Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 thanks and we are avoiding dairy right now, but not soy--i have heard that soy might be a problem too Re: Intro >> I could sure use some help. If the tests are neg--why does Molly > feel better> on the diet? are> the tests 100% accurate, and could it be that because she has been GF> and then glutened, that the tests may be inaccurate?> I appreciate talking with anyone who might be able to help us.>The tests are not 100% accurate. She could also have an intolerance or late-phase (IgG) food allergy.You know what, though? If she feels best when she's gluten-free, she should stay GF. If she still has problems, perhaps she's reacting to something else. Dairy and soy could both be culprits.ygg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi , We live near the Kenosha area--so south of Milwaukee. Molly had her tests at Aurora Kenosha and the gene testing was sent to St. Luke's. I am thinking that children's might have been a better choice, but oh well. Re: Intro Hi ! I'm in Wi too and I know you are close to me by your area code. Are you north of Milwaukee or south? I'm in Mil. Co. just north of the city in the North Shore area. My 4 yr old has gotten a positive blood test from her dr. in Mequon and we go on Aug. 21 to Childrens Hospital. We see Dr. Tipnis., a GI specialist. I'm in a holding pattern until she's seen by him. They told me not to change her diet so we wait. I've had many of the symptoms of Celiac but my blood test came back neg. I also have a 2 yr old who complains of stomachaches when she eats but not knowing if it's from listening to her sister say it or if she really does. I will have her tested next. Did Molly have her testing done at Childrens too?? KATIE B.Happy Summer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi , We live near the Kenosha area--so south of Milwaukee. Molly had her tests at Aurora Kenosha and the gene testing was sent to St. Luke's. I am thinking that children's might have been a better choice, but oh well. Re: Intro Hi ! I'm in Wi too and I know you are close to me by your area code. Are you north of Milwaukee or south? I'm in Mil. Co. just north of the city in the North Shore area. My 4 yr old has gotten a positive blood test from her dr. in Mequon and we go on Aug. 21 to Childrens Hospital. We see Dr. Tipnis., a GI specialist. I'm in a holding pattern until she's seen by him. They told me not to change her diet so we wait. I've had many of the symptoms of Celiac but my blood test came back neg. I also have a 2 yr old who complains of stomachaches when she eats but not knowing if it's from listening to her sister say it or if she really does. I will have her tested next. Did Molly have her testing done at Childrens too?? KATIE B.Happy Summer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi , We live near the Kenosha area--so south of Milwaukee. Molly had her tests at Aurora Kenosha and the gene testing was sent to St. Luke's. I am thinking that children's might have been a better choice, but oh well. Re: Intro Hi ! I'm in Wi too and I know you are close to me by your area code. Are you north of Milwaukee or south? I'm in Mil. Co. just north of the city in the North Shore area. My 4 yr old has gotten a positive blood test from her dr. in Mequon and we go on Aug. 21 to Childrens Hospital. We see Dr. Tipnis., a GI specialist. I'm in a holding pattern until she's seen by him. They told me not to change her diet so we wait. I've had many of the symptoms of Celiac but my blood test came back neg. I also have a 2 yr old who complains of stomachaches when she eats but not knowing if it's from listening to her sister say it or if she really does. I will have her tested next. Did Molly have her testing done at Childrens too?? KATIE B.Happy Summer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 ,There are a great many ways that celiac testing can go wrong. First of all, get a copy of her lab results and both the procedure note and the pathology report from her biopsy. Read them for yourself and look for clues to see if everything was looked for that should have been looked for. I have even heard of doctors noting villous blunting, yet still calling the biopsy normal. We also had our share of problems with diagnosis (I'll share with you if you wish). If you have questions, either email me or the Silly Yaks and myself or someone else (possibly many) will answer. Cheryl in MNrxp_us@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Thank you very much, Cheryl! I am most interested in learning all I can and I will request all of the reports so I can look them over. Re: Intro , There are a great many ways that celiac testing can go wrong. First of all, get a copy of her lab results and both the procedure note and the pathology report from her biopsy. Read them for yourself and look for clues to see if everything was looked for that should have been looked for. I have even heard of doctors noting villous blunting, yet still calling the biopsy normal. We also had our share of problems with diagnosis (I'll share with you if you wish). If you have questions, either email me or the Silly Yaks and myself or someone else (possibly many) will answer. Cheryl in MN rxp_us (AT) yahoo (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 Hi all, I've been lurking for a while. I have 2 children Rhett 4 (mod-severe bilateral hearing loss) Sela (hearing - at the moment). Rhett was diagnosed in May and Sela had the BAER test in June. My brother and three of my cousins have (progressive) impaired hearing. The parental rollercoaster ride still, even with my life experience, has been challenging. So far this group has really helped our family's transition. Right now the shock has worn off and we're hitting our stride. Now we're waiting for financial aid/info from the state so we can get hearing aids and a FM. He has loner aids/FM now. His Speech Evaluation put him at his age level. Rhett loves to make music (guitar & drums) so if anyone has any info/research on music education for young children and for the hh we'd greatly appreciate it. We're in Little Rock, AR and are currently searching for a " teacher " /mentor. We want to jump on the opportunty to use all of the hearing that he has now just incase- ya know. Thanks so much. I learned a lot and look forward to learning more. Verda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Welcome to the group, Verda! Little Rock is a gorgeous area - I was just down there for training for my company in March. I'll keep my ears/eyes open for any materials along the lines of what you're looking for. I personally don't have any, but I'd be willing to bet that someone else on the list does. Nice to meet you! Kris Mom to (8, Profound/Complete SNL, Left Ear) and Ethan (6, hearing) _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of Verda Sent: Friday, August 25, 2006 10:53 PM To: Listen-Up Subject: Intro Hi all, I've been lurking for a while. I have 2 children Rhett 4 (mod-severe bilateral hearing loss) Sela (hearing - at the moment). Rhett was diagnosed in May and Sela had the BAER test in June. My brother and three of my cousins have (progressive) impaired hearing. The parental rollercoaster ride still, even with my life experience, has been challenging. So far this group has really helped our family's transition. Right now the shock has worn off and we're hitting our stride. Now we're waiting for financial aid/info from the state so we can get hearing aids and a FM. He has loner aids/FM now. His Speech Evaluation put him at his age level. Rhett loves to make music (guitar & drums) so if anyone has any info/research on music education for young children and for the hh we'd greatly appreciate it. We're in Little Rock, AR and are currently searching for a " teacher " /mentor. We want to jump on the opportunty to use all of the hearing that he has now just incase- ya know. Thanks so much. I learned a lot and look forward to learning more. Verda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi Verda and welcome. I just stumbled across this new resource last week and asked the school to order it. We do have a deaf music class here. Janet http://www.agbell.org/DesktopDefault.aspx?p=Bookstore Hear & Listen! Talk & Sing! Warren Estabrooks, M.Ed., Dip. Ed. Deaf, Cert. AVT®, and Lois Birkenshaw-Fleming, B.A., ARCT Created for teachers and professionals, this music book and CD integrates songs with speech sounds to enable young children with hearing loss to develop melodic, natural- sounding voices and to enhance linguistic skills. Songs include sounds that are acoustically relevant to children with severe or profound hearing loss ages 18 months to 7 years. Songs are grouped in categories such as animals, weather and holidays and vary in difficulty. Catalog C0620 AG Bell member price $42.50 plus shipping Nonmember price $50.00 plus shipping > Rhett loves to make music (guitar & drums) so if anyone has any info/research on music > education for young children and for the hh we'd greatly appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Verda, how old is your son?? We did Yamaha piano class with our kids, including the HOH one. They teach the kids to sing solfege - the " do re mi " which helps them with pitch and also sight reading of music, along with piano. It would have been better for Maggie if we'd had her FM at the time she took it. It even helped me be able to sing the alto line of songs! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 In a message dated 8/28/2006 5:02:05 PM Eastern Daylight Time, pcknott@... writes: We did Yamaha piano class with our kids, including the HOH one. Ian also did the Yamaha piano when he was a little guy. We stopped only when he started to refuse to practice. He'd only practice his favorite stuff, and nothing else. So, instead of making it a big war and causing him to dislike music, we stopped the piano and he learned to play the recorder just for fun. It was a fun and good program. Not nearly the intensely focused, obsessive program some people think it is. Ian had a blast. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Janet, Thanks for the link I'll check it out. It looks interesting. How is your deaf music class different from a hearing music class? , Rhett is 4. I'll check into Yamaha piano. Sounds like a good place to start. Thanks. Verda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Verda, there is also Yamaha and Suzuki violin for kids. They train their ear so it is great for both kids with good pitch and for kids who need help with pitch. There is also something called Kindermusik which is also a franchise so it is in many different areas. 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.