Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 rita acutlay just had another hearing test toda hearing has gone down now isnt that funny coz we are on the subject of this stuff but my loss is well sensory neural butit the bone conductor works best for me so its also in the other area to if that make sence i take antiboitics for vaious staph and blood type bacterimias which ive ahd and that coursed ti to go down and also one toerh thing which i didtn think of but i also had a salt inblance which made it go down to dont knwo wat is doing ti this time ive got a lot of fluid on the ear drum and we are hoping that that is the case hm i will update you all on that oen when we see ent hug sellen > > , > > Can I ask what type of allergy meds does Aubrie take and how old was she > when she started taking them? > (Also, did she ever have her adnoids removed? or have they ever posed any > problems for her. Apologies > if this was in an earlier post and I missed it) > > (PS-I love the picture of Aubrie in her karate outfit belt!) > > > (mom to 23months CHARGE, 5.5 years, wife to Pat) > New York > > RE: Hearing loss (mis)diagnosis > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding that > > Aubrie > > needs it or she gets very congested with sinus and ear infections > > following. > > Just wondering. If/when you try the bone conduction and/or baha, be > sure > > to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 rita acutlay just had another hearing test toda hearing has gone down now isnt that funny coz we are on the subject of this stuff but my loss is well sensory neural butit the bone conductor works best for me so its also in the other area to if that make sence i take antiboitics for vaious staph and blood type bacterimias which ive ahd and that coursed ti to go down and also one toerh thing which i didtn think of but i also had a salt inblance which made it go down to dont knwo wat is doing ti this time ive got a lot of fluid on the ear drum and we are hoping that that is the case hm i will update you all on that oen when we see ent hug sellen > > , > > Can I ask what type of allergy meds does Aubrie take and how old was she > when she started taking them? > (Also, did she ever have her adnoids removed? or have they ever posed any > problems for her. Apologies > if this was in an earlier post and I missed it) > > (PS-I love the picture of Aubrie in her karate outfit belt!) > > > (mom to 23months CHARGE, 5.5 years, wife to Pat) > New York > > RE: Hearing loss (mis)diagnosis > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding that > > Aubrie > > needs it or she gets very congested with sinus and ear infections > > following. > > Just wondering. If/when you try the bone conduction and/or baha, be > sure > > to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 rita acutlay just had another hearing test toda hearing has gone down now isnt that funny coz we are on the subject of this stuff but my loss is well sensory neural butit the bone conductor works best for me so its also in the other area to if that make sence i take antiboitics for vaious staph and blood type bacterimias which ive ahd and that coursed ti to go down and also one toerh thing which i didtn think of but i also had a salt inblance which made it go down to dont knwo wat is doing ti this time ive got a lot of fluid on the ear drum and we are hoping that that is the case hm i will update you all on that oen when we see ent hug sellen > > , > > Can I ask what type of allergy meds does Aubrie take and how old was she > when she started taking them? > (Also, did she ever have her adnoids removed? or have they ever posed any > problems for her. Apologies > if this was in an earlier post and I missed it) > > (PS-I love the picture of Aubrie in her karate outfit belt!) > > > (mom to 23months CHARGE, 5.5 years, wife to Pat) > New York > > RE: Hearing loss (mis)diagnosis > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding that > > Aubrie > > needs it or she gets very congested with sinus and ear infections > > following. > > Just wondering. If/when you try the bone conduction and/or baha, be > sure > > to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi everyone Reading up on the ears etc..Amelie is about to have another test, this time at home on Thursday...we still to her 15 months have no hearing aids of any kind in place..so the ears frustrate me, i hope this week they make a decision to do something, especially as most children have some form of aid. lesley x > > Bonnie- > Does Patty take allergy meds this time of year? We are finding that Aubrie > needs it or she gets very congested with sinus and ear infections following. > Just wondering. If/when you try the bone conduction and/or baha, be sure to > let us know how it goes. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi everyone Reading up on the ears etc..Amelie is about to have another test, this time at home on Thursday...we still to her 15 months have no hearing aids of any kind in place..so the ears frustrate me, i hope this week they make a decision to do something, especially as most children have some form of aid. lesley x > > Bonnie- > Does Patty take allergy meds this time of year? We are finding that Aubrie > needs it or she gets very congested with sinus and ear infections following. > Just wondering. If/when you try the bone conduction and/or baha, be sure to > let us know how it goes. