Guest guest Posted December 24, 2010 Report Share Posted December 24, 2010 Hi, Everyone.....MB....All I can say is *Ditto*. You said it so nicely!!! Merry Christmas and best wishes for a happy, healthy, and safe holiday, Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Beth, Thank you. I can't agree with you more on the importance of our group. I joined only 8 months ago, and feel that I have friends, allies, knowledgeable advisors, people who share similar experiences, goals, and dreams. I have learned so much and though I'm not as knowledgeable as some on the list, I have tried to contribute when I can. We are fortunate that the advent of the computer/internet has given us the ability to connect with each other.  All the best, Irene sister to  ________________________________ To: Sent: Sun, May 15, 2011 10:45:47 AM Subject: Irene & All, and a note about Chicoine and McGuire  Irene and All, Wow! I found your post to be very powerful on many levels. First and foremost, CONGRATULATIONS!! You did it- you got your dear brother the care that he needed. I was very moved by your description of how you worked through problem after problem, and got the treatments that he needed. I also extend these congratulations to everyone here who responded to 's needs. This is the best example of why our list is so important. I am still processing the information that I gleaned from a day conference with Chicoine and McGuire, the authors of The Guide to Good Health for Teens & Adults With Down Syndrome and Mental Wellness in Adults With Down Syndrome..... I hope to be posting more about all of this in the next few days. The main thing I sensed while listening to their incredibly helpful, warm, and insightful presentation is that our kids, our loved ones, are first and foremost impacted by having that extra chromosome in ways that make them more alike others with Down syndrome whether or not they also have autism. I would say it is even more important to look to the Down syndrome associations for supports as our loved enter adulthood, as some new medical and emotional issues begin to emerge during this stage. More to follow. Beth, Pete's Mum > > Dear friends, > Thank you all very much for your advice and support. came out of the > hospital yesterday. He went through quite an ordeal, and we along with him. >He > > wound up having 2 colonoscopies because the nurse told us half the bottle of > go-lightly (the gook they give you to drink the night before) would be enough. > > We were tempted not to put him through it a second time, but are glad we did. > They found out has a prolapsed rectum, in addition to hemmorhoids, >which > > explains the heavy bleeding. He also had a small polyp which they removed and > sent for biopsy.  He also got an EKG for the first time in his life and an > echocardiogram. We had to fight to get the echo. My mother was convinced they > > were neglecting because of his disability. After we had asked for it > several times over the course of 3 days, they came in the room to do an echo on > > the other patient who was admitted after . At that point, my mother > flipped out and the technician agreed to do it. > > > When we got to the hospital, would not come out so we had to wait until > > the Ativan kicked in. I took Lori's advice and went in myself to register him > and explain the situation. We got him out of the car, by using the beach chair > > we carry around, which is somewhat of a security blanket for . He > refused to go into the wheelchair they brought so they had to come out with a > gurney and lift him into it. Luckily, we avoided having to wait in the er > waiting room which was a zoo. > > > Margaret, I remembered you when this happened. If didn't cause such a > commotion, we would have been stuck waiting to get into the er for several > hours. At the end of his stay, we had the same problem. Though he kept asking > > to go home, again he was afraid to walk through the hall to leave. Security >had > > to lift him into the wheelchair to get him out. > > Lori, your advice on explaining the situation to helped me in preparing > > him. He understood why we were putting him through this. After the first > colonoscopy, when he came out of anesthesia, he said " hemmorhoids. "   He also > said, " doctor said, "  which was his way of asking " what did the doctor say? "  > and he seemed okay with our explanation. I didn't have time to look up " social > > stories " but I will do so now. > > Charlyne, my mother and I stayed with him the whole time. I agree with you on > the fact that you can't leave our kids or the elderly alone in a hospital. In > addition to lack of staff, they make so many mistakes. At one point, one of >the > > nurses was briefing the other when they were changing shifts and told her that > had seizures. I overheard it and informed them this was not true. She > > said that the er had written this in his chart. Another nurse was giving him > water to drink which was prohibited before the colonoscopy. > > This experience convinced me to get a smartphone. I was not able to use email > for 4 days and missed advice which would have been very helpful. > > , they gave the go-lightly and he became extremely sick before >the > > second colonoscopy. He was up all night in pain and nauseous. They had to >give > > him intravenous medication for cramps and vomiting. I will keep your >suggestion > > of the Miralax mix in mind when he gets his next colonoscopy in 5 years. > > Debby, we never even thought to ask for a private room. It would have made a > big difference and there were empty beds, so we may have gotten it.  