Hello,Amy,from another Amy! I am a 2nd generation sufferer of Townes-Brocks syndrome. I have all of the symptoms of TBS,plus something they are just finding;vision loss.Most people with TBS go on to lead perfectly normal lives,with some devices to help with hearing,etc. If your daughter is still not talking at this age,please have her hearing tested,as mine was not detected until I reached the age of 10. She may have the sensouenural damage to the main nerves that decipher what 'comes in'...I don't know all the medical jargon,so I won't try to tell you in medical terms.Do not despair,tho,as long as you have your daughter's health monitored frequently,and any new issues that may come up,she will be fine,I promise!! I am 42yrs.old,got straight A's in school,and have two beautiful daughters;my oldest has some of the symptoms of TBS,plus(which we later found out is part of TBS)she is ADHD with some emotional issues.The one thing I do beg you,and you seem to be trying to find out all you can about TBS,is DO NOT LET THE DOCTORS TELL YOU YOU ARE IMAGINING THINGS!!! That is the main reason I now have so many health issues.Just give your daughter lotsa loving,support,and be there when she needs you emotionally.Supposedly,the gene that is affected and causes TBS,does not just 'pop' up unanounced,so it is interesting to know no one in your family test positive for TBS. My oldest daughter now has two beautiful sons;neither of them show any symptoms of this syndrome,so it is not guarenteed that your daughter will pass it on....if you would like to pm,I will share with you what I have thus far learned about this syndrome....take care,continue to give your daughter lots the 'mommy love',and make sure you get proper rest yourself,ok? Another TBSer and still enjoyin' life!!!

To.Amy,
Thank you so much for riplying to my message. I cant tell you how much that ment. I have had my daughters hearing checked. She had to have tubes put in her ears last oct. Because of ear infections ever other week. and she failed a hearing test. so after the tubes were in that helped her pass her hearing test. but a year has gone by and yet still no talking . I now have her starting speach threopy next week. we will see how that goes. I am also thrilled to here you had no problems in school. Do you think tbs only has to do with things you can see on the out side? Taylor has had surgery on her bottom, and had plastic surgery on her fingers ears and toes. she also has a surgery on her tummy. she had a intistine problem its called interseption something like that I dont know how to spell it. and when she is five they want to do surgery on her eye lids. they are both slanted. the left more than the right. the one on the left is almost covering her pupal. so as you can see taylor has been trough a lot. My only fear is of yet to come. Do you think there will be more? I have no Idea. Taylor is the most beautifull little girl. And so sweet. through all she has been trough it has not fased her a bit. I would love to here any thing you or anyone else knows about towns brocks syndrome. just hearing from you the first time brought tears to my eyes knowing i can communicate with someone who has lived through what my daughter is going trough.

Thank you, Thank you, Thank you,

amy-rozz

Hello,Amy!
I won't ly to you and tell you it is going to be easy,yet it will be easier becus you are not alone,trust me on this.You sound like you love little Taylor so much,that will make it easier on both of you! Do you have insurance? Are you close to a hospital with doctors who know what TBS is? I am not familiar with your location,so I can't point you in the direction of a good geneticist,but I will give you the number for the Children's Hospital here,if you wish....do you know how to pm someone on this forum? If you do,please pm me,and I will give you the number,and you can try there,or maybe I can come up with something else that may help you cope...again,all the mommy love you can give her will make it easier on both of you,I promise!Please stay in contact! Do you have support for you when it gets tough on you? Thinking of you and little Taylor....another TBSer and still loving life!

amy,
NO, I have no idea what pm means. Im new to all this. but im willing to do what ever it takes. I would love all the information i could get. Im from michigan. and no one around here seems to know anything about towns brocks. all taylors doctors are just as curious as I am. They told me the only way to be tested for this was in europe. is this true? please keep in touch, if your willing.

