Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Jens, Sorry your doctors think your son has NF2. There are several of us on the crew with kids who have NF2. You mentioned once before that your sons information had gone to a retina specialist here in Houston. You didn't say his name, but I wanted to mention our doctor here. Dr. is a genetic retina specialist here in Houston who has a lot of experience seeing people who have NF2 and giving the correct diagnosis. So, if your sons records haven't gone to him he would be a good doctor to send them to. My sons eye problem was diagnosed at six months due to his eye wandering out, but they thought it was something else. Then when he was six we finally got the right diagnoses of a retinal hamartoma and he has had MRIs and more tumors have been found. He is now seven and doing fine even after having had surgery to remove a tumor in his neck when he was six. Try not to worry too much about the future for your son. The news is shocking and hard to deal with at first, but it will get easier with time. You will learn to be good at watching and waiting since that is what we all do a great deal of. :-) Take care, > Well we just heard from retina doctor. She along with the > pediactric opthomologist and Gentic doctor (who specializes in nf) Have > changeed there tune. They thought he did not have it and know they are 99% > he does have nf2. I canont tell you how sad my husband and I are to hear > this news. THink he is youngest with dx he will be 6 months. I guess we > don't know what to except next. Anyone else with a child how has this? > thanks > Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Yes Jane Good words of wisdom... Lois Re: bad news > > > > > >Jens, > >Sorry your doctors think your son has NF2. There are several of us on the > >crew with kids who have NF2. You mentioned once before that your sons > >information had gone to a retina specialist here in Houston. You didn't > say > >his name, but I wanted to mention our doctor here. Dr. is a > >genetic retina specialist here in Houston who has a lot of experience > seeing > >people who have NF2 and giving the correct diagnosis. So, if your sons > >records haven't gone to him he would be a good doctor to send them to. My > >sons eye problem was diagnosed at six months due to his eye wandering out, > >but they thought it was something else. Then when he was six we finally > got > >the right diagnoses of a retinal hamartoma and he has had MRIs and more > >tumors have been found. He is now seven and doing fine even after having > >had surgery to remove a tumor in his neck when he was six. Try not to > worry > >too much about the future for your son. The news is shocking and hard to > >deal with at first, but it will get easier with time. You will learn to be > >good at watching and waiting since that is what we all do a great deal of. > >:-) Take care, > > > >> Well we just heard from retina doctor. She along with the > >> pediactric opthomologist and Gentic doctor (who specializes in nf) Have > >> changeed there tune. They thought he did not have it and know they are > >99% > >> he does have nf2. I canont tell you how sad my husband and I are to > hear > >> this news. THink he is youngest with dx he will be 6 months. I guess we > >> don't know what to except next. Anyone else with a child how has this? > >> thanks > >> Jens > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Thanks so much Dr and a doctor in Boston reviewed his records and told our gentic doctor that he has this. We go in fo a meeting Monday morning. Re: bad news > > Jens, > Sorry your doctors think your son has NF2. There are several of us on the > crew with kids who have NF2. You mentioned once before that your sons > information had gone to a retina specialist here in Houston. You didn't say > his name, but I wanted to mention our doctor here. Dr. is a > genetic retina specialist here in Houston who has a lot of experience seeing > people who have NF2 and giving the correct diagnosis. So, if your sons > records haven't gone to him he would be a good doctor to send them to. My > sons eye problem was diagnosed at six months due to his eye wandering out, > but they thought it was something else. Then when he was six we finally got > the right diagnoses of a retinal hamartoma and he has had MRIs and more > tumors have been found. He is now seven and doing fine even after having > had surgery to remove a tumor in his neck when he was six. Try not to worry > too much about the future for your son. The news is shocking and hard to > deal with at first, but it will get easier with time. You will learn to be > good at watching and waiting since that is what we all do a great deal of. > :-) Take care, > > > Well we just heard from retina doctor. She along with the > > pediactric opthomologist and Gentic doctor (who specializes in