Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 My parents and I took my children for their blood draw this morning. Oh it was horrible. I had to hold them while they had it done and they cried and screamed I felt like a horrible mommy and then when they were doing my four year old they got the needle in but then they could not find the vein. It was awful. Now they are with grandpa and grandma getting spoiled for the rest of the day. LOL Then their daddy is going to take them to the fair. I hope they will not hate me when they come home tomorrow. My mother taught them how to say I love you in sign language. That was pretty neat to see first thing in the morning. Well all, take care. Love, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 My parents and I took my children for their blood draw this morning. Oh it was horrible. I had to hold them while they had it done and they cried and screamed I felt like a horrible mommy and then when they were doing my four year old they got the needle in but then they could not find the vein. It was awful. Now they are with grandpa and grandma getting spoiled for the rest of the day. LOL Then their daddy is going to take them to the fair. I hope they will not hate me when they come home tomorrow. My mother taught them how to say I love you in sign language. That was pretty neat to see first thing in the morning. Well all, take care. Love, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Good luck and best wishes Bonnie!! Dana bonniestormcloud@... wrote:I am a happy camper. My liver biopsy results came back as level 1 liver damage with minimal cirrhosis. And my viral load is really low now. I got on the list for treatment, peg-intron and rebetal.(spelling?) I have my scripts. I should be able to start treatment in about a month or sooner. He said my prognosis is good. He said after a year of weekly treatment it should irradicate the virus. He also said there is a 1% chance that it will come back. Tomorrow morning we get my childrens blood tested. So even if i am a sleepy head at least I have good news. I am also part of a program where a nurse from the drug manufacturer will gall me to get progress reports and monitor my side effects. They told me to drink 84oz of water a day plus another 64oz by the time treatment starts. I will float away. LOL They also stressed the protein. Ther Dr said I had no restrictions other then alcohol and my stomach problems are probably due to GERD. So my anxiety has somewhat abated. Luv you all thanks for the continued support and info. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Good luck and best wishes Bonnie!! Dana bonniestormcloud@... wrote:I am a happy camper. My liver biopsy results came back as level 1 liver damage with minimal cirrhosis. And my viral load is really low now. I got on the list for treatment, peg-intron and rebetal.(spelling?) I have my scripts. I should be able to start treatment in about a month or sooner. He said my prognosis is good. He said after a year of weekly treatment it should irradicate the virus. He also said there is a 1% chance that it will come back. Tomorrow morning we get my childrens blood tested. So even if i am a sleepy head at least I have good news. I am also part of a program where a nurse from the drug manufacturer will gall me to get progress reports and monitor my side effects. They told me to drink 84oz of water a day plus another 64oz by the time treatment starts. I will float away. LOL They also stressed the protein. Ther Dr said I had no restrictions other then alcohol and my stomach problems are probably due to GERD. So my anxiety has somewhat abated. Luv you all thanks for the continued support and info. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 What is your genotype??? You cannot have stage 1 liver disease and cirrhosis at the same time. Stage 1 liver damage means NO DAMAGE to your liver. Get a copy of that biopsy!! Cirrhosis is STAGE 4. IF you are actually in stage 1 liver damage, I personally would not do this treatment unless you are a genotype 2 or 3. Genotype 1 does not respond well enough to warrant doing treatment with such a small amount of liver damage. This is a very slow moving disease and if you can pinpoint the time when you got the virus, it will take up to 25-30 yrs to move you into actual cirrhosis, IF you get that far. Only a very small number of people actually get to cirrhosis. LeighAnn http://www.geocities.com/1Leighann http://www.geocities.com/hepvet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 What is your genotype??? You cannot have stage 1 liver disease and cirrhosis at the same time. Stage 1 liver damage means NO DAMAGE to your liver. Get a copy of that biopsy!! Cirrhosis is STAGE 4. IF you are actually in stage 1 liver damage, I personally would not do this treatment unless you are a genotype 2 or 3. Genotype 1 does not respond well enough to warrant doing treatment with such a small amount of liver damage. This is a very slow moving disease and if you can pinpoint the time when you got the virus, it will take up to 25-30 yrs to move you into actual cirrhosis, IF you get that far. Only a very small number of people actually get to cirrhosis. LeighAnn http://www.geocities.com/1Leighann http://www.geocities.com/hepvet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I have a feeling that I contracted it about 3 years ago. But I could be wrong, anyway I have geno type 1b. The Dr says treatment should wipe it out. He said that I am young and that I should just treat now and not wait until it gets worse. