Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 send my prayers out to them!!!!!! Steph and Noelle heather@... wrote: ---------------------------- Original Message ---------------------------- Subject: Re: [Groupmail] From: heather@... Date: Tue, March 11, 2008 1:14 pm To: groupmail@... ---------------------------------------------------------- Update: Hi everyone.....I just got off the phone with and she asked that I update you all on . He had his jacket applied yesterday in Melbourne, and had to be rushed to the emergency room in the middle of the night for trimming. He was purple, had very low sats, and was not feeling well....I believe he had vomitted a few times, as well.... Apparently, he had developed a case of cast syndrome due to the tightness, and the chest expansion window was not sufficient (big enough), and no hole on the concavity. I know I am leaving out some very important details, but Mo can give you all of that when she can get back on line...This is unacceptable for . He is too fragile to undergo casting done wrong. Our children deserve better. I will update more as soon as I can. Please send Mo and your strength, and I will post again as soon as I hear back from her. )ISOP) > Hi , > > > > Yes I agree, we do have to go public and tell Shanice's story, so that we can make this treatment available in Australia for children like Shanice, and all the other kids who will eventually need to have surgery. At > the moment I really don't know what is going on with our funding application. It seems her specialists can't get their acts together. We see her respiratory specialist next week but haven't had any response from Dr Woodland about the funding since our initial meeting. We don't see him again until the end of the month, we can't wait that long. We feel so angry > that precious time is being wasted. They are playing with our child's life > and we can't watch and wait anymore for them to do something. This has been > going on for far too long now. It seem like the only person who gives a dam > is Dr , I received his submission yesterday, it is about 2 inches thick and contains correspondence and supporting evidence of the benefits of > the VEPTR treatment. The more we read of this life extending treatment the > more determined we are to help find a way to make it available in Australia. > One of the documents I received, mentioned briefly about the future of the VEPTR and how they are currently working on making it self expanding to eliminate the number of follow up surgeries. > > > > Do you think you would be able to put me in touch with your contact for TodayTo Night? We are getting very desperate now; the way things are going > we are not very confident we are going to get our funding so we have to find > another way of getting Shanice treated. We were even thinking of starting to fund raise now as we don't want to waste anymore time. Can you let me know how we go about it? > > > > Shellie I think you are right we do need to advocate to make the treatment available in Australia, it would be fantastic if Dr could come here > to teach the Aussie surgeons what to do. I really don't understand why they > don't support this type of treatment over here. > > > > I spoke with yesterday; she said she was going to Sydney in April to > seek an opinion from Angus Gray and another orthopaedic surgeon. She was also keen on contacting Dr . It sounds like her daughter also needs > something done quite quickly. She has been in halo traction for three months. It seems like they do it very differently in Brisbane. She has been cared for at home and also goes to school everyday in her halo walker. > told me that there were about four or five kids in halos and that one > nine year old had just come out of hers and had a fusion. It sickens me to > think that the surgeons over here think that is the only solution. > > > > thanks for your kind words I feel like we are so close but yet so far > from getting this treatment for Shanice, but we are not going to give up that's for sure. > > > > Well I better go now have to be up in a few hours. > > > > Take care everyone, > > > > > > > > I am re-sending this message, I actually sent it early hours of this morning > but it was sent back. Hope it works this time > > > > > > > > _____ > > _______________________________________________ > Groupmail mailing list > Groupmail@... > http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosiskidsaustra\ lia.com > _______________________________________________ Groupmail mailing list Groupmail@... http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosiskidsaustra\ lia.com --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 sandi, i have never heard on the cast group of any other children developing cast syndrome, and monique herself said she is not entirely sure that nathan had it. with the proper cutouts, it seems as if his symptoms went away. does nathan also have a heart condition -- i could be confusing him with someone else. quick google: Cast Syndrome - Discussion: - cast syndrome results from obstruction of third portion of the duodenum by superior mesenteric artery leading to high intestinal obstruction; - in the past, it occurred most often following Harrington rod instrumentation for scoliosis which was followed by application of a body cast; - Clinical Findings: - typical presentation: is abdominal pain, distension and vomiting following application of a spica cast; - Treatment: - treatment consists of NG tube suction and IV fluid for 3 to 4 days; - occassionally these symptoms are intractable and require surgery consisting of a side to side duodenojejunostomy; more interesting discussion: http://www.hawaii.edu/medicine/pediatrics/pemxray/v5c16.html more technical: http://www.emedicine.com/ped/topic2175.htm i do not believe we were ever