nf) Have > > changeed there tune. They thought he did not have it and know they are > 99% > > he does have nf2. I canont tell you how sad my husband and I are to hear > > this news. THink he is youngest with dx he will be 6 months. I guess we > > don't know what to except next. Anyone else with a child how has this? > > thanks > > Jens > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Thanks so much Dr and a doctor in Boston reviewed his records and told our gentic doctor that he has this. We go in fo a meeting Monday morning. Re: bad news > > Jens, > Sorry your doctors think your son has NF2. There are several of us on the > crew with kids who have NF2. You mentioned once before that your sons > information had gone to a retina specialist here in Houston. You didn't say > his name, but I wanted to mention our doctor here. Dr. is a > genetic retina specialist here in Houston who has a lot of experience seeing > people who have NF2 and giving the correct diagnosis. So, if your sons > records haven't gone to him he would be a good doctor to send them to. My > sons eye problem was diagnosed at six months due to his eye wandering out, > but they thought it was something else. Then when he was six we finally got > the right diagnoses of a retinal hamartoma and he has had MRIs and more > tumors have been found. He is now seven and doing fine even after having > had surgery to remove a tumor in his neck when he was six. Try not to worry > too much about the future for your son. The news is shocking and hard to > deal with at first, but it will get easier with time. You will learn to be > good at watching and waiting since that is what we all do a great deal of. > :-) Take care, > > > Well we just heard from retina doctor. She along with the > > pediactric opthomologist and Gentic doctor (who specializes in nf) Have > > changeed there tune. They thought he did not have it and know they are > 99% > > he does have nf2. I canont tell you how sad my husband and I are to hear > > this news. THink he is youngest with dx he will be 6 months. I guess we > > don't know what to except next. Anyone else with a child how has this? > > thanks > > Jens > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Jens, Let us know how the meeting goes. We'll be thinking about you and hoping all goes well. God Bless, > Thanks so much Dr and a doctor in Boston reviewed his records and told > our gentic doctor that he has this. We go in fo a meeting Monday morning. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Suzanne and Craig, I read your response to Jens and thought these people are on a similar journey to one we've had with Anne, now 28. Learning disabilities, ADHD, soft signs this and that, but her grades weren't so good at all and she needed to be in special programs and classes. She also was misdiagnosed and still they aren't sure of her diagnosis. My hat is off to you for the parenting challenges on top of caring for this rotten physical disorder. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 I am wondering if you two would mind if I print these emails and bring them with to doctor Monday? HE keeps saying that he doesn't think he will get anymore tumor until at the earlist 13 years old. We have to decide weather or not to have MRI. Any ideas of ? we should ask? We will also have DNA testing. Did anyone one else have this done? thanks JEns bad news Jens, We, too, have a similar story to share. Our son had vision problems at birth, but was given the wrong diagnosis. He had bilateral eye muscle surgery at four months to correct crossed eyes. At the age of three, retinal hamartomas were discovered. Still wrong diagnosis. Then at six years he had a tumor removed from the neck. A diagnosis of NF1 was given. The bilateral ANs were discovered when he was 11 years old and finally given the correct diagnosis of NF2. He has had radiation treatment on one AN and just under went surgery to remove a spinal tumor two months ago. He wears a hearing aide on his right ear (40% hearing loss) and wears glasses to corrected vision of 20/80. He has learning disabilities, ADHD and some unusual behaviors. It sounds like a lot of problems, but you don't notice it when you see our son. He is a happy camper. He attends regular school and received straight A's on his report card. He has tons of friends. They all respect him and they treat him like all the other guys. Up until surgery he was playing on a basketball league. He also has the greatest personality. We wouldn't trade him for a perfect child. Yes, it is sad and difficult when you first learn that your child has medical problems. Like said, don't worry about the future. Learn as much as you can and find support for your son and yourself. Our son started a school program at seven months due to visual impairments. A teacher came to our house once a week to teach us things we