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I have a feeling that I contracted it about 3 years ago. But I could be wrong, anyway I have geno type 1b. The Dr says treatment should wipe it out. He said that I am young and that I should just treat now and not wait until it gets worse. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Bonnie, Don't worry, they won't hate you! They will just hate Doctors!! Tehee! My daughter got a book on sign language and learned some. That was neat. Little kids are funny. Don't worry. I had my daughter tested when I was diagnosed. She came up negative! Dana bonniestormcloud@... wrote:My parents and I took my children for their blood draw this morning. Oh it was horrible. I had to hold them while they had it done and they cried and screamed I felt like a horrible mommy and then when they were doing my four year old they got the needle in but then they could not find the vein. It was awful. Now they are with grandpa and grandma getting spoiled for the rest of the day. LOL Then their daddy is going to take them to the fair. I hope they will not hate me when they come home tomorrow. My mother taught them how to say I love you in sign language. That was pretty neat to see first thing in the morning. Well all, take care. Love, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Bonnie, Don't worry, they won't hate you! They will just hate Doctors!! Tehee! My daughter got a book on sign language and learned some. That was neat. Little kids are funny. Don't worry. I had my daughter tested when I was diagnosed. She came up negative! Dana bonniestormcloud@... wrote:My parents and I took my children for their blood draw this morning. Oh it was horrible. I had to hold them while they had it done and they cried and screamed I felt like a horrible mommy and then when they were doing my four year old they got the needle in but then they could not find the vein. It was awful. Now they are with grandpa and grandma getting spoiled for the rest of the day. LOL Then their daddy is going to take them to the fair. I hope they will not hate me when they come home tomorrow. My mother taught them how to say I love you in sign language. That was pretty neat to see first thing in the morning. Well all, take care. Love, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Hey, We have a similar situation with Chloe, having had hearing loss in only one ear. She used a hearing aid in that ear and had great results. Without it, she could not firgure out where a sound was coming from, like if I was calling her, she just turned circles looking for me. Also, she would have a hard time in some listening environments. The research about aiding a unilateral (one-sided) hearing loss is inconsistent, and many audiologists have been taught that it is not worth it. Our surgeon felt that being in the early elementary years, she needed to have as much hearing as possible. We found it to be well worth doing.  She also has no ossicles, but is on her third titanium rebuild. The others worked wel until they were pushed out by new cholesteatoma. We are hopeful that this one will work, but glad to have the aid to fall back on. An FM system might be helpful at school, as well. On Wed, Aug 18, 2010 at 12:46 PM, sarah jones <sarah_l_jones26@...> wrote: Hi all,  Been some time since I asked questions/ reported on Hollie.  Operation to remove the CToma was back in May of this year, all stitches dissolved and packaging removed two and half months ago. Ear has stayed dry and amazingly Hollie is telling us she can hear from that ear!!  We went to see her consultant today (Mr Man Wan Yung, Ipswich UK) who checked her ear, scar and performed a hearing test. Her ear is healing well, infact his words to us were that the ear looked fantastic, the ear is safe to re-start swimming lessons and best of all she does have some hearing in the left ear...A surprise to the consultant and us as the damage caused by the Ctoma was extensive, the ear drum removed (only found this out today) and all three oscilies removed (well already destroyed by Ctoma when they operated), the hearing isnt great but some hearing is better than none?? Her right ear has normal hearing and the problem left ear is able to hear high frequency sounds but not low tone. The consultant is sure the hearing she has means she wont suffer with her education at school or speech. I still worry though.  