Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 Jeanie, You just put a cotton ball into his diaper and collect the urine that way. It's easy to do whenever you think something is just not right. You may find a pattern or you may not, but please be sure to check when he is sick and not eating well. Then there is a whole other protocol to follow. Max, my RSS child, is 17. He has a more complicated case, but he is just a wonderful kid. He's a junior in high school now. Currently his project is developing a website for horror movies. He and a teacher at school formed a club and they are working away with some other kids. He is also into journalism, but is focusing on being the school newspaper reviewer for old and new horror movies. I can't watch them with him. I get too scared! It's hard to know where to begin with Max. He seems to have a little bit or a lot of everything. He's had the " triple procedure " to control reflux and delayed gastric emptying. He does have learning disabilities and anxiety. He's had OT, ST, PT for many years, but no longer needs those services. His adaptive PE teacher makes him workout in the weight room 4 days a week, so he is building up some good muscles. Max also has Tourette Syndrome. He has had facial tics and humming in the past and most recently faced chronic hiccups, caused by severe reflux but then moving into tics. They are finally under control with Risperdal. Probably the most difficulty we have had with Max has been with his entire GI system. He was on a feeding pump since 2 months old until he was a teen. First it was for failure to thrive, then no appetite and then for nighttime hypoglycemia. A stomach virus is an automatic hospital admission. He was able to have the g-j tube pulled last spring. He had to go for a year without using it in order to have that done. He was so happy! That sums up Max, just barely. He has come such a long, long way. People on this listserve who have been here awhile have witnessed his growth and development, trials and tribulations. It's taken a lot of work to get him to where he is today and we are so proud of him. OH! I forgot the most important thing - he is taller than I am! He's been on gh since just before he turned 3. He is now approx. 5'5 " , depending on who measures him. Dr. H. originally predicted he would make it to 5'6 " . Looks like she was right. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 Jeanie - Jodi knows her stuff. She helped me through Ian's recent hospital stay that lasted longer than it probably needed to because I did not understand things as well as I do now. She said it perfectly in that it's not meant to scare you - just inform you. Ian just now at 2.5 is showing hypoglycemia issues - it definately happened overnight. Thanks Jodi for such a great explanation. - H > > Jeanie, > > Do to a lot of stress here at home, I have not been able to reply to > your story as I wish I could have. I see that others have and that > you have found someone else with a child with RSS. That is > wonderful. > > I did want to go into more detail about the hypoglycemia issue, > however, because so many are not aware of it and it can pop up at > any time, as H found out with Ian seemingly overnight. And as a > diabetic yourself, you will probably be aware of some of the things > I'm going to tell you. > > Whenever you see that Brockton is crankier than usual, if he is not > eating well, or from time to time in the morning after he wakes up > from sleeping all night, check his ketones. Do you know how to do > that with ketosticks? Many of our kids show signs of hypoglycemia > by first spilling ketones in their urine. That will happen before > blood sugar drops in most kids. > > You need to be especially aware of this if he is sick, especially > with a stomach virus. If he cannot keep food down, there is a > specific protocol to follow. Just IV rehydration is not enough. Most > doctors will tell you to take him to the ER for a few hours to > rehydrate him, but that is wrong and it usually requires a 4 day > hospital stay - or longer. For my son, it is at least 5 days, > sometimes stretching out to a week or even longer in the past. (I > hope that at 17 he is able to start eating sooner than he has in the > past under these circumstances.) > > I am NOT trying to scare you, but to inform you. The more you know > in advance, the better prepared you will be. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 WOW Jodi! You have been through alot! You must be one wonderfully strong woman! I am so glad that you are on here to share your experiences with all of us! I can't believe how tall Max is! That is wonderful! That is definately some inspiration. Your whole story and how you've overcome everything you've been dealt is SO inspiring. I'm happy for Max that he has found something that he loves to do ... like you I'm too scared to watch those kind of movies. Thank you for sharing. Dawna > > Jeanie, > > You just put a cotton ball into his diaper and collect the urine > that way. It's easy to do whenever you think something is just not > right. You may find a pattern or you may not, but please be sure to > check when he is sick and not eating well. Then there is a whole > other protocol to