Guest guest Posted September 17, 2004 Report Posted September 17, 2004 --Hi Azzie, I am in Los Gatos about 45 minutes from San Fransisco. You are in the LA area? I can't believe you have been dealing with this so long. Hayden is 3 and we have been at it since he was 8mo. I don't look forward to 4 more years. How does she deal with this. I imagine she is quite mature for her age. My son is very aware of things, like where the different labs are, and when we go to Stanford that we are there for the ID instead of the Rheum or the ENT. They are amazing little creatures aren't they. I have learned so much from my brave little one about patience and fear...I guess the old saying everything happens for...Maybe I am supposed to learn things from him.. I like to think of it that way anyway. We have spent all other diagnoses, so we are back to plain old . THANK YOU GOD!!! I certainly feel better about that than the others things that won't just simply be outgrown. I send my heart and thoughts to all out there who have had not such favorable diags. I see many different docs. If you are interested I will email them to you. I am sure that you are a veteran now and have weeded out the quacks and disbelievers. Or the ones that simply say they are in daycare its a virus. LOL, want to hurt them... Good luck to Kianna and your family. in California, Mom to Hayden 3yr, Phoenix 10mo, and one in the works. - In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > I was reading your e-mail to and noticed that you are in California. I too live in California (Southern) in the Valley. Whereabouts do you live and maybe we can share infomation. My soon to be 7 year old Kianna has been dealing with since she was 10 months old. > Thanks, > Azzie, mom to Kianna > California > > webyers <webyers@y...> wrote: > , > > My son has had severe leg and toe pain with his episodes. He has > been checked for EVERYTHING and still we come back to . > > He was also checked for Bechets because of the joint pain and the > ulcers in his mouth. Just a thought. It usually involves your > background though. So you may not even need to worry about it. I am > French Canadian, and Greek. I guess it is a bad combo for the > genetic disorders FMF and Bechets. > > I also tend to think that if the body is going through the horror > and discomfort of a high fever our bodies would probably cramp in > areas too. Unfortunately they are too young to explain the pain. I > used to rub Haydens feet as if they were cramped and he seemed to > feel better. He also seemed to be more uncomfortable with the heat > and being dehydrated on top of a fever, this too will cause cramping. > > Good luck with Jarrod, > > California, > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > , merryms@j... wrote: > > Wondering if anyone ever had experience with pain in the toes?? > Jarrod > > was extremely restless (up every hour) 2 nights ago complaining > about his > > toes. He also has the start of a mouth sore and we are close to > the time > > he should fever. We did skip last months fever, but he has had > times in > > the past where we've skipped a month or so. Not sure if the toe > pain can > > be symptomatic of . > > > > - SWFL > > Mother of Jarrod (2) > > > Quote
Guest guest Posted September 17, 2004 Report Posted September 17, 2004 --Hi Azzie, I am in Los Gatos about 45 minutes from San Fransisco. You are in the LA area? I can't believe you have been dealing with this so long. Hayden is 3 and we have been at it since he was 8mo. I don't look forward to 4 more years. How does she deal with this. I imagine she is quite mature for her age. My son is very aware of things, like where the different labs are, and when we go to Stanford that we are there for the ID instead of the Rheum or the ENT. They are amazing little creatures aren't they. I have learned so much from my brave little one about patience and fear...I guess the old saying everything happens for...Maybe I am supposed to learn things from him.. I like to think of it that way anyway. We have spent all other diagnoses, so we are back to plain old . THANK YOU GOD!!! I certainly feel better about that than the others things that won't just simply be outgrown. I send my heart and thoughts to all out there who have had not such favorable diags. I see many different docs. If you are interested I will email them to you. I am sure that you are a veteran now and have weeded out the quacks and disbelievers. Or the ones that simply say they are in daycare its a virus. LOL, want to hurt them... Good luck to Kianna and your family. in California, Mom to Hayden 3yr, Phoenix 10mo, and one in the works. - In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > I was reading your e-mail to and noticed that you are in California. I too live in California (Southern) in the Valley. Whereabouts do you live and maybe we can share infomation. My soon to be 7 year old Kianna has been dealing with since she was 10 months old. > Thanks, > Azzie, mom to Kianna > California > > webyers <webyers@y...> wrote: > , > > My son has had severe leg and toe pain with his episodes. He has > been checked for EVERYTHING and still we come back to . > > He was also checked for Bechets because of the joint pain and the > ulcers in his mouth. Just a thought. It usually involves your > background though. So you may not even need to worry about it. I am > French Canadian, and Greek. I guess it is a bad combo for the > genetic disorders FMF and Bechets. > > I also tend to think that if the body is going through the horror > and discomfort of a high fever our bodies would probably cramp in > areas too. Unfortunately they are too young to explain the pain. I > used to rub Haydens feet as if they were cramped and he seemed to > feel better. He also seemed to be more uncomfortable with the heat > and being dehydrated on top of a fever, this too will cause cramping. > > Good luck with Jarrod, > > California, > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > , merryms@j... wrote: > > Wondering if anyone ever had experience with pain in the toes?? > Jarrod > > was extremely restless (up every hour) 2 nights ago complaining > about his > > toes. He