The Treacher Collins Family Support Group Forum

Welcome to the Treacher Collins Family Support Group Forum.

The Forum is here for TC Families, Individuals, Professionals or anyone who has an interest in Treacher Collins Syndrome to contact others.

Please use it wisely as it will be monitored and removed if used otherwise!

BAHA

by

My daughter is now fifteen (15) years old in a single-parent family home. She and I are very much hoping that someday she will be able to wear a BAHA. But with my financial situation, I cannot afford to pay for the device. Private medical insurance, Medicaid and Child Care Connection do not cover it. I am interested in knowing where I can go for this kind support.

I also want to know where my daughter and I can attend a support group for people with treacher collins syndrome.

Thank you for your attention and response to my post.

Please e-mail me.

Sincerely,

Norma

Posted on Jan 16, 2004, 4:26 PM

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To pay for the BaHa

by

We could not afford to pay for it either and a lady told us about a program called CRS, Child Rehabillation Services. It is a state program ran by each county to oversee families that need special services for their child. The Easter Seals ended up paying for our BaHa but there are groups out there that will help with the many differant cost involved.
I live in AL and I could help you here but I don't know about other states.
I will give you the name and number to the guy that fitted us for the BaHa, along with the name and number of the local CRS office here in AL. Maybe one of the two can help you.

John Wright
Children's HEAR Center
Birmingham, AL
205/939-6741

Ann Kyser
CRS service coordinator
334/222-2525ext355
She stays on the road but keep on trying.
Good luck, we would love to hear from yall,
Jay & Mia


Posted on Mar 21, 2004, 10:35 PM

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Just wondering

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Hello I am in Australia and have just found out what I have, I am know 41years old and no one has been able to tell me what caused or what the name of my condition is. We were watching a abc program on tv which showed me exactly what it is I have. Just wondering what a baha is as I wear a bone conductor but have been longing for the day for some sort of alternative. I would appreciate your feedback and also if I can help anybody out with answers I am only to happy to help Barry

Posted on May 30, 2005, 3:14 AM

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hello

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My daughter has TCS...I am happy to provide any information you are looking for. Please email me if you would like my assistance. Take care.

Posted on Jun 8, 2005, 6:38 AM

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info?

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I recently found out about TCS and suspect my husband may have it but mild form could you please direct me to some sights that may have some pictures to show him. thanks DD

Posted on Nov 23, 2005, 2:05 PM

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Re: info?

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I would contact www.tcconnection.org. People there are terrific and can provide as much information as one would like to get. Good luck.

Dan

Posted on Dec 2, 2005, 5:15 AM

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looking for help

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My daughter Sofia is two and a half years old and was born with Treacher Collins Syndrome. I would like to get in touch with any family or individual that has any experience on bone anchored or any other type of hearing aid that has efficiently worked so far. She is really behind in terms of speech development; I know this is a common problem with TCS but i'm exploring my options; doctors have not been of any help so far. Any type of information would be appreciated.
Thank you for your time.
Marcelo Congo.

Posted on Nov 15, 2003, 6:53 PM

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Untitled

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My daughter was born on 9-12-03 with what they are now calling Trecher- Collins syndrome. Can anyone give me n idea what we are going to be looking forward to? We have already been to a cranialfacial specialist but we won't really know what to look to in the future till Oct. 4th. I am worried about everyhing as of right now the not knowing is the hardest. Any info will be helpful.

Posted on Sep 19, 2003, 11:40 AM

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Response to Melinda

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I have a son born 6/4/03 with TC and he has been in the hospital for 3 weeks now. Along with the cranial/facial problems he was also born with a heart defect, which has been repaired and he is currently recovering from that. I would like to get in touch with you just to trade stories and ideas on how to manage all of these things. Hope to hear from you soon. You can e-mail me at shrmg@www.cuyahoga.oh.us.

Posted on Sep 28, 2003, 7:16 PM

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Reply

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Hello,
I was just looking up my name on the internet...Melinda Collins...how touching to read this about you and your son...please respond asap...I will say a prayer for you and your family...

Posted on Apr 12, 2004, 7:39 PM

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FmiKWubRBHJTBGLTMYG

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Posted on Aug 18, 2008, 6:37 PM

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Response to Melinda

by

I have a son born 6/4/03 with TC and he has been in the hospital for 3 weeks now. Along with the cranial/facial problems he was also born with a heart defect, which has been repaired and he is currently recovering from that. I would like to get in touch with you just to trade stories and ideas on how to manage all of these things. Hope to hear from you soon. You can e-mail me at shrmg@www.cuyahoga.oh.us.

Posted on Sep 28, 2003, 7:16 PM

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help with feeding

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MY SON SAM WAS BORN WITH TREACHER COLLINS ON 9TH AUGUST THIS YEAR. I AM HAVING TERRIBLE TROUBLE FEEDING HIM, HE IS NOT GROWING AS HE SHOULD AND IS PUTTING WEIGHT ON VERY SLOWLY. HE SEEMS TO SPIT MOST OF HIS FEED BACK OUT. I HAVE TRIED VARIOUS TEETS AND BOTTLES TO NO AVAIL. HAS ANYONE EXPERIENCED SIMILAR PROBLEMS AND DOES ANYONE HAVE ANY SOLUTIONS?
ANY FEED BACK WOULD BE APPRECIATED




Posted on Sep 19, 2003, 11:16 AM

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Have you tried...

by

My daughter was born last week and I had lots of problems feeding her too. Fortunately my Dr. got in touch with a specialist who gave me what they call a Haberman Feeder. It is a funn looking nipple that goes farther into the mouth since her bottom jaw is receeded. She is doing extremely well with this bottle. I am not sure if you have tried it or not but it may help if not. Tori has to have the mini haberman cause the other one is to big and chokes her. I hope this helps.Melinda

Posted on Sep 19, 2003, 11:47 AM

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Could this be TCS?

