Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 In a message dated 1/13/02 11:37:04 PM !!!First Boot!!!, jennette@... writes: << My son is 20 weeks old. He is blind in both eyes due to tumors. >> OH Jennette, I will certainly keep your family in my prayers .. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Welcome . You are in my thoughts and prayers. This group will be of great support for you and your family. God bless, Jane New Member Jens >Name: jens >Location: wisconsin >email: ckloes@... >Relationship: Family > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has >been tested my amany doctors and they think he might have nf2. He has a >hearing test next monday. He did fail the hearing tests many times at >birth. All of this is very scharry to my dh and I. Our 9 year old has to >be tested too. Any info would be great. >thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Welcome , Crew is like Family any time you need someone will be there ... I should know as I hollered very loud when I needed help smile ... Lois New Member Jens > > > >Name: jens > >Location: wisconsin > >email: ckloes@... > >Relationship: Family > > > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has > >been tested my amany doctors and they think he might have nf2. He has a > >hearing test next monday. He did fail the hearing tests many times at > >birth. All of this is very scharry to my dh and I. Our 9 year old has to > >be tested too. Any info would be great. > >thanks > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 JENNY, I'm sorry about your children My prayers are with you , I understand how hard this is ... CHIN UP !!! Lois New Member Jens > Name: jens > Location: wisconsin > email: ckloes@... > Relationship: Family > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has > been tested my amany doctors and they think he might have nf2. He has a > hearing test next monday. He did fail the hearing tests many times at > birth. All of this is very scharry to my dh and I. Our 9 year old has to > be tested too. Any info would be great. > thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Welcome Jen, Just curious has he been tested for retino blastoma (could be spelt different to this )this is also a genetic desease and affects babies with tumors behind the eyes sometimes only one but often both.I can only guess at the heartache you are going through right now. Hugs from Australia > >Name: jens >Location: wisconsin >email: ckloes@... >Relationship: Family > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has >been tested my amany doctors and they think he might have nf2. He has a >hearing test next monday. He did fail the hearing tests many times at >birth. All of this is very scharry to my dh and I. Our 9 year old has to >be tested too. Any info would be great. >thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Welcome ...though on a sad note. I am so sorry for your baby. What makes the doctor think that your baby has NF2? Does it run in your family? I have known of one other baby that had a tumor in one eye, but was not NF2. Your family has my prayers. I can't imagine what you must be going through. If you have any questions, please feel free to ask. Carol land Jennette Braaten wrote: Name: jensLocation: wisconsinemail: ckloes@...Relationship: Family My son is 20 weeks old. He is blind in both eyes due to tumors. He hasbeen tested my amany doctors and they think he might have nf2. He has ahearing test next monday. He did fail the hearing tests many times atbirth. All of this is very scharry to my dh and I. Our 9 year old has tobe tested too. Any info would be great.thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hey , My name is emily from australia, i am 16 years old i was only diagnosed 2 years ago. I'm really saddened to hear about your son, it is very unfair to all ppl but esp so young. It's great that if he does have it you can detect it now! When my mother was pregnant she had genetic counciling they told her wrong info about watching out for signs and that at a certain age i would have the all clear which is not true. Does this condition run in the family at all? If not it would probably be a good idea for you and your husband and your children to have MRI's just to be safe. Please let me know how evrything goes ..... Where do you live??? Best wishes > >Reply-To: NF2_Crew >To: " NF2 Crew " <NF2_Crew > >Subject: New Member Jens >Date: Sun, 13 Jan 2002 15:30:06 -0500 > >Name: jens >Location: wisconsin >email: ckloes@... >Relationship: Family > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has >been tested my amany doctors and they think he might have nf2. He has a >hearing test next monday. He did fail the hearing tests many times at >birth. All of this is very scharry to my dh and I. Our 9 year old has to >be tested too. Any info would be great. >thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Welcome Jens to the Crew. My heart goes out to you, your family and children. Please ask/tell the Crew anything that may be troubling you. We are here to support and assist where possible. I can appreciate how scared and worried you all must be. The Crew has the knowledge by experience, of the best Doctors available. I think perhaps your son may have the distinction of being our youngest member. ine from Australia New Member Jens > Name: jens > Location: wisconsin > email: ckloes@... > Relationship: Family > > My son is 20 weeks old. He is blind in both eyes due to tumors. He has > been tested my amany doctors and they think he might have nf2. He has a > hearing test next monday. He did fail the hearing tests many times at > birth. All of this is very scharry to my dh and I. Our 9 year old has to > be tested too. Any info would be great. > thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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