also has the start of a mouth sore and we are close to > the time > > he should fever. We did skip last months fever, but he has had > times in > > the past where we've skipped a month or so. Not sure if the toe > pain can > > be symptomatic of . > > > > - SWFL > > Mother of Jarrod (2) > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 Hi , Thanks for your reply. We have not ruled everything out yet, but more and more it looks like . I am hoping that if I did calculate things right, that she won't cycle on her birthday party. I had to move her party up to the 10th of October instead of the 23 which is her real birthday. Last year I had to move her birhtday to the 1st of November. So Yes, I'm learning to deal with it, but this group has been a blessing. I felt so alone and isolated until now so I'm really glad I found this group. In regards to knowing it all, I don't think anyone really knows everything, so I would love to get any and all information that you might have. Its been a struggle and I've been begging my pediatrician for a tonsilectamy (sorry about the spelling) but he doesn't want me to even consider it because he hasn't ruled out all the genetic disorders. He is also convinced that she will outgrow this in the next year or two, because he has two other kids in his practice with . One has been in the clear for a year and is 9. So I'm confused and don't know what to do. God willing, she wont be sick at her birthday party. She is having a SPA PRINCESS party. Azzie Mother to Kianna almost 7 and Rustin (boy) 4! California webyers <webyers@...> wrote: --Hi Azzie, I am in Los Gatos about 45 minutes from San Fransisco. You are in the LA area? I can't believe you have been dealing with this so long. Hayden is 3 and we have been at it since he was 8mo. I don't look forward to 4 more years. How does she deal with this. I imagine she is quite mature for her age. My son is very aware of things, like where the different labs are, and when we go to Stanford that we are there for the ID instead of the Rheum or the ENT. They are amazing little creatures aren't they. I have learned so much from my brave little one about patience and fear...I guess the old saying everything happens for...Maybe I am supposed to learn things from him.. I like to think of it that way anyway. We have spent all other diagnoses, so we are back to plain old . THANK YOU GOD!!! I certainly feel better about that than the others things that won't just simply be outgrown. I send my heart and thoughts to all out there who have had not such favorable diags. I see many different docs. If you are interested I will email them to you. I am sure that you are a veteran now and have weeded out the quacks and disbelievers. Or the ones that simply say they are in daycare its a virus. LOL, want to hurt them... Good luck to Kianna and your family. in California, Mom to Hayden 3yr, Phoenix 10mo, and one in the works. - In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > I was reading your e-mail to and noticed that you are in California. I too live in California (Southern) in the Valley. Whereabouts do you live and maybe we can share infomation. My soon to be 7 year old Kianna has been dealing with since she was 10 months old. > Thanks, > Azzie, mom to Kianna > California > > webyers <webyers@y...> wrote: > , > > My son has had severe leg and toe pain with his episodes. He has > been checked for EVERYTHING and still we come back to . > > He was also checked for Bechets because of the joint pain and the > ulcers in his mouth. Just a thought. It usually involves your > background though. So you may not even need to worry about it. I am > French Canadian, and Greek. I guess it is a bad combo for the > genetic disorders FMF and Bechets. > > I also tend to think that if the body is going through the horror > and discomfort of a high fever our bodies would probably cramp in > areas too. Unfortunately they are too young to explain the pain. I > used to rub Haydens feet as if they were cramped and he seemed to > feel better. He also seemed to be more uncomfortable with the heat > and being dehydrated on top of a fever, this too will cause cramping. > > Good luck with Jarrod, > > California, > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > , merryms@j... wrote: > > Wondering if anyone ever had experience with pain in the toes?? > Jarrod > > was extremely restless (up every hour) 2 nights ago complaining > about his > > toes. He also has the start of a mouth sore and we are close to > the time > > he should fever. We did skip last months fever, but he has had > times in > > the past where we've skipped a month or so. Not sure if the toe > pain can > > be symptomatic of . > > > > - SWFL > > Mother of Jarrod (2) > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 Hi , Thanks for your reply. We have not ruled everything out yet, but more and more it looks like . I am hoping that if I did calculate things right, that she won't cycle on her birthday party. I had to move her party up to the 10th of October instead of the 23 which is her real birthday. Last year I had to move her birhtday to the 1st of November. So Yes, I'm learning to deal with it, but this group has been a blessing. I felt so alone and isolated until now so I'm really glad I found this group. In regards to knowing it all, I don't think anyone really knows everything, so I would love to get any and all information that you might have. Its been a struggle and I've been begging my pediatrician for a tonsilectamy (sorry about the spelling) but he doesn't want me to even consider it because he hasn't ruled out all the genetic disorders. He is also convinced that she will outgrow this in the next year or two, because he has two other kids in his practice with . One has been in the clear for a year and is 9. So I'm confused and don't know what to do. God willing, she wont be sick at her birthday party. She is having a SPA PRINCESS party. Azzie Mother to Kianna almost 7 and Rustin (boy) 4! California webyers <webyers@...