told of the risk of cast syndrome since this is supposed to be a gentle correction of the curve. the risk that always was put forth was that of anaesthesia. very, very minor. hope that helps, deshea _______________________________________________________________________________ mom to lucas (6 yrs old) and ruby (3 yrs old and a handful!) north of boston, ma lucas was diagnosed with infantile scoliosis at 18 mos 68o/45o spinal detethering due to a tight/fatty filum at 22 mos tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma serial plaster casting from 2 1/2 until 4 1/2 yrs old at shriners in erie, pa now in a spinecor brace at 24o/18o from montreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 darrell, sorry i haven't kept up with the group so well recently and missed dylan's problems with the cast. i'm so sorry to hear that he went through that. as for my son lucas, he is almost 6 1/2 yrs old and has been done with casting for almost 2 years now. still in a brace but doing wonderfully. my best, deshea ---- Original message ---- >Date: Wed, 12 Mar 2008 16:27:48 -0000 > >Subject: [Fwd: Re: [Groupmail] ] >To: infantile_scoliosis > > Hey Deshea > > I think its definatly something you should be aware > of. When Dylan > was casted the second time a year ago he vomiting > problems. He had a > IV for 22 hours and I had to cut the cast off. This > cast had no > cutouts basically a tube top from his hips to > underarms. > > Dylans 1st cast in SLC we had the the same problem. > Dylan was casted > on tuesday and he was sick until thursday and still > on IV. Dr. > D'Astous told me thursday morning that by lunch if > Dylan dose'nt > tolerate the cast he would remove it. > > On thursday Dylan had bowel movements like three in > a row and then > he was fine. So I think the two are related maybe > the pressure from > the cast on the intestine and bladderand just > blocking everything up > causeing constipation. I think that was our problem > in SLC because we > had the necessary cutouts. Dylan did great in that > cast for 10 weeks. > > The cast here was just on way to tight and was NOT a > GOOD thing to > have happen. That was Dylans second cast and the > last time we had a > cast with no cutouts. > > This cast he has now we have had no problems but its > only been a week. > > Darrell > > Dylans > > > > sandi, > > > > i have never heard on the cast group of any other > children > developing cast syndrome, and monique herself said > she is not > entirely sure that nathan had it. with the proper > cutouts, it seems > as if his symptoms went away. does nathan also have > a heart > condition -- i could be confusing him with someone > else. > > > > quick google: > > > > Cast Syndrome > > > > - Discussion: > > - cast syndrome results from obstruction of third > portion of > the duodenum by > > superior mesenteric artery leading to high > intestinal > obstruction; > > - in the past, it occurred most often following > Harrington rod > instrumentation for scoliosis > > which was followed by application of a body cast; > > > > - Clinical Findings: > > - typical presentation: is abdominal pain, > distension and > vomiting following application of a spica cast; > > > > - Treatment: > > - treatment consists of NG tube suction and IV > fluid for 3 to 4 > days; > > - occassionally these symptoms are intractable and > require > surgery consisting of a side to > > side duodenojejunostomy; > > > > more interesting discussion: > > > http://www.hawaii.edu/medicine/pediatrics/pemxray/v5c16.html > > > > more technical: > > http://www.emedicine.com/ped/topic2175.htm > > > > i do not believe we were ever told of the risk of > cast syndrome > since this is supposed to be a gentle correction of > the curve. the > risk that always was put forth was that of > anaesthesia. very, very > minor. > > > > hope that helps, > > deshea > > > > > __________________________________________________________ > _________ > > mom to lucas (6 yrs old) and ruby (3 yrs old and a > handful!) > > north of boston, ma > > > > lucas was diagnosed with infantile scoliosis at 18 > mos 68o/45o > > spinal detethering due to a tight/fatty filum at > 22 mos > > tlso and charleston brace from 18 mos to 2 1/2 yrs > old at > children's boston, ma > > serial plaster casting from 2 1/2 until 4 1/2 yrs > old at shriners > in erie, pa > > now in a spinecor brace at 24o/18o from montreal. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 I have only been a memeber of this group since we applied to have our Son casted in SLC in December(6th cast). I just never posted about it before. I just kinda said we had problems. I have never read about it before until now. Now I know its not just my kid. Darrell > > > > > > sandi, > > > > > > i have never heard on the cast group of any other > > children > > developing cast syndrome, and monique herself said > > she is not > > entirely sure that nathan had it. with the proper > > cutouts, it seems > > as if his symptoms went away. does nathan also have > > a heart > > condition -- i could be confusing him with someone > > else. > > > > > > quick google: > > > > > > Cast Syndrome > > > > > > - Discussion: > > > - cast syndrome results from obstruction of third > > portion of > > the duodenum by > > > superior mesenteric artery leading to high > > intestinal > > obstruction; > > > - in the past, it occurred most often following > > Harrington rod > > instrumentation for scoliosis > > > which was followed by application of a body cast; > > > > > > - Clinical Findings: > > > - typical presentation: is abdominal pain, > > distension and > > vomiting following application of a spica cast; > > > > > > - Treatment: > > > - treatment consists of NG tube suction and IV > > fluid for 3 to 4 > > days; > > > - occassionally these symptoms are intractable and > > require > > surgery