He had no > > problem drinking the horrible potion. Maybe if he had, they would have given > him the Miralax mix, which wouldn't have made him so sick. > > Thank you all very much. I appreciate it. > > Irene > sister to > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Glad to hear Gareth did well! Terry Beth Hi, Everyone....MB....Gareth faired a lot better the second time around. Just a quick 15 minute flushing and he was home in half the time of the first surgery. It's a shame they had to put him out for that, but what else could they do? The doc didn't want Gareth swinging his arms at him......the ENT said it was too close to the eyes and brain for a *mistake* . He still tells me his left ear hurts, but the doc said that's good.....Gareth is relating to the pain of a perforated ear drum. Gosh.......at 23 y/o, he's just learning !!! As for the infusions, his PCP says no since it's too early in the scientific community to tell if the results are worth it. We have a second opinion next month with an Immunologist to see what he says. I finally was able to track down where this IvG 4 deficiency report came from....his Pediatrician in Lancaster......5 yrs ago!!! They never told me anything about it. I think it was in with a mess of blood work completed when he was first dx'd with the esophageal dismotility and Scleroderma. Hope PB is doing better. Has he settled down from the new den/bathroom, etc? Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Hi Margaret, So glad to hear that Gareth is doing well! All the best, Irene sister to ________________________________ To: Sent: Sat, May 21, 2011 6:57:23 PM Subject: Beth  Hi, Everyone....MB....Gareth faired a lot better the second time around. Just a quick 15 minute flushing and he was home in half the time of the first surgery. It's a shame they had to put him out for that, but what else could they do? The doc didn't want Gareth swinging his arms at him......the ENT said it was too close to the eyes and brain for a *mistake* . He still tells me his left ear hurts, but the doc said that's good.....Gareth is relating to the pain of a perforated ear drum. Gosh.......at 23 y/o, he's just learning !!! As for the infusions, his PCP says no since it's too early in the scientific community to tell if the results are worth it. We have a second opinion next month with an Immunologist to see what he says. I finally was able to track down where this IvG 4 deficiency report came from....his Pediatrician in Lancaster......5 yrs ago!!! They never told me anything about it. I think it was in with a mess of blood work completed when he was first dx'd with the esophageal dismotility and Scleroderma. Hope PB is doing better. Has he settled down from the new den/bathroom, etc? Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Yeah for Gareth and that indomitable Margaret. > > > Hi Margaret, > So glad to hear that Gareth is doing well! > All the best, > Irene > sister to > > ________________________________ > > > To: > Sent: Sat, May 21, 2011 6:57:23 PM > > Subject: Beth > > > Hi, Everyone....MB....Gareth faired a lot better the second time around. > Just a quick 15 minute flushing and he was home in half the time of the > first > surgery. It's a shame they had to put him out for that, but what else > could they do? The doc didn't want Gareth swinging his arms at him......the > > ENT said it was too close to the eyes and brain for a *mistake* . He still > tells me his left ear hurts, but the doc said that's good.....Gareth is > relating to the pain of a perforated ear drum. Gosh.......at 23 y/o, he's > just learning !!! As for the infusions, his PCP says no since it's too > early > in the scientific community to tell if the results are worth it. We have > a second opinion next month with an Immunologist to see what he says. I > finally was able to track down where this IvG 4 deficiency report came > from....his Pediatrician in Lancaster......5 yrs ago!!! They never told me > anything about it. I think it was in with a mess of blood work completed > when > he was first dx'd with the esophageal dismotility and Scleroderma. > > Hope PB is doing better. Has he settled down from the new den/bathroom, > etc? > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2011 Report Share Posted May 22, 2011 Hi, Beth, I'm so glad that Gareth's procedure went well. . Keep us posted about the infusions! Sent from my iPhone > Hi, Everyone....MB....Gareth faired a lot better the second time around. > Just a quick 15 minute flushing and he was home in half the time of the first > surgery. It's a shame they had