> wrote: --Hi Azzie, I am in Los Gatos about 45 minutes from San Fransisco. You are in the LA area? I can't believe you have been dealing with this so long. Hayden is 3 and we have been at it since he was 8mo. I don't look forward to 4 more years. How does she deal with this. I imagine she is quite mature for her age. My son is very aware of things, like where the different labs are, and when we go to Stanford that we are there for the ID instead of the Rheum or the ENT. They are amazing little creatures aren't they. I have learned so much from my brave little one about patience and fear...I guess the old saying everything happens for...Maybe I am supposed to learn things from him.. I like to think of it that way anyway. We have spent all other diagnoses, so we are back to plain old . THANK YOU GOD!!! I certainly feel better about that than the others things that won't just simply be outgrown. I send my heart and thoughts to all out there who have had not such favorable diags. I see many different docs. If you are interested I will email them to you. I am sure that you are a veteran now and have weeded out the quacks and disbelievers. Or the ones that simply say they are in daycare its a virus. LOL, want to hurt them... Good luck to Kianna and your family. in California, Mom to Hayden 3yr, Phoenix 10mo, and one in the works. - In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > I was reading your e-mail to and noticed that you are in California. I too live in California (Southern) in the Valley. Whereabouts do you live and maybe we can share infomation. My soon to be 7 year old Kianna has been dealing with since she was 10 months old. > Thanks, > Azzie, mom to Kianna > California > > webyers <webyers@y...> wrote: > , > > My son has had severe leg and toe pain with his episodes. He has > been checked for EVERYTHING and still we come back to . > > He was also checked for Bechets because of the joint pain and the > ulcers in his mouth. Just a thought. It usually involves your > background though. So you may not even need to worry about it. I am > French Canadian, and Greek. I guess it is a bad combo for the > genetic disorders FMF and Bechets. > > I also tend to think that if the body is going through the horror > and discomfort of a high fever our bodies would probably cramp in > areas too. Unfortunately they are too young to explain the pain. I > used to rub Haydens feet as if they were cramped and he seemed to > feel better. He also seemed to be more uncomfortable with the heat > and being dehydrated on top of a fever, this too will cause cramping. > > Good luck with Jarrod, > > California, > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > , merryms@j... wrote: > > Wondering if anyone ever had experience with pain in the toes?? > Jarrod > > was extremely restless (up every hour) 2 nights ago complaining > about his > > toes. He also has the start of a mouth sore and we are close to > the time > > he should fever. We did skip last months fever, but he has had > times in > > the past where we've skipped a month or so. Not sure if the toe > pain can > > be symptomatic of . > > > > - SWFL > > Mother of Jarrod (2) > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 -Azzie, We have only ruled all the other stuff out. We are still waiting to here from the FMF results. I feel pretty deep down that it is . I just don't feel different about it. He is classic for it. You get your T & A for that baby. You are the one who knows what is right for you and your family and she deserves to feel better. Great if she grows out of it in a year, but why not feel good until then?? You are her mother and you know what your gut is telling you. Keep trying until you find a doc that will listen to you about it. You can call a doctor Messner (ENT) at Stanford and it will be done just like that. She does all the patients for the ID's at the clinic there. This is my next step. I am waiting for an appointment, but I will not hesitate to do it. I won't even wait for the FMF testing to come back... I would love to exchange info with you. You can email me directly at wbyers@... and we can do phone # if you like. I think Kianna is a very lucky little girl to have a mom like you. Not all parents are as involved with the care of their children. Some just go with the flow and don't go any further. If I had done that I'd still believe it was " just a virus " and I shouldn't send him to daycare. HOG WASH. So now we have an excellent Ped. that had me at stanford in days from the first visit with a diag. I hope her party goes well. She is a Scorpio, I am the 24th of Oct. She is a tough cookie isn't she. Look forward to talking to you, and I hope you get the answers you need to feel more confident with your decisions about the T & A. I know it is hard to know what is right. Trust your gut and self...You know her better than ANYONE!!! Talk to you soon, California Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > Thanks for your reply. We have not ruled everything out yet, but more and more it looks like . I am hoping that if I did calculate things right, that she won't cycle on her birthday party. I had to move her party up to the 10th of October instead of the 23 which is her real birthday. Last year I had to move her birhtday to the 1st of November. So Yes, I'm learning to deal with it, but this group has been a blessing. I felt so alone and isolated until now so I'm really glad I found this group. > In regards to knowing it all, I don't think anyone really knows everything, so I would love to get any and all information that you might have. > > Its been a struggle and I've been begging my pediatrician for a tonsilectamy (sorry about the spelling) but he doesn't want me to even consider it because he hasn't ruled out all the genetic disorders. He is also convinced that she will outgrow this in the next year or two, because he has two other kids in his practice with . One has been in the clear for a year and is 9. So I'm confused and don't know what to do. > > God willing, she wont be sick at her birthday party. She is having a SPA PRINCESS party. > > Azzie > Mother to Kianna almost 7 and Rustin (boy) 4! > California > > webyers <webyers@y...