no access to anything. I called in Wa state and then again here in OK and I was sent a letter that said they had sent a form to our doctor and that he did not qualify. It is hard to argue with them!!! or even advocate for him under the circumstances. > BARBIE > > > > Re: ????? > > > > > > --- > > Deska, > > I guess I should have emailed you privately, since Im responding to > > all your posts:), Ive been gone camping for a couple weeks. But, maybe > > one of the other new moms wouldnt know this, so I'll go ahead and post > > it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES > > qualify a child for MAW. We went last yr for my daughter, who is now > > ten, with CVID/asthma. We went to Give Kids the World Village in > > Kissimee, which is way too awesome to believe, and Disney. It was a > > MUCH needed break. We hadnt vacationed since before our youngest son > > was born, and he was five last yr when we went. This yr, our 8 yr old > > son has asked for his Wish. We are going to a resort with a Pirate > > Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s > > a big jack sparrow fan:) We leave next Friday.....we SO need this > > vacation, its been a long, tough winter. MAW covers everything, > > flight, hotel, food, tickets, rental vehicle. Expense check to eat > > out/etc. It is not based on your income, its based on y our childs dx. > > You can go online and fill out forms, or you can call your closest > > office. They will contact your dr, who only needs to fill out an easy > > form, basically checking boxes stating your child is dx'd with immune > > deficiency. Its a very easy process. > > > > HTH a little, > > valarie > > mom of three w/CVID > > > > In groups (DOT) com, " Deska " <deska66@ > wrote: > > > > > > Dale, > > > > > > Thanks so much for all of your comments. It makes a lot of sense and > > > puts things into a different perspective. And believe me, I meant ALL > > > of us when I said " we need a vacation from all of this " the kids, us, > > > everyone. We never go away without our kids. It is rare that we go out > > > to eat dinner without our boys, much less a vacation! (I think the > > > only time we've ever spent away from them was one night for our > > > anniversary 2 years ago) > > > > > > I recently changed pediatricians and I sat down and had a talk with > > > the practice when I changed asking them who I was supposed to meet > > > with when the kids were sick, and they felt it would be them, but now > > > that we have hit our first " hurdle " so to speak, it presents to be a > > > problem. I am going to have to address this. The immunologist hasn't > > > started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago, > > > and she was hoping to avoid that and be able to do prophylactic > > > antibiotics and get him through the summer and maybe get him healthier > > > and stronger before winter got here. I guess only time and prayers > > > will tell. > > > > > > I do appreciate your honesty about everything you've dealt with. It > > > really was a good post and it will definitely help me to look at > > > things a little differently. > > > > > > > > > Deska > > > > > > > > > > > > > > from Dale, Mom to Katy, CVID, married and grown (almost 24!) > > > > > > > > just some random thoughts. > > > > > > > > > > > > I don't understand the comments about having milder PIDD. I mean, I > > > > understand what you mean -- but I believe it's a misnomer. Katy > was > > > > never hospitalized, never critically ill, so I guess she had a > milder > > > > PIDD, but in actuality her pain was constant, her infections one > > right > > > > after another and parenting her was a full time job. There was > > never a > > > > time during the rough years when I felt that she had a milder PIDD. > > > > Parenting a PIDD kid is tough stuff. Now, there's a lot of > > parents on > > > > this site whose children are going through multiple diagnosis. > Don't > > > > get that confused with PIDD. > > > > > > > > > They complain all the time of headaches and stomach pain, and we > > > can't > > > > > pinpoint anything " wrong " and they are just " tired " and grumpy > > > most of > > > > > the time before other kids are. > > > > > > > > The best way I can describe what is going on is this: > > > > A person with a normal immune system kills germs before they set up > > > > infection. It's rare for them to get an infection -- but when > > they do > > > > -- they call it " being sick. " A person with CVID or hypogam > > doesn't > > > > even know that that germ is in the body until it has set up shop > and > > > > multiplied enough to notify the killer-T cells. Therefore they are > > > > " sick " all the time. Their bodies are fighting germs AFTER they > have > > > > set up infections (if they have t-cells in tact). IgG causes the > > body > > > > to prepare for and prevent infections. With low IgG - their is no > > > > preventive stuff going on. All the body can produce is attack after > > > the > > > > fact. So.... for a person walking around with CVID, they are > > currently > > > > fighting what other people would call " sickness " every single > day of > > > > their lives. Their muscles ache, their bones hurt, their eyes > hurt, > > > > their tummies hurt, they feel fatigued and crampy and cranky all > the > > > > time. Once IgG replacement is started, that should go away -- > > but is > > > > an indication that their little bodies need help! > > > > When normal, healthy people say " I feel like I'm coming down with > > > > something " I'm reminded that that's the way Katy felt every > > single day > > > > of her life before we started IVIG. It helped me to be more > patient > > > > with her aches and pains. > > > > > > > > > > > > > > > > > And now the past two days getting passed around from one Dr to the > > > other > > > > > > > > One of the best things we ever did with Katy was to settle the > > question > > > > of who was in charge of her care. It took us several years to find > > > that > > > > doctor. When we found a pediatrician who loved Katy and had her > best > > > > interest at heart, and I composed a letter to her and then > sat > > > > down and met with her and settled the issue. > > > > > > > > It went something like this: > > > > > > > > We feel that it is imperative that someone who loves and cares for > > Katy > > > > be in charge of her health care. We want what is absolutely > best for > > > > her, and it's not best for her to be cared for by immunologist who > > only > > > > see her twice a year -- when you see her sometimes weekly. We > would > > > > like for you to be her ONLY doctor. We would like for you to > help us > > > > make wise decisions for her care. We will see any specialist that > > you > > > > recommend -- but they can only report back to you -- they cannot > > treat > > > > her without your permission and feedback. They cannot draw blood! > > > They > > > > cannot prescribe medication. They are to make all > > recommendations to > > > > you and you will make the final decisions. That way we will have > > > > coordinated care and YOU will be that coordinator -- not us! > > > > > > > > I can't tell you how much that helped me. I felt totally safe with > > > this > > > > doctor and when I disagreed with her -- she listened. But for the > > most > > > > part I could turn the " medical " stuff over to her. She proved to > > be an > > > > excellent doctor and friend through this tough time. She spent her > > > > sabbaticals at the NIH learning about PIDD even though Katy was her > > > only > > > > PIDD patient. She was just an excellent doctor and I know that > > God was > > > > blessing us with her. She was the one who ultimately diagnosed Katy > > > and > > > > she was the one who guided through those rough years of beginning > > > > treatment, etc. > > > > > > > > We need a vacation I think. > > > > > > > > Sorry, but you have to take the kids with you!!! Vacations were > > > > nightmares for us. But then again -- they were totally worth it. > > > > > > > > > > > > Again, hats off to you all that seem to just > > > > > effortlessly glide through all of this. > > > > > > > > We glide because we've been sandpapered by the hard days. > > > > > > > > You seem to make it all seem > > > > > second nature. I hope to get to that point at some point. > > > > > > > > > > > > > You will! And may God bless you on your journey, > > > > > > > > In His service, > > > > dale > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 i was wondering if i can send an money order to ptcb to pay the exam.?.i dont know if thats possible...i am trying to take the exam on march so i can have a chance to renew my license before march 31...is that possible? Quote Link to comment Share on other sites More sharing options...
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