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My daughter is 8 years old. She has been diagnosed with Fetal Alcohol Syndrome (she's adopted), mental retardation, mild CP and ADHD. She has had an unusual look all of her life and we were always told it was the FAS, but now I heard of another FAS parent who just found out his son actually has TCS. We also adopted her birth brother and he doesn't have the same look or the same bretahing troubles. My daughter looks as though her eyes are "melting" off of her face. They are wide spaced and they dip way down at the outer corners. She does not have caved in cheekbones, but they are flat, not prominent. She has a very recessed lower jaw and her teeth are horribly crowded, top and bottom. It is written on her paperwork that she had a "small cleft palate" when born, but she's had her tonsils and adenoids out (twice on the adenoids and we've been told she needs them out again!) and the doctor said the cleft was so small he could hardly detect it. She has repeated ear infections and we've been told that her ear canals are extremely small. She's had ear tubes. I saw these posts about noisy nighttime breathing and that's one of our biggest concerns. She had a sleep study and that showed that she wasn't having apnea, but I never felt as though she really feel deeply asleep while we were there. Her breathing/snoring is extremely noisy and when I watch her, her chest looks like it's really making an effort to suck in air. She's also started this habit (?) of making this funny noise throughout the day like she's closing off the back of her throat with her tongue and blowing a puff of air out her noseShe saw a cranio facial doctor last March and he has referred her to see the "team", but I'm wondering if this is what they may say she has. He said she could use some surgery to her eyes and jaw and that her palate is a wee bit too long. She just doesn't look as severe as a lot of the photos I see, but I do see her in them. Can a person just have a very mild case of TCS? Thank you so much!!

Posted on Jun 27, 2003, 10:29 AM

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help

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I am a graduate student in the Speech Pathology department at California University of Pennsylvania and I am doing a presentation on Treacher Collins and the effects on families. I was wanting information or brochures, but I need them by next tuesday. If you can give me any help, please do. I would greatly appreciate it.

Posted on Jun 18, 2003, 3:35 PM

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meetinng of sunday 27th

by the dolton family

we are writing from goonhilly earth station in cornwall from the cyber cafe. we found the TC website and decided to send our best wishes see you on sunday.Regards Stu, Carol, Becky and Kathryn

Posted on Apr 24, 2003, 6:13 AM

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Sleep apnoea

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Does anyone who has TCS have sleep apnoea? This is loud snoring/snorting and stopping breathing and feeling very tired all the time. If so, how do you cope with it? Have you had any medical treatment? What?
Thanks for your help,
Julia

Posted on Apr 14, 2003, 6:05 AM

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Yes

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My 5 1/2 old daugter has it. We have to keep her on a monitor for it. She has had to have a tracheostomy because it has become so servere. The doctors have told us that with chin development or chin extention surgery that it would lessen or even go away.
I hope that has helped you we would love to hear more about you.
Thanks,
Jay, Steph, & Mia

Posted on Mar 21, 2004, 9:56 PM

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Sleep Apnea

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Yes, sleep apnea is very much associated with Treacher Collins Syndrome, which I have. All of the symptoms you had described was what I had experienced until I had had a sleep study done. The sleep study was done at St. Luke's Hospital in Kansas City, MO. I'm happy to report that I'm now much better due to using a CPAT machine, which blows air into your airway so that one's airway remains open. Let me know what further information you'd like to know and I'd be more than happy to share it with you.

Posted on Jul 21, 2005, 8:10 AM

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remember-me?

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olá Elsa
se esta mensagem chegar até ti, responde-me por favor.

continuo em Portugal e neste momento estou a trabalhar como jornalista da imprensa escrita.

também podes encontrar-me em pfcosta@dnoticias.pt

espero resposta. adeus. beijos.

Posted on Mar 5, 2003, 12:50 PM

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BAHA Headband

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Greetings! We have an eleven year old daughter with TCS and are considering obtaining the BAHA technology initially through a headband rather than the traditional "clip on" method. We are considering method because of possible future surgeries which may interfere with the clip on site. Has anyone had experience with the BAHA headband, and if so, what are your thoughts with it?

Thank you in advance for your insight.

Posted on Jan 13, 2003, 6:25 AM

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the baha

by dolton family

the baha using the titanium implant is , in our experience , far superior than any head band. becky does not even feel as if she is wearing an aid.

the head baand is uncomfortable and can rub.

we are sending this messaaage from goonhhilly earth stn in corrnwall, england so sorry it is brief

go for the implant, it is a simple two stage op over 3 mnths
yooou wwill not regret it !!!


Posted on Apr 24, 2003, 6:23 AM

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