> wrote: > --Hi Azzie, > > I am in Los Gatos about 45 minutes from San Fransisco. You are in > the LA area? I can't believe you have been dealing with this so > long. Hayden is 3 and we have been at it since he was 8mo. I don't > look forward to 4 more years. How does she deal with this. I > imagine she is quite mature for her age. My son is very aware of > things, like where the different labs are, and when we go to > Stanford that we are there for the ID instead of the Rheum or the > ENT. They are amazing little creatures aren't they. I have learned > so much from my brave little one about patience and fear...I guess > the old saying everything happens for...Maybe I am supposed to learn > things from him.. I like to think of it that way anyway. > > We have spent all other diagnoses, so we are back to plain old > . THANK YOU GOD!!! I certainly feel better about that than the > others things that won't just simply be outgrown. I send my heart > and thoughts to all out there who have had not such favorable diags. > > I see many different docs. If you are interested I will email them > to you. I am sure that you are a veteran now and have weeded out > the quacks and disbelievers. Or the ones that simply say they are > in daycare its a virus. LOL, want to hurt them... > > Good luck to Kianna and your family. > > in California, > Mom to Hayden 3yr, Phoenix 10mo, and one in the works. > - In , Azzie Fiouzi <azzief@s...> wrote: > > Hi , > > I was reading your e-mail to and noticed that you are in > California. I too live in California (Southern) in the Valley. > Whereabouts do you live and maybe we can share infomation. My soon > to be 7 year old Kianna has been dealing with since she was 10 > months old. > > Thanks, > > Azzie, mom to Kianna > > California > > > > webyers <webyers@y...> wrote: > > , > > > > My son has had severe leg and toe pain with his episodes. He has > > been checked for EVERYTHING and still we come back to . > > > > He was also checked for Bechets because of the joint pain and the > > ulcers in his mouth. Just a thought. It usually involves your > > background though. So you may not even need to worry about it. I > am > > French Canadian, and Greek. I guess it is a bad combo for the > > genetic disorders FMF and Bechets. > > > > I also tend to think that if the body is going through the horror > > and discomfort of a high fever our bodies would probably cramp in > > areas too. Unfortunately they are too young to explain the pain. > I > > used to rub Haydens feet as if they were cramped and he seemed to > > feel better. He also seemed to be more uncomfortable with the > heat > > and being dehydrated on top of a fever, this too will cause > cramping. > > > > Good luck with Jarrod, > > > > California, > > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > > , merryms@j... wrote: > > > Wondering if anyone ever had experience with pain in the toes?? > > Jarrod > > > was extremely restless (up every hour) 2 nights ago complaining > > about his > > > toes. He also has the start of a mouth sore and we are close to > > the time > > > he should fever. We did skip last months fever, but he has had > > times in > > > the past where we've skipped a month or so. Not sure if the toe > > pain can > > > be symptomatic of . > > > > > > - SWFL > > > Mother of Jarrod (2) > > > > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 -Azzie, We have only ruled all the other stuff out. We are still waiting to here from the FMF results. I feel pretty deep down that it is . I just don't feel different about it. He is classic for it. You get your T & A for that baby. You are the one who knows what is right for you and your family and she deserves to feel better. Great if she grows out of it in a year, but why not feel good until then?? You are her mother and you know what your gut is telling you. Keep trying until you find a doc that will listen to you about it. You can call a doctor Messner (ENT) at Stanford and it will be done just like that. She does all the patients for the ID's at the clinic there. This is my next step. I am waiting for an appointment, but I will not hesitate to do it. I won't even wait for the FMF testing to come back... I would love to exchange info with you. You can email me directly at wbyers@... and we can do phone # if you like. I think Kianna is a very lucky little girl to have a mom like you. Not all parents are as involved with the care of their children. Some just go with the flow and don't go any further. If I had done that I'd still believe it was " just a virus " and I shouldn't send him to daycare. HOG WASH. So now we have an excellent Ped. that had me at stanford in days from the first visit with a diag. I hope her party goes well. She is a Scorpio, I am the 24th of Oct. She is a tough cookie isn't she. Look forward to talking to you, and I hope you get the answers you need to feel more confident with your decisions about the T & A. I know it is hard to know what is right. Trust your gut and self...You know her better than ANYONE!!! Talk to you soon, California Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In , Azzie Fiouzi <azzief@s...> wrote: > Hi , > Thanks for your reply. We have not ruled everything out yet, but more and more it looks like . I am hoping that if I did calculate things right, that she won't cycle on her birthday party. I had to move her party up to the 10th of October instead of the 23 which is her real birthday. Last year I had to move her birhtday to the 1st of November. So Yes, I'm learning to deal with it, but this group has been a blessing. I felt so alone and isolated until now so I'm really glad I found this group. > In regards to knowing it all, I don't think anyone really knows everything, so I would love to get any and all information that you might have. > > Its been a struggle and I've been begging my pediatrician for a tonsilectamy (sorry about the spelling) but he doesn't want me to even consider it because he hasn't ruled out all the genetic disorders. He is also convinced that she will outgrow this in the next year or two, because he has two other kids in his practice with . One has been in the clear for a year and is 9. So I'm confused and don't know what to do. > > God willing, she wont be sick at her birthday party. She is having a SPA PRINCESS party. > > Azzie > Mother to Kianna almost 7 and Rustin (boy) 4! > California > > webyers <webyers@y...