We have an appointment to go back in 3 months, and then from then on he will decide the next appointment, probably 6 months from there and then yearly. My concern is that there will not be a second look surgery (consultant believes this old fashioned and unnecssary to put Hollie under again), how will we know if there is any recurrence? What are the signs if any? When Hollie first got ill she had loss of hearing from about September 09, ear infection started December 09, grommets inserted February 10 (infection still present), CToma removal May 10 (infection again, lasted 10 days). These symptoms alerted us to a problem, our normal doctor just said it was glue ear, I never believed that diagnosis so got her privately treated. There was smell, lots of discharge, excurciating pain, perforated ear drum...Are these the symptons to alert of recurrence? I know all symptons are different but having done plenty of research on this topic I do wonder why there wont be a second look surgery and what the chances are of recurrence.  I do know one thing for sure, I have total confidence in her consultant. Very passionate about his work, only practices in middle ear and cholesteatoma and explains everything thoroughly by pictures and words. He is top in the UK for this kind of thing so should I be worried by the way he wants to proceed? Is there anyone else out there that has had this surgey but not had it followed up by a second look surgery?  Hollie is doing very well now, loving school holidays and looking forward to starting Reception class in September. Back to dancing, even looking forward to her first performance on the big stage in September.  I will keep you all posted and fingers crossed this early good news carries on for the years to come.  :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 Hi, My son has unilateral hearing and we have not done a hearing aid at this point, but I did buy him a amplification system for his classroom and it seems to help. It is called the Redcat system by Lightspeed technology. It is a speaker that is mounted on the wall and the teacher wears a small mic. The sound is infared (spelling) and it lets the teachers voice cut thru the background noise. This is were my son has trouble. I also am asking them to sit him right in front of the teacher. I just ordered 2 more of these systems as he is moving class to class in 5th grade. Best of luck to you, From: <wadvani@...>Subject: Re: Update cholesteatoma Date: Thursday, August 19, 2010, 12:33 AM Hi,My son who is 8, also has a hearing loss in one ear It is a mild to moderate loss. He uses a hearing aid every day and an FM system for school. He notices the differences with it and he says it makes a huge difference at school. Kepp an open mind about the hearing aid and FM, and just take notice of the situations on when she can't hear well. Jay can't hear in background noise and finds the cassroo unbearable without the FM.His surgeon was adamant that he needed a hearing aid and FM, so I took his advice. However, unilateral loss is not well understood and opinions differ greatly in the treatment and management of it.Good luck, > > >> >> > Hi all,> >> > Been some time since I asked questions/ reported on Hollie.> >> > Operation to remove the CToma was back in May of this year, all stitches> > dissolved and packaging removed two and half months ago. Ear has stayed dry> > and amazingly Hollie is telling us she can hear from that ear!!> >> > We went to see her consultant today (Mr Man Wan Yung, Ipswich UK) who> > checked her ear, scar and performed a hearing test. Her ear is healing well,> > infact his words to us were that the ear looked fantastic, the ear is safe> > to re-start swimming lessons and best of all she does have some hearing in> > the left ear...A surprise to the consultant and us as the damage caused by> > the Ctoma was extensive, the ear drum removed (only found this out today)> > and all three oscilies removed (well already destroyed by Ctoma when they> > operated), the hearing isnt great but some hearing is better than none?? Her> > right ear has normal hearing and the problem left ear is able to hear high> > frequency sounds but not low tone. The consultant is sure the hearing she> > has means she wont suffer with her education at school or speech. I still> > worry though.> >> > We have an appointment to go back in 3 months, and then from then on he> > will decide the next appointment, probably 6 months from there and then> > yearly. My concern is that there will not be a second look surgery> > (consultant believes this old fashioned and unnecssary to put Hollie under> > again), how will we know if there is any recurrence? What are the signs if> > any? When Hollie first got ill she had loss of hearing from about September> > 09, ear infection started December 09, grommets inserted February 10> > (infection still present), CToma removal May 10 (infection again, lasted 10> > days). These symptoms alerted us to a problem, our normal doctor just said> > it was glue ear, I never believed that diagnosis so got her privately> > treated. There was smell, lots of discharge, excurciating pain, perforated> > ear drum...Are these the symptons to alert of recurrence? I know> > all symptons are different but having done plenty of research on this topic> > I do wonder why there wont be a second look surgery and what the chances are> > of recurrence.