could do to help our child through his early development. Check with your doctors for such programs around your area. God bless. Suzanne and Craig Jens,My sons eye problem was diagnosed at six months due to his eye wandering out,but they thought it was something else. Then when he was six we finally gotthe right diagnoses of a retinal hamartoma and he has had MRIs and moretumors have been found. He is now seven and doing fine even after havinghad surgery to remove a tumor in his neck when he was six. Try not to worrytoo much about the future for your son. The news is shocking and hard todeal with at first, but it will get easier with time. You will learn to begood at watching and waiting since that is what we all do a great deal of.:-) Take care, > Well we just heard from retina doctor. She along with the> pediactric opthomologist and Gentic doctor (who specializes in nf) Have> changeed there tune. They thought he did not have it and know they are99%> he does have nf2. I canont tell you how sad my husband and I are to hear> this news. THink he is youngest with dx he will be 6 months. I guess we> don't know what to except next. Anyone else with a child how has this?> thanks> Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Jens, That's a hard one to answer. You could get many different answers from everyone here on the crew. Some people would rather watch and wait for symptoms. My son was referred for a brain MRI at six because his pediatric ophthalmologist said he thought he had a retinal hamartoma and that he could have more tumors. They found a tumor in his neck that needed to be removed since it was large and compressing and displacing his spinal cord. I am thankful now that he had his MRI at six and he now has them on a regular basis to monitor him. Tumors can show up and cause problems before the age of 13. It is really up to you to do the research and decide if you think it would be better if your son has MRIs done before 13. Do what you feel is right to you because doctors aren't always right. Our family had the NF2 blood testing done. My son tested positive, but the rest of us tested negative. As for printing the e-mail fine with me just black out the name and address information. Good luck at your appointment Monday. I am wondering if you two would mind if I print these emails and bring them with to doctor Monday? HE keeps saying that he doesn't think he will get anymore tumor until at the earlist 13 years old. We have to decide weather or not to have MRI. Any ideas of ? we should ask? We will also have DNA testing. Did anyone one else have this done? thanks JEns Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Jens, That's a hard one to answer. You could get many different answers from everyone here on the crew. Some people would rather watch and wait for symptoms. My son was referred for a brain MRI at six because his pediatric ophthalmologist said he thought he had a retinal hamartoma and that he could have more tumors. They found a tumor in his neck that needed to be removed since it was large and compressing and displacing his spinal cord. I am thankful now that he had his MRI at six and he now has them on a regular basis to monitor him. Tumors can show up and cause problems before the age of 13. It is really up to you to do the research and decide if you think it would be better if your son has MRIs done before 13. Do what you feel is right to you because doctors aren't always right. Our family had the NF2 blood testing done. My son tested positive, but the rest of us tested negative. As for printing the e-mail fine with me just black out the name and address information. Good luck at your appointment Monday. I am wondering if you two would mind if I print these emails and bring them with to doctor Monday? HE keeps saying that he doesn't think he will get anymore tumor until at the earlist 13 years old. We have to decide weather or not to have MRI. Any ideas of ? we should ask? We will also have DNA testing. Did anyone one else have this done? thanks JEns Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, Yes, by all means take our e-mail response to you doctor. Our son had a genetic test done when he was three years old, but at that time he was not thought to have NF2 and thus did not test for it. NF2 was diagnosed at eleven years old when bilateral ANs were discovered on the MRI. (He had an MRI when he was six years old, but the radiologist overlooked ANs at that time). Our son's care is being followed by the neurologist, a retinal specialist, ophthalmologist, ENT and neruo-surgeon. We would recommend having an MRI as a baseline. Often we have found doctors to be wrong. Get second opinions, do research and go with your gut feeling. Suzanne and Craig Quote Link to comment Share on other sites More sharing options...
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