> wrote: > --Hi Azzie, > > I am in Los Gatos about 45 minutes from San Fransisco. You are in > the LA area? I can't believe you have been dealing with this so > long. Hayden is 3 and we have been at it since he was 8mo. I don't > look forward to 4 more years. How does she deal with this. I > imagine she is quite mature for her age. My son is very aware of > things, like where the different labs are, and when we go to > Stanford that we are there for the ID instead of the Rheum or the > ENT. They are amazing little creatures aren't they. I have learned > so much from my brave little one about patience and fear...I guess > the old saying everything happens for...Maybe I am supposed to learn > things from him.. I like to think of it that way anyway. > > We have spent all other diagnoses, so we are back to plain old > . THANK YOU GOD!!! I certainly feel better about that than the > others things that won't just simply be outgrown. I send my heart > and thoughts to all out there who have had not such favorable diags. > > I see many different docs. If you are interested I will email them > to you. I am sure that you are a veteran now and have weeded out > the quacks and disbelievers. Or the ones that simply say they are > in daycare its a virus. LOL, want to hurt them... > > Good luck to Kianna and your family. > > in California, > Mom to Hayden 3yr, Phoenix 10mo, and one in the works. > - In , Azzie Fiouzi <azzief@s...> wrote: > > Hi , > > I was reading your e-mail to and noticed that you are in > California. I too live in California (Southern) in the Valley. > Whereabouts do you live and maybe we can share infomation. My soon > to be 7 year old Kianna has been dealing with since she was 10 > months old. > > Thanks, > > Azzie, mom to Kianna > > California > > > > webyers <webyers@y...> wrote: > > , > > > > My son has had severe leg and toe pain with his episodes. He has > > been checked for EVERYTHING and still we come back to . > > > > He was also checked for Bechets because of the joint pain and the > > ulcers in his mouth. Just a thought. It usually involves your > > background though. So you may not even need to worry about it. I > am > > French Canadian, and Greek. I guess it is a bad combo for the > > genetic disorders FMF and Bechets. > > > > I also tend to think that if the body is going through the horror > > and discomfort of a high fever our bodies would probably cramp in > > areas too. Unfortunately they are too young to explain the pain. > I > > used to rub Haydens feet as if they were cramped and he seemed to > > feel better. He also seemed to be more uncomfortable with the > heat > > and being dehydrated on top of a fever, this too will cause > cramping. > > > > Good luck with Jarrod, > > > > California, > > Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In > > , merryms@j... wrote: > > > Wondering if anyone ever had experience with pain in the toes?? > > Jarrod > > > was extremely restless (up every hour) 2 nights ago complaining > > about his > > > toes. He also has the start of a mouth sore and we are close to > > the time > > > he should fever. We did skip last months fever, but he has had > > times in > > > the past where we've skipped a month or so. Not sure if the toe > > pain can > > > be symptomatic of . > > > > > > - SWFL > > > Mother of Jarrod (2) > > > > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 , I'm in the process of looking for a doctor for my child, Shane. Who do you see at Stanford? Would you recommend him/her? And does your child's doctor see other children with ? Thanks for you help. Beverly > > > > Wondering if anyone ever had experience with pain in the > toes?? > > > Jarrod > > > > was extremely restless (up every hour) 2 nights ago > complaining > > > about his > > > > toes. He also has the start of a mouth sore and we are close > to > > > the time > > > > he should fever. We did skip last months fever, but he has had > > > times in > > > > the past where we've skipped a month or so. Not sure if the > toe > > > pain can > > > > be symptomatic of . > > > > > > > > - SWFL > > > > Mother of Jarrod (2) > > > > > > > > > Quote
Guest guest Posted September 18, 2004 Report Posted September 18, 2004 , I'm in the process of looking for a doctor for my child, Shane. Who do you see at Stanford? Would you recommend him/her? And does your child's doctor see other children with ? Thanks for you help. Beverly > > > > Wondering if anyone ever had experience with pain in the > toes?? > > > Jarrod > > > > was extremely restless (up every hour) 2 nights ago > complaining > > > about his > > > > toes. He also has the start of a mouth sore and we are close > to > > > the time > > > > he should fever. We did skip last months fever, but he has had > > > times in > > > > the past where we've skipped a month or so. Not sure if the > toe > > > pain can > > > > be symptomatic of . > > > > > > > > - SWFL > > > > Mother of Jarrod (2) > > > > > > > > > Quote
Guest guest Posted September 19, 2004 Report Posted September 19, 2004 Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
Guest guest Posted September 19, 2004 Report Posted September 19, 2004 Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
Guest guest Posted September 19, 2004 Report Posted September 19, 2004 Hi , Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. Beverly Re: /Califormia Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
Guest guest Posted September 19, 2004 Report Posted September 19, 2004 Hi , Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. Beverly Re: /Califormia Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