follow. > > Max, my RSS child, is 17. He has a more complicated case, but he is > just a wonderful kid. He's a junior in high school now. Currently > his project is developing a website for horror movies. He and a > teacher at school formed a club and they are working away with some > other kids. He is also into journalism, but is focusing on being > the school newspaper reviewer for old and new horror movies. I > can't watch them with him. I get too scared! > > It's hard to know where to begin with Max. He seems to have a > little bit or a lot of everything. He's had the " triple procedure " > to control reflux and delayed gastric emptying. He does have > learning disabilities and anxiety. He's had OT, ST, PT for many > years, but no longer needs those services. His adaptive PE teacher > makes him workout in the weight room 4 days a week, so he is > building up some good muscles. > > Max also has Tourette Syndrome. He has had facial tics and humming > in the past and most recently faced chronic hiccups, caused by > severe reflux but then moving into tics. They are finally under > control with Risperdal. > > Probably the most difficulty we have had with Max has been with his > entire GI system. He was on a feeding pump since 2 months old until > he was a teen. First it was for failure to thrive, then no appetite > and then for nighttime hypoglycemia. A stomach virus is an > automatic hospital admission. He was able to have the g-j tube > pulled last spring. He had to go for a year without using it in > order to have that done. He was so happy! > > That sums up Max, just barely. He has come such a long, long way. > People on this listserve who have been here awhile have witnessed > his growth and development, trials and tribulations. It's taken a > lot of work to get him to where he is today and we are so proud of > him. OH! I forgot the most important thing - he is taller than I > am! He's been on gh since just before he turned 3. He is now > approx. 5'5 " , depending on who measures him. Dr. H. originally > predicted he would make it to 5'6 " . Looks like she was right. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 Oh. I didn't mention in my reply to Jodi that I LOVE SCARY MOVIES! Watching one as we speak! LOL Dawna wrote: WOW Jodi! You have been through alot! You must be one wonderfully strong woman! I am so glad that you are on here to share your experiences with all of us! I can't believe how tall Max is! That is wonderful! That is definately some inspiration. Your whole story and how you've overcome everything you've been dealt is SO inspiring. I'm happy for Max that he has found something that he loves to do ... like you I'm too scared to watch those kind of movies. Thank you for sharing. Dawna > > Jeanie, > > You just put a cotton ball into his diaper and collect the urine > that way. It's easy to do whenever you think something is just not > right. You may find a pattern or you may not, but please be sure to > check when he is sick and not eating well. Then there is a whole > other protocol to follow. > > Max, my RSS child, is 17. He has a more complicated case, but he is > just a wonderful kid. He's a junior in high school now. Currently > his project is developing a website for horror movies. He and a > teacher at school formed a club and they are working away with some > other kids. He is also into journalism, but is focusing on being > the school newspaper reviewer for old and new horror movies. I > can't watch them with him. I get too scared! > > It's hard to know where to begin with Max. He seems to have a > little bit or a lot of everything. He's had the " triple procedure " > to control reflux and delayed gastric emptying. He does have > learning disabilities and anxiety. He's had OT, ST, PT for many > years, but no longer needs those services. His adaptive PE teacher > makes him workout in the weight room 4 days a week, so he is > building up some good muscles. > > Max also has Tourette Syndrome. He has had facial tics and humming > in the past and most recently faced chronic hiccups, caused by > severe reflux but then moving into tics. They are finally under > control with Risperdal. > > Probably the most difficulty we have had with Max has been with his > entire GI system. He was on a feeding pump since 2 months old until > he was a teen. First it was for failure to thrive, then no appetite > and then for nighttime hypoglycemia. A stomach virus is an > automatic hospital admission. He was able to have the g-j tube > pulled last spring. He had to go for a year without using it in > order to have that done. He was so happy! > > That sums up Max, just barely. He has come such a long, long way. > People on this listserve who have been here awhile have witnessed > his growth and development, trials and tribulations. It's taken a > lot of work to get him to where he is today and we are so proud of > him. OH! I forgot the most important thing - he is taller than I > am! He's been on gh since just before he turned 3. He is now > approx. 5'5 " , depending on who measures him. Dr. H. originally > predicted he would make it to 5'6 " . Looks like she was right. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
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