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi everyone Reading up on the ears etc..Amelie is about to have another test, this time at home on Thursday...we still to her 15 months have no hearing aids of any kind in place..so the ears frustrate me, i hope this week they make a decision to do something, especially as most children have some form of aid. lesley x > > Bonnie- > Does Patty take allergy meds this time of year? We are finding that Aubrie > needs it or she gets very congested with sinus and ear infections following. > Just wondering. If/when you try the bone conduction and/or baha, be sure to > let us know how it goes. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 hope thsi test goes wel for you and her hmmmmm mum will be making ent appt soon just another thing to think about and ive got the hearing centre again in may hugs and i wont say how long uve been home les for fear itll jinx her but i want to say yay but i wont for it could and dont want to jinx it LOL love you > > Hi everyone > > Reading up on the ears etc..Amelie is about to have another test, > this time at home on Thursday...we still to her 15 months have no > hearing aids of any kind in place..so the ears frustrate me, i hope > this week they make a decision to do something, especially as most > children have some form of aid. > > lesley x > > > > > > > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding > that Aubrie > > needs it or she gets very congested with sinus and ear infections > following. > > Just wondering. If/when you try the bone conduction and/or baha, > be sure to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 hope thsi test goes wel for you and her hmmmmm mum will be making ent appt soon just another thing to think about and ive got the hearing centre again in may hugs and i wont say how long uve been home les for fear itll jinx her but i want to say yay but i wont for it could and dont want to jinx it LOL love you > > Hi everyone > > Reading up on the ears etc..Amelie is about to have another test, > this time at home on Thursday...we still to her 15 months have no > hearing aids of any kind in place..so the ears frustrate me, i hope > this week they make a decision to do something, especially as most > children have some form of aid. > > lesley x > > > > > > > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding > that Aubrie > > needs it or she gets very congested with sinus and ear infections > following. > > Just wondering. If/when you try the bone conduction and/or baha, > be sure to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 hope thsi test goes wel for you and her hmmmmm mum will be making ent appt soon just another thing to think about and ive got the hearing centre again in may hugs and i wont say how long uve been home les for fear itll jinx her but i want to say yay but i wont for it could and dont want to jinx it LOL love you > > Hi everyone > > Reading up on the ears etc..Amelie is about to have another test, > this time at home on Thursday...we still to her 15 months have no > hearing aids of any kind in place..so the ears frustrate me, i hope > this week they make a decision to do something, especially as most > children have some form of aid. > > lesley x > > > > > > > > > > Bonnie- > > Does Patty take allergy meds this time of year? We are finding > that Aubrie > > needs it or she gets very congested with sinus and ear infections > following. > > Just wondering. If/when you try the bone conduction and/or baha, > be sure to > > let us know how it goes. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Lesley, I know exactly how you feel. was so sick and in and out of the hospital the first 2 yrs. and we could not get an accurate hearing test done. They finally got the testing finished just after she turned 2 and we were able to get her hearing aids when she was 2 1/2 yrs old. It was frustrating to us as well, but she has done wonderful. She is learning fast and trying hard to catch up. I know Amelie will do the same -- she is a fighter. Hang in there. You are doing a great job. Mom to 3 yrs. CHARGE --------------------------------- Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1 & cent;/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well, although we are vigorously doing chest physio round the clock to keep the sticky green stuff at bay!! decisions soon just waiting for all the consultants to get back from easter hols and then we should no what we are doing next!! love you too, keep posting i enjoy reading your observations, from someone who knows best! love les x > > > > > > Bonnie- > > > Does Patty take allergy meds this time of year? We are finding > > that Aubrie > > > needs it or she gets very congested with sinus and ear infections > > following. > > > Just wondering. If/when you try the bone conduction and/or baha, > > be sure to > > > let us know how it goes. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well, although we are vigorously doing chest physio round the clock to keep the sticky green stuff at bay!! decisions soon just waiting for all the consultants to get back from easter hols and then we should no what we are doing next!! love you too, keep posting i enjoy reading your observations, from someone who knows best! love les x > > > > > > Bonnie- > > > Does Patty take allergy meds this time of year? We are finding > > that Aubrie > > > needs it or she gets very congested with sinus and ear infections > > following. > > > Just wondering. If/when you try the bone conduction and/or baha, > > be sure to > > > let us know how it goes. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Ellen, dare WE say it 2 whole weeks!!!!!!!!!!!!!isnt she doing well, although we are vigorously doing chest physio round the clock to keep the sticky green stuff at bay!! decisions soon just waiting for all the consultants to get back from easter hols and then we should no what we are doing next!! love you too, keep posting i enjoy reading your observations, from someone who knows best! love les x > > > > > > Bonnie- > > > Does Patty take allergy meds this time of year? We are finding > > that Aubrie > > > needs it or she gets very congested with sinus and ear infections > > following. > > > Just wondering. If/when you try the bone conduction and/or baha, > > be sure to > > > let us know how it goes. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , your story of s ears brings calm to my state of mind, i keep on panicking, and then when i hear someone else has been in the same boat, yet progressed despite no aids it keeps me going that bit longer. thank you les x > > Lesley, > > I know exactly how you feel. was so sick and in and out of the hospital the first 2 yrs. and we could not get an accurate hearing test done. They finally got the testing finished just after she turned 2 and we were able to get her hearing aids when she was 2 1/2 yrs old. It was frustrating to us as well, but she has done wonderful. She is learning fast and trying hard to catch up. I know Amelie will do the same -- she is a fighter. Hang in there. You are doing a great job. > > > Mom to 3 yrs. CHARGE > > > > > > --------------------------------- > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1 & cent;/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , your story of s ears brings calm to my state of mind, i keep on panicking, and then when i hear someone else has been in the same boat, yet progressed despite no aids it keeps me going that bit longer. thank you les x > > Lesley, > > I know exactly how you feel. was so sick and in and out of the hospital the first 2 yrs. and we could not get an accurate hearing test done. They finally got the testing finished just after she turned 2 and we were able to get her hearing aids when she was 2 1/2 yrs old. It was frustrating to us as well, but she has done wonderful. She is learning fast and trying hard to catch up. I know Amelie will do the same -- she is a fighter. Hang in there. You are doing a great job. > > > Mom to 3 yrs. CHARGE > > > > > > --------------------------------- > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1 & cent;/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , your story of s ears brings calm to my state of mind, i keep on panicking, and then when i hear someone else has been in the same boat, yet progressed despite no aids it keeps me going that bit longer. thank you les x > > Lesley, > > I know exactly how you feel. was so sick and in and out of the hospital the first 2 yrs. and we could not get an accurate hearing test done. They finally got the testing finished just after she turned 2 and we were able to get her hearing aids when she was 2 1/2 yrs old. It was frustrating to us as well, but she has done wonderful. She is learning fast and trying hard to catch up. I know Amelie will do the same -- she is a fighter. Hang in there. You are doing a great job. > > > Mom to 3 yrs. CHARGE > > > > > > --------------------------------- > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1 & cent;/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Lesley- Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss in one ear, mild-moderate in the other. One thing Judith Bluestone said at the HANDLE training is that there are no " critical " developmental periods. Rather they are " optimal " . It's not that you won't ever get the skill if it doesn't come at the " right " time, it just will come easier and more eloquently if you do. At a later time, it may take longer or be less strong. Does that make sense? So you know you want to get it going as soon as possible. But you also know that asap doesn't mean right now given all the other life-threatening stuff you are managing. It'll be ok. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Lesley- Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss in one ear, mild-moderate in the other. One thing Judith Bluestone said at the HANDLE training is that there are no " critical " developmental periods. Rather they are " optimal " . It's not that you won't ever get the skill if it doesn't come at the " right " time, it just will come easier and more eloquently if you do. At a later time, it may take longer or be less strong. Does that make sense? So you know you want to get it going as soon as possible. But you also know that asap doesn't mean right now given all the other life-threatening stuff you are managing. It'll be ok. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Michele, thanks and very reassuring, i do forget other children have been late, and sometimes I start to panic about the little things.... a funny story, when Amelie was 10 days old on a vent critically ill, and no one knew what was wrong with her, the consultant came that morning on the round, she said did i have any questions...yes i replied of course i have.. 'did you know Amelie is on three types of antibiotic and they have taken 6 xrays in the last 48 hours' she looked at me blankly and said 'yes' well i replied 'my worry is that all this antibiotic will ruin her secondary dentition (teeth) and what about having children they must be frying her ovaries'!!!!!! she looked at me and very kindly replied ' i understand your anxieties, but our priority at the moment is keeping her alive'!!!!!! i felt so silly, and each ward round after this for weeks said very little when asked if i had any questions!! moral of my CHAN story is i always worry about the little things!!!!!! thanks again Lesley x > > Lesley- > Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss > in one ear, mild-moderate in the other. One thing Judith Bluestone said at > the HANDLE training is that there are no " critical " developmental periods. > Rather they are " optimal " . It's not that you won't ever get the skill if it > doesn't come at the " right " time, it just will come easier and more > eloquently if you do. At a later time, it may take longer or be less > strong. Does that make sense? So you know you want to get it going as soon > as possible. But you also know that asap doesn't mean right now given all > the other life-threatening stuff you are managing. It'll be ok. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Michele, thanks and very reassuring, i do forget other children have been late, and sometimes I start to panic about the little things.... a funny story, when Amelie was 10 days old on a vent critically ill, and no one knew what was wrong with her, the consultant came that morning on the round, she said did i have any questions...yes i replied of course i have.. 'did you know Amelie is on three types of antibiotic and they have taken 6 xrays in the last 48 hours' she looked at me blankly and said 'yes' well i replied 'my worry is that all this antibiotic will ruin her secondary dentition (teeth) and what about having children they must be frying her ovaries'!!!!!! she looked at me and very kindly replied ' i understand your anxieties, but our priority at the moment is keeping her alive'!!!!!! i felt so silly, and each ward round after this for weeks said very little when asked if i had any questions!! moral of my CHAN story is i always worry about the little things!!!!!! thanks again Lesley x > > Lesley- > Remember that Aubrie didn't get her aids til age 3 yrs! She has severe loss > in one ear, mild-moderate in the other. One thing Judith Bluestone said at > the HANDLE training is that there are no " critical " developmental periods. > Rather they are " optimal " . It's not that you won't ever get the skill if it > doesn't come at the " right " time, it just will come easier and more > eloquently if you do. At a later time, it may take longer or be less > strong. Does that make sense? So you know you want to get it going as soon > as possible. But you also know that asap doesn't mean right now given all > the other life-threatening stuff you are managing. It'll be ok. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley- I, too, worry about all the meds, xrays, etc. But there truly is nothing we can do but minimize what we can and deal with the rest. The woman I work with has a 2 year old who is on daily steroids already. She has a chronic condition that requires the steroids, but there are so many side effects! What a difficult dilemma to know that what you must do to keep a child alive is actually harming them in some way. In her case, it's sort of a big harm. In our case, it's usually a little harm. The " mommy guilt " is so much bigger in CHARGEland than with other kids! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley- I, too, worry about all the meds, xrays, etc. But there truly is nothing we can do but minimize what we can and deal with the rest. The woman I work with has a 2 year old who is on daily steroids already. She has a chronic condition that requires the steroids, but there are so many side effects! What a difficult dilemma to know that what you must do to keep a child alive is actually harming them in some way. In her case, it's sort of a big harm. In our case, it's usually a little harm. The " mommy guilt " is so much bigger in CHARGEland than with other kids! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley, You make me laugh, but only from the point of view of understanding exactly what you are saying and why you asked those questions. The " silly " things we worry about! But hey, someone has to think of the little things. Let the medics think of the big things. At least it shows we are thinking of the whole picture, not just the here and now or the part in question. I know CHARGE issues mean that we are all keen to get everything in place s.a.p but don't forget that before universal infant hearing tests came into being 4 years ago, a great number of deaf children were not diagnosed until probably around age 3, yet if the aids worked, they did so a treat. Of course it may be different with CHARGE but in view of Amelie's other big issues, a little more patience (hmmmm, this from the woman who insisted on a hearing test while had just undergone a lifesaving PDA ligation! Hindsight is indeed perfect sight!). Oh, by the way, how did you get on with the Social Services appeal for respite hours? Flo > > Michele, > > thanks and very reassuring, i do forget other children have been > late, and sometimes I start to panic about the little things.... > > a funny story, when Amelie was 10 days old on a vent critically ill, > and no one knew what was wrong with her, the consultant came that > morning on the round, she said did i have any questions...yes i > replied of course i have.. > > 'did you know Amelie is on three types of antibiotic and they have > taken 6 xrays in the last 48 hours' she looked at me blankly and > said 'yes' well i replied 'my worry is that all this antibiotic will > ruin her secondary dentition (teeth) and what about having children > they must be frying her ovaries'!!!!!! she looked at me and very > kindly replied ' i understand your anxieties, but our priority at > the moment is keeping her alive'!!!!!! i felt so silly, and each > ward round after this for weeks said very little when asked if i had > any questions!! moral of my CHAN story is i always worry about the > little things!!!!!! > > thanks again Lesley x > > > > > > > > Lesley- > > Remember that Aubrie didn't get her aids til age 3 yrs! She has > severe loss > > in one ear, mild-moderate in the other. One thing Judith > Bluestone said at > > the HANDLE training is that there are no " critical " developmental > periods. > > Rather they are " optimal " . It's not that you won't ever get the > skill if it > > doesn't come at the " right " time, it just will come easier and more > > eloquently if you do. At a later time, it may take longer or be > less > > strong. Does that make sense? So you know you want to get it > going as soon > > as possible. But you also know that asap doesn't mean right now > given all > > the other life-threatening stuff you are managing. It'll be ok. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley, You make me laugh, but only from the point of view of understanding exactly what you are saying and why you asked those questions. The " silly " things we worry about! But hey, someone has to think of the little things. Let the medics think of the big things. At least it shows we are thinking of the whole picture, not just the here and now or the part in question. I know CHARGE issues mean that we are all keen to get everything in place s.a.p but don't forget that before universal infant hearing tests came into being 4 years ago, a great number of deaf children were not diagnosed until probably around age 3, yet if the aids worked, they did so a treat. Of course it may be different with CHARGE but in view of Amelie's other big issues, a little more patience (hmmmm, this from the woman who insisted on a hearing test while had just undergone a lifesaving PDA ligation! Hindsight is indeed perfect sight!). Oh, by the way, how did you get on with the Social Services appeal for respite hours? Flo > > Michele, > > thanks and very reassuring, i do forget other children have been > late, and sometimes I start to panic about the little things.... > > a funny story, when Amelie was 10 days old on a vent critically ill, > and no one knew what was wrong with her, the consultant came that > morning on the round, she said did i have any questions...yes i > replied of course i have.. > > 'did you know Amelie is on three types of antibiotic and they have > taken 6 xrays in the last 48 hours' she looked at me blankly and > said 'yes' well i replied 'my worry is that all this antibiotic will > ruin her secondary dentition (teeth) and what about having children > they must be frying her ovaries'!!!!!! she looked at me and very > kindly replied ' i understand your anxieties, but our priority at > the moment is keeping her alive'!!!!!! i felt so silly, and each > ward round after this for weeks said very little when asked if i had > any questions!! moral of my CHAN story is i always worry about the > little things!!!!!! > > thanks again Lesley x > > > > > > > > Lesley- > > Remember that Aubrie didn't get her aids til age 3 yrs! She has > severe loss > > in one ear, mild-moderate in the other. One thing Judith > Bluestone said at > > the HANDLE training is that there are no " critical " developmental > periods. > > Rather they are " optimal " . It's not that you won't ever get the > skill if it > > doesn't come at the " right " time, it just will come easier and more > > eloquently if you do. At a later time, it may take longer or be > less > > strong. Does that make sense? So you know you want to get it > going as soon > > as possible. But you also know that asap doesn't mean right now > given all > > the other life-threatening stuff you are managing. It'll be ok. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.