Guest guest Posted September 20, 2004 Report Posted September 20, 2004 -Beverly, I would love to help you in any possible way. You can email me at wbyers@.... I think you will love them. If you have a PPO you shouldn't have a problem. Stanford is a teaching hospital and I love the way they work. You see a Dr, and a Fellow at the same time. They all bounce off each other and talk about the cases. They are so young you feel like you are with Doogy Howser. They listen and ask alot of questions. To the point where it is frusterating. They just need to make sure they don't miss anything. You were smart to get the genetic testing done. So many don't get that out of the way first. It is expensive. Good luck and please email me if you have any problems getting him in. They know us, because I am a pain in their hiney, and I will be speaking to Dr. tomorrow. I will mention Shane. What is your last name. He will be excited to explore another child with this syndrome. I tell him about the board all the time and how much I have learned. Email me with your info, I'd love to get in your boat with you. LOL Mom to Hayden California -- In , " Beverly Dettis " <bdettis@s...> wrote: > Hi , > > Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! > > I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! > > I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. > > Beverly > Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 20, 2004 Report Posted September 20, 2004 -Beverly, I would love to help you in any possible way. You can email me at wbyers@.... I think you will love them. If you have a PPO you shouldn't have a problem. Stanford is a teaching hospital and I love the way they work. You see a Dr, and a Fellow at the same time. They all bounce off each other and talk about the cases. They are so young you feel like you are with Doogy Howser. They listen and ask alot of questions. To the point where it is frusterating. They just need to make sure they don't miss anything. You were smart to get the genetic testing done. So many don't get that out of the way first. It is expensive. Good luck and please email me if you have any problems getting him in. They know us, because I am a pain in their hiney, and I will be speaking to Dr. tomorrow. I will mention Shane. What is your last name. He will be excited to explore another child with this syndrome. I tell him about the board all the time and how much I have learned. Email me with your info, I'd love to get in your boat with you. LOL Mom to Hayden California -- In , " Beverly Dettis " <bdettis@s...> wrote: > Hi , > > Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! > > I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! > > I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. > > Beverly > Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 20, 2004 Report Posted September 20, 2004 Hi , I talked with Christa today. She was very nice. As of today, Dr. has requested Shane's last lab result and some other paper work. Hopefully my son's pediatric office sends him enough convincing evidence that we will go down and see him soon. Shane's file is 3 inches thick. Shane's last name is Dettis and he is 7 years old. He was diagnosed with when he was 2 1/2. Could you find out how many children he sees that have been diagnosed with ? I would be interested in knowing that. Good luck with your visit tomorrow. Beverly Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 20, 2004 Report Posted September 20, 2004 Hi , I talked with Christa today. She was very nice. As of today, Dr. has requested Shane's last lab result and some other paper work. Hopefully my son's pediatric office sends him enough convincing evidence that we will go down and see him soon. Shane's file is 3 inches thick. Shane's last name is Dettis and he is 7 years old. He was diagnosed with when he was 2 1/2. Could you find out how many children he sees that have been diagnosed with ? I would be interested in knowing that. Good luck with your visit tomorrow. Beverly Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 21, 2004 Report Posted September 21, 2004 Beverly, When I went to see him for the first time I went to the dr. office and got my records and brought them with me. Just a thought. Your ped would probably copy them for a fee. It is kind of nice having his whole file anyway. They could copy it for you if you give them enough time. Now when I leave my peds office I always ask for a copy of the visit. It is your right as a parent. The nurses don't mind at all and they actually appreciate your involvement. Just a thought for you in the future. If you have your calendar with the episodes marked on it bring it too. You are not going to have to convince him, he will believe you. Especially since you have had all the genetic tests done already. I am so glad you made the call, it is a long drive, but you seem like a driven mom. Shane is lucky to have you. I think you wrote about the smell Shane gives off...Hayden is fevering now and he stinks too. I associate it with the horrible gas he has when he is sick. His room smells so bad and his head smells. I think it is the gases leaving their through the poors. I am a hair dresser and I can smell, when I shampoo my clients, what they have been eating. Everything we ingest comes out through the skin. Especially meds. So tylenol, motrin, steroids, it all is seeping from the body not just in waste but in the sweat. Just a thought on my theory. I gotta tell you I have to fumagate his room after an episode. So glad you called, you won't be disappointed in him. I will ask him how many cases of Pfapa he has seen. If I remember correctly, he said that they haven't seem too many. I could be wrong. I will ask. Good luck, Mom to Hayden > > > > > > > Wondering if anyone ever had experience with pain in > the > > > > toes?? > > > > > > Jarrod > > > > > > > was extremely restless (up every hour) 2 nights ago > > > > complaining > > > > > > about his > > > > > > > toes. He also has the start of a mouth sore and we are > > close > > > > to > > > > > > the time > > > > > > > he should fever. We did skip last months fever, but he > has > > > had > > > > > > times in > > > > > > > the past where we've skipped a month or so. Not sure > if > > the > > > > toe > > > > > > pain can > > > > > > > be symptomatic of . > > > > > > > > > > > > > > - SWFL > > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted September 21, 2004 Report Posted September 21, 2004 Beverly, When I went to see him for the first time I went to the dr. office and got my records and brought them with me. Just a