> >> > I do know one thing for sure, I have total confidence in her consultant.> > Very passionate about his work, only practices in middle ear and> > cholesteatoma and explains everything thoroughly by pictures and words. He> > is top in the UK for this kind of thing so should I be worried by the way he> > wants to proceed? Is there anyone else out there that has had this surgey> > but not had it followed up by a second look surgery?> >> > Hollie is doing very well now, loving school holidays and looking forward> > to starting Reception class in September. Back to dancing, even looking> > forward to her first performance on the big stage in September.> >> > I will keep you all posted and fingers crossed this early good news carries> > on for the years to come.> >> > :-)> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 My son Wyatt uses a hearing aid for his unilateral R ear loss due to c-toma removal in Feb 09. It has been amazing the difference for him!! He had 6 surgeries after the initial removal for PE tube replacement, and his loss is moderate-severe, so the hearing aid was a definite necessity. My question for is ..why are you purchasing FM systems for him to use in school? You should be requesting a 504 plan for your son.. the school should either have or purchase the FM systems he needs in the classroom!! Ask who at your school is the 504 plan coordinator. They have to have one!!! Good luck! Diane > > > > > > > > > > > Hi all, > > > > > > Been some time since I asked questions/ reported on Hollie. > > > > > > Operation to remove the CToma was back in May of this year, all stitches > > > dissolved and packaging removed two and half months ago. Ear has stayed dry > > > and amazingly Hollie is telling us she can hear from that ear!! > > > > > > We went to see her consultant today (Mr Man Wan Yung, Ipswich UK) who > > > checked her ear, scar and performed a hearing test. Her ear is healing well, > > > infact his words to us were that the ear looked fantastic, the ear is safe > > > to re-start swimming lessons and best of all she does have some hearing in > > > the left ear...A surprise to the consultant and us as the damage caused by > > > the Ctoma was extensive, the ear drum removed (only found this out today) > > > and all three oscilies removed (well already destroyed by Ctoma when they > > > operated), the hearing isnt great but some hearing is better than none?? Her > > > right ear has normal hearing and the problem left ear is able to hear high > > > frequency sounds but not low tone. The consultant is sure the hearing she > > > has means she wont suffer with her education at school or speech. I still > > > worry though. > > > > > > We have an appointment to go back in 3 months, and then from then on he > > > will decide the next appointment, probably 6 months from there and then > > > yearly. My concern is that there will not be a second look surgery > > > (consultant believes this old fashioned and unnecssary to put Hollie under > > > again), how will we know if there is any recurrence? What are the signs if > > > any? When Hollie first got ill she had loss of hearing from about September > > > 09, ear infection started December 09, grommets inserted February 10 > > > (infection still present), CToma removal May 10 (infection again, lasted 10 > > > days). These symptoms alerted us to a problem, our normal doctor just said > > > it was glue ear, I never believed that diagnosis so got her privately > > > treated. There was smell, lots of discharge, excurciating pain, perforated > > > ear drum...Are these the symptons to alert of recurrence? I know > > > all symptons are different but having done plenty of research on this topic > > > I do wonder why there wont be a second look surgery and what the chances are > > > of recurrence. > > > > > > I do know one thing for sure, I have total confidence in her consultant. > > > Very passionate about his work, only practices in middle ear and > > > cholesteatoma and explains everything thoroughly by pictures and words. He > > > is top in the UK for this kind of thing so should I be worried by the way he > > > wants to proceed? Is there anyone else out there that has had this surgey > > > but not had it followed up by a second look surgery? > > > > > > Hollie is doing very well now, loving school holidays and looking forward > > > to starting Reception class in September. Back to dancing, even looking > > > forward to her first performance on the big stage in September. > > > > > > I will keep you all posted and fingers crossed this early good news carries > > > on for the years to come. > > > > > > :-) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Yes I am glad to but it for him. His Dr. said he is not a condidate for a HA because of the hole in his eardrum. Does your son have any problems with kids teasing him? My son is in 5th grade and I worry about kids even teasing him about the speaker system at his new school. From: diane <diane_s31@...