to put him out for that, but what else > could they do? The doc didn't want Gareth swinging his arms at him......the > ENT said it was too close to the eyes and brain for a *mistake* . He still > tells me his left ear hurts, but the doc said that's good.....Gareth is > relating to the pain of a perforated ear drum. Gosh.......at 23 y/o, he's > just learning !!! As for the infusions, his PCP says no since it's too early > in the scientific community to tell if the results are worth it. We have > a second opinion next month with an Immunologist to see what he says. I > finally was able to track down where this IvG 4 deficiency report came > from....his Pediatrician in Lancaster......5 yrs ago!!! They never told me > anything about it. I think it was in with a mess of blood work completed when > he was first dx'd with the esophageal dismotility and Scleroderma. > > Hope PB is doing better. Has he settled down from the new den/bathroom, > etc? > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2011 Report Share Posted May 24, 2011 Margaret, Glad to hear you have the sinuses done (for now, yeah, I know!) but hopefully Gareth is already more comfortable. Have you noticed any difference in his behavior/energy/etc.? Haha - so far as the " verbal loops " go, well, Pete does that too. He tells us every day " Nonni in heaven " , as well as " Dad hospital. But he's okay " and " Bob ( caregiver) went to Alaska. He's back. " (Bob went to Alaska about five years ago.) HAHAHAHA Are we a little crazy yet? He's back into his routines with his fixed up den- (we upgraded it from " playroom " to " den " - probably closer to " man-boy cave " ) and is fine with the new bathroom. However, he is definitely in a new phase with us old fogie parents. Trying to figure out a new bedtime routine because he's been wacky for us after about 9 pm every night. Had a few manic episodes - I like to describe them as " Pete's evil twin showed up " - and we are systematically looking at everything. Right now all signs are it's classic teenager behavior- directed straight at his old parents. All the factors that I just listed for ) have been ruled out. So it's behavioral and I probably need a fairly strict visual schedule for him so he can earn his favorite thing in the world- photos of his Uncle Pete. We have an appointment tonight with a psychiatrist who works with children and adults with dual dx mental health needs!! He's part of the Dual Diagnosis Clinic at the Nisonger Center that is affiliated with OSU and works across many disciplines. We have also been working hard on Pete's transition plan. He is eligible for one more year under our school district, and we are trying to figure out something creative for what happens after that. Fortunately, our school district has new staff that are all about serving EVERYONE when it comes to transition, and I am pinching myself to have folks who look forward to the exciting challenge of designing a plan for Pete. People being helpful! WOW! MB > > Hi, Everyone....MB....Gareth faired a lot better the second time around. > Just a quick 15 minute flushing and he was home in half the time of the first > surgery. It's a shame they had to put him out for that, but what else > could they do? The doc didn't want Gareth swinging his arms at him......the > ENT said it was too close to the eyes and brain for a *mistake* . He still > tells me his left ear hurts, but the doc said that's good.....Gareth is > relating to the pain of a perforated ear drum. Gosh.......at 23 y/o, he's > just learning !!! As for the infusions, his PCP says no since it's too early > in the scientific community to tell if the results are worth it. We have > a second opinion next month with an Immunologist to see what he says. I > finally was able to track down where this IvG 4 deficiency report came > from....his Pediatrician in Lancaster......5 yrs ago!!! They never told me > anything about it. I think it was in with a mess of blood work completed when > he was first dx'd with the esophageal dismotility and Scleroderma. > > Hope PB is doing better. Has he settled down from the new den/bathroom, > etc? > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2011 Report Share Posted May 24, 2011 Verbal loops - like that term. Before we went to the gathering for Ms. na, Elie was into hsi extreme verbal bursts of semi understandable language (we call it sino-chinese) but nothing to do with the topic - just very energetic speech which we have come to see as one expression of anxiety - he does react somewhat to soothing noises - although he continues with the speech. And all gone by the time we got to the gathering where he was the MR Perfect - shaking hands, hugging when it looked approriatae, saying sorry Ms na gone, etc. * MB - make plans with these wonderful people while you have them - and plan how you will function without them! We are now learning the hard way that people are transient - plans better not be attached to people. * > > > > > Quote Link to comment Share on other sites More sharing options...
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