thought. Your ped would probably copy them for a fee. It is kind of nice having his whole file anyway. They could copy it for you if you give them enough time. Now when I leave my peds office I always ask for a copy of the visit. It is your right as a parent. The nurses don't mind at all and they actually appreciate your involvement. Just a thought for you in the future. If you have your calendar with the episodes marked on it bring it too. You are not going to have to convince him, he will believe you. Especially since you have had all the genetic tests done already. I am so glad you made the call, it is a long drive, but you seem like a driven mom. Shane is lucky to have you. I think you wrote about the smell Shane gives off...Hayden is fevering now and he stinks too. I associate it with the horrible gas he has when he is sick. His room smells so bad and his head smells. I think it is the gases leaving their through the poors. I am a hair dresser and I can smell, when I shampoo my clients, what they have been eating. Everything we ingest comes out through the skin. Especially meds. So tylenol, motrin, steroids, it all is seeping from the body not just in waste but in the sweat. Just a thought on my theory. I gotta tell you I have to fumagate his room after an episode. So glad you called, you won't be disappointed in him. I will ask him how many cases of Pfapa he has seen. If I remember correctly, he said that they haven't seem too many. I could be wrong. I will ask. Good luck, Mom to Hayden > > > > > > > Wondering if anyone ever had experience with pain in > the > > > > toes?? > > > > > > Jarrod > > > > > > > was extremely restless (up every hour) 2 nights ago > > > > complaining > > > > > > about his > > > > > > > toes. He also has the start of a mouth sore and we are > > close > > > > to > > > > > > the time > > > > > > > he should fever. We did skip last months fever, but he > has > > > had > > > > > > times in > > > > > > > the past where we've skipped a month or so. Not sure > if > > the > > > > toe > > > > > > pain can > > > > > > > be symptomatic of . > > > > > > > > > > > > > > - SWFL > > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted September 22, 2004 Report Posted September 22, 2004 Hi , Its Azzie, Just wondering if your doctor knows of any specialists in LA. If you get a chance would you mind asking. I hope you don't mind! Azzie, Mom to Kianna 6 1/2 Rustin 4 California webyers <webyers@...> wrote: -Beverly, I would love to help you in any possible way. You can email me at wbyers@.... I think you will love them. If you have a PPO you shouldn't have a problem. Stanford is a teaching hospital and I love the way they work. You see a Dr, and a Fellow at the same time. They all bounce off each other and talk about the cases. They are so young you feel like you are with Doogy Howser. They listen and ask alot of questions. To the point where it is frusterating. They just need to make sure they don't miss anything. You were smart to get the genetic testing done. So many don't get that out of the way first. It is expensive. Good luck and please email me if you have any problems getting him in. They know us, because I am a pain in their hiney, and I will be speaking to Dr. tomorrow. I will mention Shane. What is your last name. He will be excited to explore another child with this syndrome. I tell him about the board all the time and how much I have learned. Email me with your info, I'd love to get in your boat with you. LOL Mom to Hayden California -- In , " Beverly Dettis " <bdettis@s...> wrote: > Hi , > > Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! > > I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! > > I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. > > Beverly > Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 22, 2004 Report Posted September 22, 2004 Hi , Its Azzie, Just wondering if your doctor knows of any specialists in LA. If you get a chance would you mind asking. I hope you don't mind! Azzie, Mom to Kianna 6 1/2 Rustin 4 California webyers <webyers@...> wrote: -Beverly, I would love to help you in any possible way. You can email me at wbyers@.... I think you will love them. If you have a PPO you shouldn't have a problem. Stanford is a teaching hospital and I love the way they work. You see a Dr, and a Fellow at the same time. They all bounce off each other and talk about the cases. They are so young you feel like you are with Doogy Howser. They listen and ask alot of questions. To the point where it is frusterating. They just need to make sure they don't miss anything. You were smart to get the genetic testing done. So many don't get that out of the way first. It is expensive. Good luck and please email me if you have any problems getting him in. They know us, because I am a pain in their hiney, and I will be speaking to Dr. tomorrow. I will mention Shane. What is your last name. He will be excited to explore another child with this syndrome. I tell him about the board all the time and how much I have learned. Email me with your info, I'd love to get in your boat with you. LOL Mom to Hayden California -- In , " Beverly Dettis " <bdettis@s...> wrote: > Hi , > > Thanks for your quick response. I'm very excited about the information you sent me. I plan on calling them tomorrow. It's great to know that these doctors know about . That in itself is HUGE!!! > > I know how crazy insurance can be. It took me months to get our insurance to okay Shane to have genetic testing done. I'm sure it's going to be alot of work to get this approved!! > > I live in Roseville, which just north of Sacramento. I read that you are in Los Gatos. That's only a few hours away. If you want my phone number or personal email let me know. It's great to have someone else in the same crazy boat as us who lives close to us. > > Beverly > Re: /Califormia > > > Beverly, > > I see an ID named Dr. at the clinic, and a Dr. Kathleen > Gutierrez. AWESOME Dr's. You will love them. I had to go through > clinic because that is the way they do it there. The # is 650- 723- > 5682. Christa Parish is the admin and she is also awesome. I am > very impressed at the amount of knowledge