Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Hi Teri, Kirk and Gabby! Welcome to the friendliest place on the WWW! I think most people tell the "newbies" to first get the child's hearing checked (which you may want to do since you don't have concrete answers) with an ABR. Many people also recommend on this group to get a renal ultrasound done to check the kidney's (ears and kidney's develop at the same time), and some also recommend an EKG. As far as reconstruction, all I can tell you is they normally begin around 5-6 years of age. Many people here have or are going to Dr. Burt Brent in California for the reconstruction (http://www.earsurgery.com/) and Dr. Jarhsdorfer for the canalplasty. Welcome to the group, you will learn so much from everyone here! Christie and (11.5 mos/bilateral microtia/left atresia/right stenosis) -----Original Message-----From: Teri R. Sent: Thursday, January 30, 2003 6:42 PMTo: AtresiaMicrotia Subject: Introduction Hi All We are excited to be part of this Atresia/Microtia support group. We just adopted a 25 month old girl from China, Gabby, with Microtia/Atresia to her right ear. Her left ear also suffers from the birth defect but to a lesser degree and the canal is open. She appears to hear normally out of the left ear. While in China, the Dr.'s felt she could hear to some degree out of her affected ear, but they did not formally test her for hearing in that ear. We are wanting some guidance on where to start this process with her. We want to eventually reconstruct her ear and open the ear canal but because she is only 25 months old we were wondering if we should wait to have the intial consults done? And if we should proceed where should we go? Boston? California? Any help from you all would be greatly appreciated. Thank you. Teri and Kirk Topeka Kansas Mom and Dad to Gabby, 25 months old. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Terry, Kirk, and Gabby! Welcome! We began our " journey " with our son Josh (10) by taking him to a Craniofacial Team at our local Children's Hospital. The team approach works really well as Gabby is examined by a number of specialists (Plastic surgeon, oral surgeon, dentist, orthodontist, dietician, geneticist, etc) who work together to create a treatment plan for Gabby. I prefered this approach because it covered all the bases for Josh and left my husband and I with a lot of information to go on. We ended up not having his ear reconstructed locally, but went to Dr. Brent instead. For us, it was a great place to start and a wealth of information. (However, this site has oftentimes provided more useful infomation than the physicians). Hope this is helpful to you. Congratulations again and give Gabby a hug from us! Peace, beth > >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia > >Subject: Introduction >Date: Thu, 30 Jan 2003 17:41:56 -0600 (Central Standard Time) > >Hi All > >We are excited to be part of this Atresia/Microtia support group. >We just adopted a 25 month old girl from China, Gabby, with >Microtia/Atresia >to her right >ear. Her left ear also suffers from the birth defect but to a lesser >degree >and >the canal is open. She appears to hear normally out of the left ear. >While >in China, the Dr.'s felt she could hear to some degree out of her affected >ear, >but they did not formally test her for hearing in that ear. >We are wanting some guidance on where to start this process with her. We >want to >eventually reconstruct her ear and open the ear canal but because she is >only >25 months old we were wondering if we should wait to have the intial >consults >done? And if we should proceed where should we go? Boston? California? >Any help from you all would be greatly appreciated. >Thank you. >Teri and Kirk >Topeka Kansas >Mom and Dad to Gabby, 25 months old. > > _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi a! Just wanted to offer any information that I can on Hemifacial Microsomia (HFM). Our son Josh has microtia on the right side and HFM as well. He has had a couple of surgeries to his jaw to lengthen it and he is doing great. I think you are right in taking to specialists to rule out any concerns, like the kidneys etc. I was relieved when Josh was cleared of any problems with his heart and kidneys. An oral surgeon and plastic surgeon are good places to start with HFM. Josh is a wonderful and handsome boy who is in 4th grade and just got his report card - All A's! Can you tell I'm proud! Many blessings to you. Peace, beth > >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Introduction >Date: Mon, 3 Feb 2003 04:24:15 -0800 > >Teri and Kirk, > >Welcome to this group. I just joined a few weeks ago, and it has been >life saving for me. My son has Microtia/Atresia. I have had a >very difficult time coming to terms with this, and the support I have >received from this group is what has kept me going. > >My son is now 3 1/2 months old, and it has taken me this long to finally > " deal " with this and move on. > >I went to 's first Dr's visit regarding his condition, just this >past Friday. I will go into as much detail about what we discussed, for >your benefit, and also to share with everyone else in the group. Maybe >someone will let me know what I missed, and/or provide more advice. > >We went to see Dr. De La Cruz at the House Ear Institute (House >Ear Clinic, Inc.) in Los Angeles, California. Dr. De La Cruz was able to >answer some, but not all of our questions. He did go over the whole " ear >structure " and explained the details regarding s Atresia and >possible restoration of some hearing, which at this point my husband and >I are not too concerned about, since he appears to have normal hearing on >the left side. ( has unilateral Microtia/Atresia on the right >side). Dr. De La Cruz did request that we have an ABR (Auditory >Brainstem Response) test completed, and forward him the results. So this >should probably be where you should start with Gabby. > > underwent a CT scan at the hospital when he was born, and Dr. De La >Cruz, said " NO MORE X-RAY S! " Apparently none are needed until age 6 >when would be ready for surgery. > >Dr. De La Cruz said he would not need to see until he was 3 years >old, so apparently there is nothing else to do there, but wait. He did >suggest that we get in touch with Dr. Burt Brent. You will hear this >name being mentioned a lot. From what I have heard, he is one of the >best in ear reconstruction. Dr. De La Cruz's assisting nurse, indicated >to me that she has seen some of Dr. Brent's work, and that it's really >good. > >What Dr. De La Cruz did suggest, in our case, was to see a Cranio-Facial >team at a Children's Hospital due to the hemifacial deformities that > has. (which I - as a mother - had noticed since the day he was >born, but my sister swears she can't see). Unfortunately, Dr. De La >Cruz, also felt that has deformities on his head, specifically the >forehead area, so this is what has now sent me on another whirlwind of >sleepless nights, and tearful days. > >My husband's afraid I'm going to break down on him, but I have to remain >strong - for 's sake - he's going to need a strong mother for what >lays ahead of him. > >According to Dr. De La Cruz, the microtia/atresia that resulted in >hemifacial deformities may impact his face, his head and his jaw, >including his dental development, in which case we would need to see an >Oral Surgeon when the time comes. I don't mean to scare any " newbies " >with this information, but all of this had crossed my mind, so that's why >I asked Dr. De La Cruz so many questions. For all of those who have been >through this before, including the Cranio-Facial issues, I welcome all >advice you can offer, and look forward to reading your experiences. > >I asked Dr. De La Cruz if this was hereditary. He indicated that >sometimes it is genetics, but other times it is not. He asked if I >recalled being sick between 4-6 weeks of pregnancy, with a cold. My >husbands says I was, but I can't remember (it's been to long). In any >event, Dr. De La Cruz, indicated that in some cases it appears that if >the mother got the cold during that period in time it may have triggered >the Microtia/Atesia. Has anyone else heard this? > >Regarding the kidneys and heart, Dr. De La Cruz indicated that 99% of the >time those are normal, but following the advice of other parents in this >group I'm having my Pediatrician look into getting an ultrasound to check >'s kidneys, and an EKG for his heart. > >'s condition requires a lot of " wait and see " . There are no >specific hearing tests to seek out, or any benefits of intervention in >the first few years for , since he can hear out of his left ear. >When I asked him if I should be concerned about background noise, he said > " no " . (Any advice from others that have been there would be welcomed.) > >He could not answer my question on how I would know if has BOR >Syndrome, and referred me back to his pediatrician. I have an >appointment