Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Rita, Sorry to hear that you have RP but glad to hear that you found a doctor that would diagnose it. Take care and ask all the questions that you like! Rita the reason that the e-mails are like that is because we had a bad virus going through the email. It is gone now but they have not enable attachments yet. Maybe soon. The stopped all attachments because that is how the virus was spread. Hope that helps. Lots of Love Glenda Lucy, This is Rita in Montgomery AL. All of my e-mails from the group have this at the end. Alot of the e-mails I cannot read because they are not complete. I was diagnosed on Tuesday with RP, but I heard from my blood tests today and they were normal. So, that is some good news. Enjoy the group. I know i will have alot of questions in the future. Thanks, Rita fm AL --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.256 / Virus Database: 129 - Release Date: 5/31/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Rita, Glad to hear that you are feeling well. It is always good when the RP takes a rest! Sorry to hear that you are having stomach cramps. What meds are you taking? Lots of Love Glenda Not flaring this week. As a matter of fact this has been the best week I have had in several months. I don't know which medication is giving me stomach cramps but I am calling my doctor today. Not so bad I cannot handle it. Just annoying. Hope this finds you both doing great. Let me hear from you and God Bless. ===== Have a great day! Rita --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.256 / Virus Database: 129 - Release Date: 5/31/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 , Before the age of 3 Josh had an individual speech therapist 2x/week. When he turned 3 he began pre-school and we decided since they had a speech therapist at the school, we would try that. From the age of 1 to 3, I honestly didn't notice much of a difference with Josh. Since he's started school, he has made some significant improvements, but not enough. He just switched schools because of boundary line changes and I'm hoping that the new speech therapist will make a difference. I actually haven't even met with her yet. I've also contemplated putting him back in private speech sessions, but working around school hours and his naps, it would be almost impossible. We have met with Josh's endo on 3 different occasions over the past 3 years. He has a more wait and see approach. This last Spring we met with him again and he wasn't sure if GHT would benefit Josh or not, but he wasn't opposed to us trying it. We have delayed our decision regarding GHT, but have recently decided that we'd rather try GHT than " wait and see " . Do you have any other suggestions regarding speech therapy? Rita Josh's mom > > Hi Everyone. > > > > I first started on this support list a couple of years ago when > > there was the possibility of my son having RSS. Last year, the > > geneticist tested him for chromosome 7 abnormality and found that > he > > tested normally. Therefore, not giving a dignosis of RSS. We > were > > frustrated and tired and decided to take some time off from the > > whole " what does he have " question. Now that some time has gone > by > > I thought I'd look into RSS again, because I just have that > feeling > > that he may have it... Josh is now 4 1/2 and he is still below the > > 0% in height and weight. The only characteristics that he has > > associated with RSS is short stature, developmental delays, bone- > age > > delay and a small triangular face. He does not have an incurved > 5th > > finger. The reason for this message is to see if other parents > with > > a child formally diagnosed with RSS have discovered that > development > > delays (especially speech)have persisted after the age of 4 or > > more? > > Thanks for listening. > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 Rita With your speach therapy have they tried using sign laugage even if he does talk. Tori started with sign there is a book called " baby sign " . And we also came up with our own and just would lable it. She then just took off talking but still uses her sign if she REALLY wants something. She is good at signing PLEASE and THANK-YOU and GOOD NIGHT. She also has animal signs, popcorn,more. Just a thought. Maloy Re: Rita , Before the age of 3 Josh had an individual speech therapist 2x/week. When he turned 3 he began pre-school and we decided since they had a speech therapist at the school, we would try that. From the age of 1 to 3, I honestly didn't notice much of a difference with Josh. Since he's started school, he has made some significant improvements, but not enough. He just switched schools because of boundary line changes and I'm hoping that the new speech therapist will make a difference. I actually haven't even met with her yet. I've also contemplated putting him back in private speech sessions, but working around school hours and his naps, it would be almost impossible. We have met with Josh's endo on 3 different occasions over the past 3 years. He has