>Subject: Re: Update cholesteatoma Date: Thursday, August 19, 2010, 11:42 PM Well, it's good then that you can purchase the system!! I definitely recommend the hearing aid if your doctor or audiologist recommends it. It has made a huge difference for my son educationally and the color choices and ear mold options are so kid friendly... all his friends love to see what he will get next!! Good luck!! Diane> > > > > > >> > > >> > > > Hi all,> > > >> > > > Been some time since I asked questions/ reported on Hollie.> > > >> > > > Operation to remove the CToma was back in May of this year, all stitches> > > > dissolved and packaging removed two and half months ago. Ear has stayed > dry> > > > and amazingly Hollie is telling us she can hear from that ear!!> > > >> > > > We went to see her consultant today (Mr Man Wan Yung, Ipswich UK) who> > > > checked her ear, scar and performed a hearing test. Her ear is healing > >well,> > > > infact his words to us were that the ear looked fantastic, the ear is safe> > > > to re-start swimming lessons and best of all she does have some hearing in> > > > the left ear...A surprise to the consultant and us as the damage caused by> > > > the Ctoma was extensive, the ear drum removed (only found this out today)> > > > and all three oscilies removed (well already destroyed by Ctoma when they> > > > operated), the hearing isnt great but some hearing is better than none?? > >Her> > > > right ear has normal hearing and the problem left ear is able to hear high> > > > frequency sounds but not low tone. The consultant is sure the hearing she> > > > has means she wont suffer with her education at school or speech. I still> > > > worry though.> > > >> > > > We have an appointment to go back in 3 months, and then from then on he> > > > will decide the next appointment, probably 6 months from there and then> > > > yearly. My concern is that there will not be a second look surgery> > > > (consultant believes this old fashioned and unnecssary to put Hollie under> > > > again), how will we know if there is any recurrence? What are the signs if> > > > any? When Hollie first got ill she had loss of hearing from about > September> > > > 09, ear infection started December 09, grommets inserted February 10> > > > (infection still present), CToma removal May 10 (infection again, lasted > 10> > > > days). These symptoms alerted us to a problem, our normal doctor just said> > > > it was glue ear, I never believed that diagnosis so got her privately> > > > treated. There was smell, lots of discharge, excurciating pain, perforated> > > > ear drum...Are these the symptons to alert of recurrence? I know> > > > all symptons are different but having done plenty of research on this > topic> > > > I do wonder why there wont be a second look surgery and what the chances > >are> > > > of recurrence.> > > >> > > > I do know one thing for sure, I have total confidence in her consultant.> > > > Very passionate about his work, only practices in middle ear and> > > > cholesteatoma and explains everything thoroughly by pictures and words. He> > > > is top in the UK for this kind of thing so should I be worried by the way > >he> > > > wants to proceed? Is there anyone else out there that has had this surgey> > > > but not had it followed up by a second look surgery?> > > >> > > > Hollie is doing very well now, loving school holidays and looking forward> > > > to starting Reception class in September. Back to dancing, even looking> > > > forward to her first performance on the big stage in September.> > > >> > > > I will keep you all posted and fingers crossed this early good news > carries> > > > on for the years to come.> > > >> > > > :-)> > > >> > > >> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 I have four children with this problem, my son who is 14 is about to go in for his 7th surgery, my youngest daughter who is 8, has had three surgerys, her condition is getting worse and has been told that she will need reconstruction surgery at 12, my middle daughter is 11 and is only mildly affected at present keeping fingers crossed it stays that way. I have no problems with my ears as do none of my family, but their father had glue ear but no other problems. Its a horrible disease which is misunderstood especially the impact on young childrens lives. Jayne > > I have had 8 cholesteatoma surgeries, four in each ear, and I've been told it was congenital. However, neither of my two sisters has had any issues, and honestly, in my 20 years of experience with this disease, have not heard of siblings with it. Has anyone else who is part of this group? > > > > > ________________________________ > IDQ Companies Quote Link to comment Share on other sites More sharing options...
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