thank you so much

A-Rozz

Hello,Amy!
Wow,those doctors must really be in the dark concerning this syndrome! Can you afford to call North Carolina? The hospital here has a children's hospital...in this hospital,they have a geneticist(not sure on spelling) whose specialty is TBS! Right now,I can't remember the number for the clinic,but the number for the main hospital is:919-966-4131! ask for the children's hospital,then ask for Dr.Cynthia Powell,or another children's genenticist on call...and then let me know if you have gotten any where with that number,please? It can be treated here in the states;I was diagnosed here in Chapel Hill,North Carolina,roughly 1976 or so,so it is known in the states! General practioners don't know about genetics,so don't even talk to them about that....they won't know what in the world you are talking about and will say you are being a hypochondriac....darn,i wish i could help you more with figuring out this forum,and how to get to pm instructions...lemme figure it out,and we can go from there,ok? hang in there,Amy,you are not alone,I promise! Give sweet Taylor extra kisses tonite!!!

Amy,try this: go to top of page,and click on go.from there,go down to personal zone.inside personal zone( your profile for groupie) you will see private messaging....try that,and if it doesn't work,we can try something else!

I have been reading back on old decusions and there was a lot of tald about vision loss. Is this something that happens when your young or as you get older? My daughters vision is fine now, other than her eye lids are very druppy. and the eye lids have little notches in them . the doctors called it coloboma but it did not affect her vision. do you think that may be a posobility in her future?
sorry for my spelling its my down fall.

thanks--
Sleepless in Michigan
----A-Rozz

Amy,come into chat now,please? go to go,then click on it....go down to chat,click on it,wait patiently for a few seconds,then you will be there. please come in!

sorry my computer is very slow right now. I wil keep trying. to go to chat..
a-rozz

ok...am looking for you now!

Hey i was just wondering if anyone knows if you can get heart pains or chest pains with townes brock syndrome?? my partner keeps getting them and our doctors at the hospital (in new zealand) have not even heard of townes brock syndrome so they cant help us out. they asked us to spell it for them so they can look it up on the internet and they more or less told robert they dont no whats going on and sent him home!! yet they have the cheak to go on strike for a raise.. oh well if anyone knows if townes brock syndrome you can get any kind of chest pains please contact me many thanks.

hey,Cutie! One of the symptoms of tbs is cardiac problems...did they do any tests on his heart at all? I was born with a hole in my heart,and still have a heart murmur to this day..I am 42 now...if u would like to pm me,I will put you in touch with at least one or two docs that may be able to help you,and your husband! One is in Germany,the other is here in the states...good luck to both of you!!!

Hi people, I'm writing this in behalf of my friend shell who has a 5yo girl with towns brock. Seems that it's the same all over the world with all the backwards and forwards looking for information on one or more of the symptoms this condition has. Maddie has learning difficulties and we're out to find out if this could be linked to TB. From what i've read already it seems more than likely. Mad is also missing an x chromosone which means ??? and has what affect on her??? We would love any info, links or no.s to help us in this search for knowledge. It's beautiful to see such supportive informative people in the one place, thanks heaps and regards to u and yours

Hi,

My son was born with Townes-brock syndrome and has had several operations to correct extra digits, imperforated anus and hypospadius.
He has a very mild case of it and doesn't have any of the commonly associated symptoms such as kidney malfunction or hearing difficulties. Other than his thumbs, you wouldn't know there is a problem.
There is a very useful Yahoo group of fellow Townes-brock sufferers that the German specialist Dr Kohlhase posts information. You will find a great wealth of information and support there.
http://health.groups.yahoo.com/group/Townes-Brocks-Syndrome/

Incidentally, yes they are disovering that it can affect your eyes.

quote:

i was not really 'concerned' for healing,although,that would be nice...i was really trying to get in touch with others who suffer from this 'rare' syndrome to kind of not feel so alone in my trials with everyday life that it brings...

I have two questions:
1) Why would you rather commiserate than get better?
2) If you are not here for QT healing or support, why is this thread here?
I just read thru the whole 3 pages and couldn't find an association with Quantum-Touch.
Christina