a more wait and see approach. This last Spring we met with him again and he wasn't sure if GHT would benefit Josh or not, but he wasn't opposed to us trying it. We have delayed our decision regarding GHT, but have recently decided that we'd rather try GHT than " wait and see " . Do you have any other suggestions regarding speech therapy? Rita Josh's mom > > Hi Everyone. > > > > I first started on this support list a couple of years ago when > > there was the possibility of my son having RSS. Last year, the > > geneticist tested him for chromosome 7 abnormality and found that > he > > tested normally. Therefore, not giving a dignosis of RSS. We > were > > frustrated and tired and decided to take some time off from the > > whole " what does he have " question. Now that some time has gone > by > > I thought I'd look into RSS again, because I just have that > feeling > > that he may have it... Josh is now 4 1/2 and he is still below the > > 0% in height and weight. The only characteristics that he has > > associated with RSS is short stature, developmental delays, bone- > age > > delay and a small triangular face. He does not have an incurved > 5th > > finger. The reason for this message is to see if other parents > with > > a child formally diagnosed with RSS have discovered that > development > > delays (especially speech)have persisted after the age of 4 or > > more? > > Thanks for listening. > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 Maloy Yes, we have tried sign language and Josh does quite well with it too. Since he's been able to communicate a bit, the signing has been happening less. He is able to communicate what he wants with his teachers and with us, family and friends; but he still has such a long way to go. At this point he is only speaking with no more than 3 word phrases and is quite nasily, which makes it difficult to understand him. My husband and I work with him everyday at home at least two 30 min. intervals; just trying to incorporate it in with play, etc. Thanks for the advice. Rita Josh's mom (4 1/2yrs) > > > Hi Everyone. > > > > > > I first started on this support list a couple of years ago when > > > there was the possibility of my son having RSS. Last year, the > > > geneticist tested him for chromosome 7 abnormality and found > that > > he > > > tested normally. Therefore, not giving a dignosis of RSS. We > > were > > > frustrated and tired and decided to take some time off from the > > > whole " what does he have " question. Now that some time has gone > > by > > > I thought I'd look into RSS again, because I just have that > > feeling > > > that he may have it... Josh is now 4 1/2 and he is still below > the > > > 0% in height and weight. The only characteristics that he has > > > associated with RSS is short stature, developmental delays, bone- > > age > > > delay and a small triangular face. He does not have an incurved > > 5th > > > finger. The reason for this message is to see if other parents > > with > > > a child formally diagnosed with RSS have discovered that > > development > > > delays (especially speech)have persisted after the age of 4 or > > > more? > > > Thanks for listening. > > > Rita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 Maloy Yes, we have tried sign language and Josh does quite well with it too. Since he's been able to communicate a bit, the signing has been happening less. He is able to communicate what he wants with his teachers and with us, family and friends; but he still has such a long way to go. At this point he is only speaking with no more than 3 word phrases and is quite nasily, which makes it difficult to understand him. My husband and I work with him everyday at home at least two 30 min. intervals; just trying to incorporate it in with play, etc. Thanks for the advice. Rita Josh's mom (4 1/2yrs) > > > Hi Everyone. > > > > > > I first started on this support list a couple of years ago when > > > there was the possibility of my son having RSS. Last year, the > > > geneticist tested him for chromosome 7 abnormality and found > that > > he > > > tested normally. Therefore, not giving a dignosis of RSS. We > > were > > > frustrated and tired and decided to take some time off from the > > > whole " what does he have " question. Now that some time has gone > > by > > > I thought I'd look into RSS again, because I just have that > > feeling > > > that he may have it... Josh is now 4 1/2 and he is still below > the > > > 0% in height and weight. The only characteristics that he has > > > associated with RSS is short stature, developmental delays, bone- > > age > > > delay and a small triangular face. He does not have an incurved > > 5th > > > finger. The reason for this message is to see if other parents > > with > > > a child formally diagnosed with RSS have discovered that > > development > > > delays (especially speech)have persisted after the age of 4 or > > > more? > > > Thanks for listening. > > > Rita > > > Quote Link to comment Share on other sites More sharing options...
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