consisting of a side to > > > side duodenojejunostomy; > > > > > > more interesting discussion: > > > > > http://www.hawaii.edu/medicine/pediatrics/pemxray/v5c16.html > > > > > > more technical: > > > http://www.emedicine.com/ped/topic2175.htm > > > > > > i do not believe we were ever told of the risk of > > cast syndrome > > since this is supposed to be a gentle correction of > > the curve. the > > risk that always was put forth was that of > > anaesthesia. very, very > > minor. > > > > > > hope that helps, > > > deshea > > > > > > > > __________________________________________________________ > > _________ > > > mom to lucas (6 yrs old) and ruby (3 yrs old and a > > handful!) > > > north of boston, ma > > > > > > lucas was diagnosed with infantile scoliosis at 18 > > mos 68o/45o > > > spinal detethering due to a tight/fatty filum at > > 22 mos > > > tlso and charleston brace from 18 mos to 2 1/2 yrs > > old at > > children's boston, ma > > > serial plaster casting from 2 1/2 until 4 1/2 yrs > > old at shriners > > in erie, pa > > > now in a spinecor brace at 24o/18o from montreal. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 We have also had issues like this with Sophia. The last cast she had done in Chicago (end of Januray)- she basically didn't eat after it was on and would barely take enough Pedisure in a bottle to stay hydrated. (She's 17 months by the way, so should be eating table food). After a week and a half, she started vomiting even that up up to and beyond 8-10 hours after she had drank it. No constipation or diahria though. We had to cut the cast off and she was hospitalized with IV fluids. The docs said her stomach and bowel had shut down (one said it was like her system " had gone to sleep " ). 48 hours with the cast off and with lots of IV fluids, everything kind of kick started. I had concerns with that specific cast from the start since the front cut out was not big enough and not centered in my opinion. They had been going back and forth with even doing a cut out in the back. I had specifically requested that we have one on the cast in question, but it was very small compared to what Dr .. , Dr. Metha, and Dr. Khoury have done with her. It was also very tight around the stomach, not just he hips- more so than previous ones. We had a new cast applied in Birmingham, AL with no problems. This one has the largest front cut out to date and a substantial cut out in back. She came out of anesthesia hungry and hasn't stopped eating since (2/14 casting)!! I can't help but think it is all related somehow. Maybe not the true " cast syndrome " but something similar going on. It's good to be aware, ask questions and go with your instincts! -------------- Original message -------------- Hey Deshea I think its definatly something you should be aware of. When Dylan was casted the second time a year ago he vomiting problems. He had a IV for 22 hours and I had to cut the cast off. This cast had no cutouts basically a tube top from his hips to underarms. Dylans 1st cast in SLC we had the the same problem. Dylan was casted on tuesday and he was sick until thursday and still on IV. Dr. D'Astous told me thursday morning that by lunch if Dylan dose'nt tolerate the cast he would remove it. On thursday Dylan had bowel movements like three in a row and then he was fine. So I think the two are related maybe the pressure from the cast on the intestine and bladderand just blocking everything up causeing constipation. I think that was our problem in SLC because we had the necessary cutouts. Dylan did great in that cast for 10 weeks. The cast here was just on way to tight and was NOT a GOOD thing to have happen. That was Dylans second cast and the last time we had a cast with no cutouts. This cast he has now we have had no problems but its only been a week. Darrell Dylans > > sandi, > > i have never heard on the cast group of any other children developing cast syndrome, and monique herself said she is not entirely sure that nathan had it. with the proper cutouts, it seems as if his symptoms went away. does nathan also have a heart condition -- i could be confusing him with someone else. > > quick google: > > Cast Syndrome > > - Discussion: > - cast syndrome results from obstruction of third portion of the duodenum by > superior mesenteric artery leading to high intestinal obstruction; > - in the past, it occurred most often following Harrington rod instrumentation for scoliosis > which was followed by application of a body cast; > > - Clinical Findings: > - typical presentation: is abdominal pain, distension and vomiting following application of a spica cast; > > - Treatment: > - treatment consists of NG tube suction and IV fluid for 3 to 4 days; > - occassionally these symptoms are intractable and require surgery consisting of a side to > side duodenojejunostomy; > > more interesting discussion: > http://www.hawaii.edu/medicine/pediatrics/pemxray/v5c16.html > > more technical: > http://www.emedicine.com/ped/topic2175.htm > > i do not believe we were ever told of the risk of cast syndrome since this is supposed to be a gentle correction of the curve. the risk that always was put forth was that of anaesthesia. very, very minor. > > hope that helps, > deshea > > __________________________________________________________ _________ > mom to lucas (6 yrs old) and ruby (3 yrs old and a handful!) > north of boston, ma > > lucas was diagnosed with infantile scoliosis at 18 mos 68o/45o > spinal detethering due to a tight/fatty filum at 22 mos > tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma > serial plaster casting from 2 1/2 until 4 1/2 yrs old at shriners in erie, pa > now in a spinecor brace at 24o/18o from montreal. > Quote Link to comment Share on other sites More sharing options...
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