with him on the 14th to discuss this, although I don't know >if he himself would be able to answer this for me. > >Today I called Dr. Brent's office. The receptionist said to mail Dr. >Brent pictures of to include bad ear, good ear, and full face >pictures to see the deformities. She indicated a consultation would not >be necessary until was 4 or 5 years old. Does this sound right? >Should I push to get seen earlier? > >Well, I think that's all for now. Teri and Kirk, sorry for rambling on >so much. To the group, thanks for " listening " and I look forward to your >advice and comments. > >Thank you so very much, > >a >mother of right microtia/atresia stage II, 3 1/2 months _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 This is interesting, as I wasn't sick, but had terrible hayfever. I took a nasal spray antihistimine, Flonase, that my OB had prescribed as safe for allergies. Isn't Sudafed a antihistamine? Anyone else take antihistimines? I also had a German Measles immunization about a 2 years prior to becoming pregnant because I wasn't immunized as a child. Peace, beth > >Reply-To: AtresiaMicrotia >To: weiss10@..., AtresiaMicrotia >Subject: Re: RE: Introduction >Date: Wed, 05 Feb 2003 20:27:41 -0600 (CST) > >Hi Christie, >The being sick may have something to do with it. My oldest sister >(who was 12 years old at the time my Mom was expecting me) says she >can recall Mom being very sick while pregnant with me and overhearing >Mom and Dad saying they hoped and prayed that they didn't lose the >baby. >She also said after I was born a nurse came to the house to tend to >both Mom and me since Mom was sick after she had me too and was >bedridden. >So.... who knows for sure but there could be something to it. > > Patton _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 After reading everyone elses response with medication during pregnancy, it makes me think!! I was also given medication for hayfever during pregnancy. Phenergan and a nasal spray, Logicin. Hmmmmm!! Bec (Oz) (Mother of Lachie, 2 1/2, Grade 3 Unil Microtia Atresia) Re: RE: Introduction> >Date: Wed, 05 Feb 2003 20:27:41 -0600 (CST)> >> >Hi Christie,> >The being sick may have something to do with it. My oldest sister> >(who was 12 years old at the time my Mom was expecting me) says she> >can recall Mom being very sick while pregnant with me and overhearing> >Mom and Dad saying they hoped and prayed that they didn't lose the> >baby.> >She also said after I was born a nurse came to the house to tend to> >both Mom and me since Mom was sick after she had me too and was> >bedridden.> >So.... who knows for sure but there could be something to it.> >> > Patton> > > _________________________________________________________________> MSN 8 with e-mail virus protection service: 2 months FREE* > http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hi , Congratulations on your new daughter! This list will be very helpful to you and your family. My daughter has bilateral atresia and microtia and was adopted from Korea as an infant. I waited with the reconstruction until she wanted it, which wasn't until age 12. She is 15 now and has bilateral BAHAs which she loves compared to the old head band. She is in honors classes in high school and very active in varsity sports. Just enjoy your daughter - everything will be fine! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Welcome, , You will love this group! I am fairly new to this group also. You will find that this group is a wealth of knowledge and ideas. Everyone is so helpful. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Her > right jaw is smaller than the left, giving her a very slight > woppsided look. Is that a common thing with microtia? How will it > be corrected? She also had a skin tag that we have already had > removed. , Welcome to the group!! Yes, it is fairly common to have a small jaw/cheek that accompanies microtia/atresia. Usually they call this Hemifacial Microsomia. That's what I have, but on the left side. I haven't had jaw surgery yet but am starting to look into ti. Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hi , My name is Georgie and my son Anson is one he has microtia/atresia on the right side. My sons right is also slightly smaller than the other side the plastic surgeon told me that it was normal he told me sometimes this comes along with microtia because when the ears form the face will form with it. My sons jaw is different than the other side I'll try to explain. When you feel the jaw bone below your ear you will feel a bit of a cure under there my son does not have that it feels like the bone is straight. My son also has the tag of the ear his looks a bump of cartilage and the tag part of the ear. The tag part does stick of and the other day he was pulling on it. Anyways Anson does have a bit of an infection in his good ear when we went to see the ped Feb 21 he told me that hie ear looked quite red and there was some fluid in there so he put him on some antibiotics. We had an appointment at the childrens hospital on Feb 26 for a hearing test and he did very well but he was not hearing the very low sounds they checked his ear and and it was still red and the fluid was still there. I am hoping this does go away he has still been pulling at his ear. Also I've realized since hes started walking his feet are turned in I'm concerned because I had the same problem when I was a baby so I have to get referred to a specialist for that. Sometimes I feel if its not one thing its another. I just wanted to comment on 's doctor hes so quick to judge when he saids that if he had a child with this he wouldn't do anything but you know what he doesn't have a child with this and he does not have to deal with this we do. Some people are so quick to judge and we know as parents of these children that we have to make these decisions and we hope we make the best ones. People like that have children and there is never anything wrong with them because they would never be able to handle it. I am very lucky to have Anson he is my gift and I will learn so much from him more than I will learn from anything in my life. I'm sorry for rambling on. Georgie & Anson introduction Hi group,I am Knox, DH Larry. We adopted a little girl from China in May of 2002. She has microtia/atresia of the right ear. I am just begining to do the research on our options for her. She is 2 yrs old, so I have a little time. I am very thankful for that. Her right jaw is smaller than the left, giving her a very slight woppsided look. Is that a common thing with microtia? How will it be corrected? She also had a skin tag that we have already had removed. The very tiny scar is kind of cute as it looks like a dimple on her cheek. :)Big "Thank You" to Pamela for pointing me to this group. I plan on spending some time checking out all the links I found here. Then I'm sure I will have lots of questions for you guys.I noticed some of you have signatures that remind each other of who you are etc. How do I set that up?Glad to be here, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 << We had an appointment at the childrens hospital on Feb 26 for a hearing test and he did very well but he was not hearing the very low sounds they checked his ear and and it was still red and the fluid was still there. I am hoping this does go away he has still been pulling at his ear. >> Georgie, Anson will probably do better on the retest after his ear infection has cleared. I know that Brayden had a slight hearing loss in his " good " ear when he had a cold. When he went back for his retest he did fine. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Regards Dianne mum to Ben with microtia plagiocephaly and HFM and tibia torsion and umbilical hernia (just like her mum) dianne you are no more responsible for ben and sarah's having various health issues than i am for the iraq war and global recession. learn what you can. help as you best might. but for heaven's sake...why make things wose by faulting yourself.? (i no longer blame myself for iraq...) it will get better. we will help. love jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Thanks Jack -----Original Message----- From: GrossInsCo@... Sent: 03 March 2003 05:11 To: AtresiaMicrotia Subject: Re: introduction In a message dated 3/2/2003 4:02:42 PM Eastern Standard Time, dianneclark@... writes: Regards Dianne mum to Ben with microtia plagiocephaly and HFM and tibia torsion and umbilical hernia (just like her mum) dianne you are no more responsible for ben and sarah's having various health issues than i am for the iraq war and global recession. learn what you can. help as you best might. but for heaven's sake...why make things wose by faulting yourself.? (i no longer blame myself for iraq...) it will get better. we will help. love jack To unsubscribe from this group, send an email to: AtresiaMicrotia-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 Hi Angel, Welcome to the group. I'm sure there will be plenty of answer forthcoming, as this is a very responsive and helpful group. Angelia Introduction Hello, My name is Angel. I have 3 sons, Dennis 13 (dyslexic) Corey 12 (affected by autism) 2 (SLI). I am hoping to find some information regarding high functioning autism or aspergar's syndrome as far as educational options go. The only option that is being presented to me for my son is inclusion. I want to know is there another option available to me. And if not how do I go about getting another created for those parents like myself who want a more structured enviroment for their child.Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Angel, I wouldn't mind checking into this for you but am wondering what county you reside in. Every county is different and I could tell you all about Oakland but if you're in Wayne it won't do you much good. -----Original Message-----From: Angel Sent: Monday, May 19, 2003 5:14 PMTo: EverydayMiraclesAutism Subject: IntroductionHello, My name is Angel. I have 3 sons, Dennis 13 (dyslexic) Corey 12 (affected by autism) 2 (SLI). I am hoping to find some information regarding high functioning autism or aspergar's syndrome as far as educational options go. The only option that is being presented to me for my son is inclusion. I want to know is there another option available to me. And if not how do I go about getting another created for those parents like myself who want a more structured enviroment for their child.Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 NAME: Belinda LOCATION: Tennessee Welcome **~CANDI~** 246.0/216.0/147 (last updated 07/08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hi ! Welcome to the group! My name is Lori and I am from Wisconsin as well! (Wausau). Feel free to e-mail me if you'd like. >NAME: Tiedens > >LOCATION:(City and State only): Black River Falls, >Wisconsin > >OCCUPATION: teacher/designer > >MEMBER TYPE: regular ? I'm in the online >version...so I don't know >the correct word, but I do know I'm not lifetime! > >MY INTEREST IN THIS GROUP: I like having the >support and resources >communities like this are great for providing. > >HOW LONG HAVE YOU BEEN A WW MEMBER: 2 1/2 weeks > >WHAT ARE YOUR GOALS: First, I'd like to lose 90 >pounds, I'd also like >to become a healthier cook, less self-conscious and, >at some point in >time, a new mom > >FAVORITE 1 POINT SNACK: pickles > >FAVORITE 2 POINT SNACK: Rice Krispie Treat Pie > >FAVORITE 3 POINT SNACK: n/a > >OTHER INTERESTS: fixing up my house, watching my >flowers grow, fiddling >with anything and wandering about the lawn > >MY WEB SITE: www.bohtieque.com--but that's my >professional one. I >don't at the moment have a personal one, although it >would be fun to >design > >ADDITIONAL COMMENTS: I look forward to getting to >meet you all! > > > Tiedens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 testing one two three -- Re: Introduction Hi ! Welcome to the group! My name is Lori and I am from Wisconsin as well! (Wausau). Feel free to e-mail me if you'd like. >NAME: Tiedens >>LOCATION:(City and State only): Black River Falls,>Wisconsin>>OCCUPATION: teacher/designer>>MEMBER TYPE: regular ? I'm in the online>version...so I don't know >the correct word, but I do know I'm not lifetime!>>MY INTEREST IN THIS GROUP: I like having the>support and resources >communities like this are great for providing.>>HOW LONG HAVE YOU BEEN A WW MEMBER: 2 1/2 weeks>>WHAT ARE YOUR GOALS: First, I'd like to lose 90>pounds, I'd also like >to become a healthier cook, less self-conscious and,>at some point in >time, a new mom >>FAVORITE 1 POINT SNACK: pickles>>FAVORITE 2 POINT SNACK: Rice Krispie Treat Pie>>FAVORITE 3 POINT SNACK: n/a>>OTHER INTERESTS: fixing up my house, watching my>flowers grow, fiddling >with anything and wandering about the lawn >>MY WEB SITE: www.bohtieque.com--but that's my>professional one. I >don't at the moment have a personal one, although it>would be fun to >design >>ADDITIONAL COMMENTS: I look forward to getting to>meet you all!>>> Tiedens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Welcome Shirley. I know you can reach your goal weight too. After all, you are already half way there, so the battle is half over!! You'll get lots of support here. Henri in Granbury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 Cool ghost hunter! Welcome Amy Roxie ghost hunting Quote Link to comment Share on other sites More sharing options...
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