we shared. As you > probably know when you see a new Dr. you have to tell them what > is, but not with them. > > Anyway start with Christa and she will tell you the route you will > need to take to get Shane in. I am going to Dr. Messner (ENT) for > the T & A. That is where the 2 Drs. send all the kids. Dr. > Messner will do it if Dr. say to. Which he will after meeting > Shane and hearing his symptoms. Good luck and where do you live??? > Make sure you check with your insurance to see if they take it. If > they don't bill under the Stanford tax id it may not be covered. So > just pay attention to how they bill it. Make sure you ask the > clinic if they are contracted with your insurance. Not if they take > it. Contracted is the word you want. I learned many insurance > tips through not asking the right ?'s. It gets expensive. > > Good luck, > If I can help any further please email me. > > wbyers@s... > > > California > Mom to Hayden 3,Phoenix 10mo, > > > > > > Wondering if anyone ever had experience with pain in the > > > toes?? > > > > > Jarrod > > > > > > was extremely restless (up every hour) 2 nights ago > > > complaining > > > > > about his > > > > > > toes. He also has the start of a mouth sore and we are > close > > > to > > > > > the time > > > > > > he should fever. We did skip last months fever, but he has > > had > > > > > times in > > > > > > the past where we've skipped a month or so. Not sure if > the > > > toe > > > > > pain can > > > > > > be symptomatic of . > > > > > > > > > > > > - SWFL > > > > > > Mother of Jarrod (2) > > > > > > > > > > > > > > > Quote
Guest guest Posted September 25, 2004 Report Posted September 25, 2004 Hi Beverly, We live in Galt, CA and I know of another family in . Two success stories. We went through a 4 1/2 year living hell to get our son, , diagnosed. He saw just about every type of doc you can thing of, including Dr Kastner at NIH. We found this site just before we headed back east. All the tests at NIH were negative. We had just started seeing Dr Senders at UC , we handed him some of the papers on and tonsillectomies. We told him we wanted to try the surgery and he said sure. Surgery was March 2, 2004, Nick had one episode after five months but that's been it... that may have been something else. Nick had recurrent fevers every 3 weeks for 4 to 6 days. Early on he had sever eye pain but that diminished over the years. The other family's son, who is not part of this group, had many more symptoms; BM that were either solid food or like dirty water, lung problems and the bottom of his feet would peal at the end of each episode. He had a T & A last October and has been well since. T & A's do not work for every child. If we can answer any questions from anyone please feel free to contact us... my wife is Tracie. Our home # (209) 745-3806, my cell (209) 471-4612. We pray for this group often, Tim - Dad of - fever free at 6 1/2 y.o. Re: /Califormia Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
Guest guest Posted September 25, 2004 Report Posted September 25, 2004 Hi Beverly, We live in Galt, CA and I know of another family in . Two success stories. We went through a 4 1/2 year living hell to get our son, , diagnosed. He saw just about every type of doc you can thing of, including Dr Kastner at NIH. We found this site just before we headed back east. All the tests at NIH were negative. We had just started seeing Dr Senders at UC , we handed him some of the papers on and tonsillectomies. We told him we wanted to try the surgery and he said sure. Surgery was March 2, 2004, Nick had one episode after five months but that's been it... that may have been something else. Nick had recurrent fevers every 3 weeks for 4 to 6 days. Early on he had sever eye pain but that diminished over the years. The other family's son, who is not part of this group, had many more symptoms; BM that were either solid food or like dirty water, lung problems and the bottom of his feet would peal at the end of each episode. He had a T & A last October and has been well since. T & A's do not work for every child. If we can answer any questions from anyone please feel free to contact us... my wife is Tracie. Our home # (209) 745-3806, my cell (209) 471-4612. We pray for this group often, Tim - Dad of - fever free at 6 1/2 y.o. Re: /Califormia Beverly, I see an ID named Dr. at the clinic, and a Dr. Kathleen Gutierrez. AWESOME Dr's. You will love them. I had to go through clinic because that is the way they do it there. The # is 650-723- 5682. Christa Parish is the admin and she is also awesome. I am very impressed at the amount of knowledge we shared. As you probably know when you see a new Dr. you have to tell them what is, but not with them. Anyway start with Christa and she will tell you the route you will need to take to get Shane in. I am going to Dr. Messner (ENT) for the T & A. That is where the 2 Drs. send all the kids. Dr. Messner will do it if Dr. say to. Which he will after meeting Shane and hearing his symptoms. Good luck and where do you live??? Make sure you check with your insurance to see if they take it. If they don't bill under the Stanford tax id it may not be covered. So just pay attention to how they bill it. Make sure you ask the clinic if they are contracted with your insurance. Not if they take it. Contracted is the word you want. I learned many insurance tips through not asking the right ?'s. It gets expensive. Good luck, If I can help any further please email me. wbyers@... California Mom to Hayden 3,Phoenix 10mo, > > > > > Wondering if anyone ever had experience with pain in the > > toes?? > > > > Jarrod > > > > > was extremely restless (up every hour) 2 nights ago > > complaining > > > > about his > > > > > toes. He also has the start of a mouth sore and we are close > > to > > > > the time > > > > > he should fever. We did skip last months fever, but he has > had > > > > times in > > > > > the past where we've skipped a month or so. Not sure if the > > toe > > > > pain can > > > > > be symptomatic of . > > > > > > > > > > - SWFL > > > > > Mother of Jarrod (2) > > > > > > > > > > > > Quote
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