Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 In a message dated 3/27/02 4:27:20 PM Central Standard Time, mashawnag@... writes: > > Karyn, I would check out any meds david is on, if any, > some cause urninary retention, and or kidney problems. > I know my nathan has always been a urine retainer, > still is but doesnt try real hard to go when he goes, > sometimes kinda trembles,lol, probably cause it feels > sooo good to releive all that,lol, we have a family > joke rr/t batteries and his voiding-- " he's still > going!! " he holds a good gallon or more i bet, havent > really measured, i know on the occassonal times he > wets the bed, his good-nights pull up is drenched > clear through, uuugh. shawna. > > ===== > shawna > > Thanks a, I did that yesterday during a conversation with the behav. neuro's nurse. He isn't on anything that could be causing it so I scheduled an appt with a ped. urologist. I also scheduled an appt with the nearest down syndrome clinic to get a fresh look at things from someone who knows the issues in ds. It was funny talking to the nurse at the ds clinic about sleep issues and behavior. They always want to give you the simple quick fix. Sleep study, tonsils and adenoids out, thyroid. After I did the been there, done that routine she decided he should be seen. I wanted to tell her that if it was that easy I would have figured everything out long ago. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 In a message dated 3/27/2002 10:28:36 PM Eastern Standard Time, KVanRyzin@... writes: > I also scheduled an appt with the nearest down syndrome clinic to > get a fresh look at things from someone who knows the issues in ds. Hi All, I have never taken Zeb to a DS clinic but only to the genicist. He tends to be the authority on DS in this area. He didn't have much to say. Zeb was 4 at the time. Do you think it would be worth finding a clinic and what do they exactly do? We have an appt with ped. urologist tomorrow. I am hoping for a few answers with the PP issues. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 In a message dated 3/27/2002 10:28:36 PM Eastern Standard Time, KVanRyzin@... writes: > I also scheduled an appt with the nearest down syndrome clinic to > get a fresh look at things from someone who knows the issues in ds. Hi All, I have never taken Zeb to a DS clinic but only to the genicist. He tends to be the authority on DS in this area. He didn't have much to say. Zeb was 4 at the time. Do you think it would be worth finding a clinic and what do they exactly do? We have an appt with ped. urologist tomorrow. I am hoping for a few answers with the PP issues. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 In a message dated 3/27/02 10:42:26 PM Central Standard Time, charlyne1121@... writes: > Hi All, > I have never taken Zeb to a DS clinic but only to the genicist. He tends to > > be the authority on DS in this area. He didn't have much to say. Zeb was 4 > at > the time. Do you think it would be worth finding a clinic and what do they > exactly do? We have an appt with ped. urologist tomorrow. I am hoping for a > > few answers with the PP issues. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > Charlyne, I am doing it because I feel like all the drs. I'm dealing with look at little parts of and know a bit about ds. None of them have enough experience or specialization in ds to look at the complexity of . I also feel like the drs compare him now to 5 years ago and think he is doing great. He has come a long way but life is far from easy for . I guess you have to decide what you are looking for and whether the clinic can offer that for you. For us I want someone to look at things from a ds perspective. Is he having reflux issues again? Is it treatable? What can we do about sleep? Are we on the right track with behavior meds? All this amounts to how can we improve 's quality of life (I hate that term) in concrete ways. I feel that still has things going on physically that we have not addressed. I don't know where they originate but he is obviously (to me) uncomfortable in his body some days. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 In a message dated 3/28/02 11:34:40 AM Eastern Standard Time, KVanRyzin@... writes: > I feel that still has things going on physically that we have not > addressed. I don't know where they originate but he is obviously (to me) > uncomfortable in his body some days. > > Karyn > Yes karyn, I think you're wise to go. I say leave no stone unturned. Good luck. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 In a message dated 3/28/2002 11:34:31 AM Eastern Standard Time, KVanRyzin@... writes: > I am doing it because I feel like all the drs. I'm dealing with look at > little parts of and know a bit about ds. Hi Karyn, Thanks for clarifying that for me. I agree with your staement. The dr. asked me today what type of school he was in and if he could read. I asked him what difference does that make for urology. He just wanted to know. I swear!!! We were in his office 5 min. with oh he is okay. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 In a message dated 3/28/02 2:33:20 PM Central Standard Time, charlyne1121@... writes: > > Hi Karyn, > Thanks for clarifying that for me. I agree with your staement. The dr. > asked > me today what type of school he was in and if he could read. I asked him > what > difference does that make for urology. He just wanted to know. I swear!!! > We > were in his office 5 min. with oh he is okay. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > Charlyne, Was this a pediatric urologist? I'm figuring a plain old urologist would be clueless for us. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 In a message dated 3/28/02 2:33:20 PM Central Standard Time, charlyne1121@... writes: > > Hi Karyn, > Thanks for clarifying that for me. I agree with your staement. The dr. > asked > me today what type of school he was in and if he could read. I asked him > what > difference does that make for urology. He just wanted to know. I swear!!! > We > were in his office 5 min. with oh he is okay. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > Charlyne, Was this a pediatric urologist? I'm figuring a plain old urologist would be clueless for us. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 In a message dated 3/29/2002 1:31:10 PM Eastern Standard Time, KVanRyzin@... writes: > Was this a pediatric urologist? I'm figuring a plain old urologist would be > clueless for us. Hi Karyn, No, this was a ped. urologist that is on staff at the local children's hospital.I'm sure Zeb was not the person he ever saw with DS. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 In a message dated 3/29/02 1:26:35 PM Central Standard Time, charlyne1121@... writes: > > Hi Karyn, > No, this was a ped. urologist that is on staff at the local children's > hospital.I'm sure Zeb was not the person he ever saw with DS. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > Don't tell me this. ARGGG. I don't want to think that our trip may be a waste. At least it is in town and I don't have to drive 2 hours. Karyn Quote Link to comment Share on other sites More sharing options...
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